Transition experiences from childhood to adulthood in individuals with Tuberous Sclerosis Complex (TSC) and the use of smartphone monitoring: A qualitative analysis of parent perspectives.

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Kate Fifield, Katie Blackford, Benjamin Snaith, Sara Simblett, and 1 more This is a preprint; it has not been peer reviewed by a journal. https://doi.org/ 10.21203/rs.3.rs-5826894/v1 This work is licensed under a CC BY 4.0 License Status: Posted Version 1 posted You are reading this latest preprint version Abstract Background Young adults with rare genetic conditions, such as Tuberous Sclerosis Complex (TSC), and their parents/caregivers can experience challenges in daily life during the transition from childhood to young adulthood. Smartphone ecological momentary assessment (smart EMA) has the potential to address limitations in standardised cross-sectional assessments as it can provide detailed information on daily challenges and fluctuations. Although some young adults with TSC use smartphones, many still require the support of parents/caregivers to communicate their feelings or access technology. Framework analysis was used to explore the hypothetical acceptability of the use of smart EMA from parent/caregiver perspectives in monitoring the daily experiences of young adults with TSC. Results Seven parents of young adults with TSC (Female = 6, age range 54:64) participated in online focus groups. Four main themes were generated. The first two themes describe the experiences of becoming a young adult with TSC for both the young adults and their parents (Impact of Transition and Impact of TSC on Young Adulthood). The third theme explains how a smart EMA app could be integrated into young adults and parents’ everyday lives to support independence (How an EMA App Could Help). The final theme describes what would help or stop the young adults and their parents from using the app (Hypothetical Barriers and Facilitators). This includes familiarity with questions and behaviours, sharing the app between caregivers and the need for personalisation. Conclusions Young adults with TSC continue to present with associated psychiatric difficulties which are associated with continued and new concerns for parents. There are multiple ways in which smart EMA could be integrated into supporting young adults with TSC utilising parent or caregiver support. However, consideration must be taken into the design and protocol of a smart EMA app to ensure its appropriateness for the varied level of support young adults with TSC require. Further testing of hypothesised moderators is required to conclude the feasibility and acceptability of smart EMA for young adults with TSC and other rare genetic diseases who continue to require parent/caregiver support for daily functioning. Tuberous Sclerosis Complex Ecological Momentary Assessment Experience Sample Method focus group qualitative young adult parent smartphones rare disease. Figures Figure 1 Figure 2 Figure 3 Figure 4 Background Tuberous Sclerosis Complex (TSC) is a rare genetic disorder which causes benign growths or tubers to appear in multiple organs (Yates, 2006). TSC prevalence worldwide is estimated between 1:6000 and 1:11000 live births, accounting for undiagnosed cases (Northrup et al., 2021; O'Callaghan et al., 1998). TSC mainly occurs through sporadic mutations with germ-line mutations accounting for less than a quarter of cases (Astrinidis & Henske, 2005; Dabora et al., 2001; Kingswood et al., 2016; Osborne et al., 1991; Rosser et al., 2006; Slegtenhorst et al., 1997). Clinical presentations of TSC can be highly variable between individuals and within an individual's lifetime. Some individuals will require intensive specialised care from birth whereas others with mild symptoms may not get diagnosed until late adulthood (Harrison & Bolton, 1997). Alongside physical symptoms of TSC, most individuals will experience TSC-Associated Neuropsychiatric Disorders (TAND). TAND is an umbrella term coined to describe the behavioural, academic, neuropsychological, psychiatric, intellectual and psychosocial problems in TSC (De Vries et al., 2018). As with physical symptoms of TSC, TAND phenotypic presentations also change throughout an individual’s lifetime (Yates et al., 2011). With advancements in treatments, more and more children with TSC can expect to live to adulthood and a normal life expectancy (Amin et al., 2017). However, the experience of children with TSC undergoing this key transitional period is understudied. As with other long-term conditions, young adults with TSC must manage changes in clinical care, education, employment, living situations and legal processes. This influx of change can often exacerbate TAND symptoms present in childhood. In addition, autism, ADHD and Intellectual Disability (ID) can lead to a higher prevalence of difficulties including social isolation, anxiety and depression in adulthood (Bar et al., 2019; Memarzia et al., 2015). It is only recently through the self-report TAND checklist (Heunis et al., 2023) that neuropsychiatric problems in TSC have been focused on in this transitional period and adulthood. Young adults with TSC are not alone in having to navigate this transitional period. Parents and caregivers are often involved in supporting the development of their young adult’s autonomy (Willis & McDonagh, 2018). They also may relinquish part of their roles to other Key Support Persons (KSPs) in their young adult life, such as romantic partners or formal carers. In their qualitative synthesis of transition in long-term health conditions (LTCs), Heath et al. (2017) found that this role change can be difficult for caregivers as they feared negative consequences. Research from Lotstein et al. (2009) demonstrates that young adults who are more affected by their health condition are less likely to discuss their care needs, which corroborates the caregiver’s fears. This has been evidenced in the TSC population by Rentz et al. (2015) who found that during the transition to adulthood, parental stress in parents of children with TSC increases significantly, often due to trying to navigate adult healthcare services. Overall, many parents and caregivers remain as KSPs and continue to care for their young adults with TSC in their everyday lives. It is, therefore, crucial to include the experiences and views of parents and caregivers of young adults with TSC in any new clinical care, research initiatives, assessments or treatments. Smartphone EMA (Smart EMA) is a novel remote monitoring and assessment technique. It utilises smartphones to capture everyday experiences or symptoms of individuals via repeated questionnaires over a number of days or weeks (Myin-Germeys & Kuppens, 2022). There are many potential benefits of smart EMA for young adults with TSC, including overcoming cognitive difficulties in recalling emotions and experiences and allowing at-home monitoring and assessment, removing the need to travel for specialised support. However, due to TAND co-morbidities such as ID and learning disabilities, young adults with TSC may require additional support to access smart EMA compared to non-TSC young adults. A previous systematic review indicated that smart EMA was feasible for individuals with cognitive difficulties (Fifield et al., 2024). However, there was only one paper included in the review with individuals with ID, limiting the conclusions of feasibility. Parents and caregivers have often been utilised in EMA research where the validity of self-report has been compromised, for example, in youth ADHD research (Babinski & Welkie, 2020; Rosen et al., 2013; Rosen & Factor, 2015). Importantly, parents and caregivers have also been used in a supporting role for individuals who may be able to use smart EMA to self-report but still face barriers to using technology, such as those with ID (Wilson et al., 2020). Wilson and colleagues also gathered feedback from the parents of the participants who provided valuable insight into the accessibility of the EMA, such as needing longer and louder notifications due to participant audio processing difficulties and the validity of the EMA, such as some participants responding in a socially desirable way rather than their true feelings. These findings indicate the importance of including parent and other KSP experiences in the design of adult EMA studies. Currently, there has been no research exploring the use of smart EMA in parents or caregivers of young adults with TSC or other rare genetic conditions. Therefore, the aim of this study is to explore the experiences of parents and caregivers of young adults with TSC, their attitudes and opinions on the hypothetical feasibility of smart EMA and to understand the accessibility and appropriateness of using smart EMA in young adults with TSC. This study accompanies a sister study which explored the experiences and use of smart EMA in young adults with TSC (Anonymised for review et al., in review). Methods Aims To explore the experiences of parents and caregivers of young adults with TSC. To examine the attitudes and opinions of caregivers on the hypothetical feasibility of using EMA in daily life for young adults with TSC. To understand the accessibility and appropriateness of EMA for young adults with TSC, via parent or caregiver report, which will guide the protocol development for a following in vivo feasibility study. Design, Participant Selection and Sampling This study applied a mixed-method approach based on focus groups and questionnaires. Using convenience sampling, participants were recruited via email and telephone through the prospective longitudinal Tuberous Sclerosis 2000 (TS 2000) study cohort (Tye et al., 2020), the Tuberous Sclerosis Association (TSA) charity research network and respective social media. Participants were eligible if they were a KSP of a young adult aged 17–30 with a diagnosis of TSC. A KSP is defined as a parent, carer (informal and formal), partner or other family member aged 18 and above who sees the young adult every day or is involved in their care. Ethical approval was granted by King’s College London Health Faculties Research Ethics Subcommittee (Ref: HR/DP-22/23-34436). Written informed consent was obtained from all participants. Participant Characteristics Six mothers and 1 father (average age of 59.6 years old, range 54:64) were recruited. The average age of their young adults was 20.9 years old (range 17:23). See Fig. 1 for the recruitment flowchart. See Table 1 for participant characteristics. Two focus groups were conducted (group 1: n = 4, group 2: n = 3) and the mean focus group time was 69 minutes. Table 1 Participant Characteristics Participant characteristics Parent (N = 7) Age (years), mean (range) 59.57 (54:64) Gender, % (N) Female 85.7 (6) Male 14.3 (1) Ethnicity, % (N) White - British 100 (7) Employment, % (N) Employed full time 42.9 (3) Employed part time 28.6 (2) Self-employed 14.3 (1) Retired 14.3 (1) Education, % (N) Higher or secondary or further education 28.6 (2) University 28.6 (2) Post-graduate degree 42.9 (3) TSC Diagnosis, % (N) Yes 14.3 (1) No 85.7 (6) Smartphone use, % (N) Yes 100 (7) Relationship to YP, % (N) Mother 85.7 (6) Father 14.3 (1) Age (years) of TSC YP, mean (range) 20.86 (17:23) Researcher characteristics Focus groups were conducted by KF (Female PhD student working on the research project) and supported by one female undergraduate placement student (KB) and one male undergraduate final-year student (BS). KF met with the student immediately after each focus group to debrief and make notes. KF had previous experience running research interviews in a clinical setting and running focus groups in a university student sample. KF also had clinical therapeutic experience working with similar participants. These characteristics were acknowledged to have influenced the final interpretation. Please see Additional File 1 for a reflexivity statement. Participants had no prior relationship with the researchers or knowledge of the researcher’s motivations. However, the majority of participants had been recruited from a longitudinal cohort study (Yates et al., 2011), which may have influenced their views on the proposed research tool. Study Procedure and Setting The whole study procedure was conducted remotely via the telephone and online. One focus group was conducted using Microsoft Teams. In the first focus group, a TSA charity representative observed but did not participate in the groups. The second focus group was conducted using Zoom due to technical difficulties. All questionnaires and consent forms were completed via Qualtrics (Qualtrics, 2020). All participants were screened for their eligibility over the phone. They then completed consent forms via Qualtrics. Demographic forms were completed and then the participants were invited to participate in an online focus group. The focus groups were semi-structured using a topic guide (available on request) and adapted from a previous qualitative study (Simblett et al., 2018). Word clouds were used as an ‘icebreaker’ before the main discussion began (see Figs. 2 and 3). At the end of the focus groups, all participants completed the Modified Computer Self-Efficacy Scale. Measures The Modified Computer Self-Efficacy (Laver et al., 2012) was used to assess hypothetical self-efficacy with using the smart EMA app. This scale has been validated in individuals with disabilities. Minor modifications were made to the wording of the scale (‘Unfamiliar technology’ was changed to ‘smartphone app’). Total scores are summed out of 100 with higher scores indicating greater technology efficacy. All other measures were bespoke. Analysis Focus groups were audio and video recorded, transcribed verbatim and checked. All transcripts were anonymised. Qualitative analysis was conducted using NVivo (version 14; QSR international, Melbourne, Australia). Framework analysis (Ritchie & Spencer, 2002) was applied as we had predefined areas we wanted to understand (facilitators and barriers to smartphone EMA apps) but were also open to emergent codes and themes within the context of the participant's experience of caring for a young adult with TSC. After familiarisation, KF developed an initial basic codebook informed by predefined questions and emergent ideas from the familiarisation stage. KB then used this codebook to recode the data. KF and KB then worked together through many iterations to develop a theoretical framework or ‘codebook’. This framework was applied to the transcripts using a framework matrix to understand the ‘fit’ of the data and quotes were assigned to the relevant categories. Participant’s quotes were then summarised and overall summaries for each category and case were defined. Patterns and concepts were then sought and labelled as themes and sub-themes. After the first refinement of themes and subthemes, these were shared with the participants. Two participants responded and agreed that the results matched their experience. Results were reported following the Consolidated Criteria for Reporting Qualitative Research (COREQ checklist) (Tong et al., 2007), see Additional File 2 for checklist. Descriptive and computer self-efficacy scale statistics were analysed using SPSS statical analysis software (Version 29, IBM). Results EMA App Self-Efficacy The average app self-efficacy score was, out of 100, M = 90.57 (SD=6.65). For the participants, ‘If I had a lot of time to complete the questions which the app asked’ was rated with the highest confidence. ‘If I had never used an app like it before’ was rated with the lowest confidence. See Table 2 for scores. Table 2. Responses to the Modified Computer Self-Efficacy Scale after the focus groups Item Score 1 2 3 4 5 6 7 8 9 10 Total No previous use 0 0 0 0 0 0 2 4 1 0 55 No help available 0 0 0 0 0 0 1 2 3 1 60 Only manual instructions 0 0 0 0 0 0 1 2 3 1 60 Only built-in help available 0 0 0 0 1 0 0 0 5 1 60 Similarity to other apps 0 0 0 0 0 1 0 0 2 4 64 Help available 0 0 0 0 0 0 0 2 0 5 66 Observed use 0 0 0 0 0 0 0 0 3 4 67 Help started 0 0 0 0 0 0 0 1 1 5 67 Demonstration 0 0 0 0 0 0 0 1 1 5 67 Time to complete 0 0 0 0 0 0 0 0 2 5 68 (Scored from 1 = not at all confident to 10 = completely confident). Qualitative results The parent views were captured in four major themes with sub-themes divided across them (See Figure 4). The first theme described how TSC has impacted the young person’s life according to their parents. The second theme describes how becoming a young adult has impacted the parent, their young person and their independence. The third theme describes how an EMA app could help currently and, in the future, when the parent is less present. The fourth theme describes the hypothetical barriers and facilitators of the EMA app. 1. Impact of Transition on Young Adult and Parent This theme describes how their children becoming young adults impacted the parents, the young adults themselves and the independence of the young adults. 1.1 Impact on young person Most participants spoke about the loss of specialised health services for young adults with TSC, which was detrimental to their young adults. Losing a centralised support service and instead having to go to individual centres for each TSC symptom was difficult for the young adults and was especially exacerbated in those seeking support for mental health difficulties. PID 8: “Used to have a doctor, a consultant who supervised everything. Now, it's all…you go one place for the heart, you go another place for the brain, and it's so disjointed. Whereas before, it felt as if there was a doctor looking at everything and making sure she was at- you know, keeping things under control.” Employment is a key step in becoming a young adult. But, for those who struggle to reach this milestone, like young adults with TSC, this can be very demoralising. This can also lead to or further exacerbate mental health difficulties which were already present from the teenage years. PID 11 : “He's tried applying for part time jobs and he doesnt get anywhere so that just adds to his conf- lack of confidence and- feeling like he's not worth living, kind of.” Some participants described positive experiences for their young adults where, now not being a child and having to ‘fit’ into certain groups, they had managed to find individuals more like them and forge friendships. PID 13:“ For my daughter, uhm, I think turning eighteen has been quite nice, she’s—cause’s she’s gone to college and left school. She’s finding more people on her, uhm, own wavelength. So I feel like she’s got a few more friends now than she may’ve done before However, this was not shared by all the parents, with many describing how their young adult felt lonelier in adulthood. PID 11: “I’m... from my viewpoint he is struggling a lot with mental health at the moment, feeling lonely, feeling like he's got no friends.” 1.2 Impact on parent The parents discussed how they experienced a change in their own role as their teenager became a young adult. For the parents, losing automatic access to their young adults' care information and, in turn, losing the ability to easily advocate for their young adults was difficult. PID 18: “And kind of the, uhm, y’know managing the benefits system, the—you lose that, uhm…it’s not a right to advocacy, but you lose that ability to easily advocate. You can advocate for your children but when they become young adults it’s a lot harder, I think.” This dejection in losing their ability to advocate for their young adult demonstrates a mistrust that external support services can care effectively for their young adults. One participant described how clinical professionals did not understand that her young adult, who may have a learning disability, was unable to answer questions and make decisions effectively, and this had not suddenly changed now she was over 18 years old. PID 5: “Battles just gotten tougher. When you were under 18, it was some sort of controlled. Now, even with 'daughter', when I take her, there is this bit of uhm concern on autistic spectrum, this might be a learning disability. They think when they asked her questions and she answers them, effectively or appropriately and she doesn’t…so you know its a constant battle with consultants trying to explain that, you know that the parents need to be listened to and you can’t take onboard everything”. 1.3 Impact on independence The participants discussed how both the parent and the young adult want the young adult to be independent and have a typical young adult experience. PID 11: “Son’s priority is just to try and socialise to meet people, whether it is a local part time job or anything just- he's actually made the decision now that he wants- we couldn’t get him out of the house before so, at least it is his decision now that he want to get out more. Anything that helps him build his confidence really, and meet people.” Some participants spoke about how they had experienced some typical experiences, such as having to ‘let go’ of the control over their young adult's lives so they could achieve independence. PID 13: “So I feel like she’s got a few more friends now than she may’ve done before, uhm, and she is finding her independence. And sometimes that is a bit scary (clears throat), uhm, but obviously, it’s different for each of us, uhm, and the scary bit is, uhm, kind of letting go as well and find her own way, but I suppose it’s like that as well with all teenagers anyway regardless of if they’ve got TS or not.” However, reflecting the range of TSC presentations, this was not shared by all participants, as some participants discussed how their young adult would never achieve independence due to their TSC symptoms. PID 4: “With ‘daughter’, there’ll never be independence because she’s so immature…so, developmental delays and things” Despite the range in independence, most participants spoke about how their young adults now need support other than their parents to have typical experiences. External support such as supported living and state-provided care and activities were discussed as essential for the participants and their families. PID 4: “Uhm, well for me it’s for her to be able to go out to clubs and things, to be able to do things, otherwise she’d just be at home all the time. ‘daughter’ would, uhm—so without the support, uhm, and its council provided, without that she would be at home most of the time and I wouldn’t be able to go to work…so supports…to-to be able to go out into the community’s the biggest thing for us.” 2. Impact of TSC on a young adult’s life. This theme describes how TSC affects every young adult differently, but there are shared difficulties across the community. 2.1 Young adult life with TSC The majority of participants were aware that TSC can affect each young adult differently and how there is a wide spectrum of abilities. They discussed how this may make it difficult to develop a monitoring app suitable for all young adults with TSC. PID 16: “So, uh—an app that’s aimed at a young adult with TS…that’s a big ask, isn’t it? Cause you’ve got your young adults with TS who go to outlook ( annual charity event for mildly affected individuals with TSC) or y’know have some anxieties or, uhm, y’know, have some issues, but they’re functioning day-to-day independently. And then you’ve got everything in between.” Participants spoke about how it has been hard to navigate sudden changes in health status, such as increased epileptic seizures, in their young adults. PID 5: “But also see, her.... uhm, her changes, she has terrible mood swings…But this all goes back to, see two years ago when she fainted and its taken her a long time to get back to sort of normal, if you can call it that.” They shared that all the young adults wished to do was to return to their previous health status, even though this may not have been as a ‘typical’ young adult, this was their goal for quality of life. The changes in physical health symptoms also led to changes in cognitive ability for young adults, which, at a time when they are required to make more independent decisions, further increases the barriers to independence. PID 18: “So the capacity, so, y’know really struggling to understand complex decisions” Because of physical health and cognitive difficulties, some participants spoke about how their young adults required increased support compared to typical young adults. PID 8: “She can’t read, she can identify certain things, but she can’t really read. She really needs twent-Twenty-four seven care.” 2.2 Current app tracking The parents discussed how some of their young adults already track their daily lives through apps, with support from their parents. These included physical health such as menstrual cycles and headaches, mental health such as overwhelming feelings, cognitive functioning such as problem-solving and specific TSC symptoms such as epilepsy PID 16: “I—I, uhm, when ‘daughter’ at home, I track her seizures on an app.” PID 18: “we used “Brain In Hand” for quite a while with ‘daughter’. Uhm. To help with that kind of problem solving" The motivation for using apps was, for many participants, to have their information all in one place rather than have paper files, which were often hard to organise. “I go to appointments and I think “oh no, I’ve forgotten my, y’know, reems of pages about her seizure diary” (PID 16). 3. How Could an EMA App Help This theme describes how the proposed EMA app could support young adults currently, with their parent present and in the future, when they might be without their parents to help. 3.1 Now The participants expressed how using an app to communicate with health professionals may increase their validity as an informer for their young adult. One reason for this focused on that the technology looked more ‘professional’ than ‘homemade’ paper and pen. Other participants discussed that it helped make the parents themselves seem more ‘professional’ by standardising their responses and removing the carer sentiment that may had led to their opinions being dismissed in the past. PID 16: “I think as well, using the app, I know it sounds a bit odd, really, but, it kinda looks a bit more professional than, uhm, and a bit more—in some ways—believable than-than, your notebook or your little “1-2-3-4-5” cross-chart of seizures. It looks a bit more legitimate” Being able to track everyday experiences in the app was seen to help both the parent and the young adults. For the parents, being able to view patterns of behaviour, implement changes and see the impact on every-day life would be useful. PID 16: “I agree with what 18K and 13K have said. For me it would be about seeing patterns and links that I miss otherwise” This may be especially useful for the young adults with TSC who struggle to explain why they are feeling certain emotions. Using the app could pick up on the triggers or relationships without having to ask the young adult to explain. PID 8: “And its just- even with times like where she’s commented it in the last five minutes, she’s really upset, she can’t say why she’s upset. She’s just upset.” For the young adults, one parent expressed how being able to see previous responses allies with their personality strength of polarised thinking patterns. PID 11: “Yeah, because if he can see it in black and white, then at that point he did and he answered happy, then in his head it means he can- he knows that like- cause when he feels sad, he feels that's it, its always sad and he can’t remember happy. So if he can see it written down ‘at that point I said happy’, then he knows he can get back there, does that make sense? He knows that it does exist cause its written down.” Tracking everyday experiences may be especially useful for detecting subtler TAND symptoms that can still have a large impact on a young adult’s quality of life. Participants expressed hope that picking up these symptoms may lead to more preventive care rather than often delayed curative or reactive care. 18: And I think those are things that are harder to-to grasp…a bit more below this wisp, aren’t they? Those kind of…those fluctuations, and I think it becomes our norm, so you-you don’t notice it quite the same. But then we could be missing something that actually could be really beneficial if we could get the right support at the right time… Overall, most participants agreed that using an app to track everyday experiences would provide more data that could be used in evidence-based decisions for many difficulties and symptoms their young adults face. 3.2 In the future without parent support For many participants, the concern for their young adults in the future, when the parent may not be as available, was evident by expressing that the app could support their young adult’s independence, especially in healthcare settings. PID 16: “I think that would be really useful in, uh, medical appointments, because that’s just not a question that my daughter can answer.” With greater independence and communication with others, the young adults may be able to take on the parental role of advocacy and being able to self-advocate for themselves and the TSC community. PID 18: “If it’s about something that going to benefit the wider TS community in terms of their, you know, uhm, being able to advocate for themselves or attend hospital appointments or capture that information as we’re getting older and-and not around quite—you know if it’s that kind of continuity of care TSC’s multi-organ and spectrum phenotype may allow it to benefit greatly from having a ‘all-in-one’ approach which an app can support. Being able to record every possible symptom of TSC may reduce the burden on individuals and families, especially during the first stages of navigating disjointed adult healthcare. PID 18: I was thinking it would be so useful to have one app that we could record all those things on. So…we could record the seizures on, we could record, uhm, y’know her headaches in the same place, we could record, uh, perhaps her mood and anxiety, uhm, all those kind of y’know, with the new TAND guidelines, all those kind of TAND type questions so that-that we could track all those things, so we had the one app to take to an appointment with us that was tracking all of those…” 4 Hypothetical Barriers and Facilitators This theme describes what participants thought would make it easier for themselves and their young adults to use the EMA app and what would make it harder to use the EMA app. 4.1 What would make it easy to use the EMA app Personal strengths of the young adults with TSC were seen as facilitators for using the app. These included honesty with responding to questions and adherence to requests to use the app. The broken-down nature of EMA questions would also co-work well with many of the young adult’s strengths reported by the participants. PID 5: “My daughter would do it, if she was told it was needed by the hospital, so you have to follow the rules. She would follow the rules. ” Due to the variety in presentations of young adults with TSC, tailoring, not just the design of the app to increase accessibility, but the outcomes for each individual as well, would increase use of the EMA app. PID 18: “I guess being able to tailor it would help us if we were trying to gather information just for our young person” Letting participants decide who is answering the EMA questions was attractive to the participants as they know their young adults may be able to answer it themselves or need a KSP to answer it on their behalf. Integrating the app into current care and utilising formal carers would further support this. PID 18: “they’re choosing not to share stuff with you, they’re choosing to share it with other people, or because other people are looking after them, that kind of app that can be shared then becomes quite attractive.” Using question responses that are familiar to the young adults, such as what they use in school or at home, would also support the accessibility of the app to the young adults. Participants spoke about how this was mainly two choice responses and not multiple graded scales. Increasing familiarisation of the app with the young adults through suitable training methods and ensuring they knew what was required of them, for example how long they would need to use the app for, would further facilitate use. PID 16: “So, uhm, she could-she could pick the happy face and the not happy face. “I’m happy taking to somebody and not talking to somebody”…that would be okay. It’s that graded…”extremely”…”moderately”…” In addition, using emotions the parents recognise within their young adults would facilitate using parent report if the young adult was unable. PID 16: “you’re just overlaying on it the things that you are confident that you can either understand from your daughters behaviour or she can tell you“ One participant also discussed how short broken-down scaled questions are easily anonymised which was appealing to them as it often falls to the participant to ensure information privacy for their young adult. PID 16: “I need to be very cautious on her behalf about what information was being shared. Or what information was in it…if it’s anything more than something that’s easy to anonymise like an—like a scale. Like…that’s easy to anonymise, isn’t it?” Visually appealing and entertaining were required aspects of the app commonly discussed by the participants. These engaging features were paramount for their young adult to even just attend to the app, let alone sustain its use. PID 11: “I think in what you demo-ed in some were words and radio boxes and somewhere pictures. I think a combination like that will probably keep him interested, if that makes sense.” 4.2 What would make it harder to use the EMA app. Difficulties in using the EMA app were divided into external and TSC barriers. External barriers refer to barriers not dependent on the young adult’s ability or TSC severity. One external barrier was the parent could not always support their young adult with using the app. As the young adult’s care is more likely to be shared or they are out of the house more often, parents could not always be present to support their young adult with using the app. Even in the parents were present, the time taken to support the young adult was perceived as burdensome. PID 16: “but I would agree with 4K, for my daughter who I’m guessing is…I-I don’t want to make judgements here but, from what 4K has said, my daughter is more cognitively able than hers, but that still would not be accessible and I would feel that to be quite onerous because I would need to be reading out all the questions, reminding her to do it…”oh that’s that ping, remember what that ping’s for, oh now we’ve got what we’re doing, you to do this”…or whoever’s supporting her at the time” In addition to the parents not being present to help, other life constraints such as being in university or training lectures where they can’t use their phone would reduce their use of the app. A further external barrier was concerns regarding privacy. Some participants discussed how if the information the young adults put into the app were not private, they would be less likely to share their experiences. PID 13: “Yeah. The person who’s filling it in, if they think it’s private…so for my daughter, I think if she thought it was private, she might write more in it than if she thought someone else was reading it” TSC barriers refer to those factors potentially exacerbated by the young adults TSC diagnosis. One barrier shared within the group was how the young adults could not always express their feelings via an app due to the nature of the questions and how they are asked. This included the type of emotions the app asks about, asking via words not pictures, providing too many choices and asking for a gradation of feelings. PID 18: “I do wonder if ‘daughter’ might find it a bit difficult to choose sometimes. She struggles if she has too many choices to make a choice” PID 8: “Self-esteem, that’s not relevant….cause she- she doesn’t have any idea of self-esteem, you know. She’s either happy or sad“ PID 4: “But, no, she can’t read. She has trouble, she can barely read her own name.” Furthermore, using parent reports instead could not always overcome this barrier as the young adults could not express these feelings to their parents for them to report. PID 16: “And then it-it-she’s reliant on my interpretation of how I think she’s been feeling over the last two weeks, which might not actually be how she’s been feeling because what will stick out for me will be the negatives, and that-that might not stick out for her.” Participants also discussed how may be difficult to motivate their young adults to use the app, for example when they are low in mood or struggling to regulate their emotions. Traditional incentives such as payment or visual rewards may fail to overcome this barrier. Struggling to meet the expectations of the app could lead to overwhelming feelings and further reduce use of the app. PID 11: I think it really depends whether he’s had poor mental health. Um, he would do it initially, but if he gets really down cause of his mental- mental health at the moment, then he would not want to do it, if that makes sense. Struggling to meet the expectations of the app could lead to overwhelming feelings for some of the young adults and further reduce the use of the app. One factor shared by the group was the time limitations. Either some young adults may not understand the concept of having a limited time to complete the questionnaire or would need increased time to complete them due to cognitive difficulties. PID 11: I guess, just the timing, cause for 'son' concept of time- so if he’s got ten minutes to complete, he might not complete it in ten minutes cause he always takes a bit longer to read it and then go through it so that kind of thing. It’s not so much that he would get up, walk away. It’s just, I’m not sure he can do it within- he takes longer than other people would to answer things. Discussion The present study explores the experiences of parents and caregivers of young adults with TSC and their attitudes and opinions on using smart EMA to support their young adult's daily lives. This study contributes to the evidence that smart EMA may be feasible and acceptable for moderately or mildly affected young adults with TSC. This supports findings from a sister study that qualitatively explored smart EMA with young adults with TSC (author hidden to ensure anonymity., 2024 in review). Furthermore, these findings can be generalised to other young adults with long-term health conditions that may present with co-morbid neuropsychiatric conditions. However, to be accessible for all young adults with TSC, significant adaptation and personalisation from traditional EMA procedures will need to occur. Difficulties after transitioning to young adulthood were reported in the young adults with TSC by the parents. Adverse changes in physical health symptoms were common in their young adults which led to rising TAND challenges. For those participants whose young adults had not experienced significant changes in their physical health, difficulties with typical young adulthood milestones, such as finding employment, continued or led to the development of TAND symptoms. This is in line with previous profiling of adults with TSC, where close to half reported psychological distress (Pulsifer et al., 2007) and in themes found in previous qualitative exploration with mild to moderately affected young adults with TSC (author hidden to ensure anonymity., 2024 in review ). This also suggests there is continued interplay between physical health, neuropsychological and mental well-being in most young adults with TSC, even those with less physical health symptoms. This has been found previously in adults with epilepsy that even those with seizure remission are still at increased risk of adverse psychosocial outcomes in adulthood (Geerlings et al., 2015). Young adults with TSC, therefore, require support from adult healthcare services. However, unlike paediatric care, the parents reported disjointed services that were often unmanageable for their young adult without the support of their parents. For a multi-organ disease like TSC, the effects of these unsuitable systems are amplified and are a familiar occurrence across other European countries (Bar et al., 2019; Hamer et al., 2018). Adult healthcare requires independence in managing your own healthcare needs, and often, these services are not set up in a way that allows parents and caregivers to continue to support a young adult, as evidenced by the parents in the current study. The parents described how they want to support the independence of their young adults in managing and communicating their own health needs and evidenced this by describing other m-health tracking apps they currently use or have tried. However, without an identified healthcare professional ‘in charge’ of their child, such as a paediatrician, the parents spoke about how they still had a role to play at the beginning of their young adult’s TSC healthcare management (Rentz et al., 2015). How Smart EMA Could Help Now Smart EMA was viewed by the parents as a way to support their current requisite role by increasing their ‘professionalism’ in reporting their young adult's experiences to clinicians. By using technology, the parents hypothesised that they could continue to advocate for their young adult but in a way that clinicians can endorse. Furthermore, due to the multi-symptom nature of TSC, having one app to record all the different symptoms, which can then be viewed overall or filtered by specialised clinicians, was viewed as an important benefit of smart EMA by the parents. Tantamount to ‘TAND’ being created as a “shared language” for the TSC community (De Vries et al., 2018), smart EMA may act as a facilitator of this language across young adults, their parents or caregivers, researchers and healthcare professionals. Overall, communication between young adults, parents, other KSPs and healthcare professionals may be supported by the use of smart EMA. Individuals with mental health conditions (Bos et al., 2019; Murnane et al., 2016) and adolescents with chronic conditions (Nap-van der Vlist et al., 2021) have also hypothesised this communication benefit. Participants also predicted that by using smart EMA, they or their young adults would be able to track their everyday experiences and observe patterns in behaviours, and, in turn, this would lead to self-management of symptoms. The participants noted that this may be especially useful for the more ‘subtle’ TAND symptoms that do not have apparent triggers or solutions, likely those at the behavioural and psychosocial TAND level, such as depressed mood or self-esteem issues. The parents noted that even their young adult just being able to see previous feelings ‘in black and white’ may be enough to indicate behavioural change. This prediction was mirrored in young adults, with TSC reporting that “an EMA app would help you to understand yourself” (author hidden to ensure anonymity., 2024 in review ). This also supports findings in mental health research where personalised feedback reports from depression treatment with integrated EMI resulted in participants' qualitatively reporting an increase in self-awareness and an increased sense of control over difficulties (Folkersma et al., 2021). This study did not find any statistical change in clinical outcomes in the participants, but they also did not include any self-management or insight measures as quantitative outcomes, likely missing this effect. The parents reported in the current study that their young adults sought independence in their daily lives. Therefore, by using EMA an increase in self-efficacy for young adults with TSC to manage their everyday experiences may be observed. Some parents in our study reported they would be completing the questionnaires on behalf of their young adult who has difficulty reporting or explaining their emotions. Smart EMA may reduce the burden for parents or caregivers of having to interpret their young adult’s feelings in order to communicate this with others. By the parents or caregivers reporting the young adult's behaviour and their environment, smart EMA itself can identify the patterns and causal relationships rather than relying on the parent's or caregiver’s interpretation (Myin-Germeys & Kuppens, 2022). It may also be a useful tool for monitoring responses to treatment changes, such as epilepsy medication. Healthcare professionals have expressed concern about the validity of proxy reports in EMA for paediatric health quality of life (Fraser et al., 2024), however, EMA’s characteristics of in-the-moment reporting can help overcome retrospective bias, which has been evidenced in caregivers' reports of conditions such as autism (Jones et al., 2015), epilepsy and mild intellectual disabilities (Zimmermann & Endermann, 2008). How Smart EMA Could Help in the Future Parents reported they or their young adults are already using self-tracking apps for their everyday experiences and symptoms and in the current study, most of the parents were positive about using smart EMA for their young adults. This supports the acceptability and feasibility of implementing technology into long-term health condition research and clinical services. One benefit of smart EMA is that it can also be integrated into other mobile or electronic systems for a multimodal approach. An example is wearable technology which, when combined with smart EMA, can amalgamate active and passive monitoring to provide an overall picture of everyday activity, symptomology and environmental factors. Examples of this approach include pollution sensing and child asthma inhaler use (Hao et al., 2022), diabetes management and blood glucose levels (Nam et al., 2021) and sleep patterns and suicide ideation (Littlewood et al., 2019). In TSC specifically, there is a TSC TAND app currently being developed, which will include a TAND self-assessment questionnaire (TAND-SQ) and a self-help toolkit, personalised to the individual's TAND profile (Heunis et al., 2022). Smart EMA can provide rich data on daily fluctuations, which can be combined with stable TAND profiles observed with the TAND-SQ to help inform current symptomology. Our findings of predicted high self-efficacy scores in the parents to be able to use smart EMA back the suitability of using mobile technology in TSC research and care. Future EMA Research Requirements To use smart EMA in future TSC research that can inform a clinical evidence base, accessibility of the EMA structure must be considered. The majority of the parents discussed how the presented hypothetical EMA protocol (informed by smart EMA research in non-clinical populations) was unsuitable for their young adults. If young adults with TSC were required to use smart EMA without parents or caregiver support, increasing time to answer prompts, reducing verbal load and increasing visual information, dichotomous questions, and extensive training, including information about data privacy, should be considered. Reducing the perceived burden of the smart EMA is especially important as the parents reported that traditional research incentives such as payment would not motivate their young adults to use smart EMA. As reported by the parents in our study, interactivity and gamification could be used as a motivation tool. For those young adults with TSC who would require proxy reporting by their parents or caregivers, further adaptations would be required. Some of the parents reported that their young adults now have their care shared between different KSPs. To ensure young adults' experiences are captured comprehensively, smart EMA must be able to be shared between different KSPs, including parents and formal carers. Questions must also be personalised to match the behaviours the parents and other KSPs can recognise. Basic emotions such as ‘happy’ or ‘sad’ may be more relevant than more abstract emotions such as ‘confident’ or ‘lonely’, as they may be interpreted incorrectly for TSC young adults who cannot voice these feelings explicitly. Using images may also aid valid reporting. Although there were shared requirements and suggestions across our participants, the variability in their young adults’ abilities to use EMA was stark. As shown in previous scoping reviews of EMA in individuals with ID (Bakkum et al., 2024), personalisation of smart EMA to each individual level within a condition like TSC is key to its feasibility and acceptability. Future research should utilise Patient and Public Involvement (PPI) to guide smart EMA adaptation and personalisation. Limitations All of our parent sample young adults were less than 24 years old, reducing capture to emerging adulthood. Older young adults (25–30 years old) who have had time to adjust to changes in daily life in adulthood may demonstrate differing views on using smartphone EMA. Our sample also only consisted of parents of young adults with TSC and no other KSPs. This may reduce our understanding of the feasibility of smart EMA in young adults who received support from other KSPs such as formal carers, romantic partners or siblings. However, research highlights that parents and caregivers are still present in young adults with TSC regardless of age (Skrobanski et al., 2023), suggesting our themes may still be applicable to older young adults with TSC, their parents or caregivers or young adults with other KSPs present in their lives. Our sample size is small and does not reach the reported ‘sample size for data saturation in qualitative work (Guest et al., 2006; Guest et al., 2017). Time limits and a limited population to recruit from impacted our sample size. However, our sample did include parents who cared for young adults with TSC with a diverse range of TAND symptoms, from developmental delay to those with mildly affected functioning. Due to this and recent discussions around data saturation in qualitative research (Braun & Clarke, 2021), we prioritise the meaningfulness of our codes and themes and allowed the participant respondent validation guide our confidence in the results. Conclusion This study explored the appropriateness of using smart EMA in young adults with TSC from the perspective of their parents. Several themes around how young adults may use smart EMA emerged through helping manage the transition from childhood to adulthood, navigating adult healthcare services and increasing self-management of TAND symptoms. For the parents, themes around validating their proxy reporting and supporting their young adults' independence were highlighted. Hypotheses for the adaptation of smart EMA for both young adults and parents or caregivers were generated: increasing time limits, balancing verbal and visual material, dichotomous questions, extensive training, familiar items and sharing capabilities. These variables should be evaluated in future studies to contribute to the feasibility and acceptability of smart EMA with young adults with TSC and other long-term health conditions who continue to require parent or caregiver support. Abbreviations EMA Ecological Momentary Assessment ID Intellectual Disability INT Interview KSP Key Support Person LTC’s Long Term Conditions PPI Patient and Public Involvement Smart EMA Smartphone Ecological Momentary Assessment TAND TSC-Associated Neuropsychiatric Disorders TAND-SQ Self-Report Quantified Tuberous Sclerosis Complex-Associated Neuropsychiatric Disorders Checklist TSA Tuberous Sclerosis Association TSC Tuberous Sclerosis Complex TS 2000 Study Tuberous Sclerosis 2000 Study Declarations Ethics approval and consent to participate The study was approved by King College London Health Faculties Research Ethics Subcommittee. All participants provided informed consent. Consent for publication NA Availability of data and materials The datasets generated and/or analysed during the current study are not publicly available due to information that could compromise research participant privacy/consent but are available from the corresponding author on reasonable request. Competing interests The authors declare that they have no competing interests. Funding KF is fully funded by a King’s College London Department of Psychology PhD studentship. The funding includes course fees, stipend and research training support grant (RTSG) for the three-year duration of her studentship. The funding body has had no role in the study design, collection, analysis or interpretation of the data, writing the manuscript, or the decision to submit the paper for publication. Authors’ Contributions KF conceptualised and planned the study, wrote focus group and interview schedules, recruited participants, conducted focus groups and interviews, performed qualitative and quantitative analysis, writing and editing of manuscript. KB recruited participants, supported focus groups, and transcribed and qualitatively analysed data. BS supported focus groups and transcribed data. CT reviewed drafts of the paper provided advice and guidance to the project and carefully edited and suggested changes in the manuscript. SS conceptualized and planned the study, oversaw the activities of the study, and carefully edited and suggested changes in the manuscript. All authors read and approved the final manuscript. Acknowledgements We acknowledge the support of the Maudsley Biomedical Research Centre’s Feasibility and Acceptability Support Team for Researchers (FAST-R), who reviewed this research’s recruitment documents. We would like to thank all the participating parents and their families for their time and commitment to the study. We would like to thank the Tuberous Sclerosis Association for their support with recruitment. References Amin, S., Lux, A., Calder, N., Laugharne, M., Osborne, J., & O'callaghan, F. (2017). Causes of mortality in individuals with tuberous sclerosis complex. Developmental Medicine & Child Neurology , 59 (6), 612–617. https://doi.org/https://doi.org/10.1111/dmcn.13352 Astrinidis, A., & Henske, E. P. (2005). Tuberous sclerosis complex: linking growth and energy signaling pathways with human disease. Oncogene , 24 (50), 7475–7481. https://doi.org/https://doi.org/10.1038/sj.onc.1209090 Babinski, D. E., & Welkie, J. (2020). Feasibility of Ecological Momentary Assessment of Negative Emotion in Girls With ADHD: A Pilot Study. Psychological reports , 123 (4), 1027–1043. https://doi.org/doi:10.1177/0033294119838757 Bakkum, L., Paalman, C., Müller, A., van Eeghen, A., & Schuengel, C. (2024). Accessibility and feasibility of experience sampling methods for mental health research with people with intellectual disability: Scoping of research and stakeholder views. Journal of Applied Research in Intellectual Disabilities , 37 (2), e13190. https://doi.org/https://doi.org/10.1111/jar.13190 Bar, C., Ghobeira, R., Azzi, R., Ville, D., Riquet, A., Touraine, R., Chemaly, N., & Nabbout, R. (2019). Experience of follow-up, quality of life, and transition from pediatric to adult healthcare of patients with tuberous sclerosis complex. Epilepsy & Behavior , 96 , 23–27. https://doi.org/https://doi.org/10.1016/j.yebeh.2019.04.027 Bos, F. M., Snippe, E., Bruggeman, R., Wichers, M., & van der Krieke, L. (2019). Insights of patients and clinicians on the promise of the experience sampling method for psychiatric care. Psychiatric services , 70 (11), 983–991. https://doi.org/https://doi.org/10.1176/appi.ps.201900050 Braun, V., & Clarke, V. (2021). To saturate or not to saturate? Questioning data saturation as a useful concept for thematic analysis and sample-size rationales. Qualitative research in sport, exercise and health , 13 (2), 201–216. https://doi.org/https://doi.org/10.1080/2159676X.2019.1704846 Dabora, S. L., Jozwiak, S., Franz, D. N., Roberts, P. S., Nieto, A., Chung, J., Choy, Y.-S., Reeve, M. P., Thiele, E., & Egelhoff, J. C. (2001). Mutational analysis in a cohort of 224 tuberous sclerosis patients indicates increased severity of TSC2, compared with TSC1, disease in multiple organs. The American Journal of Human Genetics , 68 (1), 64–80. https://doi.org/https://doi.org/doi:10.1086/316951 De Vries, P. J., Wilde, L., De Vries, M. C., Moavero, R., Pearson, D. A., & Curatolo, P. (2018). A clinical update on tuberous sclerosis complex-associated neuropsychiatric disorders (TAND). American Journal of Medical Genetics Part C: Seminars in Medical Genetics , 178 (3), 309–320. https://doi.org/https://doi.org/10.1002/ajmg.c.31637 Fifield, K., Hodsoll, J., Kuntsi, J., Tye, C., & Simblett, S. (2024). Completion rates of smart technology ecological momentary assessment (EMA) in populations with a higher likelihood of cognitive impairment: A systematic review and meta-analysis. Assessment , 0–54. https://doi.org/https://doi.org/10.1177/107319112413063 Folkersma, W., Veerman, V., Ornée, D. A., Oldehinkel, A. J., Alma, M. A., & Bastiaansen, J. A. (2021). Patients' experience of an ecological momentary intervention involving self-monitoring and personalized feedback for depression. Internet Interventions , 26 , 100436. https://doi.org/https://doi.org/10.1016/j.invent.2021.100436 Fraser, H., Thompson, L., Crawley, E., Ridd, M. J., & Brigden, A. (2024). " not one size fits all” The challenges of measuring paediatric health-related quality of life and the potential role of digital ecological momentary assessment: a qualitative study. Quality of Life Research , 33 (2), 443–452. https://doi.org/https://doi.org/10.1007/s11136-023-03535-6 Geerlings, R., Aldenkamp, A., Gottmer-Welschen, L., de With, P., Zinger, S., van Staa, A., & de Louw, A. (2015). Developing from child to adult: risk factors for poor psychosocial outcome in adolescents and young adults with epilepsy. Epilepsy & Behavior , 51 , 182–190. https://doi.org/https://doi.org/10.1016/j.yebeh.2015.07.035 Guest, G., Bunce, A., & Johnson, L. (2006). How many interviews are enough? An experiment with data saturation and variability. Field methods , 18 (1), 59–82. https://doi.org/https://doi.org/10.1177/1525822X05279903 Guest, G., Namey, E., & McKenna, K. (2017). How many focus groups are enough? Building an evidence base for nonprobability sample sizes. Field methods , 29 (1), 3–22. https://doi.org/https://doi.org/10.1177/1525822X16639015 Hamer, H. M., Pfäfflin, M., Baier, H., Bösebeck, F., Franz, M., Holtkamp, M., Kurlemann, G., May, T. W., Mayer, T., & Metzner, M. (2018). Characteristics and healthcare situation of adult patients with tuberous sclerosis complex in German epilepsy centers. Epilepsy & Behavior , 82 , 64–67. https://doi.org/https://doi.org/10.1016/j.yebeh.2018.03.006 Hao, H., Eckel, S. P., Hosseini, A., Van Vliet, E. D., Dzubur, E., Dunton, G., Chang, S. Y., Craig, K., Rocchio, R., & Bastain, T. (2022). Daily associations of air pollution and pediatric asthma risk using the biomedical REAI-Time Health Evaluation (BREATHE) Kit. International Journal of Environmental Research and Public Health , 19 (6), 3578. https://doi.org/https://doi.org/10.3390/ijerph19063578 Harrison, J. E., & Bolton, P. F. (1997). Annotation: tuberous sclerosis. Journal of Child Psychology and Psychiatry , 38 (6), 603–614. https://doi.org/https://doi.org/10.1111/j.1469-7610.1997.tb01687.x Heath, G., Farre, A., & Shaw, K. (2017). Parenting a child with chronic illness as they transition into adulthood: a systematic review and thematic synthesis of parents’ experiences. Patient Education and Counseling , 100 (1), 76–92. https://doi.org/https://doi.org/10.1016/j.pec.2016.08.011 Heunis, T.-M., Bissell, S., Byars, A. W., Capal, J. K., Chambers, N., Cukier, S., Davis, P. E., De Waele, L., Flinn, J., & Gardner-Lubbe, S. (2022). Empowering families through technology: a mobile-health project to reduce the TAND identification and treatment gap (TANDem). Frontiers in Psychiatry , 13 , 834628. https://doi.org/https://doi.org/10.3389/fpsyt.2022.834628 Heunis, T.-M., Chambers, N., Vanclooster, S., Bissell, S., Byars, A. W., Capal, J. K., Cukier, S., Davis, P. E., de Vries, M. C., & De Waele, L. (2023). Development and feasibility of the self-report quantified tuberous sclerosis complex-associated neuropsychiatric disorders checklist (TAND-SQ). Pediatric Neurology , 147 , 101–123. https://doi.org/https://doi.org/10.1016/j.pediatrneurol.2023.07.001 Jones, R. M., Risi, S., Wexler, D., Anderson, D., Corsello, C., Pickles, A., & Lord, C. (2015). How interview questions are placed in time influences caregiver description of social communication symptoms on the ADI-R. Journal of Child Psychology and Psychiatry , 56 (5), 577–585. https://doi.org/https://doi.org/10.1111/jcpp.12325 Kingswood, C., Bolton, P., Crawford, P., Harland, C., Johnson, S. R., Sampson, J. R., Shepherd, C., Spink, J., Demuth, D., & Lucchese, L. (2016). The clinical profile of tuberous sclerosis complex (TSC) in the United Kingdom: a retrospective cohort study in the Clinical Practice Research Datalink (CPRD). european journal of paediatric neurology , 20 (2), 296–308. https://doi.org/https://doi.org/10.1016/j.ejpn.2015.11.011 Laver, K., George, S., Ratcliffe, J., & Crotty, M. (2012). Measuring technology self efficacy: reliability and construct validity of a modified computer self efficacy scale in a clinical rehabilitation setting. Disability and rehabilitation , 34 (3), 220–227. https://doi.org/10.3109/09638288.2011.593682 Littlewood, D. L., Kyle, S. D., Carter, L.-A., Peters, S., Pratt, D., & Gooding, P. (2019). Short sleep duration and poor sleep quality predict next-day suicidal ideation: an ecological momentary assessment study. Psychological medicine , 49 (3), 403–411. https://doi.org/https://doi.org/10.1017/S0033291718001009 Lotstein, D. S., Ghandour, R., Cash, A., McGuire, E., Strickland, B., & Newacheck, P. (2009). Planning for health care transitions: results from the 2005–2006 national survey of children with special health care needs. Pediatrics , 123 (1), e145-e152. Memarzia, J., St Clair, M. C., Owens, M., Goodyer, I. M., & Dunn, V. J. (2015). Adolescents leaving mental health or social care services: predictors of mental health and psychosocial outcomes one year later. BMC health services research , 15 , 1–8. https://doi.org/https://doi.org/10.1186/s12913-015-0853-9 Murnane, E. L., Cosley, D., Chang, P., Guha, S., Frank, E., Gay, G., & Matthews, M. (2016). Self-monitoring practices, attitudes, and needs of individuals with bipolar disorder: implications for the design of technologies to manage mental health. Journal of the American Medical Informatics Association , 23 (3), 477–484. Myin-Germeys, I., & Kuppens, P. (2022). The open handbook of experience sampling methodology: A step-by-step guide to designing, conducting, and analyzing ESM studies (2nd digital ed.). Leuven: Center for Research on Experience Sampling and Ambulatory Methods Leuven. Nam, S., Griggs, S., Ash, G. I., Dunton, G. F., Huang, S., Batten, J., Parekh, N., & Whittemore, R. (2021). Ecological momentary assessment for health behaviors and contextual factors in persons with diabetes: A systematic review. Diabetes research and clinical practice , 174 , 108745. https://doi.org/https://doi.org/10.1016/j.diabres.2021.108745 Nap-van der Vlist, M. M., Houtveen, J., Dalmeijer, G. W., Grootenhuis, M. A., van der Ent, C. K., van Grotel, M., Swart, J. F., van Montfrans, J. M., van de Putte, E. M., & Nijhof, S. L. (2021). Internet and smartphone-based ecological momentary assessment and personalized advice (PROfeel) in adolescents with chronic conditions: a feasibility study. Internet interventions , 25 , 100395. https://doi.org/https://doi.org/10.1016/j.invent.2021.100395 Northrup, H., Aronow, M. E., Bebin, E. M., Bissler, J., Darling, T. N., de Vries, P. J., Frost, M. D., Fuchs, Z., Gosnell, E. S., & Gupta, N. (2021). Updated international tuberous sclerosis complex diagnostic criteria and surveillance and management recommendations. Pediatric Neurology , 123 , 50–66. https://doi.org/https://doi.org/10.1016/j.pediatrneurol.2021.07.011 O'Callaghan, F. J., Shiell, A. W., Osborne, J. P., & Martyn, C. N. (1998). Prevalence of tuberous sclerosis estimated by capture-recapture analysis. The Lancet , 351 (9114), 1490. https://doi.org/https://doi.org/https://doi.org/10.1016/S0140-6736(05)78872-3 Osborne, J. P., Fryer, A., & Webb, D. (1991). Epidemiology of tuberous sclerosis. Annals of the New York Academy of Sciences , 615 (1), 125–127. Pulsifer, M. B., Winterkorn, E. B., & Thiele, E. A. (2007). Psychological profile of adults with tuberous sclerosis complex. Epilepsy & Behavior , 10 (3), 402–406. https://doi.org/https://doi.org/10.1016/j.yebeh.2007.02.004 Qualtrics. (2020). Qualtrics . Provo, Utah, USA. https://www.qualtrics.com Rentz, A. M., Skalicky, A. M., Pashos, C. L., Liu, Z., Magestro, M., Pelletier, C. L., Prestifilippo, J. A., Nakagawa, J., Frost, M. D., & Dunn, D. W. (2015). Caring for children with tuberous sclerosis complex: what is the physical and mental health impact on caregivers? Journal of Child Neurology , 30 (12), 1574–1581. https://doi.org/https://doi.org/10.1177/0883073815575364 Ritchie, J., & Spencer, L. (2002). Qualitative data analysis for applied policy research. In Analyzing qualitative data (pp. 173–194). Routledge. https://doi.org/https://doi.org/10.4324/9780203413081-10 Rosen, P. J., Epstein, J. N., & Van Orden, G. (2013). I know it when I quantify it: Ecological momentary assessment and recurrence quantification analysis of emotion dysregulation in children with ADHD. ADHD Attention Deficit and Hyperactivity Disorders , 5 , 283–294. https://doi.org/https://doi.org/10.1007/s12402-013-0101-2 Rosen, P. J., & Factor, P. I. (2015). Emotional impulsivity and emotional and behavioral difficulties among children with ADHD: An ecological momentary assessment study. Journal of Attention Disorders , 19 (9), 779–793. https://doi.org/https://doi.org/10.1177/10870547124630 Rosser, T., Panigrahy, A., & McClintock, W. (2006). The diverse clinical manifestations of tuberous sclerosis complex: a review. Seminars in pediatric neurology , 13 (1), 27–36. https://doi.org/https://doi.org/10.1016/j.spen.2006.01.008 Simblett, S., Greer, B., Matcham, F., Curtis, H., Polhemus, A., Ferrão, J., Gamble, P., & Wykes, T. (2018). Barriers to and facilitators of engagement with remote measurement technology for managing health: systematic review and content analysis of findings. Journal of medical Internet research , 20 (7), e10480. https://doi.org/https://doi.org/10.2196/10480 Skrobanski, H., Vyas, K., Bowditch, S., Hubig, L., Dziadulewicz, E., Fish, L., Takhar, P., & Lo, S. H. (2023). The burden of caring for individuals with tuberous sclerosis complex (TSC) who experience epileptic seizures: a descriptive UK survey. PharmacoEconomics-Open , 7 (2), 299–312. https://doi.org/https://doi.org/10.1007/s41669-023-00387-1 Slegtenhorst, M. v., Hoogt, R. d., Hermans, C., Nellist, M., Janssen, B., Verhoef, S., Lindhout, D., Ouweland, A. v. d., Halley, D., & Young, J. (1997). Identification of the tuberous sclerosis gene TSC1 on chromosome 9q34. Science , 277 (5327), 805–808. https://doi.org/https://doi.org/10.1126/science.277.5327.805 Tong, A., Sainsbury, P., & Craig, J. (2007). Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups. International journal for quality in health care , 19 (6), 349–357. https://doi.org/10.1093/intqhc/mzm042 Tye, C., Mcewen, F. S., Liang, H., Underwood, L., Woodhouse, E., Barker, E. D., Sheerin, F., Yates, J. R., Bolton, P. F., & Group, T. S. S. (2020). Long-term cognitive outcomes in tuberous sclerosis complex. Developmental Medicine & Child Neurology , 62 (3), 322–329. https://doi.org/https://doi.org/10.1111/dmcn.14356 Willis, E. R., & McDonagh, J. E. (2018). Transition from children’s to adults’ services for young people using health or social care services (NICE Guideline NG43). Archives of Disease in Childhood-Education and Practice , 103 (5), 253–256. https://doi.org/https://doi.org/10.1136/archdischild-2017-313208 Wilson, N. J., Chen, Y. W., Mahoney, N., Buchanan, A., Marks, A., & Cordier, R. (2020). Experience sampling method and the everyday experiences of adults with intellectual disability: A feasibility study. Journal of Applied Research in Intellectual Disabilities , 33 (6), 1328–1339. https://doi.org/https://doi.org/10.1111/jar.12753 Yates, J. R. (2006). Tuberous sclerosis. European journal of human genetics , 14 (10), 1065–1073. https://doi.org/https://doi.org/10.1038/sj.ejhg.5201625 Yates, J. R., MacLean, C., Higgins, J. N. P., Humphrey, A., le Maréchal, K., Clifford, M., Carcani-Rathwell, I., Sampson, J. R., & Bolton, P. F. (2011). The Tuberous Sclerosis 2000 Study: presentation, initial assessments and implications for diagnosis and management. Archives of disease in childhood , 96 (11), 1020–1025. https://doi.org/http://dx.doi.org/10.1136/adc.2011.211995 Zimmermann, F., & Endermann, M. (2008). Self–proxy agreement and correlates of health-related quality of life in young adults with epilepsy and mild intellectual disabilities. Epilepsy & Behavior , 13 (1), 202–211. https://doi.org/https://doi.org/10.1016/j.yebeh.2008.02.005 Supplementary Files AdditionalFile.docx Additional File: Word Document - 1) Reflexivity statement, 2) COREQ Checklist. Cite Share Download PDF Status: Posted Version 1 posted You are reading this latest preprint version Research Square lets you share your work early, gain feedback from the community, and start making changes to your manuscript prior to peer review in a journal. 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4","display":"","copyAsset":false,"role":"figure","size":92574,"visible":true,"origin":"","legend":"\u003cp\u003e\u003cstrong\u003eDiagram of Themes Generated.\u003c/strong\u003e\u003c/p\u003e","description":"","filename":"Figure43.png","url":"https://assets-eu.researchsquare.com/files/rs-5826894/v1/985c2e2790060b4482f0928e.png"},{"id":90309620,"identity":"e19194e1-d4bb-4fac-9409-092d5ae3ccb2","added_by":"auto","created_at":"2025-09-01 09:39:55","extension":"pdf","order_by":0,"title":"","display":"","copyAsset":false,"role":"manuscript-pdf","size":1417662,"visible":true,"origin":"","legend":"","description":"","filename":"manuscript.pdf","url":"https://assets-eu.researchsquare.com/files/rs-5826894/v1/b5b814be-b4c1-4f71-9148-61040d1c9ccb.pdf"},{"id":79461083,"identity":"38abe9f1-2568-4b42-b8ae-977aa70803f0","added_by":"auto","created_at":"2025-03-28 17:20:20","extension":"docx","order_by":1,"title":"","display":"","copyAsset":false,"role":"supplement","size":112667,"visible":true,"origin":"","legend":"\u003cp\u003eAdditional File: Word Document - \u003cem\u003e1) Reflexivity statement, 2) COREQ Checklist.\u003c/em\u003e\u003c/p\u003e","description":"","filename":"AdditionalFile.docx","url":"https://assets-eu.researchsquare.com/files/rs-5826894/v1/3077414857bb1fc3112c3f94.docx"}],"financialInterests":"","formattedTitle":"Transition experiences from childhood to adulthood in individuals with Tuberous Sclerosis Complex (TSC) and the use of smartphone monitoring: A qualitative analysis of parent perspectives.","fulltext":[{"header":"Background","content":"\u003cp\u003eTuberous Sclerosis Complex (TSC) is a rare genetic disorder which causes benign growths or tubers to appear in multiple organs (Yates, 2006). TSC prevalence worldwide is estimated between 1:6000 and 1:11000 live births, accounting for undiagnosed cases (Northrup et al., 2021; O'Callaghan et al., 1998). TSC mainly occurs through sporadic mutations with germ-line mutations accounting for less than a quarter of cases (Astrinidis \u0026amp; Henske, 2005; Dabora et al., 2001; Kingswood et al., 2016; Osborne et al., 1991; Rosser et al., 2006; Slegtenhorst et al., 1997). Clinical presentations of TSC can be highly variable between individuals and within an individual's lifetime. Some individuals will require intensive specialised care from birth whereas others with mild symptoms may not get diagnosed until late adulthood (Harrison \u0026amp; Bolton, 1997). Alongside physical symptoms of TSC, most individuals will experience TSC-Associated Neuropsychiatric Disorders (TAND). TAND is an umbrella term coined to describe the behavioural, academic, neuropsychological, psychiatric, intellectual and psychosocial problems in TSC (De Vries et al., 2018). As with physical symptoms of TSC, TAND phenotypic presentations also change throughout an individual\u0026rsquo;s lifetime (Yates et al., 2011).\u003c/p\u003e \u003cp\u003eWith advancements in treatments, more and more children with TSC can expect to live to adulthood and a normal life expectancy (Amin et al., 2017). However, the experience of children with TSC undergoing this key transitional period is understudied. As with other long-term conditions, young adults with TSC must manage changes in clinical care, education, employment, living situations and legal processes. This influx of change can often exacerbate TAND symptoms present in childhood. In addition, autism, ADHD and Intellectual Disability (ID) can lead to a higher prevalence of difficulties including social isolation, anxiety and depression in adulthood (Bar et al., 2019; Memarzia et al., 2015). It is only recently through the self-report TAND checklist (Heunis et al., 2023) that neuropsychiatric problems in TSC have been focused on in this transitional period and adulthood.\u003c/p\u003e \u003cp\u003eYoung adults with TSC are not alone in having to navigate this transitional period. Parents and caregivers are often involved in supporting the development of their young adult\u0026rsquo;s autonomy (Willis \u0026amp; McDonagh, 2018). They also may relinquish part of their roles to other Key Support Persons (KSPs) in their young adult life, such as romantic partners or formal carers. In their qualitative synthesis of transition in long-term health conditions (LTCs), Heath et al. (2017) found that this role change can be difficult for caregivers as they feared negative consequences. Research from Lotstein et al. (2009) demonstrates that young adults who are more affected by their health condition are less likely to discuss their care needs, which corroborates the caregiver\u0026rsquo;s fears. This has been evidenced in the TSC population by Rentz et al. (2015) who found that during the transition to adulthood, parental stress in parents of children with TSC increases significantly, often due to trying to navigate adult healthcare services.\u003c/p\u003e \u003cp\u003e Overall, many parents and caregivers remain as KSPs and continue to care for their young adults with TSC in their everyday lives. It is, therefore, crucial to include the experiences and views of parents and caregivers of young adults with TSC in any new clinical care, research initiatives, assessments or treatments.\u003c/p\u003e \u003cp\u003eSmartphone EMA (Smart EMA) is a novel remote monitoring and assessment technique. It utilises smartphones to capture everyday experiences or symptoms of individuals via repeated questionnaires over a number of days or weeks (Myin-Germeys \u0026amp; Kuppens, 2022). There are many potential benefits of smart EMA for young adults with TSC, including overcoming cognitive difficulties in recalling emotions and experiences and allowing at-home monitoring and assessment, removing the need to travel for specialised support. However, due to TAND co-morbidities such as ID and learning disabilities, young adults with TSC may require additional support to access smart EMA compared to non-TSC young adults. A previous systematic review indicated that smart EMA was feasible for individuals with cognitive difficulties (Fifield et al., 2024). However, there was only one paper included in the review with individuals with ID, limiting the conclusions of feasibility.\u003c/p\u003e \u003cp\u003eParents and caregivers have often been utilised in EMA research where the validity of self-report has been compromised, for example, in youth ADHD research (Babinski \u0026amp; Welkie, 2020; Rosen et al., 2013; Rosen \u0026amp; Factor, 2015). Importantly, parents and caregivers have also been used in a supporting role for individuals who may be able to use smart EMA to self-report but still face barriers to using technology, such as those with ID (Wilson et al., 2020). Wilson and colleagues also gathered feedback from the parents of the participants who provided valuable insight into the accessibility of the EMA, such as needing longer and louder notifications due to participant audio processing difficulties and the validity of the EMA, such as some participants responding in a socially desirable way rather than their true feelings. These findings indicate the importance of including parent and other KSP experiences in the design of adult EMA studies.\u003c/p\u003e \u003cp\u003eCurrently, there has been no research exploring the use of smart EMA in parents or caregivers of young adults with TSC or other rare genetic conditions. Therefore, the aim of this study is to explore the experiences of parents and caregivers of young adults with TSC, their attitudes and opinions on the hypothetical feasibility of smart EMA and to understand the accessibility and appropriateness of using smart EMA in young adults with TSC. This study accompanies a sister study which explored the experiences and use of smart EMA in young adults with TSC (Anonymised for review \u003cem\u003eet al., in review).\u003c/em\u003e\u003c/p\u003e"},{"header":"Methods","content":"\u003cp\u003e \u003cb\u003eAims\u003c/b\u003e \u003c/p\u003e \u003cp\u003e \u003col\u003e \u003cspan\u003e \u003cli\u003e \u003cp\u003eTo explore the experiences of parents and caregivers of young adults with TSC.\u003c/p\u003e \u003c/li\u003e \u003c/span\u003e \u003cspan\u003e \u003cli\u003e \u003cp\u003eTo examine the attitudes and opinions of caregivers on the hypothetical feasibility of using EMA in daily life for young adults with TSC.\u003c/p\u003e \u003c/li\u003e \u003c/span\u003e \u003cspan\u003e \u003cli\u003e \u003cp\u003eTo understand the accessibility and appropriateness of EMA for young adults with TSC, via parent or caregiver report, which will guide the protocol development for a following in vivo feasibility study.\u003c/p\u003e \u003c/li\u003e \u003c/span\u003e \u003c/ol\u003e \u003c/p\u003e \u003cdiv id=\"Sec3\" class=\"Section2\"\u003e \u003ch2\u003eDesign, Participant Selection and Sampling\u003c/h2\u003e \u003cp\u003eThis study applied a mixed-method approach based on focus groups and questionnaires. Using convenience sampling, participants were recruited via email and telephone through the prospective longitudinal Tuberous Sclerosis 2000 (TS 2000) study cohort (Tye et al., 2020), the Tuberous Sclerosis Association (TSA) charity research network and respective social media. Participants were eligible if they were a KSP of a young adult aged 17\u0026ndash;30 with a diagnosis of TSC. A KSP is defined as a parent, carer (informal and formal), partner or other family member aged 18 and above who sees the young adult every day or is involved in their care. Ethical approval was granted by King\u0026rsquo;s College London Health Faculties Research Ethics Subcommittee (Ref: HR/DP-22/23-34436). Written informed consent was obtained from all participants.\u003c/p\u003e \u003c/div\u003e\n\u003ch3\u003eParticipant Characteristics\u003c/h3\u003e\n\u003cp\u003eSix mothers and 1 father (average age of 59.6 years old, range 54:64) were recruited. The average age of their young adults was 20.9 years old (range 17:23). See Fig.\u0026nbsp;1 for the recruitment flowchart. See Table\u0026nbsp;\u003cspan refid=\"Tab1\" class=\"InternalRef\"\u003e1\u003c/span\u003e for participant characteristics. Two focus groups were conducted (group 1: n\u0026thinsp;=\u0026thinsp;4, group 2: n\u0026thinsp;=\u0026thinsp;3) and the mean focus group time was 69 minutes.\u003c/p\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab1\" border=\"1\"\u003e \u003ccaption language=\"En\"\u003e \u003cdiv class=\"CaptionNumber\"\u003eTable 1\u003c/div\u003e \u003cdiv class=\"CaptionContent\"\u003e \u003cp\u003eParticipant Characteristics\u003c/p\u003e \u003c/div\u003e \u003c/caption\u003e \u003ccolgroup cols=\"3\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c3\" colnum=\"3\"\u003e\u003c/div\u003e \u003cthead\u003e \u003ctr\u003e \u003cth align=\"left\" colname=\"c1\"\u003e \u003cp\u003eParticipant characteristics\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/th\u003e \u003cth align=\"left\" colname=\"c3\"\u003e \u003cp\u003eParent (N\u0026thinsp;=\u0026thinsp;7)\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003c/thead\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eAge (years), mean (range)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e59.57 (54:64)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eGender, % (N)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eFemale\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e85.7 (6)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eMale\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e14.3 (1)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eEthnicity, % (N)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eWhite - British\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e100 (7)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eEmployment, % (N)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eEmployed full time\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e42.9 (3)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eEmployed part time\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e28.6 (2)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eSelf-employed\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e14.3 (1)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eRetired\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e14.3 (1)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eEducation, % (N)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eHigher or secondary or further education\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e28.6 (2)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eUniversity\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e28.6 (2)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003ePost-graduate degree\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e42.9 (3)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eTSC Diagnosis, % (N)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e14.3 (1)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eNo\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e85.7 (6)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eSmartphone use, % (N)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e100 (7)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eRelationship to YP, % (N)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eMother\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e85.7 (6)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eFather\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e14.3 (1)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eAge (years) of TSC YP, mean (range)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e20.86 (17:23)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003cbr\u003e\n\u003ch3\u003eResearcher characteristics\u003c/h3\u003e\n\u003cp\u003eFocus groups were conducted by KF (Female PhD student working on the research project) and supported by one female undergraduate placement student (KB) and one male undergraduate final-year student (BS). KF met with the student immediately after each focus group to debrief and make notes. KF had previous experience running research interviews in a clinical setting and running focus groups in a university student sample. KF also had clinical therapeutic experience working with similar participants. These characteristics were acknowledged to have influenced the final interpretation. Please see Additional File 1 for a reflexivity statement. Participants had no prior relationship with the researchers or knowledge of the researcher\u0026rsquo;s motivations. However, the majority of participants had been recruited from a longitudinal cohort study (Yates et al., 2011), which may have influenced their views on the proposed research tool.\u003c/p\u003e\n\u003ch3\u003eStudy Procedure and Setting\u003c/h3\u003e\n\u003cp\u003eThe whole study procedure was conducted remotely via the telephone and online. One focus group was conducted using Microsoft Teams. In the first focus group, a TSA charity representative observed but did not participate in the groups. The second focus group was conducted using Zoom due to technical difficulties. All questionnaires and consent forms were completed via Qualtrics (Qualtrics, 2020). All participants were screened for their eligibility over the phone. They then completed consent forms via Qualtrics. Demographic forms were completed and then the participants were invited to participate in an online focus group. The focus groups were semi-structured using a topic guide (available on request) and adapted from a previous qualitative study (Simblett et al., 2018). Word clouds were used as an \u0026lsquo;icebreaker\u0026rsquo; before the main discussion began (see Figs.\u0026nbsp;2 and 3). At the end of the focus groups, all participants completed the Modified Computer Self-Efficacy Scale.\u003c/p\u003e\n\u003ch3\u003eMeasures\u003c/h3\u003e\n\u003cp\u003eThe Modified Computer Self-Efficacy (Laver et al., 2012) was used to assess hypothetical self-efficacy with using the smart EMA app. This scale has been validated in individuals with disabilities. Minor modifications were made to the wording of the scale (\u0026lsquo;Unfamiliar technology\u0026rsquo; was changed to \u0026lsquo;smartphone app\u0026rsquo;). Total scores are summed out of 100 with higher scores indicating greater technology efficacy. All other measures were bespoke.\u003c/p\u003e \u003cdiv id=\"Sec8\" class=\"Section2\"\u003e \u003ch2\u003eAnalysis\u003c/h2\u003e \u003cp\u003eFocus groups were audio and video recorded, transcribed verbatim and checked. All transcripts were anonymised. Qualitative analysis was conducted using NVivo (version 14; QSR international, Melbourne, Australia). Framework analysis (Ritchie \u0026amp; Spencer, 2002) was applied as we had predefined areas we wanted to understand (facilitators and barriers to smartphone EMA apps) but were also open to emergent codes and themes within the context of the participant's experience of caring for a young adult with TSC. After familiarisation, KF developed an initial basic codebook informed by predefined questions and emergent ideas from the familiarisation stage. KB then used this codebook to recode the data. KF and KB then worked together through many iterations to develop a theoretical framework or \u0026lsquo;codebook\u0026rsquo;. This framework was applied to the transcripts using a framework matrix to understand the \u0026lsquo;fit\u0026rsquo; of the data and quotes were assigned to the relevant categories. Participant\u0026rsquo;s quotes were then summarised and overall summaries for each category and case were defined. Patterns and concepts were then sought and labelled as themes and sub-themes. After the first refinement of themes and subthemes, these were shared with the participants. Two participants responded and agreed that the results matched their experience. Results were reported following the Consolidated Criteria for Reporting Qualitative Research (COREQ checklist) (Tong et al., 2007), see Additional File 2 for checklist. Descriptive and computer self-efficacy scale statistics were analysed using SPSS statical analysis software (Version 29, IBM).\u003c/p\u003e \u003c/div\u003e"},{"header":"Results","content":"\u003cp\u003e\u003cstrong\u003eEMA App Self-Efficacy\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe average app self-efficacy score was, out of 100, M = 90.57 (SD=6.65). For the participants, \u0026lsquo;If I had a lot of time to complete the questions which the app asked\u0026rsquo;\u0026nbsp;was rated with the highest confidence. \u0026lsquo;If I had never used an app like it before\u0026rsquo;\u0026nbsp;was rated with the lowest confidence. See Table 2 for scores.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eTable 2. Responses to the Modified Computer Self-Efficacy Scale after the focus groups\u003c/strong\u003e\u003c/p\u003e\n\u003ctable border=\"0\" cellspacing=\"0\" cellpadding=\"0\" width=\"489\"\u003e\n \u003ctbody\u003e\n \u003ctr\u003e\n \u003ctd rowspan=\"2\" valign=\"bottom\" style=\"width: 208px;\"\u003e\n \u003cp\u003e\u003cem\u003eItem\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd colspan=\"11\" valign=\"bottom\" style=\"width: 281px;\"\u003e\n \u003cp\u003eScore\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"bottom\" style=\"width: 23px;\"\u003e\n \u003cp\u003e1\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 23px;\"\u003e\n \u003cp\u003e2\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 23px;\"\u003e\n \u003cp\u003e3\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 23px;\"\u003e\n \u003cp\u003e4\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 23px;\"\u003e\n \u003cp\u003e5\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 23px;\"\u003e\n \u003cp\u003e6\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 23px;\"\u003e\n \u003cp\u003e7\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 23px;\"\u003e\n \u003cp\u003e8\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 23px;\"\u003e\n \u003cp\u003e9\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 31px;\"\u003e\n \u003cp\u003e10\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 47px;\"\u003e\n \u003cp\u003eTotal\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"bottom\" style=\"width: 208px;\"\u003e\n \u003cp\u003eNo previous use\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 23px;\"\u003e\n \u003cp\u003e0\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 23px;\"\u003e\n \u003cp\u003e0\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 23px;\"\u003e\n \u003cp\u003e0\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 23px;\"\u003e\n \u003cp\u003e0\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 23px;\"\u003e\n \u003cp\u003e0\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 23px;\"\u003e\n \u003cp\u003e0\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 23px;\"\u003e\n \u003cp\u003e2\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 23px;\"\u003e\n \u003cp\u003e4\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 23px;\"\u003e\n \u003cp\u003e1\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 31px;\"\u003e\n \u003cp\u003e0\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 47px;\"\u003e\n \u003cp\u003e55\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"bottom\" style=\"width: 208px;\"\u003e\n \u003cp\u003eNo help available\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 23px;\"\u003e\n \u003cp\u003e0\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 23px;\"\u003e\n \u003cp\u003e0\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 23px;\"\u003e\n \u003cp\u003e0\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 23px;\"\u003e\n \u003cp\u003e0\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 23px;\"\u003e\n \u003cp\u003e0\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 23px;\"\u003e\n \u003cp\u003e0\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 23px;\"\u003e\n \u003cp\u003e1\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 23px;\"\u003e\n \u003cp\u003e2\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 23px;\"\u003e\n \u003cp\u003e3\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 31px;\"\u003e\n \u003cp\u003e1\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 47px;\"\u003e\n \u003cp\u003e60\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"bottom\" style=\"width: 208px;\"\u003e\n \u003cp\u003eOnly manual instructions\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 23px;\"\u003e\n \u003cp\u003e0\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 23px;\"\u003e\n \u003cp\u003e0\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 23px;\"\u003e\n \u003cp\u003e0\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 23px;\"\u003e\n \u003cp\u003e0\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 23px;\"\u003e\n \u003cp\u003e0\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 23px;\"\u003e\n \u003cp\u003e0\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 23px;\"\u003e\n \u003cp\u003e1\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 23px;\"\u003e\n \u003cp\u003e2\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 23px;\"\u003e\n \u003cp\u003e3\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 31px;\"\u003e\n \u003cp\u003e1\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 47px;\"\u003e\n \u003cp\u003e60\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"bottom\" style=\"width: 208px;\"\u003e\n \u003cp\u003eOnly built-in help available\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 23px;\"\u003e\n \u003cp\u003e0\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 23px;\"\u003e\n \u003cp\u003e0\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 23px;\"\u003e\n \u003cp\u003e0\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 23px;\"\u003e\n \u003cp\u003e0\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 23px;\"\u003e\n \u003cp\u003e1\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 23px;\"\u003e\n \u003cp\u003e0\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 23px;\"\u003e\n \u003cp\u003e0\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 23px;\"\u003e\n \u003cp\u003e0\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 23px;\"\u003e\n \u003cp\u003e5\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 31px;\"\u003e\n \u003cp\u003e1\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 47px;\"\u003e\n \u003cp\u003e60\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"bottom\" style=\"width: 208px;\"\u003e\n \u003cp\u003eSimilarity to other apps\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 23px;\"\u003e\n \u003cp\u003e0\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 23px;\"\u003e\n \u003cp\u003e0\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 23px;\"\u003e\n \u003cp\u003e0\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 23px;\"\u003e\n \u003cp\u003e0\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 23px;\"\u003e\n \u003cp\u003e0\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 23px;\"\u003e\n \u003cp\u003e1\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 23px;\"\u003e\n \u003cp\u003e0\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 23px;\"\u003e\n \u003cp\u003e0\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 23px;\"\u003e\n \u003cp\u003e2\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 31px;\"\u003e\n \u003cp\u003e4\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 47px;\"\u003e\n \u003cp\u003e64\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"bottom\" style=\"width: 208px;\"\u003e\n \u003cp\u003eHelp available\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 23px;\"\u003e\n \u003cp\u003e0\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 23px;\"\u003e\n \u003cp\u003e0\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 23px;\"\u003e\n \u003cp\u003e0\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 23px;\"\u003e\n \u003cp\u003e0\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 23px;\"\u003e\n \u003cp\u003e0\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 23px;\"\u003e\n \u003cp\u003e0\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 23px;\"\u003e\n \u003cp\u003e0\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 23px;\"\u003e\n \u003cp\u003e2\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 23px;\"\u003e\n \u003cp\u003e0\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 31px;\"\u003e\n \u003cp\u003e5\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 47px;\"\u003e\n \u003cp\u003e66\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"bottom\" style=\"width: 208px;\"\u003e\n \u003cp\u003eObserved use\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 23px;\"\u003e\n \u003cp\u003e0\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 23px;\"\u003e\n \u003cp\u003e0\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 23px;\"\u003e\n \u003cp\u003e0\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 23px;\"\u003e\n \u003cp\u003e0\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 23px;\"\u003e\n \u003cp\u003e0\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 23px;\"\u003e\n \u003cp\u003e0\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 23px;\"\u003e\n \u003cp\u003e0\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 23px;\"\u003e\n \u003cp\u003e0\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 23px;\"\u003e\n \u003cp\u003e3\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 31px;\"\u003e\n \u003cp\u003e4\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 47px;\"\u003e\n \u003cp\u003e67\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"bottom\" style=\"width: 208px;\"\u003e\n \u003cp\u003eHelp started\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 23px;\"\u003e\n \u003cp\u003e0\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 23px;\"\u003e\n \u003cp\u003e0\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 23px;\"\u003e\n \u003cp\u003e0\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 23px;\"\u003e\n \u003cp\u003e0\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 23px;\"\u003e\n \u003cp\u003e0\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 23px;\"\u003e\n \u003cp\u003e0\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 23px;\"\u003e\n \u003cp\u003e0\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 23px;\"\u003e\n \u003cp\u003e1\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 23px;\"\u003e\n \u003cp\u003e1\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 31px;\"\u003e\n \u003cp\u003e5\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 47px;\"\u003e\n \u003cp\u003e67\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"bottom\" style=\"width: 208px;\"\u003e\n \u003cp\u003eDemonstration\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 23px;\"\u003e\n \u003cp\u003e0\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 23px;\"\u003e\n \u003cp\u003e0\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 23px;\"\u003e\n \u003cp\u003e0\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 23px;\"\u003e\n \u003cp\u003e0\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 23px;\"\u003e\n \u003cp\u003e0\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 23px;\"\u003e\n \u003cp\u003e0\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 23px;\"\u003e\n \u003cp\u003e0\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 23px;\"\u003e\n \u003cp\u003e1\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 23px;\"\u003e\n \u003cp\u003e1\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 31px;\"\u003e\n \u003cp\u003e5\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 47px;\"\u003e\n \u003cp\u003e67\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"bottom\" style=\"width: 208px;\"\u003e\n \u003cp\u003eTime to complete\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 23px;\"\u003e\n \u003cp\u003e0\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 23px;\"\u003e\n \u003cp\u003e0\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 23px;\"\u003e\n \u003cp\u003e0\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 23px;\"\u003e\n \u003cp\u003e0\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 23px;\"\u003e\n \u003cp\u003e0\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 23px;\"\u003e\n \u003cp\u003e0\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 23px;\"\u003e\n \u003cp\u003e0\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 23px;\"\u003e\n \u003cp\u003e0\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 23px;\"\u003e\n \u003cp\u003e2\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 31px;\"\u003e\n \u003cp\u003e5\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 47px;\"\u003e\n \u003cp\u003e68\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003c/tbody\u003e\n\u003c/table\u003e\n\u003cp\u003e(Scored from 1 = not at all confident to 10 = completely confident).\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003e\u003cu\u003eQualitative results\u003c/u\u003e\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe parent views were captured in four major themes with sub-themes divided across them (See Figure 4). The first theme described how TSC has impacted the young person\u0026rsquo;s life according to their parents. The second theme describes how becoming a young adult has impacted the parent, their young person and their independence. The third theme describes how an EMA app could help currently and, in the future, when the parent is less present. The fourth theme describes the hypothetical barriers and facilitators of the EMA app.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e1. Impact of Transition on Young Adult and Parent \u0026nbsp;\u003c/p\u003e\n\u003cp\u003eThis theme describes how their children becoming young adults impacted the parents, the young adults themselves and the independence of the young adults.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e1.1 Impact on young person\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eMost participants spoke about the loss of specialised health services for young adults with TSC, which was detrimental to their young adults. Losing a centralised support service and instead having to go to individual centres for each TSC symptom was difficult for the young adults and was especially exacerbated in those seeking support for mental health difficulties.\u003c/p\u003e\n\u003cp\u003e\u003cem\u003ePID 8: \u0026ldquo;Used to have a doctor, a consultant who supervised everything. Now, it\u0026apos;s all\u0026hellip;you go one place for the heart, you go another place for the brain, and it\u0026apos;s so disjointed. Whereas before, it felt as if there was a doctor looking at everything and making sure she was at- you know, keeping things under control.\u0026rdquo;\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eEmployment is a key step in becoming a young adult. But, for those who struggle to reach this milestone, like young adults with TSC, this can be very demoralising. This can also lead to or further exacerbate mental health difficulties which were already present from the teenage years.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cem\u003ePID 11\u003c/em\u003e: \u003cem\u003e\u0026ldquo;He\u0026apos;s tried applying for part time jobs and he doesnt get anywhere so that just adds to his conf- lack of confidence and- feeling like he\u0026apos;s not worth living, kind of.\u0026rdquo;\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eSome participants described positive experiences for their young adults where, now not being a child and having to \u0026lsquo;fit\u0026rsquo; into certain groups, they had managed to find individuals more like them and forge friendships.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cem\u003ePID 13:\u0026ldquo; For my daughter, uhm, I think turning eighteen has been quite nice, she\u0026rsquo;s\u0026mdash;cause\u0026rsquo;s she\u0026rsquo;s gone to college and left school. She\u0026rsquo;s finding more people on her, uhm, own wavelength. So I feel like she\u0026rsquo;s got a few more friends now than she may\u0026rsquo;ve done before\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eHowever, this was not shared by all the parents, with many describing how their young adult felt lonelier in adulthood.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cem\u003ePID 11: \u0026ldquo;I\u0026rsquo;m... from my viewpoint he is struggling a lot with mental health at the moment, feeling lonely, feeling like he\u0026apos;s got no friends.\u0026rdquo;\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003e1.2 Impact on parent\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eThe parents discussed how they experienced a change in their own role as their teenager became a young adult. For the parents, losing automatic access to their young adults\u0026apos; care information and, in turn, losing the ability to easily advocate for their young adults was difficult.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cem\u003ePID 18: \u0026ldquo;And kind of the, uhm, y\u0026rsquo;know managing the benefits system, the\u0026mdash;you lose that, uhm\u0026hellip;it\u0026rsquo;s not a right to advocacy, but you lose that ability to easily advocate. You can advocate for your children but when they become young adults it\u0026rsquo;s a lot harder, I think.\u0026rdquo;\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eThis dejection in losing their ability to advocate for their young adult demonstrates a mistrust that external support services can care effectively for their young adults. One participant described how clinical professionals did not understand that her young adult, who may have a learning disability, was unable to answer questions and make decisions effectively, and this had not suddenly changed now she was over 18 years old.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cem\u003ePID 5: \u0026ldquo;Battles just gotten tougher. When you were under 18, it was some sort of controlled. Now, even with \u0026apos;daughter\u0026apos;, when I take her, there is this bit of uhm concern on autistic spectrum, this might be a learning disability. They think when they asked her questions and she answers them, effectively or appropriately and she doesn\u0026rsquo;t\u0026hellip;so you know its a constant battle with consultants trying to explain that, you know that the parents need to be listened to and you can\u0026rsquo;t take onboard everything\u0026rdquo;.\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003e1.3 Impact on independence\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eThe participants discussed how both the parent and the young adult want the young adult to be independent and have a typical young adult experience.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cem\u003ePID 11: \u0026ldquo;Son\u0026rsquo;s priority is just to try and socialise to meet people, whether it is a local part time job or anything just- he\u0026apos;s actually made the decision now that he wants- we couldn\u0026rsquo;t get him out of the house before so, at least it is his decision now that he want to get out more. Anything that helps him build his confidence really, and meet people.\u0026rdquo;\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eSome participants spoke about how they had experienced some typical experiences, such as having to \u0026lsquo;let go\u0026rsquo; of the control over their young adult\u0026apos;s lives so they could achieve independence.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cem\u003ePID 13: \u0026ldquo;So I feel like she\u0026rsquo;s got a few more friends now than she may\u0026rsquo;ve done before, uhm, and she is finding her independence. And sometimes that is a bit scary (clears throat), uhm, but obviously, it\u0026rsquo;s different for each of us, uhm, and the scary bit is, uhm, kind of letting go as well and find her own way, but I suppose it\u0026rsquo;s like that as well with all teenagers anyway regardless of if they\u0026rsquo;ve got TS or not.\u0026rdquo;\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eHowever, reflecting the range of TSC presentations, this was not shared by all participants, as some participants discussed how their young adult would never achieve independence due to their TSC symptoms.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cem\u003ePID 4: \u0026ldquo;With \u0026lsquo;daughter\u0026rsquo;, there\u0026rsquo;ll never be independence because she\u0026rsquo;s so immature\u0026hellip;so, developmental delays and things\u0026rdquo;\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eDespite the range in independence, most participants spoke about how their young adults now need support other than their parents to have typical experiences. External support such as supported living and state-provided care and activities were discussed as essential for the participants and their families.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cem\u003ePID 4: \u0026ldquo;Uhm, well for me it\u0026rsquo;s for her to be able to go out to clubs and things, to be able to do things, otherwise she\u0026rsquo;d just be at home all the time. \u0026lsquo;daughter\u0026rsquo; would, uhm\u0026mdash;so without the support, uhm, and its council provided, without that she would be at home most of the time and I wouldn\u0026rsquo;t be able to go to work\u0026hellip;so supports\u0026hellip;to-to be able to go out into the community\u0026rsquo;s the biggest thing for us.\u0026rdquo;\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003e2. Impact of TSC on a young adult\u0026rsquo;s life.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eThis theme describes how TSC affects every young adult differently, but there are shared difficulties across the community.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e2.1\u0026nbsp;Young adult life with TSC\u003c/p\u003e\n\u003cp\u003eThe majority of participants were aware that TSC can affect each young adult differently and how there is a wide spectrum of abilities. They discussed how this may make it difficult to develop a monitoring app suitable for all young adults with TSC.\u003c/p\u003e\n\u003cp\u003e\u003cem\u003ePID 16: \u0026ldquo;So, uh\u0026mdash;an app that\u0026rsquo;s aimed at a young adult with TS\u0026hellip;that\u0026rsquo;s a big ask, isn\u0026rsquo;t it? Cause you\u0026rsquo;ve got your young adults with TS who go to outlook (\u003c/em\u003eannual charity event for mildly affected individuals with TSC)\u003cem\u003e\u0026nbsp;or y\u0026rsquo;know have some anxieties or, uhm, y\u0026rsquo;know, have some issues, but they\u0026rsquo;re functioning day-to-day independently. And then you\u0026rsquo;ve got everything in between.\u0026rdquo;\u0026nbsp;\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eParticipants spoke about how it has been hard to navigate sudden changes in health status, such as increased epileptic seizures, in their young adults.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cem\u003ePID 5: \u0026ldquo;But also see, her.... uhm, her changes, she has terrible mood swings\u0026hellip;But this all goes back to, see two years ago when she fainted and its taken her a long time to get back to sort of normal, if you can call it that.\u0026rdquo;\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eThey shared that all the young adults wished to do was to return to their previous health status, even though this may not have been as a \u0026lsquo;typical\u0026rsquo; young adult, this was their goal for quality of life. The changes in physical health symptoms also led to changes in cognitive ability for young adults, which, at a time when they are required to make more independent decisions, further increases the barriers to independence. \u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cem\u003ePID 18: \u0026ldquo;So the capacity, so, y\u0026rsquo;know really struggling to understand complex decisions\u0026rdquo;\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eBecause of physical health and cognitive difficulties, some participants spoke about how their young adults required increased support compared to typical young adults.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cem\u003ePID 8: \u0026ldquo;She can\u0026rsquo;t read, she can identify certain things, but she can\u0026rsquo;t really read. She really needs twent-Twenty-four seven care.\u0026rdquo;\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003e2.2\u0026nbsp;Current app tracking\u003c/p\u003e\n\u003cp\u003eThe parents discussed how some of their young adults already track their daily lives through apps, with support from their parents. These included physical health such as menstrual cycles and headaches, mental health such as overwhelming feelings, cognitive functioning such as problem-solving and specific TSC symptoms such as epilepsy\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cem\u003ePID 16: \u0026ldquo;I\u0026mdash;I, uhm, when \u0026lsquo;daughter\u0026rsquo; at home, I track her seizures on an app.\u0026rdquo;\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003ePID 18: \u003cem\u003e\u0026ldquo;we used \u0026ldquo;Brain In Hand\u0026rdquo; for quite a while with \u0026lsquo;daughter\u0026rsquo;. Uhm. To help with that kind of problem solving\u0026quot;\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eThe motivation for using apps was, for many participants, to have their information all in one place rather than have paper files, which were often hard to organise. \u003cem\u003e\u0026ldquo;I go to appointments and I think \u0026ldquo;oh no, I\u0026rsquo;ve forgotten my, y\u0026rsquo;know, reems of pages about her seizure diary\u0026rdquo; (PID 16).\u0026nbsp;\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003e3. How Could an EMA App Help\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eThis theme describes how the proposed EMA app could support young adults currently, with their parent present and in the future, when they might be without their parents to help.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e3.1 Now\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eThe participants expressed how using an app to communicate with health professionals may increase their validity as an informer for their young adult. One reason for this focused on that the technology looked more \u0026lsquo;professional\u0026rsquo; than \u0026lsquo;homemade\u0026rsquo; paper and pen. Other participants discussed that it helped make the parents themselves seem more \u0026lsquo;professional\u0026rsquo; by standardising their responses and removing the carer sentiment that may had led to their opinions being dismissed in the past.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cem\u003ePID 16: \u0026ldquo;I think as well, using the app, I know it sounds a bit odd, really, but, it kinda looks a bit more professional than, uhm, and a bit more\u0026mdash;in some ways\u0026mdash;believable than-than, your notebook or your little \u0026ldquo;1-2-3-4-5\u0026rdquo; cross-chart of seizures. It looks a bit more legitimate\u0026rdquo;\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eBeing able to track everyday experiences in the app was seen to help both the parent and the young adults. For the parents, being able to view patterns of behaviour, implement changes and see the impact on every-day life would be useful.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cem\u003ePID 16: \u0026ldquo;I agree with what 18K and 13K have said. For me it would be about seeing patterns and links that I miss otherwise\u0026rdquo;\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eThis may be especially useful for the young adults with TSC who struggle to explain why they are feeling certain emotions. Using the app could pick up on the triggers or relationships without having to ask the young adult to explain.\u003c/p\u003e\n\u003cp\u003ePID 8: \u003cem\u003e\u0026ldquo;And its just- even with times like where she\u0026rsquo;s commented it in the last five minutes, she\u0026rsquo;s really upset, she can\u0026rsquo;t say why she\u0026rsquo;s upset. She\u0026rsquo;s just upset.\u0026rdquo;\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eFor the young adults, one parent expressed how being able to see previous responses allies with their personality strength of polarised thinking patterns.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cem\u003ePID 11: \u0026ldquo;Yeah, because if he can see it in black and white, then at that point he did and he answered happy, then in his head it means he can- he knows that like- cause when he feels sad, he feels that\u0026apos;s it, its always sad and he can\u0026rsquo;t remember happy. So if he can see it written down \u0026lsquo;at that point I said happy\u0026rsquo;, then he knows he can get back there, does that make sense? He knows that it does exist cause its written down.\u0026rdquo;\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eTracking everyday experiences may be especially useful for detecting subtler TAND symptoms that can still have a large impact on a young adult\u0026rsquo;s quality of life. Participants expressed hope that picking up these symptoms may lead to more preventive care rather than often delayed curative or reactive care. \u0026nbsp;\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e18: And I think those are things that are harder to-to grasp\u0026hellip;a bit more below this wisp, aren\u0026rsquo;t they? Those kind of\u0026hellip;those fluctuations, and I think it becomes our norm, so you-you don\u0026rsquo;t notice it quite the same. But then we could be missing something that actually could be really beneficial if we could get the right support at the right time\u0026hellip;\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eOverall, most participants agreed that using an app to track everyday experiences would provide more data that could be used in evidence-based decisions for many difficulties and symptoms their young adults face.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e3.2 In the future without parent support\u003c/p\u003e\n\u003cp\u003eFor many participants, the concern for their young adults in the future, when the parent may not be as available, was evident by expressing that the app could support their young adult\u0026rsquo;s independence, especially in healthcare settings.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003ePID \u003cem\u003e16: \u0026ldquo;I think that would be really useful in, uh, medical appointments, because that\u0026rsquo;s just not a question that my daughter can answer.\u0026rdquo;\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eWith greater independence and communication with others, the young adults may be able to take on the parental role of advocacy and being able to self-advocate for themselves and the TSC community.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cem\u003ePID 18: \u0026ldquo;If it\u0026rsquo;s about something that going to benefit the wider TS community in terms of their, you know, uhm, being able to advocate for themselves or attend hospital appointments or capture that information as we\u0026rsquo;re getting older and-and not around quite\u0026mdash;you know if it\u0026rsquo;s that kind of continuity of care\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eTSC\u0026rsquo;s multi-organ and spectrum phenotype may allow it to benefit greatly from having a \u0026lsquo;all-in-one\u0026rsquo; approach which an app can support. Being able to record every possible symptom of TSC may reduce the burden on individuals and families, especially during the first stages of navigating disjointed adult healthcare.\u003c/p\u003e\n\u003cp\u003e\u003cem\u003ePID 18: I was thinking it would be so useful to have one app that we could record all those things on. So\u0026hellip;we could record the seizures on, we could record, uhm, y\u0026rsquo;know her headaches in the same place, we could record, uh, perhaps her mood and anxiety, uhm, all those kind of y\u0026rsquo;know, with the new TAND guidelines, all those kind of TAND type questions so that-that we could track all those things, so we had the one app to take to an appointment with us that was tracking all of those\u0026hellip;\u0026rdquo;\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003e4 Hypothetical Barriers and Facilitators \u0026nbsp;\u003c/p\u003e\n\u003cp\u003eThis theme describes what participants thought would make it easier for themselves and their young adults to use the EMA app and what would make it harder to use the EMA app.\u003c/p\u003e\n\u003cp\u003e4.1 What would make it easy to use the EMA app\u0026nbsp;\u003c/p\u003e\n\u003cp\u003ePersonal strengths of the young adults with TSC were seen as facilitators for using the app. These included honesty with responding to questions and adherence to requests to use the app. The broken-down nature of EMA questions would also co-work well with many of the young adult\u0026rsquo;s strengths reported by the participants. \u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cem\u003ePID\u003c/em\u003e \u003cem\u003e5: \u0026ldquo;My daughter would do it, if she was told it was needed by the hospital, so you have to follow the rules. She would follow the rules.\u003c/em\u003e\u0026rdquo;\u003c/p\u003e\n\u003cp\u003eDue to the variety in presentations of young adults with TSC, tailoring, not just the design of the app to increase accessibility, but the outcomes for each individual as well, would increase use of the EMA app.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003ePID \u003cem\u003e18: \u0026ldquo;I guess being able to tailor it would help us if we were trying to gather information just for our young person\u0026rdquo;\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eLetting participants decide who is answering the EMA questions was attractive to the participants as they know their young adults may be able to answer it themselves or need a KSP to answer it on their behalf. Integrating the app into current care and utilising formal carers would further support this.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cem\u003ePID 18: \u0026ldquo;they\u0026rsquo;re choosing not to share stuff with you, they\u0026rsquo;re choosing to share it with other people, or because other people are looking after them, that kind of app that can be shared then becomes quite attractive.\u0026rdquo;\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eUsing question responses that are familiar to the young adults, such as what they use in school or at home, would also support the accessibility of the app to the young adults. Participants spoke about how this was mainly two choice responses and not multiple graded scales. Increasing familiarisation of the app with the young adults through suitable training methods and ensuring they knew what was required of them, for example how long they would need to use the app for, would further facilitate use. \u0026nbsp;\u003c/p\u003e\n\u003cp\u003ePID 16: \u003cem\u003e\u0026ldquo;So, uhm, she could-she could pick the happy face and the not happy face. \u0026ldquo;I\u0026rsquo;m happy taking to somebody and not talking to somebody\u0026rdquo;\u0026hellip;that would be okay. It\u0026rsquo;s that graded\u0026hellip;\u0026rdquo;extremely\u0026rdquo;\u0026hellip;\u0026rdquo;moderately\u0026rdquo;\u0026hellip;\u0026rdquo;\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eIn addition, using emotions the parents recognise within their young adults would facilitate using parent report if the young adult was unable.\u003c/p\u003e\n\u003cp\u003ePID \u003cem\u003e16: \u0026ldquo;you\u0026rsquo;re just overlaying on it the things that you are confident that you can either understand from your daughters behaviour or she can tell you\u0026ldquo;\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eOne participant also discussed how short broken-down scaled questions are easily anonymised which was appealing to them as it often falls to the participant to ensure information privacy for their young adult.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cem\u003ePID 16: \u0026ldquo;I need to be very cautious on her behalf about what information was being shared. Or what information was in it\u0026hellip;if it\u0026rsquo;s anything more than something that\u0026rsquo;s easy to anonymise like an\u0026mdash;like a scale. Like\u0026hellip;that\u0026rsquo;s easy to anonymise, isn\u0026rsquo;t it?\u0026rdquo;\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eVisually appealing and entertaining were required aspects of the app commonly discussed by the participants. These engaging features were paramount for their young adult to even just attend to the app, let alone sustain its use. \u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cem\u003ePID 11: \u0026ldquo;I think in what you demo-ed in some were words and radio boxes and somewhere pictures. I think a combination like that will probably keep him interested, if that makes sense.\u0026rdquo;\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003e4.2 What would make it harder to use the EMA app.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eDifficulties in using the EMA app were divided into external and TSC barriers. External barriers refer to barriers not dependent on the young adult\u0026rsquo;s ability or TSC severity. One external barrier was the parent could not always support their young adult with using the app. As the young adult\u0026rsquo;s care is more likely to be shared or they are out of the house more often, parents could not always be present to support their young adult with using the app. Even in the parents were present, the time taken to support the young adult was perceived as burdensome. \u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cem\u003ePID 16: \u0026ldquo;but I would agree with 4K, for my daughter who I\u0026rsquo;m guessing is\u0026hellip;I-I don\u0026rsquo;t want to make judgements here but, from what 4K has said, my daughter is more cognitively able than hers, but that still would not be accessible and I would feel that to be quite onerous because I would need to be reading out all the questions, reminding her to do it\u0026hellip;\u0026rdquo;oh that\u0026rsquo;s that ping, remember what that ping\u0026rsquo;s for, oh now we\u0026rsquo;ve got what we\u0026rsquo;re doing, you to do this\u0026rdquo;\u0026hellip;or whoever\u0026rsquo;s supporting her at the time\u0026rdquo;\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eIn addition to the parents not being present to help, other life constraints such as being in university or training lectures where they can\u0026rsquo;t use their phone would reduce their use of the app.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eA further external barrier was concerns regarding privacy. Some participants discussed how if the information the young adults put into the app were not private, they would be less likely to share their experiences.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003ePID \u003cem\u003e13: \u0026ldquo;Yeah. The person who\u0026rsquo;s filling it in, if they think it\u0026rsquo;s private\u0026hellip;so for my daughter, I think if she thought it was private, she might write more in it than if she thought someone else was reading it\u0026rdquo;\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eTSC barriers refer to those factors potentially exacerbated by the young adults TSC diagnosis. One barrier shared within the group was how the young adults could not always express their feelings via an app due to the nature of the questions and how they are asked. This included the type of emotions the app asks about, asking via words not pictures, providing too many choices and asking for a gradation of feelings.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003ePID \u003cem\u003e18: \u0026ldquo;I do wonder if \u0026lsquo;daughter\u0026rsquo; might find it a bit difficult to choose sometimes. She struggles if she has too many choices to make a choice\u0026rdquo;\u0026nbsp;\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003e\u003cem\u003ePID 8: \u0026ldquo;Self-esteem, that\u0026rsquo;s not relevant\u0026hellip;.cause she- she doesn\u0026rsquo;t have any idea of self-esteem, you know. She\u0026rsquo;s either happy or sad\u0026ldquo;\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003ePID 4: \u003cem\u003e\u0026ldquo;But, no, she can\u0026rsquo;t read. She has trouble, she can barely read her own name.\u0026rdquo;\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eFurthermore, using parent reports instead could not always overcome this barrier as the young adults could not express these feelings to their parents for them to report.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cem\u003ePID 16: \u0026ldquo;And then it-it-she\u0026rsquo;s reliant on my interpretation of how I think she\u0026rsquo;s been feeling over the last two weeks, which might not actually be how she\u0026rsquo;s been feeling because what will stick out for me will be the negatives, and that-that might not stick out for her.\u0026rdquo;\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eParticipants also discussed how may be difficult to motivate their young adults to use the app, for example when they are low in mood or struggling to regulate their emotions. Traditional incentives such as payment or visual rewards may fail to overcome this barrier. Struggling to meet the expectations of the app could lead to overwhelming feelings and further reduce use of the app.\u003c/p\u003e\n\u003cp\u003e\u003cem\u003ePID 11: I think it really depends whether he\u0026rsquo;s had poor mental health. Um, he would do it initially, but if he gets really down cause of his mental- mental health at the moment, then he would not want to do it, if that makes sense.\u0026nbsp;\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eStruggling to meet the expectations of the app could lead to overwhelming feelings for some of the young adults and further reduce the use of the app. One factor shared by the group was the time limitations. Either some young adults may not understand the concept of having a limited time to complete the questionnaire or would need increased time to complete them due to cognitive difficulties.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cem\u003ePID 11: I guess, just the timing, cause for \u0026apos;son\u0026apos; concept of time- so if he\u0026rsquo;s got ten minutes to complete, he might not complete it in ten minutes cause he always takes a bit longer to read it and then go through it so that kind of thing. It\u0026rsquo;s not so much that he would get up, walk away. It\u0026rsquo;s just, I\u0026rsquo;m not sure he can do it within- he takes longer than other people would to answer things.\u0026nbsp;\u003c/em\u003e\u003c/p\u003e"},{"header":"Discussion","content":"\u003cp\u003eThe present study explores the experiences of parents and caregivers of young adults with TSC and their attitudes and opinions on using smart EMA to support their young adult's daily lives. This study contributes to the evidence that smart EMA may be feasible and acceptable for moderately or mildly affected young adults with TSC. This supports findings from a sister study that qualitatively explored smart EMA with young adults with TSC (author hidden to ensure anonymity., \u003cem\u003e2024 in review).\u003c/em\u003e Furthermore, these findings can be generalised to other young adults with long-term health conditions that may present with co-morbid neuropsychiatric conditions. However, to be accessible for all young adults with TSC, significant adaptation and personalisation from traditional EMA procedures will need to occur.\u003c/p\u003e \u003cp\u003e Difficulties after transitioning to young adulthood were reported in the young adults with TSC by the parents. Adverse changes in physical health symptoms were common in their young adults which led to rising TAND challenges. For those participants whose young adults had not experienced significant changes in their physical health, difficulties with typical young adulthood milestones, such as finding employment, continued or led to the development of TAND symptoms. This is in line with previous profiling of adults with TSC, where close to half reported psychological distress (Pulsifer et al., 2007) and in themes found in previous qualitative exploration with mild to moderately affected young adults with TSC (author hidden to ensure anonymity., \u003cem\u003e2024 in review\u003c/em\u003e). This also suggests there is continued interplay between physical health, neuropsychological and mental well-being in most young adults with TSC, even those with less physical health symptoms. This has been found previously in adults with epilepsy that even those with seizure remission are still at increased risk of adverse psychosocial outcomes in adulthood (Geerlings et al., 2015).\u003c/p\u003e \u003cp\u003eYoung adults with TSC, therefore, require support from adult healthcare services. However, unlike paediatric care, the parents reported disjointed services that were often unmanageable for their young adult without the support of their parents. For a multi-organ disease like TSC, the effects of these unsuitable systems are amplified and are a familiar occurrence across other European countries (Bar et al., 2019; Hamer et al., 2018). Adult healthcare requires independence in managing your own healthcare needs, and often, these services are not set up in a way that allows parents and caregivers to continue to support a young adult, as evidenced by the parents in the current study. The parents described how they want to support the independence of their young adults in managing and communicating their own health needs and evidenced this by describing other m-health tracking apps they currently use or have tried. However, without an identified healthcare professional \u0026lsquo;in charge\u0026rsquo; of their child, such as a paediatrician, the parents spoke about how they still had a role to play at the beginning of their young adult\u0026rsquo;s TSC healthcare management (Rentz et al., 2015).\u003c/p\u003e \u003cdiv id=\"Sec15\" class=\"Section2\"\u003e \u003ch2\u003eHow Smart EMA Could Help Now\u003c/h2\u003e \u003cp\u003eSmart EMA was viewed by the parents as a way to support their current requisite role by increasing their \u0026lsquo;professionalism\u0026rsquo; in reporting their young adult's experiences to clinicians. By using technology, the parents hypothesised that they could continue to advocate for their young adult but in a way that clinicians can endorse. Furthermore, due to the multi-symptom nature of TSC, having one app to record all the different symptoms, which can then be viewed overall or filtered by specialised clinicians, was viewed as an important benefit of smart EMA by the parents. Tantamount to \u0026lsquo;TAND\u0026rsquo; being created as a \u0026ldquo;shared language\u0026rdquo; for the TSC community (De Vries et al., 2018), smart EMA may act as a facilitator of this language across young adults, their parents or caregivers, researchers and healthcare professionals. Overall, communication between young adults, parents, other KSPs and healthcare professionals may be supported by the use of smart EMA. Individuals with mental health conditions (Bos et al., 2019; Murnane et al., 2016) and adolescents with chronic conditions (Nap-van der Vlist et al., 2021) have also hypothesised this communication benefit.\u003c/p\u003e \u003cp\u003eParticipants also predicted that by using smart EMA, they or their young adults would be able to track their everyday experiences and observe patterns in behaviours, and, in turn, this would lead to self-management of symptoms. The participants noted that this may be especially useful for the more \u0026lsquo;subtle\u0026rsquo; TAND symptoms that do not have apparent triggers or solutions, likely those at the behavioural and psychosocial TAND level, such as depressed mood or self-esteem issues. The parents noted that even their young adult just being able to see previous feelings \u0026lsquo;in black and white\u0026rsquo; may be enough to indicate behavioural change. This prediction was mirrored in young adults, with TSC reporting that \u0026ldquo;an EMA app would help you to understand yourself\u0026rdquo; (author hidden to ensure anonymity., \u003cem\u003e2024 in review\u003c/em\u003e). This also supports findings in mental health research where personalised feedback reports from depression treatment with integrated EMI resulted in participants' qualitatively reporting an increase in self-awareness and an increased sense of control over difficulties (Folkersma et al., 2021). This study did not find any statistical change in clinical outcomes in the participants, but they also did not include any self-management or insight measures as quantitative outcomes, likely missing this effect. The parents reported in the current study that their young adults sought independence in their daily lives. Therefore, by using EMA an increase in self-efficacy for young adults with TSC to manage their everyday experiences may be observed.\u003c/p\u003e \u003cp\u003eSome parents in our study reported they would be completing the questionnaires on behalf of their young adult who has difficulty reporting or explaining their emotions. Smart EMA may reduce the burden for parents or caregivers of having to interpret their young adult\u0026rsquo;s feelings in order to communicate this with others. By the parents or caregivers reporting the young adult's behaviour and their environment, smart EMA itself can identify the patterns and causal relationships rather than relying on the parent's or caregiver\u0026rsquo;s interpretation (Myin-Germeys \u0026amp; Kuppens, 2022). It may also be a useful tool for monitoring responses to treatment changes, such as epilepsy medication. Healthcare professionals have expressed concern about the validity of proxy reports in EMA for paediatric health quality of life (Fraser et al., 2024), however, EMA\u0026rsquo;s characteristics of in-the-moment reporting can help overcome retrospective bias, which has been evidenced in caregivers' reports of conditions such as autism (Jones et al., 2015), epilepsy and mild intellectual disabilities (Zimmermann \u0026amp; Endermann, 2008).\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec16\" class=\"Section2\"\u003e \u003ch2\u003e\u003cem\u003eHow Smart EMA Could Help in the Future\u003c/em\u003e\u003c/h2\u003e \u003cp\u003eParents reported they or their young adults are already using self-tracking apps for their everyday experiences and symptoms and in the current study, most of the parents were positive about using smart EMA for their young adults. This supports the acceptability and feasibility of implementing technology into long-term health condition research and clinical services. One benefit of smart EMA is that it can also be integrated into other mobile or electronic systems for a multimodal approach. An example is wearable technology which, when combined with smart EMA, can amalgamate active and passive monitoring to provide an overall picture of everyday activity, symptomology and environmental factors. Examples of this approach include pollution sensing and child asthma inhaler use (Hao et al., 2022), diabetes management and blood glucose levels (Nam et al., 2021) and sleep patterns and suicide ideation (Littlewood et al., 2019). In TSC specifically, there is a TSC TAND app currently being developed, which will include a TAND self-assessment questionnaire (TAND-SQ) and a self-help toolkit, personalised to the individual's TAND profile (Heunis et al., 2022). Smart EMA can provide rich data on daily fluctuations, which can be combined with stable TAND profiles observed with the TAND-SQ to help inform current symptomology. Our findings of predicted high self-efficacy scores in the parents to be able to use smart EMA back the suitability of using mobile technology in TSC research and care.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec17\" class=\"Section2\"\u003e \u003ch2\u003eFuture EMA Research Requirements\u003c/h2\u003e \u003cp\u003eTo use smart EMA in future TSC research that can inform a clinical evidence base, accessibility of the EMA structure must be considered. The majority of the parents discussed how the presented hypothetical EMA protocol (informed by smart EMA research in non-clinical populations) was unsuitable for their young adults. If young adults with TSC were required to use smart EMA without parents or caregiver support, increasing time to answer prompts, reducing verbal load and increasing visual information, dichotomous questions, and extensive training, including information about data privacy, should be considered. Reducing the perceived burden of the smart EMA is especially important as the parents reported that traditional research incentives such as payment would not motivate their young adults to use smart EMA. As reported by the parents in our study, interactivity and gamification could be used as a motivation tool.\u003c/p\u003e \u003cp\u003e For those young adults with TSC who would require proxy reporting by their parents or caregivers, further adaptations would be required. Some of the parents reported that their young adults now have their care shared between different KSPs. To ensure young adults' experiences are captured comprehensively, smart EMA must be able to be shared between different KSPs, including parents and formal carers. Questions must also be personalised to match the behaviours the parents and other KSPs can recognise. Basic emotions such as \u0026lsquo;happy\u0026rsquo; or \u0026lsquo;sad\u0026rsquo; may be more relevant than more abstract emotions such as \u0026lsquo;confident\u0026rsquo; or \u0026lsquo;lonely\u0026rsquo;, as they may be interpreted incorrectly for TSC young adults who cannot voice these feelings explicitly. Using images may also aid valid reporting.\u003c/p\u003e \u003cp\u003eAlthough there were shared requirements and suggestions across our participants, the variability in their young adults\u0026rsquo; abilities to use EMA was stark. As shown in previous scoping reviews of EMA in individuals with ID (Bakkum et al., 2024), personalisation of smart EMA to each individual level within a condition like TSC is key to its feasibility and acceptability. Future research should utilise Patient and Public Involvement (PPI) to guide smart EMA adaptation and personalisation.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec18\" class=\"Section2\"\u003e \u003ch2\u003eLimitations\u003c/h2\u003e \u003cp\u003eAll of our parent sample young adults were less than 24 years old, reducing capture to emerging adulthood. Older young adults (25\u0026ndash;30 years old) who have had time to adjust to changes in daily life in adulthood may demonstrate differing views on using smartphone EMA. Our sample also only consisted of parents of young adults with TSC and no other KSPs. This may reduce our understanding of the feasibility of smart EMA in young adults who received support from other KSPs such as formal carers, romantic partners or siblings. However, research highlights that parents and caregivers are still present in young adults with TSC regardless of age (Skrobanski et al., 2023), suggesting our themes may still be applicable to older young adults with TSC, their parents or caregivers or young adults with other KSPs present in their lives.\u003c/p\u003e \u003cp\u003eOur sample size is small and does not reach the reported \u0026lsquo;sample size for data saturation in qualitative work (Guest et al., 2006; Guest et al., 2017). Time limits and a limited population to recruit from impacted our sample size. However, our sample did include parents who cared for young adults with TSC with a diverse range of TAND symptoms, from developmental delay to those with mildly affected functioning. Due to this and recent discussions around data saturation in qualitative research (Braun \u0026amp; Clarke, 2021), we prioritise the meaningfulness of our codes and themes and allowed the participant respondent validation guide our confidence in the results.\u003c/p\u003e \u003c/div\u003e"},{"header":"Conclusion","content":"\u003cp\u003eThis study explored the appropriateness of using smart EMA in young adults with TSC from the perspective of their parents. Several themes around how young adults may use smart EMA emerged through helping manage the transition from childhood to adulthood, navigating adult healthcare services and increasing self-management of TAND symptoms. For the parents, themes around validating their proxy reporting and supporting their young adults' independence were highlighted. Hypotheses for the adaptation of smart EMA for both young adults and parents or caregivers were generated: increasing time limits, balancing verbal and visual material, dichotomous questions, extensive training, familiar items and sharing capabilities. These variables should be evaluated in future studies to contribute to the feasibility and acceptability of smart EMA with young adults with TSC and other long-term health conditions who continue to require parent or caregiver support.\u003c/p\u003e"},{"header":"Abbreviations","content":"\u003cdiv class=\"DefinitionList\"\u003e \u003cdiv class=\"DefinitionListEntry\"\u003e \u003cdiv class=\"Term\"\u003eEMA\u003c/div\u003e \u003cdiv class=\"Description\"\u003e \u003cp\u003eEcological Momentary Assessment\u003c/p\u003e \u003c/div\u003e \u003c/div\u003e \u003cdiv class=\"DefinitionListEntry\"\u003e \u003cdiv class=\"Term\"\u003eID\u003c/div\u003e \u003cdiv class=\"Description\"\u003e \u003cp\u003eIntellectual Disability\u003c/p\u003e \u003c/div\u003e \u003c/div\u003e \u003cdiv class=\"DefinitionListEntry\"\u003e \u003cdiv class=\"Term\"\u003eINT\u003c/div\u003e \u003cdiv class=\"Description\"\u003e \u003cp\u003eInterview\u003c/p\u003e \u003c/div\u003e \u003c/div\u003e \u003cdiv class=\"DefinitionListEntry\"\u003e \u003cdiv class=\"Term\"\u003eKSP\u003c/div\u003e \u003cdiv class=\"Description\"\u003e \u003cp\u003eKey Support Person\u003c/p\u003e \u003c/div\u003e \u003c/div\u003e \u003cdiv class=\"DefinitionListEntry\"\u003e \u003cdiv class=\"Term\"\u003eLTC\u0026rsquo;s\u003c/div\u003e \u003cdiv class=\"Description\"\u003e \u003cp\u003eLong Term Conditions\u003c/p\u003e \u003c/div\u003e \u003c/div\u003e \u003cdiv class=\"DefinitionListEntry\"\u003e \u003cdiv class=\"Term\"\u003ePPI\u003c/div\u003e \u003cdiv class=\"Description\"\u003e \u003cp\u003ePatient and Public Involvement\u003c/p\u003e \u003c/div\u003e \u003c/div\u003e \u003cdiv class=\"DefinitionListEntry\"\u003e \u003cdiv class=\"Term\"\u003eSmart EMA\u003c/div\u003e \u003cdiv class=\"Description\"\u003e \u003cp\u003eSmartphone Ecological Momentary Assessment\u003c/p\u003e \u003c/div\u003e \u003c/div\u003e \u003cdiv class=\"DefinitionListEntry\"\u003e \u003cdiv class=\"Term\"\u003eTAND\u003c/div\u003e \u003cdiv class=\"Description\"\u003e \u003cp\u003eTSC-Associated Neuropsychiatric Disorders\u003c/p\u003e \u003c/div\u003e \u003c/div\u003e \u003cdiv class=\"DefinitionListEntry\"\u003e \u003cdiv class=\"Term\"\u003eTAND-SQ\u003c/div\u003e \u003cdiv class=\"Description\"\u003e \u003cp\u003eSelf-Report Quantified Tuberous Sclerosis Complex-Associated Neuropsychiatric Disorders Checklist\u003c/p\u003e \u003c/div\u003e \u003c/div\u003e \u003cdiv class=\"DefinitionListEntry\"\u003e \u003cdiv class=\"Term\"\u003eTSA\u003c/div\u003e \u003cdiv class=\"Description\"\u003e \u003cp\u003eTuberous Sclerosis Association\u003c/p\u003e \u003c/div\u003e \u003c/div\u003e \u003cdiv class=\"DefinitionListEntry\"\u003e \u003cdiv class=\"Term\"\u003eTSC\u003c/div\u003e \u003cdiv class=\"Description\"\u003e \u003cp\u003eTuberous Sclerosis Complex\u003c/p\u003e \u003c/div\u003e \u003c/div\u003e \u003cdiv class=\"DefinitionListEntry\"\u003e \u003cdiv class=\"Term\"\u003eTS 2000 Study\u003c/div\u003e \u003cdiv class=\"Description\"\u003e \u003cp\u003eTuberous Sclerosis 2000 Study\u003c/p\u003e \u003c/div\u003e \u003c/div\u003e \u003c/div\u003e"},{"header":"Declarations","content":"\u003cp\u003e\u003cstrong\u003eEthics approval and consent to participate\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe study was approved by King College London Health Faculties Research Ethics Subcommittee. All participants provided informed consent.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eConsent for publication\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eNA\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAvailability of data and materials\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe datasets generated and/or analysed during the current study are not publicly available due to information that could compromise research participant privacy/consent but are available from the corresponding author on reasonable request.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eCompeting interests\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe authors declare that they have no competing interests.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eFunding\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eKF is fully funded by a King\u0026rsquo;s College London Department of Psychology PhD studentship. The funding includes course fees, stipend and research training support grant (RTSG) for the three-year duration of her studentship. The funding body has had no role in the study design, collection, analysis or interpretation of the data, writing the manuscript, or the decision to submit the paper for publication.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAuthors\u0026rsquo; Contributions\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eKF conceptualised and planned the study, wrote focus group and interview schedules, recruited participants, conducted focus groups and interviews, performed qualitative and quantitative analysis, writing and editing of manuscript.\u0026nbsp;KB recruited participants, supported focus groups, and transcribed and qualitatively analysed data.\u0026nbsp;BS supported focus groups and transcribed data. CT reviewed drafts of the paper provided advice and guidance to the project and carefully edited and suggested changes in the manuscript. SS conceptualized and planned the study, oversaw the activities of the study, and carefully edited and suggested changes in the manuscript.\u0026nbsp;All authors read and approved the final manuscript.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAcknowledgements\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eWe acknowledge the support of the Maudsley Biomedical Research Centre\u0026rsquo;s Feasibility and Acceptability Support Team for Researchers (FAST-R), who reviewed this research\u0026rsquo;s recruitment documents. We would like to thank all the participating parents and their families for their time and commitment to the study. \u0026nbsp;We would like to thank the Tuberous Sclerosis Association for their support with recruitment.\u003c/p\u003e"},{"header":"References","content":"\u003col\u003e\u003cli\u003e\u003cspan\u003eAmin, S., Lux, A., Calder, N., Laugharne, M., Osborne, J., \u0026amp; O'callaghan, F. (2017). Causes of mortality in individuals with tuberous sclerosis complex. \u003cem\u003eDevelopmental Medicine \u0026amp; Child Neurology\u003c/em\u003e, \u003cem\u003e59\u003c/em\u003e(6), 612\u0026ndash;617. https://doi.org/https://doi.org/10.1111/dmcn.13352\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eAstrinidis, A., \u0026amp; Henske, E. P. (2005). Tuberous sclerosis complex: linking growth and energy signaling pathways with human disease. \u003cem\u003eOncogene\u003c/em\u003e, \u003cem\u003e24\u003c/em\u003e(50), 7475\u0026ndash;7481. https://doi.org/https://doi.org/10.1038/sj.onc.1209090\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eBabinski, D. E., \u0026amp; Welkie, J. (2020). Feasibility of Ecological Momentary Assessment of Negative Emotion in Girls With ADHD: A Pilot Study. \u003cem\u003ePsychological reports\u003c/em\u003e, \u003cem\u003e123\u003c/em\u003e(4), 1027\u0026ndash;1043. https://doi.org/doi:10.1177/0033294119838757\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eBakkum, L., Paalman, C., M\u0026uuml;ller, A., van Eeghen, A., \u0026amp; Schuengel, C. (2024). Accessibility and feasibility of experience sampling methods for mental health research with people with intellectual disability: Scoping of research and stakeholder views. \u003cem\u003eJournal of Applied Research in Intellectual Disabilities\u003c/em\u003e, \u003cem\u003e37\u003c/em\u003e(2), e13190. https://doi.org/https://doi.org/10.1111/jar.13190\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eBar, C., Ghobeira, R., Azzi, R., Ville, D., Riquet, A., Touraine, R., Chemaly, N., \u0026amp; Nabbout, R. (2019). Experience of follow-up, quality of life, and transition from pediatric to adult healthcare of patients with tuberous sclerosis complex. \u003cem\u003eEpilepsy \u0026amp; Behavior\u003c/em\u003e, \u003cem\u003e96\u003c/em\u003e, 23\u0026ndash;27. https://doi.org/https://doi.org/10.1016/j.yebeh.2019.04.027\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eBos, F. M., Snippe, E., Bruggeman, R., Wichers, M., \u0026amp; van der Krieke, L. (2019). Insights of patients and clinicians on the promise of the experience sampling method for psychiatric care. \u003cem\u003ePsychiatric services\u003c/em\u003e, \u003cem\u003e70\u003c/em\u003e(11), 983\u0026ndash;991. https://doi.org/https://doi.org/10.1176/appi.ps.201900050\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eBraun, V., \u0026amp; Clarke, V. (2021). To saturate or not to saturate? Questioning data saturation as a useful concept for thematic analysis and sample-size rationales. \u003cem\u003eQualitative research in sport, exercise and health\u003c/em\u003e, \u003cem\u003e13\u003c/em\u003e(2), 201\u0026ndash;216. https://doi.org/https://doi.org/10.1080/2159676X.2019.1704846\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eDabora, S. L., Jozwiak, S., Franz, D. N., Roberts, P. S., Nieto, A., Chung, J., Choy, Y.-S., Reeve, M. P., Thiele, E., \u0026amp; Egelhoff, J. C. (2001). Mutational analysis in a cohort of 224 tuberous sclerosis patients indicates increased severity of TSC2, compared with TSC1, disease in multiple organs. \u003cem\u003eThe American Journal of Human Genetics\u003c/em\u003e, \u003cem\u003e68\u003c/em\u003e(1), 64\u0026ndash;80. https://doi.org/https://doi.org/doi:10.1086/316951\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eDe Vries, P. J., Wilde, L., De Vries, M. C., Moavero, R., Pearson, D. A., \u0026amp; Curatolo, P. (2018). A clinical update on tuberous sclerosis complex-associated neuropsychiatric disorders (TAND). \u003cem\u003eAmerican Journal of Medical Genetics Part C: Seminars in Medical Genetics\u003c/em\u003e, \u003cem\u003e178\u003c/em\u003e(3), 309\u0026ndash;320. https://doi.org/https://doi.org/10.1002/ajmg.c.31637\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eFifield, K., Hodsoll, J., Kuntsi, J., Tye, C., \u0026amp; Simblett, S. (2024). Completion rates of smart technology ecological momentary assessment (EMA) in populations with a higher likelihood of cognitive impairment: A systematic review and meta-analysis. \u003cem\u003eAssessment\u003c/em\u003e, 0\u0026ndash;54. https://doi.org/https://doi.org/10.1177/107319112413063\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eFolkersma, W., Veerman, V., Orn\u0026eacute;e, D. A., Oldehinkel, A. J., Alma, M. A., \u0026amp; Bastiaansen, J. A. (2021). Patients' experience of an ecological momentary intervention involving self-monitoring and personalized feedback for depression. \u003cem\u003eInternet Interventions\u003c/em\u003e, \u003cem\u003e26\u003c/em\u003e, 100436. https://doi.org/https://doi.org/10.1016/j.invent.2021.100436\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eFraser, H., Thompson, L., Crawley, E., Ridd, M. J., \u0026amp; Brigden, A. (2024). \" not one size fits all\u0026rdquo; The challenges of measuring paediatric health-related quality of life and the potential role of digital ecological momentary assessment: a qualitative study. \u003cem\u003eQuality of Life Research\u003c/em\u003e, \u003cem\u003e33\u003c/em\u003e(2), 443\u0026ndash;452. https://doi.org/https://doi.org/10.1007/s11136-023-03535-6\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eGeerlings, R., Aldenkamp, A., Gottmer-Welschen, L., de With, P., Zinger, S., van Staa, A., \u0026amp; de Louw, A. (2015). Developing from child to adult: risk factors for poor psychosocial outcome in adolescents and young adults with epilepsy. \u003cem\u003eEpilepsy \u0026amp; Behavior\u003c/em\u003e, \u003cem\u003e51\u003c/em\u003e, 182\u0026ndash;190. https://doi.org/https://doi.org/10.1016/j.yebeh.2015.07.035\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eGuest, G., Bunce, A., \u0026amp; Johnson, L. (2006). How many interviews are enough? An experiment with data saturation and variability. \u003cem\u003eField methods\u003c/em\u003e, \u003cem\u003e18\u003c/em\u003e(1), 59\u0026ndash;82. https://doi.org/https://doi.org/10.1177/1525822X05279903\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eGuest, G., Namey, E., \u0026amp; McKenna, K. (2017). How many focus groups are enough? Building an evidence base for nonprobability sample sizes. \u003cem\u003eField methods\u003c/em\u003e, \u003cem\u003e29\u003c/em\u003e(1), 3\u0026ndash;22. https://doi.org/https://doi.org/10.1177/1525822X16639015\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eHamer, H. M., Pf\u0026auml;fflin, M., Baier, H., B\u0026ouml;sebeck, F., Franz, M., Holtkamp, M., Kurlemann, G., May, T. W., Mayer, T., \u0026amp; Metzner, M. (2018). Characteristics and healthcare situation of adult patients with tuberous sclerosis complex in German epilepsy centers. \u003cem\u003eEpilepsy \u0026amp; Behavior\u003c/em\u003e, \u003cem\u003e82\u003c/em\u003e, 64\u0026ndash;67. https://doi.org/https://doi.org/10.1016/j.yebeh.2018.03.006\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eHao, H., Eckel, S. P., Hosseini, A., Van Vliet, E. D., Dzubur, E., Dunton, G., Chang, S. Y., Craig, K., Rocchio, R., \u0026amp; Bastain, T. (2022). Daily associations of air pollution and pediatric asthma risk using the biomedical REAI-Time Health Evaluation (BREATHE) Kit. \u003cem\u003eInternational Journal of Environmental Research and Public Health\u003c/em\u003e, \u003cem\u003e19\u003c/em\u003e(6), 3578. https://doi.org/https://doi.org/10.3390/ijerph19063578\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eHarrison, J. E., \u0026amp; Bolton, P. F. (1997). Annotation: tuberous sclerosis. \u003cem\u003eJournal of Child Psychology and Psychiatry\u003c/em\u003e, \u003cem\u003e38\u003c/em\u003e(6), 603\u0026ndash;614. https://doi.org/https://doi.org/10.1111/j.1469-7610.1997.tb01687.x\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eHeath, G., Farre, A., \u0026amp; Shaw, K. (2017). Parenting a child with chronic illness as they transition into adulthood: a systematic review and thematic synthesis of parents\u0026rsquo; experiences. \u003cem\u003ePatient Education and Counseling\u003c/em\u003e, \u003cem\u003e100\u003c/em\u003e(1), 76\u0026ndash;92. https://doi.org/https://doi.org/10.1016/j.pec.2016.08.011\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eHeunis, T.-M., Bissell, S., Byars, A. W., Capal, J. K., Chambers, N., Cukier, S., Davis, P. E., De Waele, L., Flinn, J., \u0026amp; Gardner-Lubbe, S. (2022). Empowering families through technology: a mobile-health project to reduce the TAND identification and treatment gap (TANDem). \u003cem\u003eFrontiers in Psychiatry\u003c/em\u003e, \u003cem\u003e13\u003c/em\u003e, 834628. https://doi.org/https://doi.org/10.3389/fpsyt.2022.834628\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eHeunis, T.-M., Chambers, N., Vanclooster, S., Bissell, S., Byars, A. W., Capal, J. K., Cukier, S., Davis, P. E., de Vries, M. C., \u0026amp; De Waele, L. (2023). Development and feasibility of the self-report quantified tuberous sclerosis complex-associated neuropsychiatric disorders checklist (TAND-SQ). \u003cem\u003ePediatric Neurology\u003c/em\u003e, \u003cem\u003e147\u003c/em\u003e, 101\u0026ndash;123. https://doi.org/https://doi.org/10.1016/j.pediatrneurol.2023.07.001\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eJones, R. M., Risi, S., Wexler, D., Anderson, D., Corsello, C., Pickles, A., \u0026amp; Lord, C. (2015). How interview questions are placed in time influences caregiver description of social communication symptoms on the ADI-R. \u003cem\u003eJournal of Child Psychology and Psychiatry\u003c/em\u003e, \u003cem\u003e56\u003c/em\u003e(5), 577\u0026ndash;585. https://doi.org/https://doi.org/10.1111/jcpp.12325\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eKingswood, C., Bolton, P., Crawford, P., Harland, C., Johnson, S. R., Sampson, J. R., Shepherd, C., Spink, J., Demuth, D., \u0026amp; Lucchese, L. (2016). The clinical profile of tuberous sclerosis complex (TSC) in the United Kingdom: a retrospective cohort study in the Clinical Practice Research Datalink (CPRD). \u003cem\u003eeuropean journal of paediatric neurology\u003c/em\u003e, \u003cem\u003e20\u003c/em\u003e(2), 296\u0026ndash;308. https://doi.org/https://doi.org/10.1016/j.ejpn.2015.11.011\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eLaver, K., George, S., Ratcliffe, J., \u0026amp; Crotty, M. (2012). Measuring technology self efficacy: reliability and construct validity of a modified computer self efficacy scale in a clinical rehabilitation setting. \u003cem\u003eDisability and rehabilitation\u003c/em\u003e, \u003cem\u003e34\u003c/em\u003e(3), 220\u0026ndash;227. https://doi.org/10.3109/09638288.2011.593682\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eLittlewood, D. L., Kyle, S. D., Carter, L.-A., Peters, S., Pratt, D., \u0026amp; Gooding, P. (2019). Short sleep duration and poor sleep quality predict next-day suicidal ideation: an ecological momentary assessment study. \u003cem\u003ePsychological medicine\u003c/em\u003e, \u003cem\u003e49\u003c/em\u003e(3), 403\u0026ndash;411. https://doi.org/https://doi.org/10.1017/S0033291718001009\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eLotstein, D. S., Ghandour, R., Cash, A., McGuire, E., Strickland, B., \u0026amp; Newacheck, P. (2009). Planning for health care transitions: results from the 2005\u0026ndash;2006 national survey of children with special health care needs. \u003cem\u003ePediatrics\u003c/em\u003e, \u003cem\u003e123\u003c/em\u003e(1), e145-e152.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eMemarzia, J., St Clair, M. C., Owens, M., Goodyer, I. M., \u0026amp; Dunn, V. J. (2015). Adolescents leaving mental health or social care services: predictors of mental health and psychosocial outcomes one year later. \u003cem\u003eBMC health services research\u003c/em\u003e, \u003cem\u003e15\u003c/em\u003e, 1\u0026ndash;8. https://doi.org/https://doi.org/10.1186/s12913-015-0853-9\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eMurnane, E. L., Cosley, D., Chang, P., Guha, S., Frank, E., Gay, G., \u0026amp; Matthews, M. (2016). Self-monitoring practices, attitudes, and needs of individuals with bipolar disorder: implications for the design of technologies to manage mental health. \u003cem\u003eJournal of the American Medical Informatics Association\u003c/em\u003e, \u003cem\u003e23\u003c/em\u003e(3), 477\u0026ndash;484.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eMyin-Germeys, I., \u0026amp; Kuppens, P. (2022). \u003cem\u003eThe open handbook of experience sampling methodology: A step-by-step guide to designing, conducting, and analyzing ESM studies\u003c/em\u003e (2nd digital ed.). Leuven: Center for Research on Experience Sampling and Ambulatory Methods Leuven.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eNam, S., Griggs, S., Ash, G. I., Dunton, G. F., Huang, S., Batten, J., Parekh, N., \u0026amp; Whittemore, R. (2021). Ecological momentary assessment for health behaviors and contextual factors in persons with diabetes: A systematic review. \u003cem\u003eDiabetes research and clinical practice\u003c/em\u003e, \u003cem\u003e174\u003c/em\u003e, 108745. https://doi.org/https://doi.org/10.1016/j.diabres.2021.108745\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eNap-van der Vlist, M. M., Houtveen, J., Dalmeijer, G. W., Grootenhuis, M. A., van der Ent, C. K., van Grotel, M., Swart, J. F., van Montfrans, J. M., van de Putte, E. M., \u0026amp; Nijhof, S. L. (2021). Internet and smartphone-based ecological momentary assessment and personalized advice (PROfeel) in adolescents with chronic conditions: a feasibility study. \u003cem\u003eInternet interventions\u003c/em\u003e, \u003cem\u003e25\u003c/em\u003e, 100395. https://doi.org/https://doi.org/10.1016/j.invent.2021.100395\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eNorthrup, H., Aronow, M. E., Bebin, E. M., Bissler, J., Darling, T. N., de Vries, P. J., Frost, M. D., Fuchs, Z., Gosnell, E. S., \u0026amp; Gupta, N. (2021). Updated international tuberous sclerosis complex diagnostic criteria and surveillance and management recommendations. \u003cem\u003ePediatric Neurology\u003c/em\u003e, \u003cem\u003e123\u003c/em\u003e, 50\u0026ndash;66. https://doi.org/https://doi.org/10.1016/j.pediatrneurol.2021.07.011\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eO'Callaghan, F. J., Shiell, A. W., Osborne, J. P., \u0026amp; Martyn, C. N. (1998). Prevalence of tuberous sclerosis estimated by capture-recapture analysis. \u003cem\u003eThe Lancet\u003c/em\u003e, \u003cem\u003e351\u003c/em\u003e(9114), 1490. https://doi.org/https://doi.org/https://doi.org/10.1016/S0140-6736(05)78872-3\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eOsborne, J. P., Fryer, A., \u0026amp; Webb, D. (1991). Epidemiology of tuberous sclerosis. \u003cem\u003eAnnals of the New York Academy of Sciences\u003c/em\u003e, \u003cem\u003e615\u003c/em\u003e(1), 125\u0026ndash;127.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003ePulsifer, M. B., Winterkorn, E. B., \u0026amp; Thiele, E. A. (2007). Psychological profile of adults with tuberous sclerosis complex. \u003cem\u003eEpilepsy \u0026amp; Behavior\u003c/em\u003e, \u003cem\u003e10\u003c/em\u003e(3), 402\u0026ndash;406. https://doi.org/https://doi.org/10.1016/j.yebeh.2007.02.004\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eQualtrics. (2020). \u003cem\u003eQualtrics\u003c/em\u003e. Provo, Utah, USA. https://www.qualtrics.com\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eRentz, A. M., Skalicky, A. M., Pashos, C. L., Liu, Z., Magestro, M., Pelletier, C. L., Prestifilippo, J. A., Nakagawa, J., Frost, M. D., \u0026amp; Dunn, D. W. (2015). Caring for children with tuberous sclerosis complex: what is the physical and mental health impact on caregivers? \u003cem\u003eJournal of Child Neurology\u003c/em\u003e, \u003cem\u003e30\u003c/em\u003e(12), 1574\u0026ndash;1581. https://doi.org/https://doi.org/10.1177/0883073815575364\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eRitchie, J., \u0026amp; Spencer, L. (2002). Qualitative data analysis for applied policy research. In \u003cem\u003eAnalyzing qualitative data\u003c/em\u003e (pp. 173\u0026ndash;194). Routledge. https://doi.org/https://doi.org/10.4324/9780203413081-10\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eRosen, P. J., Epstein, J. N., \u0026amp; Van Orden, G. (2013). I know it when I quantify it: Ecological momentary assessment and recurrence quantification analysis of emotion dysregulation in children with ADHD. \u003cem\u003eADHD Attention Deficit and Hyperactivity Disorders\u003c/em\u003e, \u003cem\u003e5\u003c/em\u003e, 283\u0026ndash;294. https://doi.org/https://doi.org/10.1007/s12402-013-0101-2\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eRosen, P. J., \u0026amp; Factor, P. I. (2015). Emotional impulsivity and emotional and behavioral difficulties among children with ADHD: An ecological momentary assessment study. \u003cem\u003eJournal of Attention Disorders\u003c/em\u003e, \u003cem\u003e19\u003c/em\u003e(9), 779\u0026ndash;793. https://doi.org/https://doi.org/10.1177/10870547124630\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eRosser, T., Panigrahy, A., \u0026amp; McClintock, W. (2006). The diverse clinical manifestations of tuberous sclerosis complex: a review. \u003cem\u003eSeminars in pediatric neurology\u003c/em\u003e, \u003cem\u003e13\u003c/em\u003e(1), 27\u0026ndash;36. https://doi.org/https://doi.org/10.1016/j.spen.2006.01.008\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eSimblett, S., Greer, B., Matcham, F., Curtis, H., Polhemus, A., Ferr\u0026atilde;o, J., Gamble, P., \u0026amp; Wykes, T. (2018). Barriers to and facilitators of engagement with remote measurement technology for managing health: systematic review and content analysis of findings. \u003cem\u003eJournal of medical Internet research\u003c/em\u003e, \u003cem\u003e20\u003c/em\u003e(7), e10480. https://doi.org/https://doi.org/10.2196/10480\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eSkrobanski, H., Vyas, K., Bowditch, S., Hubig, L., Dziadulewicz, E., Fish, L., Takhar, P., \u0026amp; Lo, S. H. (2023). The burden of caring for individuals with tuberous sclerosis complex (TSC) who experience epileptic seizures: a descriptive UK survey. \u003cem\u003ePharmacoEconomics-Open\u003c/em\u003e, \u003cem\u003e7\u003c/em\u003e(2), 299\u0026ndash;312. https://doi.org/https://doi.org/10.1007/s41669-023-00387-1\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eSlegtenhorst, M. v., Hoogt, R. d., Hermans, C., Nellist, M., Janssen, B., Verhoef, S., Lindhout, D., Ouweland, A. v. d., Halley, D., \u0026amp; Young, J. (1997). Identification of the tuberous sclerosis gene TSC1 on chromosome 9q34. \u003cem\u003eScience\u003c/em\u003e, \u003cem\u003e277\u003c/em\u003e(5327), 805\u0026ndash;808. https://doi.org/https://doi.org/10.1126/science.277.5327.805\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eTong, A., Sainsbury, P., \u0026amp; Craig, J. (2007). Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups. \u003cem\u003eInternational journal for quality in health care\u003c/em\u003e, \u003cem\u003e19\u003c/em\u003e(6), 349\u0026ndash;357. https://doi.org/10.1093/intqhc/mzm042\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eTye, C., Mcewen, F. S., Liang, H., Underwood, L., Woodhouse, E., Barker, E. D., Sheerin, F., Yates, J. R., Bolton, P. F., \u0026amp; Group, T. S. S. (2020). Long-term cognitive outcomes in tuberous sclerosis complex. \u003cem\u003eDevelopmental Medicine \u0026amp; Child Neurology\u003c/em\u003e, \u003cem\u003e62\u003c/em\u003e(3), 322\u0026ndash;329. https://doi.org/https://doi.org/10.1111/dmcn.14356\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eWillis, E. R., \u0026amp; McDonagh, J. E. (2018). Transition from children\u0026rsquo;s to adults\u0026rsquo; services for young people using health or social care services (NICE Guideline NG43). \u003cem\u003eArchives of Disease in Childhood-Education and Practice\u003c/em\u003e, \u003cem\u003e103\u003c/em\u003e(5), 253\u0026ndash;256. https://doi.org/https://doi.org/10.1136/archdischild-2017-313208\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eWilson, N. J., Chen, Y. W., Mahoney, N., Buchanan, A., Marks, A., \u0026amp; Cordier, R. (2020). Experience sampling method and the everyday experiences of adults with intellectual disability: A feasibility study. \u003cem\u003eJournal of Applied Research in Intellectual Disabilities\u003c/em\u003e, \u003cem\u003e33\u003c/em\u003e(6), 1328\u0026ndash;1339. https://doi.org/https://doi.org/10.1111/jar.12753\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eYates, J. R. (2006). Tuberous sclerosis. \u003cem\u003eEuropean journal of human genetics\u003c/em\u003e, \u003cem\u003e14\u003c/em\u003e(10), 1065\u0026ndash;1073. https://doi.org/https://doi.org/10.1038/sj.ejhg.5201625\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eYates, J. R., MacLean, C., Higgins, J. N. P., Humphrey, A., le Mar\u0026eacute;chal, K., Clifford, M., Carcani-Rathwell, I., Sampson, J. R., \u0026amp; Bolton, P. F. (2011). The Tuberous Sclerosis 2000 Study: presentation, initial assessments and implications for diagnosis and management. \u003cem\u003eArchives of disease in childhood\u003c/em\u003e, \u003cem\u003e96\u003c/em\u003e(11), 1020\u0026ndash;1025. https://doi.org/http://dx.doi.org/10.1136/adc.2011.211995\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eZimmermann, F., \u0026amp; Endermann, M. (2008). Self\u0026ndash;proxy agreement and correlates of health-related quality of life in young adults with epilepsy and mild intellectual disabilities. \u003cem\u003eEpilepsy \u0026amp; Behavior\u003c/em\u003e, \u003cem\u003e13\u003c/em\u003e(1), 202\u0026ndash;211. https://doi.org/https://doi.org/10.1016/j.yebeh.2008.02.005\u003c/span\u003e\u003c/li\u003e\u003c/ol\u003e"}],"fulltextSource":"","fullText":"","funders":[],"hasAdminPriorityOnWorkflow":false,"hasManuscriptDocX":true,"hasOptedInToPreprint":true,"hasPassedJournalQc":"","hasAnyPriority":false,"hideJournal":true,"highlight":"","institution":"","isAcceptedByJournal":false,"isAuthorSuppliedPdf":false,"isDeskRejected":"","isHiddenFromSearch":false,"isInQc":false,"isInWorkflow":false,"isPdf":false,"isPdfUpToDate":true,"isWithdrawnOrRetracted":false,"journal":{"display":true,"email":"[email protected]","identity":"researchsquare","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":true,"externalIdentity":"","sideBox":"","snPcode":"","submissionUrl":"/submission","title":"Research Square","twitterHandle":"researchsquare","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"","reportingPortfolio":"","inReviewEnabled":false,"inReviewRevisionsEnabled":true},"keywords":"Tuberous Sclerosis Complex, Ecological Momentary Assessment, Experience Sample Method, focus group, qualitative, young adult, parent, smartphones, rare disease.","lastPublishedDoi":"10.21203/rs.3.rs-5826894/v1","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.3.rs-5826894/v1","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"\u003ch2\u003eBackground\u003c/h2\u003e \u003cp\u003e Young adults with rare genetic conditions, such as Tuberous Sclerosis Complex (TSC), and their parents/caregivers can experience challenges in daily life during the transition from childhood to young adulthood. Smartphone ecological momentary assessment (smart EMA) has the potential to address limitations in standardised cross-sectional assessments as it can provide detailed information on daily challenges and fluctuations. Although some young adults with TSC use smartphones, many still require the support of parents/caregivers to communicate their feelings or access technology. Framework analysis was used to explore the hypothetical acceptability of the use of smart EMA from parent/caregiver perspectives in monitoring the daily experiences of young adults with TSC.\u003c/p\u003e\u003ch2\u003eResults\u003c/h2\u003e \u003cp\u003e Seven parents of young adults with TSC (Female\u0026thinsp;=\u0026thinsp;6, age range 54:64) participated in online focus groups. Four main themes were generated. The first two themes describe the experiences of becoming a young adult with TSC for both the young adults and their parents (Impact of Transition and Impact of TSC on Young Adulthood). The third theme explains how a smart EMA app could be integrated into young adults and parents\u0026rsquo; everyday lives to support independence (How an EMA App Could Help). The final theme describes what would help or stop the young adults and their parents from using the app (Hypothetical Barriers and Facilitators). This includes familiarity with questions and behaviours, sharing the app between caregivers and the need for personalisation.\u003c/p\u003e\u003ch2\u003eConclusions\u003c/h2\u003e \u003cp\u003e Young adults with TSC continue to present with associated psychiatric difficulties which are associated with continued and new concerns for parents. There are multiple ways in which smart EMA could be integrated into supporting young adults with TSC utilising parent or caregiver support. However, consideration must be taken into the design and protocol of a smart EMA app to ensure its appropriateness for the varied level of support young adults with TSC require. Further testing of hypothesised moderators is required to conclude the feasibility and acceptability of smart EMA for young adults with TSC and other rare genetic diseases who continue to require parent/caregiver support for daily functioning.\u003c/p\u003e","manuscriptTitle":"Transition experiences from childhood to adulthood in individuals with Tuberous Sclerosis Complex (TSC) and the use of smartphone monitoring: A qualitative analysis of parent perspectives.","msid":"","msnumber":"","nonDraftVersions":[{"code":1,"date":"2025-03-28 17:12:15","doi":"10.21203/rs.3.rs-5826894/v1","editorialEvents":[{"type":"communityComments","content":0}],"status":"published","journal":{"display":true,"email":"[email protected]","identity":"researchsquare","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":true,"externalIdentity":"","sideBox":"","snPcode":"","submissionUrl":"/submission","title":"Research Square","twitterHandle":"researchsquare","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"","reportingPortfolio":"","inReviewEnabled":false,"inReviewRevisionsEnabled":true}}],"origin":"","ownerIdentity":"e89998a1-3903-4324-961e-0be871d207c4","owner":[],"postedDate":"March 28th, 2025","published":true,"recentEditorialEvents":[],"rejectedJournal":[],"revision":"","amendment":"","status":"posted","subjectAreas":[],"tags":[],"updatedAt":"2025-09-01T09:31:48+00:00","versionOfRecord":[],"versionCreatedAt":"2025-03-28 17:12:15","video":"","vorDoi":"","vorDoiUrl":"","workflowStages":[]},"version":"v1","identity":"rs-5826894","journalConfig":"researchsquare"},"__N_SSP":true},"page":"/article/[identity]/[[...version]]","query":{"redirect":"/article/rs-5826894","identity":"rs-5826894","version":["v1"]},"buildId":"8U1c8b4HqxoKbykW_rLl7","isFallback":false,"isExperimentalCompile":false,"dynamicIds":[84888],"gssp":true,"scriptLoader":[]}