{"paper_id":"bf5b8c4c-c464-45cf-ba7c-e0643853a83e","body_text":"Feasibility, acceptability, and added value of electronic patient-generated data on self-care use for people with musculoskeletal conditions: a mixed method study | Research Square window.SnipcartSettings = { analytics: { enabled: false } }; (function() { var accessVector = localStorage.getItem('access_vector') || ''; window.dataLayer = window.dataLayer || []; if (accessVector) { window.dataLayer.push({ user: { profile: { profileInfo: { snid: accessVector } } } }); } })(); (function(w,d,s,l,i){w[l]=w[l]||[];w[l].push({'gtm.start':new Date().getTime(),event:'gtm.js'});var f=d.getElementsByTagName(s)[0],j=d.createElement(s),dl=l!='dataLayer'?'&l='+l:'';j.async=true;j.src='https://www.googletagmanager.com/gtm.js?id='+i+dl;f.parentNode.insertBefore(j,f);})(window,document,'script','dataLayer','GTM-K279D39R'); Browse Preprints In Review Journals COVID-19 Preprints AJE Video Bytes Research Tools Research Promotion AJE Professional Editing AJE Rubriq About Preprint Platform In Review Editorial Policies Our Team Advisory Board Help Center Sign In Submit a Preprint Cite Share Download PDF Research Article Feasibility, acceptability, and added value of electronic patient-generated data on self-care use for people with musculoskeletal conditions: a mixed method study Susan F Moschogianis, Stephanie Lyons, Niels Peek, Meghna Jani, and 5 more This is a preprint; it has not been peer reviewed by a journal. https://doi.org/ 10.21203/rs.3.rs-7264851/v1 This work is licensed under a CC BY 4.0 License Status: Under Review Version 1 posted 11 You are reading this latest preprint version Abstract Background: Self-care for people with musculoskeletal conditions often includes taking pain-relieving medication at times of need and organising help with daily activities (social care). Information on this self-care is not systematically documented by healthcare providers but could be generated by patients themselves. Aims: To assess the feasibility, acceptability and added value of electronic patient-generated data on opioid, over-the-counter medication and supplement use, and social care use in people with musculoskeletal conditions. Methods: Adults with a musculoskeletal condition from an outpatient department in England completed a web-based questionnaire on their medication and/or social care use every two weeks for six months. Using a sequential mixed-methods approach, we analysed questionnaire response rates and completeness, and transcripts from interviews with patients. We also compared patient-generated self-care data to data recorded in electronic health records. Results: Of 102 people invited, thirty-six consented to take part; reasons to decline included no access to technology or unwillingness to use it for collecting self-care data, and physical limitations due to people’s condition. All those consenting completed at least one questionnaire, with twenty-two of them completing ≥80% of questionnaires. Participants identified potential benefits of data collection (e.g., to support self-monitoring and patient-led consultations) and considered it feasible to continue this longer term. We found that patient-generated self-care data contributed new information on (changes over time in) medication (e.g. medication frequency, side effects, and supplement use) and social care use (e.g. level of formal/informal support received) compared to data in the electronic health record. Conclusions: People with musculoskeletal conditions found it feasible and acceptable to collect electronic patient-generated data on self-care, which complemented information recorded by clinicians in electronic health records, including changes in self-care use over time. Healthcare providers should therefore consider collecting patient-generated self-care data to enhance service delivery and patient outcomes, and to enrich musculoskeletal research. Clinical trial number: Not applicable patient-reported outcome measures remote monitoring patient-generated health data musculoskeletal diseases Figures Figure 1 Figure 2 Introduction Long-term health conditions result in significant personal, social, health and economic costs across the world (World Health Organisation, 2002). Over 41% of adults in the United Kingdom (UK) have a long-term condition (NHS digital., 2022), accounting for two-thirds of outpatient appointments and over 70% of the total health and care spend (Department of Health, 2012). An aging population and increased number of people living with complex needs has led to ongoing rising demands on health and social care services, and a need for health and care services to operate in a coordinated way (NHS England). Related to this, the role of the patient is also evolving, with a growing emphasis on supported self-management and self-care. Self-care involves the things people do to protect their health and manage their illness, including taking medications to manage pain, and engaging in specific routines and activities (e.g. eating healthily or attending physiotherapy; Department of Health, 2005). Musculoskeletal conditions, such as low back pain and arthritis, are an example of a prevalent long-term condition. They affect the joints, bones, muscles and soft-tissues, and are characterised by pain, reduced physical function, high rates of comorbidities, and increased mortality (Briggs et al., 2018; World Health Organisation., 2022). Musculoskeletal conditions are the leading contributor to disability worldwide, affecting over 1.7 billion people (World Health Organisation, 2022; Cieza et al., 2021) and represent some of the most common clinical indications for being prescribed opioids in the UK (Medina et al., 2024) Patient self-care in the context of musculoskeletal conditions can include taking pain-relieving medications, such as prescription opioids, over-the-counter analgesia (e.g., paracetamol), or supplements as part of their medication regime (Bedson et al., 2016; Soomro et al., 2024). Given the potential for drug interactions (Michos et al., 2021) and the impact of non-serious side effects of medication on people’s quality of life (Rana et al., 2021), this information is of clinical importance. Yet, it is seldom recorded (comprehensively) in people’s electronic health records. For example, people are often prescribed opioids on an as-required basis with variability in their free text instructions (e.g., co-codamol 30/500 one to two tablets up to four times a day; Jani et al., 2023) but the exact dosage they take is not included in their medical records (Kidner et al., 2009). People may also buy medication over the internet or borrow them from a family member without this being recorded during clinic consultations (Soomro et al., 2024). This means a comprehensive understanding of people’s medications and side effects, be it for direct care or other (secondary) purposes, relies on self-reported data. People with musculoskeletal diseases may also require social care. This is defined as help received with a range of daily activities (e.g., washing and dressing, cooking meals, or going shopping; Humphreys et al., 2022), and can be provided both formally (by local authorities and care services) and informally (by friends and families). However, the extent of (particularly informal) social care use is often unclear, including if and how it varies through time. The need and cost to both carers and people with musculoskeletal diseases therefore remains underestimated (Humphreys et al., 2022; Soomro et al,. 2024). This missing information means opportunities may be lost to better inform patient treatment plans and provide person-centred and coordinated care. Healthcare professionals may not routinely ask about and record information about self-care in clinic. This may be because appointments are time-limited, with some professionals already spending more than half of their working day interacting with electronic health records (Arndt et al., 2017). But with digital technologies becoming increasingly prevalent, there is a possibility of asking patients to capture this information electronically in-between visits. Electronic patient-generated health data (ePGHD) is “health data generated by and from patients” and can be collected remotely via mobile apps, websites and wearables (Omoloja & Vundavalli, 2021, pg. 1; Bourke et al., 2021). ePGHD enables capturing fluctuations in musculoskeletal patients’ medication and social care use, and complementing information on self-care data currently recorded in health records. This may ultimately enhance patient engagement in and access to care, accuracy and ease of patient-clinician communication, and health outcomes (Omoloja & Vundavalli, 2021; Shapiro et al., 2012). Previous research showed that collecting ePGHD was feasible and acceptable to people with musculoskeletal conditions (Austin et al., 2020., Watson et al., 2024., Renskers et al., 2024.,Seppen et al., 2023; Arumalla., 2023). However, this mostly concerned data on symptom experience and quality of life, leaving it unclear whether this is also true for ePGHD about self-care. For example, people may worry about the negative stigma of reporting opioid use due to its association with dependence (Bulls et al, 2019), changes to opioid prescription if they report additional over-the-counter use (e.g. co-codamol; Ducharme & Moore, 2019; Sobczak & Gorynski, 2020), or reduction of disability or carers’ allowances if they report receiving substantial additional informal support (i.e. ‘fearing the brown envelope’; Garthwaite, 2014). Therefore, this study aimed to assess the feasibility and acceptability of collecting ePGHD on (opioid and over-the-counter) medication, supplement, and social care use in people with musculoskeletal diseases, and the added value of this information compared to what had been recorded in electronic health records. Methods Study Design and context We conducted a mixed-methods study in one outpatient rheumatology department in Greater Manchester, England (UK). We combined quantitative and qualitative data sequentially, before merging for triangulation and completeness (Aschbrenner et al., 2002). We collected data through recruitment logs, online questionnaires, electronic health record reviews, and semi-structured interviews. We obtained ethical approval for the study from the NHS (Wales, Research Ethics Committee 6, IRAS: 306827) and research was conducted in accordance with the Declaration of Helsinki. We reported our study in line with the Good Reporting of A Mixed Methods Study (GRAMMS) guidance (O’Cathain et al., 2008) and described the data collection platform using the Template for Intervention Description and Replication (TIDieR) checklist (Hoffmann et al.,2014; Supplementary File S1). Theoretical frameworks We used the Theoretical Framework of Acceptability version 2 (TFAv2; Sekhon et al., 2017) to guide study design, data collection, and analysis and interpretation of findings. The TFAv2 is a multi-construct, theoretical framework of acceptability of healthcare interventions (in our case, ePGHD collection) that can be used in retrospective assessments (Sekhon et al., 2017). The TFA comprises seven domains: affective attitude (how individuals feel about taking part in an intervention), burden (the amount of effort required to engage with an intervention), perceived effectiveness (whether individuals perceive an intervention as likely to achieve its purpose), ethicality (the extent to which an intervention fits with individuals’ personal values), intervention coherence (whether individuals understand an intervention and how it works), opportunity costs (what is given up, such as time, to take part in an intervention), and self-efficacy (how confident individuals are doing the intervention). The TFA therefore permits a comprehensive assessment of intervention acceptability and allows opportunities to make iterations to interventions based on these specific domains (Deribe, L et al., 2024; Murphey AL et al., 2019; Hurley, R et al., 2023). Recruitment and eligibility of study participants Adult patients with musculoskeletal disease were eligible if they met the criteria as listed in Box 1. Members of patients’ usual clinical team approached potentially eligible people during their routine appointment (Jan 2023-Sept 2023) and signposted those interested to the study team who provided study information, answered questions, and obtained written informed consent. To complement study site recruitment, we recruited people via a concurrently running survey on a related topic (Soomro et al., 2024) who agreed to be contacted for future research studies. Potential participants were informed that those who completed four consecutive data entries would be included in a prize draw for a £30 shopping voucher. Box 1. Study eligibility criteria Aged ≥18 years Diagnosis of any musculoskeletal condition Visited rheumatology outpatient department within the last six months. Registered with a GP within the hospital’s catchment area* Own/have access to device connected to the internet Able to read/understand English independently or with help from carer/relative. Have an opioid prescription and/or use at least one type of formal (e.g. local authority-organised) or informal (e.g. unpaid neighbour) social care** in the last month. * To ensure researcher access to primary care records for comparing ePGHD on self-care and self-care data in electronic health records (see below) ** Includes help with: having a bath or shower/washing your face and hands/dressing or undressing/ using the toilet; getting in and out of bed/eating, including cutting up food/taking the right amount of medicine at the right times/getting around indoors/ getting up and down stairs; getting out of the house/shopping for food/doing routine housework or laundry/ doing paperwork or paying bills Procedure for collecting ePGHD on self-care use Web-based questionnaire for collecting ePGHD We asked participants to collect ePGHD via an online questionnaire (developed in Qualtrics XM). The questionnaire was co-designed with input from health professionals, researchers, and a patient and public involvement group of people living with a musculoskeletal condition. The research team developed an initial list of ePGHD items and obtained feedback from the group during an initial virtual workshop, with a focus on prioritising important and removing unnecessary items. This resulted in three item sets; i)‘About you’ (4 questions: pain, emotional well-being, ability to complete physical tasks, fatigue); ii) ‘Medication use’ (questions on opioid/over-the-counter drugs used, frequency and dose, any medication side effects, and use of additional supplements), and iii) ‘Help received’ (5 questions about the level and purpose of formal/informal social care needed). See Supplementary File S2 for the full questionnaire. The group also determined the frequency of data collection and acceptable average questionnaire completion time. During a second virtual workshop, the group commented on a prototype version of the questionnaire, co-produced participant instructions, and proposed engagement and participant support activities (Supplementary File S1). On-boarding of consented participants Consenting participants received personalised links to the online questionnaire and completion instructions via e-mail. We also asked them to complete an additional, one-off online questionnaire on baseline demographic characteristics (e.g., gender, ethnicity, self-reported diagnosis). If participants had difficulty accessing their link, they could request help from a member of the research team at any time throughout ePGHD collection. Participants were considered on-boarded if they successfully completed the demographic questionnaire and at least one ePGHD questionnaire. Completing ePGHD questionnaires Once onboarded, participants received bi-weekly reminder emails to complete their follow-up ePGHD questionnaires. Participants could choose whether to also receive reminders via text message. Depending on whether they had an opioid prescription and/or used social care (see eligibility criteria in Box 1), we asked them to submit ePGHD on ‘medication use’ and/or ‘Help received’, respectively, every two weeks for six months. They could submit additional questionnaires in between scheduled timepoints, if they wished. If participants did not submit information for three consecutive time points (i.e., six weeks), the research team contacted them via email or telephone call to offer support. At months 2 and 4, participants received a study newsletter, and those who completed their ePGHD collection period received a £20 shopping voucher to thank them for their time. Data collection and analysis We used both qualitative and quantitative data sources to evaluate acceptability, feasibility, and added value of ePGHD on self-care (Table1). Table 1: Data source table for evaluation of acceptability, feasibility, and added value of ePGHD on self-care. Quantitative data sources Qualitative data sources Feasibility Screening/recruitment logs On-boarding rates ePGHD completion rates Qualitative interviews Reasons to decline participation Acceptability ePGHD completion rates Qualitative interviews Reasons to decline participation Added value Availability of self-care data available in electronic health records Qualitative interviews Abbreviations: ePGHD, electronic patient-generated health data Participation rates and reasons for declining participation Local and study team staff kept screening and recruitment logs to track the number of eligible patients invited, consented and on-boarded, as well as potential participants’ reasons for declining to take part. To evaluate acceptability and feasibility, we analysed these log entries descriptively and calculated the conversion rates for each step (i.e. from invitation to consenting to on-boarding). ePGHD completion rates Participants were asked to submit data at 13 time points (i.e., due dates) over six months. The data collection period began when a participant had been on-boarded; additional entries were treated separately and defined as ‘non-scheduled questionnaires’. Questionnaires completed within 10 days of a due date were considered ‘scheduled’ and allocated to that time point. We calculated individual participants’ scheduled questionnaire completion levels by dividing the number of completed scheduled questionnaires by 13, and used the mean (± standard deviation, SD) scheduled questionnaire completion level to assess feasibility across our sample. We also visualised the distribution of participants’ completion levels in the form of dot plots. Comparison between ePGHD on self-care and self-care data in electronic health records To assess the added value of collecting ePGHD on medication and social care use, we evaluated to what extent this information was already available in participants’ primary and secondary electronic health records. For each patient, we screened rheumatology outpatient clinic letters in secondary care records from the six months before people entered the study. If no rheumatology letters were available, clinic letters from other specialities from the same period were considered. For availability of social care use data, we additionally checked new referral rheumatology clinic letters. Each participant’s primary care record was also reviewed. We used a structured template to record if information was available on opioid use (e.g., name of drug, frequency and dose), medication side effects, use of additional supplements, and use of formal/informal social care (including level of care and details of specific supported tasks; see Supplementary File S3). When letters in one record signposted to relevant information in the other record but without providing further details (e.g., secondary care letters signposting “pain relief as per primary care record”), we considered information as ‘recorded’ in both. Missing information (e.g. no social care status or no prescription opioid) was tallied, and discrepancies across data sources highlighted. Qualitative interviews We invited all participants to participate in a semi-structured interview at the end of their data collection period to explore acceptability, feasibility and perceived added value of collecting ePGHD. The theoretical frameworks guided development of the interview guide (see Supplementary File S4), which covered participants’ perceptions and attitudes towards collecting ePGHD in general, and their experience of collecting ePGHD during the study. Although participants understood that their ePGHD would not be viewed by clinicians during the study period, interviews also covered how ePGHD could be used in the future to inform direct care. We used participants’ responses to their 2-weekly ePGHD questionnaires as prompts during interviews to seek clarification and context on ePGHD feasibility. Interviews took place via telephone and were audio-recorded and transcribed verbatim by a professional secretarial service for analysis. Interviewees received an additional £20 shopping voucher. We analysed data using principles of Framework Analysis (Spencer et al., 2003). The analysis included two stages of coding; early coding was conducted inductively (i.e. codes were generated based on what was in the data), followed by mapping of the initial codes to domains of the TFAv2 to interpret the results. One researcher (SM) completed the coding process independently using NVivo 12 and then discussed codes and agreed themes with another (SNvdV). Integrative analysis and synthesis We triangulated findings between quantitative and qualitative data sources using a convergence coding matrix that displayed data from across all sources (Farmer et al., 2006). This enabled us to compare and contrast findings, and integrate them for final analysis and drawing conclusions. Results Decline rates and reasons Figure 1 shows that we invited a total of 102 patients to participate, of which 61 (60%) responded. Reasons for declining participation included no access to appropriate technology or unwilling to use it for collecting ePGHD (n=8), and a diagnosed musculoskeletal condition that resulted in impaired dexterity (n=3). Characteristics of participants A total of 36 participants consented to take part, of which 78% were female (mean age=57.5yrs, range 28-88yrs). Twenty participants took part in a qualitative interview (participant demographics in Table 2). Table 2: Participant characteristics Characteristic * All participants (n=36) Interviewees (n=20) Age (years; m ean ± standard deviation ) 57.5 ± 19.09 58.2 ± 17.02 Female sex, n (%) 29 (81) 17 (85) Occupation, n (%) Employed 7 (20) 3 (15) Unemployed Long-term sick/disabled 5 (14) 5 (14) 4 (20) 2 (10) Retired 17 (47) 10 (50) Other ** 2 (6) 1 (5) Responder type, n (%) Medication use Social care use Both 6 (16) 15 (42) 15 (42) 1 (5) 9 (45) 10 (50) * Data on ethnicity was collected, but not reported due to small sample size ** Other – including students and full-time carers. ePGHD questionnaire completion All participants (n=36) who consented were successfully onboarded by completing the demographics questionnaire at baseline and their first ePGHD questionnaire, with four participants (11%) needing follow-up emails and additional support to do this. Two (6%) participants then requested to stop completing the questionnaires citing personal commitments and health issues. Two other participants (6%) were non-responsive following the initial ePGHD questionnaire. Ten (28%) of the participants requested text reminders. The average number of completed scheduled questionnaires across all 36 consented participants was 9 ±4 (range, 1 to 13), with 22 (61%) submitting at least 80% of all scheduled questionnaires. Nine participants (25%) completed all 13 questionnaires (Figure 2). Six participants (17%) submitted >1 additional questionnaires, and two (6%) submitted ≥4. Comparison between ePGHD on self-care and self-care data in electronic health records ePGHD on medication use (including side effects) Table 3 shows that information on opioid prescription and dosage generally aligned with what was documented in both primary and secondary care records for all participants reporting ePGHD on medication use. However, some reported taking additional opioid/over-the-counter medications in their ePGHD than detailed in their records (n=5). Some other participants contributed inaccurate information, for example, by confusing prescription and non-prescription medications (n=2). Opioid medications were prescribed to take “as required”, and despite all participants reporting frequency of opioid use in ePGHD, this information was not available in any of the patients’ health records. Also, use of over-the-counter medication and supplements (e.g., Cannabidiol oil, vitamins) was underreported in health records, as were side effects (while nearly all participants reported these; most frequently dry mouth (60%), constipation (41%) and brain fog/fatigue (41%)). Social care ePGHD Social care information was largely absent from both primary and secondary health records (Table 3). Even for those receiving formal or substantial social care, references were brief and recorded years previously. For example, for one participant currently receiving formal, paid care, only “has carer” had been recorded in their primary care record two years previously. Secondary care records sometimes contained general references to social care use within new patient letters but social care use was seldom mentioned in more recent letters, with very few providing further detail (e.g., on specific tasks that a person required help with, or the level of support they needed). Only on one occasion, social care use was noted in the electronic health record but not in the ePGHD, where it appeared in the interview that the participant had failed to count a family member as providing informal care. Table 3. Summary table of availability of data on self-care use in the different sources; values reflect the number of participants for whom certain information was available in particular data source Information Type ePGHD Self-care data in secondary care electronic health records Self-care data in primary care electronic health records Medication Use (n=21) Opioid prescription and dosage 21 21 21 Opioid frequency of use 21 0 0 Medication Sharing* 2 0 0 Medication Side Effects 20 1 2 Over-the-Counter Medication Use 20 7 Specific medications 4 General references only** 0 Supplement Use 12 0 1 Social Care use (n=30) Formal social support 1 0 1 *** Informal social support 29 8 General references only**** 1 ***** Specific tasks requiring support 30 2 0 Level of support (e.g. hours per week/times per week) 30 1 0 *Opioid medication sharing/borrowing e.g. from friends and family ** e.g. “ anti-inflammatories as required ” *** “ Has carer ” **** e.g. “Help available at home” or “Attended appointment supported by…” ***** e.g. “Lives alone, help available” Qualitative interviews We conducted 20 interviews (mean length = 31 Minutes, range 16-56 minutes) over the telephone between September 2023 and March 2024. Interviewees included one person (3%) who had withdrawn participation and 6 (30%) who had completed <0% of their ePGHD questionnaires. Table 4 presents the qualitative findings pertaining to feasibility, acceptability, and added value, mapped to TFA constructs and illustrated with example quotes. Table 4. Qualitative findings on feasibility, acceptability, and added value of collecting ePGHD on self-care, mapped to TFA (ref) constructs and illustrated with example quotes. TFA construct Illustrative quote Affective attitude “That’s how I think positively…I’ve not been as much dependent [this week], I can reduce an hour less. So it gives me more a push for myself, I can do it!” Participant 13, female, informal care “I’ve taken a much more conscientious attitude to my health. I think, in part, because of the study” Participant 19, male, informal care “Sometimes you feel really bad, thinking do I really put that much pressure on my family? Am I stopping them doing what they want to do with their own life?” Participant 26, female, medication and informal care Burden “It was simple to use…I could stick with it because I knew it was fairly quick” Participant 12, female, informal care “it doesn’t take a lot out of your day, you can do it while you’re having a cup of tea”. Participant 35, female, medication and informal care “T here was a couple of episodes when I forgot to fill it in because I had stuff going on in my life where I was stressed out and stuff and I kept forgetting that I had to fill it in” Participant 4, female, medication and informal care Ethicality “If there’s just one way I can give back…it’s something I’d do” Participant 8, female, informal care “You think the [HCP] knows best because they’re the qualified person, but your body is telling you something different….I think you have a responsibility to say it”. Participant 17, female, medication Intervention coherence “ It would give them a more immediate view of how you’re doing, and how you’d been progressing, week by week” Participant 18, male, medication and informal care “ So they know everything about you, from you” Participant 24, female, informal care “I s it just to help trainees and people who are learning?” Participant 4, female, medication and informal care “[level of support needed] is zero. If I want anything doing, my son would do it” Participant 30, female, informal care Opportunity costs “ My mental health got to me and, you know, I was just in that much pain, I just wanted to be left alone” Participant 4, female, medication and informal care (withdrawn) “I don’t know if I would have stuck with it- emotionally I was in a very different spot at the time [previous year when condition was severe]” Participant 19, male, informal care Perceived effectiveness “In the consultations, we both mention that he is my carer and what he needs to do for me, but I’ve not seen it documented anywhere… [collecting ePGHD] allows the appointment to be a little bit more patient led because the doctor has a better understanding of the patient before they even walk into the door. It means that they can have a more open conversation more quickly…” Participant 35, female, medication and informal care “W hen you’re at an appointment and you are not feeling 100 per cent, it is tempting to say, oh yeah I’m doing okay, but actually you’re doing okay that day but you’ve not been doing okay”. Participant 26, female, medication and informal care “They don’t ask the right questions, so you don’t tell them. But with this survey it is informing them of what life is like for me on a day to day basis. You get about 10 minutes with the consultant and he’s asking other questions...he’s not got time to ask you... I think he needs to know, but it’s not there at the minute. I couldn’t get in the shower without my husband’s help. I couldn’t put my underwear on. I couldn’t put my socks on. He’s never asked any of that” Participant 29, female, informal care “ if you had ten people in a row and they all had a thing that said take when needed and they’ve all got the same medical condition as me, it doesn’t mean that every one of us are going to take the same amount every day…you’re not going to remember how many you took that day because it was two months ago…So it’s giving them more of a clearer picture of your pain levels as well”. Participant 36, female, medication and informal care “The information [ePGHD] is useful, it’s whether people take note of it” Participant 19, male, informal care Self-efficacy “I’m not really good on computers, but then I got used to doing it” Participant 1, female, medication and informal care The problem I had [not completing] was I kept missing your links. That wasn’t deliberate by the way. It was just I kept missing the links ” Participant 3, male, medication “I t was when it was asking my dosage of my medications and I got mixed up a little bit…I got confused” Participant 20, female, medication and informal care Abbreviations: ePGHD, electronic patient-generated health data; TFA, theoretical framework of acceptability Integrative synthesis of qualitative and quantitative findings on feasibility, acceptability and added value Feasibility of collecting ePGHD on self-care Our data suggested that it is feasible to collect ePGHD on self-care in patients with musculoskeletal conditions but that lack of access to, or unwillingness to engage with, technology, and pain/stiffness in the hands may hamper patient engagement in collecting ePGHD on self-care. The consent to onboarding conversion rate reflected that most participants found the registration process straightforward: the majority completed their 6-month data collection period and completed ≥80% of the scheduled questionnaires. Only some participants required telephone support to onboard successfully. Others reported text messages to be useful prompts to complete questionnaires. Interviews indicated that people perceived the ePGHD items as relevant and mostly easy to understand. Some confusion arose for those on multiple/frequently changing medications. They suggested populating their prescribed medication directly from their medical records as a starting point for them to edit. The main barrier to feasibility were periods of ill-health and/or personal challenges (e.g., stress at work, periods of depression, worsening of symptoms) and two participants withdrew from the study for these reasons. Acceptability of collecting ePGHD on self-care Overall, interviewed participants found collecting self-care ePGHD acceptable. Completing questionnaires was described as requiring minimal effort, taking 5-10 minutes to complete, and easy to incorporate into their daily lives. Some participants chose to complete additional questionnaires and reported direct benefits from personal monitoring of their medication and social care use, either as a motivator (“ I can do this task without help now! ”) or as an opportunity to reflect on their symptoms (“ to really listen to my body ”). One participant described how the questionnaire served as another reminder of their condition. This was a sentiment echoed by some who completed <80% of scheduled questionnaires, and even those who completed all/most of the questionnaires reflected that they would have been unable to do so at other stages of their life ( “I’d have found it too upsetting”) . However, all participants felt that if collecting ePGHD was a pre-established routine, it would take less cognitive effort during these periods. Others indicated that acceptability during these periods of distress would increase if they had a better understanding of the potential direct benefits of collecting ePGHD for their care (“It would have been the better time to fill it in...when you’re struggling the most”). Participants felt strongly that if asked to contribute ePGHD, they should be provided with clear guidance on how often their data would be monitored (before appointment, or in-between), by whom (healthcare provider or research staff) and for what purpose (research or to inform individual treatment plans). One participant sought reassurance that the ePGHD could not be used punitively, for example to withdraw care support. Added value of ePGHD on self-care All participants could identify several benefits of collecting ePGHD on medication and social care use. Many found it useful to collect ePGHD to monitor their fluctuating support needs and use of over-the-counter and opioid medications. For example, one participant said it highlighted an escalating dependency, prompting them to seek medical help (“ It gave me a prod to go and do something about it. There was something wrong ”). Although prescribed medications were accurately named in health records, there was no or limited information on actual dosage, less serious side-effects, and on the use of supplements. All participants, however, felt it important for their healthcare provider to have a comprehensive understanding of their medication regime. Many described feeling rushed during in-person consultations, unable to recall medications taken, and some described an inability to articulate their level of pain/discomfort. Interviewees believed having information on their medication use, side effects, and symptoms available during their appointment would lead to more informed, patient-led discussions. Similarly, minimal information on formal and informal social care was found in participants’ health records, despite most participants reporting high levels of support in their ePGHD. None of the participants felt their social care needs were addressed during their clinic appointments, and that healthcare professionals did not understand the impact of living with a musculoskeletal condition on everyday life. On one hand, some participants recognised time pressures on professionals, and conceded that given time restraints, it was not surprising that consultations were medication-focused, rather than incorporating “personal matters”. On the other hand, others felt their care needs were dismissed ( “Because I don’t get official support from carers… I think it just gets pushed by the wayside...Informal help is taken for granted”) , reflected by the minimal information documented in health records ( e.g., “Help available at home”). They believed providing healthcare professionals insight into the specific tasks they struggled with would lead to more personalised, tailored treatment plans (“ You can find 10 people with same condition, all with a carer, needing very different levels of help”). Discussion Summary of main findings The main findings of the study were: (1) Collecting ePGHD on self-care was feasible and acceptable to most people. The majority of participants who consented to take part completed ≥80% of their scheduled questionnaires, considered the onboarding and collection process easy, and perceived collecting self-care ePGHD longer-term as beneficial; (2) Collecting self-care ePGHD may not be feasible and acceptable for everyone due to technological barriers and physical limitations specific to this patient group (e.g., impaired dexterity). Feasibility and acceptability may reduce during periods of physical and/or emotional ill-health; and (3) ePGHD on self-care substantially contributed additional information on medication and social care use not currently available in health records, including medication frequency, side effects, use of additional supplements, and formal and informal social care use. This suggested that ePGHD has significant added value by filling the current information gap on use of self-care in people with musculoskeletal conditions. Comparison to previous studies The high patient feasibility and acceptability in this study is consistent with previous research focusing on ePGHD on symptom experience in the context of musculoskeletal conditions (Austin et al., 2020; Watson et al., 2024; Benskers et al., 2024; Seppen et al., 2023). Aligned with the wider ePGHD literature, participants were motivated to collect ePGHD both for self-monitoring purposes and for facilitating better informed, more patient-led consultations (Zhu et al., 2016; Lavallee et al.,2020; Burns et al., 2019). Although in this study, the ePGHD was not reviewed by healthcare professionals to inform direct care, all participants considered this beneficial for similar efforts in the future. In contrast to previous research (Bulls et al., 2019), our participants were unconcerned about the negative stigma of opioid use and were happy to self-report it, assigning more importance to their health care professionals having a comprehensive picture of their medication use and pain levels. In keeping with the findings from Kinder et al (Kinder et al.., 2009), the actual dose of opioids was not documented in health records and two patients reported taking medications prescribed to someone else in their family. This information is especially relevant for informing clinical care and drug safety research because higher opioid doses, measured by morphine milligram equivalents, are incrementally associated with serious adverse events, such as deaths (Jani et al., 2025). Also, we found that use of supplements was underreported. Although these can be obtained without a prescription, there remains the risk of adverse effects or drug interactions (Michos et al., 2021). Similarly, and in line with others (Lopes et al. , Rana et al., 2021). we found that information on less serious side-effects of opioids (e.g., constipation and brain-fog) was limited in health records compared to ePGHD, whilst these can greatly impact patients’ quality of life (Rana et al., 2021). We found an absence of social care information documented in participants’ health records compared to their ePGHD, reflecting the participants’ perceptions that their care needs are not fully addressed during clinic appointments. Nearly all participants were in receipt of unpaid help from partners, family members or friends. Interestingly, one participant failed to report their son as providing informal support in ePGHD, as they believed that “didn’t count”. This was consistent with a 2022 study that found 74% of social care accessed by people with musculoskeletal conditions was received informally, and suggested the need and cost to both patients and carers were underestimated (Humphreys et al., 2022). Given the patient-reported use of informal support in this study, fear that this data would impact disability or carers allowance (Gorthwaite et al., 2016) did not seem to be a consideration for most participants in our study, with only one interviewee identifying this as a potential drawback of collecting self-care ePGHD. Although most participants in our study consistently submitted their ePGHD questionnaires, some reported that they would fail to do this during periods of high emotional stress or ill health, and others cited this as the reason for withdrawing from the study. Consistent with previous research, our findings suggest that patient motivation could be improved with an increased understanding of the purpose and benefit of collecting ePGHD on self-care, and reassurance that the data would be valued by health care professionals (Zhu et al 2016; Lavallee et al 2020; Adler-Milstei et al ). Strengths and limitations This is the first time feasibility, acceptability and added value of collecting patient generated data on self-care has been explored in patients with long-term conditions. However, one limitation is the selection of people taking part in our study: most participants were from a white British background, reflecting the predominant demographic of patients attending the clinic, and only participants who could read and write English were invited. Further studies will, therefore, need to investigate the feasibility and acceptability of collecting ePGHD for a more diverse sample, including non-English speakers, to confirm whether our findings generalise to these, often underrepresented, subgroups. A second, related limitation is that some patients may not have been given the opportunity to participate due to recruiting staff’s presumptions that the study would not be of interest, or that that technological or physical barriers would be prohibitive. Recruitment was supplemented by email invitations to patients who had recently completed an online survey about the musculoskeletal symptoms and medication use. Individuals with higher digital literacy and those with fewer concerns about reporting self-care data may therefore be overrepresented in our sample. Implications Implications for health care providers and policy makers The incorporation of ePGHD into routine clinical care could be transformative, providing a more comprehensive picture of a person’s condition (Gandrup et al., 2022). While recommended that healthcare providers should proactively ask about patients’ self-care (Soomro et al., 2024), this may be problematic due to time pressured appointments and current burden of electronic records (Arndt et al., 2017). Our data showed that information on medication and social care use can be feasibly captured from patients with a long-term condition, and that this input provided additional and accurate information not currently captured in health records. Therefore, health care providers and policy makers should promote and support collecting of self-care ePGHD to complement the picture of people’s medication and social care use over time. This would provide clinicians with key information on how well the disease is controlled; whether medication use is optimal (e.g. the need for opioid tapering) or if side effects require a change in; the impact of disease on people’s everyday lives; and on if patients’ care needs are being met or if further signposting to help and advice is needed. To support an integrated approach for those living with long-term conditions, there has been a call in the UK for health and care to be more co-ordinated (NHS England) but our findings on absent social care use data in health records suggest that this is not yet the case. Although arranging and monitoring social care use may go beyond the role of primary and secondary healthcare teams, policy makers should consider how best to capture and document social care use (Simpson et al., 2021), particularly for those relaying on informal/unpaid support. Implications for patients Our findings suggested that patients may find self-monitoring of their self-care use beneficial. In addition to identifying increased use and reliance on opioid and over-the-counter medications, patients tapering their medications, for example after changing their life style, could also track the impact of this intervention on their daily use. Similarly, tracking use of informal support at home can be used as a motivator to set personal targets, and a way to share information that patients perceive is not currently incorporated into their clinical care. Lastly, by frequently collecting self-care ePGHD, patients would have to rely less on their recall during time-pressured, infrequent clinic visits. Implications for researchers Researchers should consider incorporating ePGHD on self-care in their studies to help answer key questions pertaining to musculoskeletal conditions. For example, asking participants in pharmacoepidemiology studies to provide information on their medication use could reduce exposure misclassification, underestimation of frequency of medication-related harms, or missed interactions between prescribed medications and over-the-counter medications and supplements (Jani et al., 2023). Given that patients largely rely on informal care undocumented in health records (Humphreys et al.,2022), future epidemiological studies fully rely on ePGHD to help assess the true economic burden of musculoskeletal conditions. Conclusion Collecting self-care ePGHD was mostly feasible and acceptable to patients living with musculoskeletal conditions, providing information on medication (opioids and over-the-counter), supplements, and social care use not currently captured in routine health records. However, feasibility and acceptability varied depending on people’s technology access, physical capabilities, and fluctuating health and wellbeing status. Incorporating ePGHD on self-care in routine care settings and research studies could enhance healthcare delivery and patient outcomes, and help address important yet unanswered questions on pharmaco-epidemiology and disease burden of musculoskeletal conditions. Declarations Ethics approval and consent to participate The study has been reviewed by an NHS Research Ethics Committee, Wales REC 6. All participants gave voluntary, informed consent to participate. Consent for publication Not applicable Availability of data and materials The datasets used and analysed during the study are available form the corresponding author on reasonable request Competing interests The authors declare that they have no competing interests Funding This project has been funded by the Nuffield Foundation’s Oliver Bird Fund and Versus Arthritis, but the views expressed are those of the authors and not necessarily the funders. Visit www.nuffieldfoundation.org and www.versusarthritis.org. MJ is funded by a National Institute for Health and Care Research (NIHR) Advanced Fellowship [NIHR301413]. The views expressed in this publication are those of the authors and not necessarily those of the NIHR, NHS or the UK Department of Health and Social Care. Authors’ contributions Authors SnvdV and WD devised the research and supervised the work. All authors contributed to the design and implementation of the research. Data collection was conducted by SL and SM, and analysis conducted by SNvdV and SM. SM wrote the main manuscript text. All authors aided in interpreting the results and reviewed the manuscript. Acknowledgements Not applicable References Arndt, B. G., Beasley, J. W., Watkinson, M. D., Temte, J. L., Tuan, W., Sinsky, C., & Glichrist, V. J. (2017). Tethered to the EHR: primary care physician workload assessment using EHR event log data and time-motion observations. The Annals of Family Medicine, 15 (5), 419-426. https://doi.org/10.1370/afm.2121 Austin, L., Sharp, C. 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Supplementary Files JigsawSupplementaryFilesJuly2025.docx Cite Share Download PDF Status: Under Review Version 1 posted Editorial decision: Revision requested 02 Feb, 2026 Reviews received at journal 05 Dec, 2025 Reviews received at journal 27 Nov, 2025 Reviewers agreed at journal 24 Nov, 2025 Reviewers agreed at journal 23 Nov, 2025 Reviewers agreed at journal 14 Sep, 2025 Reviewers invited by journal 11 Sep, 2025 Editor invited by journal 14 Aug, 2025 Editor assigned by journal 13 Aug, 2025 Submission checks completed at journal 13 Aug, 2025 First submitted to journal 31 Jul, 2025 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. As a division of Research Square Company, we’re committed to making research communication faster, fairer, and more useful. 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10:18:51\",\"extension\":\"png\",\"order_by\":1,\"title\":\"Figure 1\",\"display\":\"\",\"copyAsset\":false,\"role\":\"figure\",\"size\":331046,\"visible\":true,\"origin\":\"\",\"legend\":\"\\u003cp\\u003e\\u003cem\\u003eFlow of participants through the study\\u003c/em\\u003e\\u003c/p\\u003e\",\"description\":\"\",\"filename\":\"1.png\",\"url\":\"https://assets-eu.researchsquare.com/files/rs-7264851/v1/fedc66acdfcd7dd0377137ba.png\"},{\"id\":91846255,\"identity\":\"164a7066-0a15-4f28-9c10-7df15f3982b9\",\"added_by\":\"auto\",\"created_at\":\"2025-09-22 10:18:51\",\"extension\":\"png\",\"order_by\":2,\"title\":\"Figure 2\",\"display\":\"\",\"copyAsset\":false,\"role\":\"figure\",\"size\":28015,\"visible\":true,\"origin\":\"\",\"legend\":\"\\u003cp\\u003e\\u003cem\\u003eDot histogram showing the distribution of the number of scheduled questionnaires submitted by each participant during their 13-week completion period. Each dot represents one participant (n=36).\\u003c/em\\u003e\\u003c/p\\u003e\",\"description\":\"\",\"filename\":\"2.png\",\"url\":\"https://assets-eu.researchsquare.com/files/rs-7264851/v1/137ec87ae3b74d100fd3d24c.png\"},{\"id\":91848016,\"identity\":\"058a9174-d766-4785-af62-9c8b10cf45c6\",\"added_by\":\"auto\",\"created_at\":\"2025-09-22 10:34:52\",\"extension\":\"pdf\",\"order_by\":0,\"title\":\"\",\"display\":\"\",\"copyAsset\":false,\"role\":\"manuscript-pdf\",\"size\":1832354,\"visible\":true,\"origin\":\"\",\"legend\":\"\",\"description\":\"\",\"filename\":\"manuscript.pdf\",\"url\":\"https://assets-eu.researchsquare.com/files/rs-7264851/v1/e5a115d9-73e4-4132-aa21-5b045d6d88f6.pdf\"},{\"id\":91847716,\"identity\":\"d8824b5d-55e3-4489-b2f4-d9125d6a96ce\",\"added_by\":\"auto\",\"created_at\":\"2025-09-22 10:26:51\",\"extension\":\"docx\",\"order_by\":0,\"title\":\"\",\"display\":\"\",\"copyAsset\":false,\"role\":\"supplement\",\"size\":489418,\"visible\":true,\"origin\":\"\",\"legend\":\"\",\"description\":\"\",\"filename\":\"JigsawSupplementaryFilesJuly2025.docx\",\"url\":\"https://assets-eu.researchsquare.com/files/rs-7264851/v1/8e72909905b1adf3bce3abbf.docx\"}],\"financialInterests\":\"No competing interests reported.\",\"formattedTitle\":\"Feasibility, acceptability, and added value of electronic patient-generated data on self-care use for people with musculoskeletal conditions: a mixed method study\",\"fulltext\":[{\"header\":\"Introduction\",\"content\":\"\\u003cp\\u003eLong-term health conditions result in significant personal, social, health and economic costs across the world (World Health Organisation, 2002). Over 41% of adults in the United Kingdom (UK) have a long-term condition (NHS digital., 2022), accounting for two-thirds of outpatient appointments and over 70% of the total health and care spend (Department of Health, 2012). An aging population and increased number of people living with complex needs has led to ongoing rising demands on health and social care services, and a need for health and care services to operate in a coordinated way (NHS England). Related to this, the role of the patient is also evolving, with a growing emphasis on supported self-management and self-care.\\u0026nbsp;Self-care involves the things people do to protect their health and manage their illness, including taking medications to manage pain, and engaging in specific routines and activities (e.g. eating healthily or attending physiotherapy; Department of Health, 2005).\\u003c/p\\u003e\\n\\u003cp\\u003eMusculoskeletal conditions, such as low back pain and arthritis, are an example of a prevalent long-term condition. They affect the joints, bones, muscles and soft-tissues, and are characterised by pain, reduced physical function, high rates of comorbidities, and increased mortality (Briggs et al., 2018; World Health Organisation., 2022). Musculoskeletal conditions are the leading contributor to disability worldwide, affecting over 1.7 billion people (World Health Organisation, 2022; Cieza et al., 2021) and represent some of the most common clinical indications for being prescribed opioids in the UK (Medina et al., 2024)\\u0026nbsp;\\u003c/p\\u003e\\n\\u003cp\\u003ePatient self-care in the context of musculoskeletal conditions can include taking pain-relieving medications, such as prescription opioids, over-the-counter analgesia (e.g., paracetamol), or supplements as part of their medication regime (Bedson et al., 2016; Soomro et al., 2024). Given the potential for drug interactions\\u0026nbsp;(Michos et al., 2021) and the impact of non-serious side effects of medication on people\\u0026rsquo;s quality of life\\u0026nbsp;(Rana et al., 2021),\\u0026nbsp;this information is of clinical importance. Yet, it is\\u0026nbsp;seldom recorded (comprehensively) in people\\u0026rsquo;s electronic health records. For example, people are often prescribed opioids on an as-required basis with variability in their free text instructions (e.g., co-codamol 30/500 one to two tablets up to four times a day; Jani et al., 2023) but the exact dosage they take is not included in their medical records (Kidner et al., 2009). People may also buy medication over the internet or borrow them from a family member without this being recorded during clinic consultations (Soomro et al., 2024). This means a comprehensive understanding of people\\u0026rsquo;s medications and side effects, be it for direct care or other (secondary) purposes, relies on self-reported data.\\u003c/p\\u003e\\n\\u003cp\\u003ePeople with musculoskeletal diseases may also require social care. This is defined as help received with a range of daily activities (e.g., washing and dressing, cooking meals, or going shopping; Humphreys et al., 2022), and can be provided both formally (by local authorities and care services) and informally (by friends and families). However, the extent of (particularly informal) social care use is often unclear, including if and how it varies through time. The need and cost to both carers and people with musculoskeletal diseases therefore remains underestimated (Humphreys et al., 2022; Soomro et al,. 2024). This missing information\\u0026nbsp;means opportunities may be lost to better inform patient treatment plans and provide person-centred and coordinated care.\\u003c/p\\u003e\\n\\u003cp\\u003eHealthcare professionals may not routinely ask about and record information about self-care in clinic. This may be because appointments are time-limited, with some professionals already spending more than half of their working day interacting with electronic health records (Arndt et al., 2017). But with digital technologies becoming increasingly prevalent, there is a possibility of asking patients to capture this information electronically in-between visits. Electronic patient-generated health data (ePGHD) is \\u0026ldquo;health data generated by and from patients\\u0026rdquo; and can be collected remotely via mobile apps, websites and wearables (Omoloja \\u0026amp; Vundavalli, 2021, pg. 1; Bourke et al., 2021). ePGHD enables capturing fluctuations in musculoskeletal patients\\u0026rsquo; medication and social care use, and complementing information on self-care data currently recorded in health records. This may ultimately enhance patient engagement in and access to care, accuracy and ease of patient-clinician communication, and health outcomes (Omoloja \\u0026amp; Vundavalli, 2021; Shapiro et al., 2012).\\u003c/p\\u003e\\n\\u003cp\\u003ePrevious research showed that collecting ePGHD was feasible and acceptable to people with musculoskeletal conditions (Austin et al., 2020., Watson et al., 2024., Renskers et al., 2024.,Seppen et al., 2023; Arumalla., 2023). However, this mostly concerned data on symptom experience and quality of life, leaving it unclear whether this is also true for ePGHD about self-care. For example, people may worry about the negative stigma of reporting opioid use due to its association with dependence (Bulls et al, 2019), changes to opioid prescription if they report additional over-the-counter use (e.g. co-codamol; Ducharme \\u0026amp; Moore, 2019; Sobczak \\u0026amp; Gorynski, 2020), or reduction of disability or carers\\u0026rsquo; allowances if they report receiving substantial additional informal support (i.e. \\u0026lsquo;fearing the brown envelope\\u0026rsquo;; Garthwaite, 2014).\\u0026nbsp;\\u003c/p\\u003e\\n\\u003cp\\u003eTherefore, this study aimed to assess the feasibility and acceptability of collecting ePGHD on (opioid and over-the-counter) medication, supplement, and social care use in people with musculoskeletal diseases, and the added value of this information compared to what had been recorded in electronic health records.\\u003c/p\\u003e\"},{\"header\":\"Methods\",\"content\":\"\\u003ch2\\u003eStudy Design and context\\u003c/h2\\u003e\\n\\u003cp\\u003eWe conducted a mixed-methods study in one outpatient rheumatology department in Greater Manchester, England (UK). We combined quantitative and qualitative data sequentially, before merging for triangulation and completeness (Aschbrenner et al., 2002). We collected data through recruitment logs, online questionnaires, electronic health record reviews, and semi-structured interviews. We obtained ethical approval for the study from the NHS (Wales, Research Ethics Committee 6, IRAS: 306827) and research was conducted in accordance with the Declaration of Helsinki. We reported our study in line with the Good Reporting of A Mixed Methods Study (GRAMMS) guidance (O\\u0026rsquo;Cathain et al., 2008) and described the data collection platform using the Template for Intervention Description and Replication (TIDieR) checklist (Hoffmann et al.,2014; Supplementary File S1).\\u0026nbsp;\\u003c/p\\u003e\\n\\u003ch2\\u003eTheoretical frameworks\\u003c/h2\\u003e\\n\\u003cp\\u003eWe used the Theoretical Framework of Acceptability version 2 (TFAv2; Sekhon et al., 2017) to guide study design, data collection, and analysis and interpretation of findings. The TFAv2 is a multi-construct, theoretical framework of acceptability of healthcare interventions (in our case, ePGHD collection) that can be used in retrospective assessments (Sekhon et al., 2017). The TFA comprises seven domains: affective attitude (how individuals feel about taking part in an intervention), burden (the amount of effort required to engage with an intervention), perceived effectiveness (whether individuals perceive an intervention as likely to achieve its purpose), ethicality (the extent to which an intervention fits with individuals\\u0026rsquo; personal values), intervention coherence (whether individuals understand an intervention and how it works), opportunity costs (what is given up, such as time, to take part in an intervention), and self-efficacy (how confident individuals are doing the intervention). The TFA therefore permits a comprehensive assessment of intervention acceptability and allows opportunities to make iterations to interventions based on these specific domains (Deribe, L et al., 2024; Murphey AL et al., 2019; Hurley, R et al., 2023).\\u0026nbsp;\\u003c/p\\u003e\\n\\u003ch2\\u003eRecruitment and eligibility of study participants\\u003c/h2\\u003e\\n\\u003cp\\u003eAdult patients with musculoskeletal disease were eligible if they met the criteria as listed in Box 1. Members of patients\\u0026rsquo; usual clinical team approached potentially eligible people during their routine appointment (Jan 2023-Sept 2023) and signposted those interested to the study team who provided study information, answered questions, and obtained written informed consent. To complement study site recruitment, we recruited people via a concurrently running survey on a related topic (Soomro et al., 2024) who agreed to be contacted for future research studies. Potential participants were informed that those who completed four consecutive data entries would be included in a prize draw for a \\u0026pound;30 shopping voucher.\\u0026nbsp;\\u003c/p\\u003e\\n\\u003ctable border=\\\"1\\\" cellspacing=\\\"0\\\" cellpadding=\\\"0\\\"\\u003e\\n \\u003ctbody\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 601px;\\\"\\u003e\\n \\u003cp\\u003e\\u003cstrong\\u003eBox 1.\\u003c/strong\\u003e \\u003cstrong\\u003eStudy eligibility criteria\\u003c/strong\\u003e\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 601px;\\\"\\u003e\\n \\u003cul\\u003e\\n \\u003cli\\u003eAged\\u0026nbsp;\\u0026ge;18 years\\u003c/li\\u003e\\n \\u003cli\\u003eDiagnosis of any musculoskeletal condition\\u003c/li\\u003e\\n \\u003cli\\u003eVisited rheumatology outpatient department within the last six months.\\u0026nbsp;\\u003c/li\\u003e\\n \\u003cli\\u003eRegistered with a GP within the hospital\\u0026rsquo;s catchment area*\\u003c/li\\u003e\\n \\u003cli\\u003eOwn/have access to device connected to the internet\\u003c/li\\u003e\\n \\u003cli\\u003eAble to read/understand English independently or with help from carer/relative.\\u003c/li\\u003e\\n \\u003cli\\u003eHave an opioid prescription \\u003cstrong\\u003eand/or\\u003c/strong\\u003e use at least one type of formal (e.g. local authority-organised) or informal (e.g. unpaid neighbour) social care** in the last month.\\u003c/li\\u003e\\n \\u003c/ul\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 601px;\\\"\\u003e\\n \\u003cp\\u003e* To ensure researcher access to primary care records for comparing ePGHD on self-care and self-care data in electronic health records (see below)\\u003c/p\\u003e\\n \\u003cp\\u003e** Includes help with: having a bath or shower/washing your face and hands/dressing or undressing/ using the toilet; getting in and out of bed/eating, including cutting up food/taking the right amount of medicine at the right times/getting around indoors/ getting up and down stairs; getting out of the house/shopping for food/doing routine housework or laundry/ doing paperwork or paying bills\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003c/tbody\\u003e\\n\\u003c/table\\u003e\\n\\u003ch2\\u003eProcedure for collecting ePGHD on self-care use\\u0026nbsp;\\u003c/h2\\u003e\\n\\u003ch3\\u003eWeb-based questionnaire for collecting ePGHD\\u003c/h3\\u003e\\n\\u003cp\\u003eWe asked participants to collect ePGHD via an online questionnaire (developed in Qualtrics XM). The questionnaire was co-designed with input from health professionals, researchers, and a patient and public involvement group of people living with a musculoskeletal condition. The research team developed an initial list of ePGHD items and obtained feedback from the group during an initial virtual workshop, with a focus on prioritising important and removing unnecessary items. This resulted in three item sets; i)\\u0026lsquo;About you\\u0026rsquo; (4 questions: pain, emotional well-being, ability to complete physical tasks, fatigue); ii) \\u0026lsquo;Medication use\\u0026rsquo; (questions on opioid/over-the-counter drugs used, frequency and dose, any medication side effects, and use of additional supplements), and iii) \\u0026lsquo;Help received\\u0026rsquo; (5 questions about the level and purpose of formal/informal social care needed). See Supplementary File S2 for the full questionnaire. The group also determined the frequency of data collection and acceptable average questionnaire completion time. During a second virtual workshop, the group commented on a prototype version of the questionnaire, co-produced participant instructions, and proposed engagement and participant support activities (Supplementary File S1).\\u003c/p\\u003e\\n\\u003ch3\\u003eOn-boarding of consented participants\\u003c/h3\\u003e\\n\\u003cp\\u003eConsenting participants received personalised links to the online questionnaire and completion instructions via e-mail. We also asked them to complete an additional, one-off online \\u0026nbsp;questionnaire on baseline demographic characteristics (e.g., gender, ethnicity, self-reported diagnosis). If participants had difficulty accessing their link, they could request help from a member of the research team at any time throughout ePGHD collection. Participants were considered on-boarded if they successfully completed the demographic questionnaire and at least one ePGHD questionnaire.\\u0026nbsp;\\u003c/p\\u003e\\n\\u003ch3\\u003eCompleting ePGHD questionnaires\\u0026nbsp;\\u003c/h3\\u003e\\n\\u003cp\\u003eOnce onboarded, participants received bi-weekly reminder emails to complete their follow-up ePGHD questionnaires. Participants could choose whether to also receive reminders via text message. Depending on whether they had an opioid prescription and/or used social care (see eligibility criteria in Box 1), we asked them to submit ePGHD on \\u0026lsquo;medication use\\u0026rsquo; and/or \\u0026lsquo;Help received\\u0026rsquo;, respectively, every two weeks for six months. They could submit additional questionnaires in between scheduled timepoints, if they wished. If participants did not submit information for three consecutive time points (i.e., six weeks), the research team contacted them via email or telephone call to offer support. At months 2 and 4, participants received a study newsletter, and those who completed their ePGHD collection period received a \\u0026pound;20 shopping voucher to thank them for their time.\\u003c/p\\u003e\\n\\u003ch2\\u003eData collection and analysis\\u003c/h2\\u003e\\n\\u003cp\\u003eWe used both qualitative and quantitative data sources to evaluate acceptability, feasibility, and added value of ePGHD on self-care (Table1).\\u0026nbsp;\\u003c/p\\u003e\\n\\u003cp\\u003e\\u003cstrong\\u003eTable 1:\\u003c/strong\\u003e Data source table for evaluation of acceptability, feasibility, and added value of ePGHD on self-care.\\u0026nbsp;\\u003c/p\\u003e\\n\\u003ctable border=\\\"1\\\" cellspacing=\\\"0\\\" cellpadding=\\\"0\\\" width=\\\"608\\\"\\u003e\\n \\u003ctbody\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 299px;\\\"\\u003e\\n \\u003cp\\u003e\\u003cstrong\\u003e\\u003cem\\u003eQuantitative data sources\\u003c/em\\u003e\\u003c/strong\\u003e\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 309px;\\\"\\u003e\\n \\u003cp\\u003e\\u003cstrong\\u003e\\u003cem\\u003eQualitative data sources\\u003c/em\\u003e\\u003c/strong\\u003e\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd colspan=\\\"2\\\" valign=\\\"top\\\" style=\\\"width: 608px;\\\"\\u003e\\n \\u003cp\\u003eFeasibility\\u0026nbsp;\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 299px;\\\"\\u003e\\n \\u003cul\\u003e\\n \\u003cli\\u003eScreening/recruitment logs\\u003c/li\\u003e\\n \\u003cli\\u003eOn-boarding rates\\u003c/li\\u003e\\n \\u003cli\\u003eePGHD completion rates\\u003c/li\\u003e\\n \\u003c/ul\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 309px;\\\"\\u003e\\n \\u003cul\\u003e\\n \\u003cli\\u003eQualitative interviews\\u003c/li\\u003e\\n \\u003cli\\u003eReasons to decline participation\\u003c/li\\u003e\\n \\u003c/ul\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd colspan=\\\"2\\\" valign=\\\"top\\\" style=\\\"width: 608px;\\\"\\u003e\\n \\u003cp\\u003eAcceptability\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 299px;\\\"\\u003e\\n \\u003cul\\u003e\\n \\u003cli\\u003eePGHD completion rates\\u003c/li\\u003e\\n \\u003c/ul\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 309px;\\\"\\u003e\\n \\u003cul\\u003e\\n \\u003cli\\u003eQualitative interviews\\u003c/li\\u003e\\n \\u003cli\\u003eReasons to decline participation\\u003c/li\\u003e\\n \\u003c/ul\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd colspan=\\\"2\\\" valign=\\\"top\\\" style=\\\"width: 608px;\\\"\\u003e\\n \\u003cp\\u003eAdded value\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 299px;\\\"\\u003e\\n \\u003cul\\u003e\\n \\u003cli\\u003eAvailability of self-care data available in electronic health records\\u003c/li\\u003e\\n \\u003c/ul\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 309px;\\\"\\u003e\\n \\u003cul\\u003e\\n \\u003cli\\u003eQualitative interviews\\u003c/li\\u003e\\n \\u003c/ul\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003c/tbody\\u003e\\n\\u003c/table\\u003e\\n\\u003cp\\u003eAbbreviations: ePGHD, electronic patient-generated health data\\u003c/p\\u003e\\n\\u003ch3\\u003eParticipation rates and reasons for declining participation\\u003c/h3\\u003e\\n\\u003cp\\u003eLocal and study team staff kept screening and recruitment logs to track the number of eligible patients invited, consented and on-boarded, as well as potential participants\\u0026rsquo; reasons for declining to take part. To evaluate acceptability and feasibility, we analysed these log entries descriptively and calculated the conversion rates for each step (i.e. from invitation to consenting to on-boarding).\\u0026nbsp;\\u003c/p\\u003e\\n\\u003ch3\\u003eePGHD completion rates\\u003c/h3\\u003e\\n\\u003cp\\u003eParticipants were asked to submit data at 13 time points (i.e., due dates) over six months. The data collection period began when a participant had been on-boarded; additional entries were treated separately and defined as \\u0026lsquo;non-scheduled questionnaires\\u0026rsquo;. Questionnaires completed within 10 days of a due date were considered \\u0026lsquo;scheduled\\u0026rsquo; and allocated to that time point. We calculated individual participants\\u0026rsquo; scheduled questionnaire completion levels by dividing the number of completed scheduled questionnaires by 13, and used the mean (\\u0026plusmn; standard deviation, SD) scheduled questionnaire completion level to assess feasibility across our sample. We also visualised the distribution of participants\\u0026rsquo; completion levels in the form of dot plots.\\u0026nbsp;\\u003c/p\\u003e\\n\\u003ch3\\u003eComparison between ePGHD on self-care and self-care data in electronic health records\\u003c/h3\\u003e\\n\\u003cp\\u003eTo assess the added value of collecting ePGHD on medication and social care use, we evaluated to what extent this information was already available in participants\\u0026rsquo; primary and secondary electronic health records.\\u0026nbsp;\\u003c/p\\u003e\\n\\u003cp\\u003eFor each patient, we screened rheumatology outpatient clinic letters in secondary care records from the six months before people entered the study. If no rheumatology letters were available, clinic letters from other specialities from the same period were considered. For availability of social care use data, we additionally checked new referral rheumatology clinic letters. Each participant\\u0026rsquo;s primary care record was also reviewed.\\u0026nbsp;\\u003c/p\\u003e\\n\\u003cp\\u003eWe used a structured template to record if information was available on opioid use (e.g., name of drug, frequency and dose), medication side effects, use of additional supplements, and use of formal/informal social care (including level of care and details of specific supported tasks; see Supplementary File S3). When letters in one record signposted to relevant information in the other record but without providing further details (e.g., secondary care letters signposting \\u0026ldquo;pain relief as per primary care record\\u0026rdquo;), we considered information as \\u0026lsquo;recorded\\u0026rsquo; in both. Missing information (e.g. no social care status or no prescription opioid) was tallied, and discrepancies across data sources highlighted.\\u003c/p\\u003e\\n\\u003ch3\\u003eQualitative interviews\\u003c/h3\\u003e\\n\\u003cp\\u003eWe invited all participants to participate in a semi-structured interview at the end of their data collection period to explore acceptability, feasibility and perceived added value of collecting ePGHD. The theoretical frameworks guided development of the interview guide (see Supplementary File S4), which covered participants\\u0026rsquo; perceptions and attitudes towards collecting ePGHD in general, and their experience of collecting ePGHD during the study. Although participants understood that their ePGHD would not be viewed by clinicians during the study period, interviews also covered how ePGHD could be used in the future to inform direct care. We used participants\\u0026rsquo; responses to their 2-weekly ePGHD questionnaires as prompts during interviews to seek clarification and context on ePGHD feasibility. Interviews took place via telephone and were audio-recorded and transcribed verbatim by a professional secretarial service for analysis. Interviewees received an additional \\u0026pound;20 shopping voucher.\\u0026nbsp;\\u003c/p\\u003e\\n\\u003cp\\u003eWe analysed data using principles of Framework Analysis (Spencer et al., 2003). The analysis included two stages of coding; early coding was conducted inductively (i.e. codes were generated based on what was in the data), followed by mapping of the initial codes to domains of the TFAv2 to interpret the results. One researcher (SM) completed the coding process independently using NVivo 12 and then discussed codes and agreed themes with another (SNvdV).\\u0026nbsp;\\u003c/p\\u003e\\n\\u003ch3\\u003eIntegrative analysis and synthesis\\u003c/h3\\u003e\\n\\u003cp\\u003eWe triangulated findings between quantitative and qualitative data sources using a convergence coding matrix that displayed data from across all sources (Farmer et al., 2006). This enabled us to compare and contrast findings, and integrate them for final analysis and drawing conclusions.\\u0026nbsp;\\u003c/p\\u003e\"},{\"header\":\"Results\",\"content\":\"\\u003ch2\\u003eDecline rates and reasons\\u0026nbsp;\\u003c/h2\\u003e\\n\\u003cp\\u003eFigure 1 shows that we invited a total of 102 patients to participate, of which 61 (60%) responded. Reasons for declining participation included no access to appropriate technology or unwilling to use it for collecting ePGHD (n=8), and a diagnosed musculoskeletal condition that resulted in impaired dexterity (n=3). \\u0026nbsp;\\u003c/p\\u003e\\n\\u003ch2\\u003eCharacteristics of participants\\u003c/h2\\u003e\\n\\u003cp\\u003eA total of 36 participants consented to take part, of which 78% were female (mean age=57.5yrs, range 28-88yrs). Twenty participants took part in a qualitative interview (participant demographics in Table 2). \\u0026nbsp;\\u0026nbsp;\\u003c/p\\u003e\\n\\u003cp\\u003e\\u003cstrong\\u003eTable 2:\\u0026nbsp;\\u003c/strong\\u003eParticipant characteristics\\u003c/p\\u003e\\n\\u003ctable border=\\\"1\\\" cellspacing=\\\"0\\\" cellpadding=\\\"0\\\" width=\\\"633\\\"\\u003e\\n \\u003ctbody\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 264px;\\\"\\u003e\\n \\u003cp\\u003e\\u003cstrong\\u003e\\u003cem\\u003eCharacteristic\\u003c/em\\u003e\\u003c/strong\\u003e\\u003cstrong\\u003e\\u003cem\\u003e\\u0026nbsp;*\\u003c/em\\u003e\\u003c/strong\\u003e\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 180px;\\\"\\u003e\\n \\u003cp\\u003e\\u003cstrong\\u003e\\u003cem\\u003eAll participants (n=36)\\u003c/em\\u003e\\u003c/strong\\u003e\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 189px;\\\"\\u003e\\n \\u003cp\\u003e\\u003cstrong\\u003e\\u003cem\\u003eInterviewees (n=20)\\u003c/em\\u003e\\u003c/strong\\u003e\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 264px;\\\"\\u003e\\n \\u003cp\\u003e\\u003cstrong\\u003eAge (years; m\\u003c/strong\\u003e\\u003cstrong\\u003eean \\u0026plusmn; standard deviation\\u003c/strong\\u003e\\u003cstrong\\u003e)\\u003c/strong\\u003e\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 180px;\\\"\\u003e\\n \\u003cp\\u003e57.5 \\u0026plusmn; 19.09\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 189px;\\\"\\u003e\\n \\u003cp\\u003e58.2 \\u0026plusmn; 17.02\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 264px;\\\"\\u003e\\n \\u003cp\\u003e\\u003cstrong\\u003eFemale sex, n (%)\\u003c/strong\\u003e\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 180px;\\\"\\u003e\\n \\u003cp\\u003e29 (81)\\u0026nbsp;\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 189px;\\\"\\u003e\\n \\u003cp\\u003e17 (85)\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 264px;\\\"\\u003e\\n \\u003cp\\u003e\\u003cstrong\\u003eOccupation, n (%)\\u003c/strong\\u003e\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 180px;\\\"\\u003e\\n \\u003cp\\u003e\\u0026nbsp;\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 189px;\\\"\\u003e\\n \\u003cp\\u003e\\u0026nbsp;\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 264px;\\\"\\u003e\\n \\u003cp\\u003eEmployed\\u0026nbsp;\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 180px;\\\"\\u003e\\n \\u003cp\\u003e7 (20)\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 189px;\\\"\\u003e\\n \\u003cp\\u003e3 (15)\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 264px;\\\"\\u003e\\n \\u003cp\\u003eUnemployed\\u003c/p\\u003e\\n \\u003cp\\u003eLong-term sick/disabled\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 180px;\\\"\\u003e\\n \\u003cp\\u003e5 (14)\\u003c/p\\u003e\\n \\u003cp\\u003e5 (14)\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 189px;\\\"\\u003e\\n \\u003cp\\u003e4 (20)\\u003c/p\\u003e\\n \\u003cp\\u003e2 (10)\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 264px;\\\"\\u003e\\n \\u003cp\\u003eRetired\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 180px;\\\"\\u003e\\n \\u003cp\\u003e17 (47)\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 189px;\\\"\\u003e\\n \\u003cp\\u003e10 (50)\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 264px;\\\"\\u003e\\n \\u003cp\\u003eOther **\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 180px;\\\"\\u003e\\n \\u003cp\\u003e2 (6)\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 189px;\\\"\\u003e\\n \\u003cp\\u003e1 (5)\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 264px;\\\"\\u003e\\n \\u003cp\\u003e\\u003cstrong\\u003eResponder type, n (%)\\u003c/strong\\u003e\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 180px;\\\"\\u003e\\n \\u003cp\\u003e\\u0026nbsp;\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 189px;\\\"\\u003e\\n \\u003cp\\u003e\\u0026nbsp;\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 264px;\\\"\\u003e\\n \\u003cp\\u003eMedication use\\u0026nbsp;\\u003c/p\\u003e\\n \\u003cp\\u003eSocial care use\\u003c/p\\u003e\\n \\u003cp\\u003eBoth\\u0026nbsp;\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 180px;\\\"\\u003e\\n \\u003cp\\u003e6 (16)\\u003c/p\\u003e\\n \\u003cp\\u003e15 (42)\\u003c/p\\u003e\\n \\u003cp\\u003e15 (42)\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 189px;\\\"\\u003e\\n \\u003cp\\u003e1 (5)\\u003c/p\\u003e\\n \\u003cp\\u003e9 (45)\\u003c/p\\u003e\\n \\u003cp\\u003e10 (50)\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003c/tbody\\u003e\\n\\u003c/table\\u003e\\n\\u003cp\\u003e\\u003cem\\u003e* Data on ethnicity was collected, but not reported due to small sample size\\u003c/em\\u003e\\u003c/p\\u003e\\n\\u003cp\\u003e\\u003cem\\u003e** Other \\u0026ndash; including students and full-time carers.\\u003c/em\\u003e\\u003c/p\\u003e\\n\\u003ch2\\u003eePGHD questionnaire completion\\u0026nbsp;\\u003c/h2\\u003e\\n\\u003cp\\u003eAll participants (n=36) who consented were successfully onboarded by completing the demographics questionnaire at baseline and their first ePGHD questionnaire, with four participants (11%) needing follow-up emails and additional support to do this. Two (6%) participants then requested to stop completing the questionnaires citing personal commitments and health issues. Two other participants (6%) were non-responsive following the initial ePGHD questionnaire. Ten (28%) of the participants requested text reminders.\\u003c/p\\u003e\\n\\u003cp\\u003eThe average number of completed scheduled questionnaires across all 36 consented participants was 9 \\u0026plusmn;4 (range, 1 to 13), with 22 (61%) submitting at least 80% of all scheduled questionnaires. Nine participants (25%) completed all 13 questionnaires (Figure 2). \\u0026nbsp;Six participants (17%) submitted \\u0026gt;1 additional questionnaires, and two (6%) submitted \\u0026ge;4.\\u0026nbsp;\\u003c/p\\u003e\\n\\u003ch2\\u003eComparison between ePGHD on self-care and self-care data in electronic health records\\u0026nbsp;\\u003c/h2\\u003e\\n\\u003ch3\\u003eePGHD on medication use (including side effects)\\u003c/h3\\u003e\\n\\u003cp\\u003eTable 3 shows that information on opioid prescription and dosage generally aligned with what was documented in both primary and secondary care records for all participants reporting ePGHD on medication use. However, some reported taking additional opioid/over-the-counter medications in their ePGHD than detailed in their records (n=5). Some other participants contributed inaccurate information, for example, by confusing prescription and non-prescription medications (n=2).\\u003c/p\\u003e\\n\\u003cp\\u003eOpioid medications were prescribed to take \\u0026ldquo;as required\\u0026rdquo;, and despite all participants reporting frequency of opioid use in ePGHD, this information was not available in any of the patients\\u0026rsquo; health records. Also, use of over-the-counter medication and supplements (e.g., Cannabidiol oil, vitamins) was underreported in health records, as were side effects (while nearly all participants reported these; most frequently dry mouth (60%), constipation (41%) and brain fog/fatigue (41%)).\\u003c/p\\u003e\\n\\u003ch3\\u003eSocial care ePGHD\\u0026nbsp;\\u003c/h3\\u003e\\n\\u003cp\\u003eSocial care information was largely absent from both primary and secondary health records (Table 3). Even for those receiving formal or substantial social care, references were brief and recorded years previously. For example, for one participant currently receiving formal, paid care, only \\u0026ldquo;has carer\\u0026rdquo; had been recorded in their primary care record two years previously. Secondary care records sometimes contained general references to social care use within new patient letters but social care use was seldom mentioned in more recent letters, with very few providing further detail (e.g., on specific tasks that a person required help with, or the level of support they needed). Only on one occasion, social care use was noted in the electronic health record but not in the ePGHD, where it appeared in the interview that the participant had failed to count a family member as providing informal care.\\u0026nbsp;\\u003c/p\\u003e\\n\\u003cp\\u003e\\u003cstrong\\u003eTable 3.\\u003c/strong\\u003e Summary table of availability of data on self-care use in the different sources; values reflect the number of participants for whom certain information was available in particular data source\\u003c/p\\u003e\\n\\u003ctable border=\\\"1\\\" cellspacing=\\\"0\\\" cellpadding=\\\"0\\\" width=\\\"623\\\"\\u003e\\n \\u003ctbody\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 189px;\\\"\\u003e\\n \\u003cp\\u003e\\u003cstrong\\u003eInformation Type\\u003c/strong\\u003e\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 100px;\\\"\\u003e\\n \\u003cp\\u003e\\u003cstrong\\u003eePGHD\\u0026nbsp;\\u003c/strong\\u003e\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 174px;\\\"\\u003e\\n \\u003cp\\u003e\\u003cstrong\\u003eSelf-care data in secondary care electronic health records\\u003c/strong\\u003e\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 161px;\\\"\\u003e\\n \\u003cp\\u003e\\u003cstrong\\u003eSelf-care data in primary care electronic health records\\u003c/strong\\u003e\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd colspan=\\\"3\\\" valign=\\\"top\\\" style=\\\"width: 463px;\\\"\\u003e\\n \\u003cp\\u003eMedication Use (n=21)\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 161px;\\\"\\u003e\\n \\u003cp\\u003e\\u003cstrong\\u003e\\u0026nbsp;\\u003c/strong\\u003e\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 189px;\\\"\\u003e\\n \\u003cp\\u003eOpioid prescription and dosage\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 100px;\\\"\\u003e\\n \\u003cp\\u003e21\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 174px;\\\"\\u003e\\n \\u003cp\\u003e21\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 161px;\\\"\\u003e\\n \\u003cp\\u003e21\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 189px;\\\"\\u003e\\n \\u003cp\\u003eOpioid frequency of use\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 100px;\\\"\\u003e\\n \\u003cp\\u003e21\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 174px;\\\"\\u003e\\n \\u003cp\\u003e0\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 161px;\\\"\\u003e\\n \\u003cp\\u003e0\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 189px;\\\"\\u003e\\n \\u003cp\\u003eMedication Sharing*\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 100px;\\\"\\u003e\\n \\u003cp\\u003e2\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 174px;\\\"\\u003e\\n \\u003cp\\u003e0\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 161px;\\\"\\u003e\\n \\u003cp\\u003e0\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 189px;\\\"\\u003e\\n \\u003cp\\u003eMedication Side Effects\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 100px;\\\"\\u003e\\n \\u003cp\\u003e20\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 174px;\\\"\\u003e\\n \\u003cp\\u003e1\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 161px;\\\"\\u003e\\n \\u003cp\\u003e2\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 189px;\\\"\\u003e\\n \\u003cp\\u003eOver-the-Counter Medication Use\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 100px;\\\"\\u003e\\n \\u003cp\\u003e20\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 174px;\\\"\\u003e\\n \\u003cp\\u003e7 Specific medications\\u003c/p\\u003e\\n \\u003cp\\u003e4 General references only**\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 161px;\\\"\\u003e\\n \\u003cp\\u003e0\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 189px;\\\"\\u003e\\n \\u003cp\\u003eSupplement Use\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 100px;\\\"\\u003e\\n \\u003cp\\u003e12\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 174px;\\\"\\u003e\\n \\u003cp\\u003e0\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 161px;\\\"\\u003e\\n \\u003cp\\u003e1\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd colspan=\\\"3\\\" valign=\\\"top\\\" style=\\\"width: 463px;\\\"\\u003e\\n \\u003cp\\u003eSocial Care use (n=30)\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 161px;\\\"\\u003e\\n \\u003cp\\u003e\\u003cstrong\\u003e\\u0026nbsp;\\u003c/strong\\u003e\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 189px;\\\"\\u003e\\n \\u003cp\\u003eFormal social support\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 100px;\\\"\\u003e\\n \\u003cp\\u003e1\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 174px;\\\"\\u003e\\n \\u003cp\\u003e0\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 161px;\\\"\\u003e\\n \\u003cp\\u003e1 ***\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 189px;\\\"\\u003e\\n \\u003cp\\u003eInformal social support\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 100px;\\\"\\u003e\\n \\u003cp\\u003e29\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 174px;\\\"\\u003e\\n \\u003cp\\u003e8 General references only****\\u003c/p\\u003e\\n \\u003cp\\u003e\\u0026nbsp;\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 161px;\\\"\\u003e\\n \\u003cp\\u003e1 *****\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 189px;\\\"\\u003e\\n \\u003cp\\u003eSpecific tasks requiring support\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 100px;\\\"\\u003e\\n \\u003cp\\u003e30\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 174px;\\\"\\u003e\\n \\u003cp\\u003e2\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 161px;\\\"\\u003e\\n \\u003cp\\u003e0\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 189px;\\\"\\u003e\\n \\u003cp\\u003eLevel of support (e.g. hours per week/times per week)\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 100px;\\\"\\u003e\\n \\u003cp\\u003e30\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 174px;\\\"\\u003e\\n \\u003cp\\u003e1\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 161px;\\\"\\u003e\\n \\u003cp\\u003e0\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003c/tbody\\u003e\\n\\u003c/table\\u003e\\n\\u003cp\\u003e*Opioid medication sharing/borrowing e.g. from friends and family \\u0026nbsp;\\u003c/p\\u003e\\n\\u003cp\\u003e\\u003cem\\u003e**\\u003c/em\\u003e e.g. \\u0026ldquo;\\u003cem\\u003eanti-inflammatories as required\\u003c/em\\u003e\\u0026rdquo;\\u003c/p\\u003e\\n\\u003cp\\u003e*** \\u0026ldquo;\\u003cem\\u003eHas carer\\u003c/em\\u003e\\u0026rdquo;\\u003c/p\\u003e\\n\\u003cp\\u003e**** e.g. \\u003cem\\u003e\\u0026ldquo;Help available at home\\u0026rdquo; or \\u0026ldquo;Attended appointment supported by\\u0026hellip;\\u0026rdquo;\\u003c/em\\u003e\\u003c/p\\u003e\\n\\u003cp\\u003e\\u003cem\\u003e***** e.g. \\u0026ldquo;Lives alone, help available\\u0026rdquo;\\u003c/em\\u003e\\u003c/p\\u003e\\n\\u003ch2\\u003eQualitative interviews\\u0026nbsp;\\u003c/h2\\u003e\\n\\u003cp\\u003eWe conducted 20 interviews (mean length = 31 Minutes, range 16-56 minutes) over the telephone between September 2023 and March 2024. Interviewees included one person (3%) who had withdrawn participation and 6 (30%) who had completed \\u0026lt;0% of their ePGHD questionnaires.\\u0026nbsp;\\u003c/p\\u003e\\n\\u003cp\\u003eTable 4 presents the qualitative findings pertaining to feasibility, acceptability, and added value, mapped to TFA constructs and illustrated with example quotes.\\u003c/p\\u003e\\n\\u003cp\\u003e\\u003cstrong\\u003eTable 4.\\u003c/strong\\u003e Qualitative findings on feasibility, acceptability, and added value of collecting ePGHD on self-care, mapped to TFA (ref) constructs and illustrated with example quotes.\\u0026nbsp;\\u003c/p\\u003e\\n\\u003ctable border=\\\"1\\\" cellspacing=\\\"0\\\" cellpadding=\\\"0\\\"\\u003e\\n \\u003ctbody\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 130px;\\\"\\u003e\\n \\u003cp\\u003e\\u003cstrong\\u003e\\u003cem\\u003eTFA construct\\u003c/em\\u003e\\u003c/strong\\u003e\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 454px;\\\"\\u003e\\n \\u003cp\\u003e\\u003cstrong\\u003e\\u003cem\\u003eIllustrative quote\\u003c/em\\u003e\\u003c/strong\\u003e\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 130px;\\\"\\u003e\\n \\u003cp\\u003e\\u003cstrong\\u003eAffective attitude\\u003c/strong\\u003e\\u003c/p\\u003e\\n \\u003cp\\u003e\\u0026nbsp;\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 454px;\\\"\\u003e\\n \\u003cp\\u003e\\u003cem\\u003e\\u0026ldquo;That\\u0026rsquo;s how I think positively\\u0026hellip;I\\u0026rsquo;ve not been as much dependent [this week], I can reduce an hour less. So it gives me more a push for myself, I can do it!\\u0026rdquo;\\u003c/em\\u003e Participant 13, female, informal care\\u003c/p\\u003e\\n \\u003cp\\u003e\\u0026nbsp;\\u003c/p\\u003e\\n \\u003cp\\u003e\\u003cem\\u003e\\u0026ldquo;I\\u0026rsquo;ve taken a much more conscientious attitude to my health. I think, in part, because of the study\\u0026rdquo;\\u003c/em\\u003e Participant 19, male, informal care\\u003c/p\\u003e\\n \\u003cp\\u003e\\u0026nbsp;\\u003c/p\\u003e\\n \\u003cp\\u003e\\u003cem\\u003e\\u0026ldquo;Sometimes you feel really bad, thinking do I really put that much pressure on my family? Am I stopping them doing what they want to do with their own life?\\u0026rdquo;\\u0026nbsp;\\u003c/em\\u003eParticipant 26, female, medication and informal care\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 130px;\\\"\\u003e\\n \\u003cp\\u003e\\u003cstrong\\u003eBurden\\u003c/strong\\u003e\\u003c/p\\u003e\\n \\u003cp\\u003e\\u003cstrong\\u003e\\u0026nbsp;\\u003c/strong\\u003e\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 454px;\\\"\\u003e\\n \\u003cp\\u003e\\u003cem\\u003e\\u0026ldquo;It was simple to use\\u0026hellip;I could stick with it because I knew it was fairly quick\\u0026rdquo;\\u0026nbsp;\\u003c/em\\u003eParticipant 12, female, informal care\\u003c/p\\u003e\\n \\u003cp\\u003e\\u003cem\\u003e\\u0026nbsp;\\u003c/em\\u003e\\u003c/p\\u003e\\n \\u003cp\\u003e\\u003cem\\u003e\\u0026ldquo;it doesn\\u0026rsquo;t take a lot out of your day, you can do it while you\\u0026rsquo;re having a cup of tea\\u0026rdquo;.\\u003c/em\\u003e Participant 35, female, medication and informal care\\u003c/p\\u003e\\n \\u003cp\\u003e\\u0026nbsp;\\u003c/p\\u003e\\n \\u003cp\\u003e\\u0026ldquo;T\\u003cem\\u003ehere was a couple of episodes when I forgot to fill it in because I had stuff going on in my life where I was stressed out and stuff and I kept forgetting that I had to fill it in\\u0026rdquo;\\u0026nbsp;\\u003c/em\\u003eParticipant 4, female, medication and informal care\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 130px;\\\"\\u003e\\n \\u003cp\\u003e\\u003cstrong\\u003eEthicality\\u003c/strong\\u003e\\u003c/p\\u003e\\n \\u003cp\\u003e\\u003cstrong\\u003e\\u0026nbsp;\\u003c/strong\\u003e\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 454px;\\\"\\u003e\\n \\u003cp\\u003e\\u003cem\\u003e\\u0026ldquo;If there\\u0026rsquo;s just one way I can give back\\u0026hellip;it\\u0026rsquo;s something I\\u0026rsquo;d do\\u0026rdquo;\\u0026nbsp;\\u003c/em\\u003eParticipant 8, female, informal care\\u003c/p\\u003e\\n \\u003cp\\u003e\\u0026nbsp;\\u003c/p\\u003e\\n \\u003cp\\u003e\\u003cem\\u003e\\u0026ldquo;You think the [HCP] knows best because they\\u0026rsquo;re the qualified person, but your body is telling you something different\\u0026hellip;.I think you have a responsibility to say it\\u0026rdquo;.\\u0026nbsp;\\u003c/em\\u003eParticipant 17, female, medication\\u003cem\\u003e\\u0026nbsp;\\u003c/em\\u003e\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 130px;\\\"\\u003e\\n \\u003cp\\u003e\\u003cstrong\\u003eIntervention coherence\\u0026nbsp;\\u003c/strong\\u003e\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 454px;\\\"\\u003e\\n \\u003cp\\u003e\\u0026ldquo;\\u003cem\\u003eIt would give them a more immediate view of how you\\u0026rsquo;re doing, and how you\\u0026rsquo;d been progressing, week by week\\u0026rdquo;\\u003c/em\\u003e Participant 18, male, medication and informal care\\u003c/p\\u003e\\n \\u003cp\\u003e\\u003cem\\u003e\\u0026nbsp;\\u003c/em\\u003e\\u003c/p\\u003e\\n \\u003cp\\u003e\\u0026ldquo;\\u003cem\\u003eSo they know everything about you, from you\\u0026rdquo;\\u003c/em\\u003e Participant 24, female, informal care\\u003c/p\\u003e\\n \\u003cp\\u003e\\u003cem\\u003e\\u0026nbsp;\\u003c/em\\u003e\\u003c/p\\u003e\\n \\u003cp\\u003e\\u003cem\\u003e\\u0026ldquo;I\\u003c/em\\u003e\\u003cem\\u003es it just to help trainees and people who are learning?\\u0026rdquo;\\u003c/em\\u003e Participant 4, female, medication and informal care\\u0026nbsp;\\u003c/p\\u003e\\n \\u003cp\\u003e\\u003cem\\u003e\\u0026nbsp;\\u003c/em\\u003e\\u003c/p\\u003e\\n \\u003cp\\u003e\\u003cem\\u003e\\u0026ldquo;[level of support needed] is zero. If I want anything doing, my son would do it\\u0026rdquo;\\u003c/em\\u003e Participant 30, female, informal care\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 130px;\\\"\\u003e\\n \\u003cp\\u003e\\u003cstrong\\u003eOpportunity costs\\u003c/strong\\u003e\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 454px;\\\"\\u003e\\n \\u003cp\\u003e\\u0026ldquo;\\u003cem\\u003eMy mental health got to me and, you know, I was just in that much pain, I just wanted to be left alone\\u0026rdquo;\\u003c/em\\u003e Participant 4, female, medication and informal care (withdrawn)\\u003c/p\\u003e\\n \\u003cp\\u003e\\u003cem\\u003e\\u0026nbsp;\\u003c/em\\u003e\\u003c/p\\u003e\\n \\u003cp\\u003e\\u003cem\\u003e\\u0026ldquo;I don\\u0026rsquo;t know if I would have stuck with it- emotionally I was in a very different spot at the time [previous year when condition was severe]\\u0026rdquo;\\u0026nbsp;\\u003c/em\\u003eParticipant 19, male, informal care\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 130px;\\\"\\u003e\\n \\u003cp\\u003e\\u003cstrong\\u003ePerceived effectiveness\\u003c/strong\\u003e\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 454px;\\\"\\u003e\\n \\u003cp\\u003e\\u003cem\\u003e\\u0026ldquo;In the consultations, we both mention that he is my carer and what he needs to do for me, but I\\u0026rsquo;ve not seen it documented anywhere\\u0026hellip;\\u003c/em\\u003e[collecting ePGHD]\\u003cem\\u003e\\u0026nbsp;allows the appointment to be a little bit more patient led because the doctor has a better understanding of the patient before they even walk into the door. \\u0026nbsp;It means that they can have a more open conversation more quickly\\u0026hellip;\\u0026rdquo;\\u003c/em\\u003e Participant 35, female, medication and informal care\\u003c/p\\u003e\\n \\u003cp\\u003e\\u0026nbsp;\\u003c/p\\u003e\\n \\u003cp\\u003e\\u0026ldquo;W\\u003cem\\u003ehen you\\u0026rsquo;re at an appointment and you are not feeling 100 per cent, it is tempting to say, oh yeah I\\u0026rsquo;m doing okay, but actually you\\u0026rsquo;re doing okay that day but you\\u0026rsquo;ve not been doing okay\\u0026rdquo;.\\u003c/em\\u003e Participant 26, female, medication and informal care\\u003c/p\\u003e\\n \\u003cp\\u003e\\u0026nbsp;\\u003c/p\\u003e\\n \\u003cp\\u003e\\u003cem\\u003e\\u0026ldquo;They don\\u0026rsquo;t ask the right questions, so you don\\u0026rsquo;t tell them. But with this survey it is informing them of what life is like for me on a day to day basis. You get about 10 minutes with the consultant and he\\u0026rsquo;s asking other questions...he\\u0026rsquo;s not got time to ask you... I think he needs to know, but it\\u0026rsquo;s not there at the minute. I couldn\\u0026rsquo;t get in the shower without my husband\\u0026rsquo;s help. I couldn\\u0026rsquo;t put my underwear on. I couldn\\u0026rsquo;t put my socks on. He\\u0026rsquo;s never asked any of that\\u0026rdquo;\\u0026nbsp;\\u003c/em\\u003eParticipant 29, female, informal care\\u003c/p\\u003e\\n \\u003cp\\u003e\\u0026nbsp;\\u003c/p\\u003e\\n \\u003cp\\u003e\\u0026ldquo;\\u003cem\\u003eif you had ten people in a row and they all had a thing that said take when needed and they\\u0026rsquo;ve all got the same medical condition as me, it doesn\\u0026rsquo;t mean that every one of us are going to take the same amount every day\\u0026hellip;you\\u0026rsquo;re not going to remember how many you took that day because it was two months ago\\u0026hellip;So it\\u0026rsquo;s giving them more of a clearer picture of your pain levels as well\\u0026rdquo;.\\u003c/em\\u003e Participant 36, female, medication and informal care\\u003c/p\\u003e\\n \\u003cp\\u003e\\u0026nbsp;\\u003c/p\\u003e\\n \\u003cp\\u003e\\u003cem\\u003e\\u0026ldquo;The information [ePGHD] is useful, it\\u0026rsquo;s whether people take note of it\\u0026rdquo;\\u0026nbsp;\\u003c/em\\u003eParticipant 19, male, informal care\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 130px;\\\"\\u003e\\n \\u003cp\\u003e\\u003cstrong\\u003eSelf-efficacy\\u003c/strong\\u003e\\u003c/p\\u003e\\n \\u003cp\\u003e\\u003cstrong\\u003e\\u0026nbsp;\\u003c/strong\\u003e\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 454px;\\\"\\u003e\\n \\u003cp\\u003e\\u003cem\\u003e\\u0026ldquo;I\\u0026rsquo;m not really good on computers, but then I got used to doing it\\u0026rdquo;\\u0026nbsp;\\u003c/em\\u003eParticipant 1, female, medication and informal care\\u003c/p\\u003e\\n \\u003cp\\u003e\\u003cem\\u003e\\u0026nbsp;\\u003c/em\\u003e\\u003c/p\\u003e\\n \\u003cp\\u003e\\u003cem\\u003eThe problem I had\\u0026nbsp;\\u003c/em\\u003e[not completing] \\u003cem\\u003ewas I kept missing your links. That wasn\\u0026rsquo;t deliberate by the way. It was just I kept missing the links\\u003c/em\\u003e\\u0026rdquo; Participant 3, male, medication\\u0026nbsp;\\u003c/p\\u003e\\n \\u003cp\\u003e\\u0026nbsp;\\u003c/p\\u003e\\n \\u003cp\\u003e\\u0026ldquo;I\\u003cem\\u003et was when it was asking my dosage of my medications and I got mixed up a little bit\\u0026hellip;I got confused\\u0026rdquo;\\u003c/em\\u003e Participant 20, female, medication and informal care\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003c/tbody\\u003e\\n\\u003c/table\\u003e\\n\\u003cp\\u003eAbbreviations: ePGHD, electronic patient-generated health data; TFA, theoretical framework of acceptability\\u003c/p\\u003e\\n\\u003ch2\\u003eIntegrative synthesis of qualitative and quantitative findings on feasibility, acceptability and added value\\u003c/h2\\u003e\\n\\u003ch3\\u003eFeasibility of collecting ePGHD on self-care\\u003c/h3\\u003e\\n\\u003cp\\u003eOur data suggested that it is feasible to collect ePGHD on self-care in patients with musculoskeletal conditions but that lack of access to, or unwillingness to engage with, technology, and pain/stiffness in the hands may hamper patient engagement in collecting ePGHD on self-care.\\u0026nbsp;\\u003c/p\\u003e\\n\\u003cp\\u003eThe consent to onboarding conversion rate reflected that most participants found the registration process straightforward: the majority completed their 6-month data collection period and completed \\u0026ge;80% of the scheduled questionnaires. Only some participants required telephone support to onboard successfully. Others reported text messages to be useful prompts to complete questionnaires.\\u0026nbsp;\\u003c/p\\u003e\\n\\u003cp\\u003eInterviews indicated that people perceived the ePGHD items as relevant and mostly easy to understand. Some confusion arose for those on multiple/frequently changing medications. They suggested populating their prescribed medication directly from their medical records as a starting point for them to edit.\\u0026nbsp;\\u003c/p\\u003e\\n\\u003cp\\u003eThe main barrier to feasibility were periods of ill-health and/or personal challenges (e.g., stress at work, periods of depression, worsening of symptoms) and two participants withdrew from the study for these reasons.\\u0026nbsp;\\u003c/p\\u003e\\n\\u003ch3\\u003eAcceptability of collecting ePGHD on self-care\\u003c/h3\\u003e\\n\\u003cp\\u003eOverall, interviewed participants found collecting self-care ePGHD acceptable. Completing questionnaires was described as requiring minimal effort, taking 5-10 minutes to complete, and easy to incorporate into their daily lives. Some participants chose to complete additional questionnaires and reported direct benefits from personal monitoring of their medication and social care use, either as a motivator (\\u0026ldquo;\\u003cem\\u003eI can do this task without help now!\\u003c/em\\u003e\\u0026rdquo;) or as an opportunity to reflect on their symptoms (\\u0026ldquo;\\u003cem\\u003eto really listen to my body\\u003c/em\\u003e\\u0026rdquo;).\\u0026nbsp;\\u003c/p\\u003e\\n\\u003cp\\u003eOne participant described how the questionnaire served as another reminder of their condition. This was a sentiment echoed by some who completed \\u0026lt;80% of scheduled questionnaires, and even those who completed all/most of the questionnaires reflected that they would have been unable to do so at other stages of their life (\\u003cem\\u003e\\u0026ldquo;I\\u0026rsquo;d have found it too upsetting\\u0026rdquo;)\\u003c/em\\u003e. However, all participants felt that if collecting ePGHD was a pre-established routine, it would take less cognitive effort during these periods. Others indicated that acceptability during these periods of distress would increase if they had a better understanding of the potential direct benefits of collecting ePGHD for their care \\u003cem\\u003e(\\u0026ldquo;It would have been the better time to fill it in...when you\\u0026rsquo;re struggling the most\\u0026rdquo;).\\u0026nbsp;\\u003c/em\\u003e\\u0026nbsp;\\u003c/p\\u003e\\n\\u003cp\\u003eParticipants felt strongly that if asked to contribute ePGHD, they should be provided with clear guidance on how often their data would be monitored (before appointment, or in-between), by whom (healthcare provider or research staff) and for what purpose (research or to inform individual treatment plans). One participant sought reassurance that the ePGHD could not be used punitively, for example to withdraw care support.\\u0026nbsp;\\u003c/p\\u003e\\n\\u003ch3\\u003eAdded value of ePGHD on self-care\\u003c/h3\\u003e\\n\\u003cp\\u003eAll participants could identify several benefits of collecting ePGHD on medication and social care use. Many found it useful to collect ePGHD to monitor their fluctuating support needs and use of over-the-counter and opioid medications. For example, one participant said it highlighted an escalating dependency, prompting them to seek medical help (\\u0026ldquo;\\u003cem\\u003eIt gave me a prod to go and do something about it. There was something wrong\\u003c/em\\u003e\\u0026rdquo;).\\u0026nbsp;\\u003c/p\\u003e\\n\\u003cp\\u003eAlthough prescribed medications were accurately named in health records, there was no or limited information on actual dosage, less serious side-effects, and on the use of supplements. All participants, however, felt it important for their healthcare provider to have a comprehensive understanding of their medication regime. Many described feeling rushed during in-person consultations, unable to recall medications taken, and some described an inability to articulate their level of pain/discomfort. Interviewees believed having information on their medication use, side effects, and symptoms available during their appointment would lead to more informed, patient-led discussions.\\u0026nbsp;\\u003c/p\\u003e\\n\\u003cp\\u003eSimilarly, minimal information on formal and informal social care was found in participants\\u0026rsquo; health records, despite most participants reporting high levels of support in their ePGHD. None of the participants felt their social care needs were addressed during their clinic appointments, and that healthcare professionals did not understand the impact of living with a musculoskeletal condition on everyday life. On one hand, some participants recognised time pressures on professionals, and conceded that given time restraints, it was not surprising that consultations were medication-focused, rather than incorporating \\u0026ldquo;personal matters\\u0026rdquo;. On the other hand, others felt their care needs were dismissed (\\u003cem\\u003e\\u0026ldquo;Because I don\\u0026rsquo;t get official support from carers\\u0026hellip; I think it just gets pushed by the wayside...Informal help is taken for granted\\u0026rdquo;)\\u003c/em\\u003e, reflected by\\u003cem\\u003e\\u0026nbsp;\\u003c/em\\u003ethe minimal information documented in health records \\u003cem\\u003e(\\u003c/em\\u003ee.g.,\\u003cem\\u003e\\u0026nbsp;\\u0026ldquo;Help available at home\\u0026rdquo;).\\u003c/em\\u003e They believed providing healthcare professionals insight into the specific tasks they struggled with would lead to more personalised, tailored treatment plans (\\u0026ldquo;\\u003cem\\u003eYou can find 10 people with same condition, all with a carer, needing very different levels of help\\u0026rdquo;). \\u0026nbsp;\\u003c/em\\u003e\\u003c/p\\u003e\"},{\"header\":\"Discussion\",\"content\":\"\\u003ch2\\u003eSummary of main findings\\u0026nbsp;\\u003c/h2\\u003e\\n\\u003cp\\u003eThe main findings of the study were: (1) Collecting ePGHD on self-care was feasible and acceptable to most people. The majority of participants who consented to take part completed \\u0026ge;80% of their scheduled questionnaires, considered the onboarding and collection process easy, and perceived collecting self-care ePGHD longer-term as beneficial; (2) Collecting self-care ePGHD may not be feasible and acceptable for everyone due to technological barriers and physical limitations specific to this patient group (e.g., impaired dexterity). Feasibility and acceptability may reduce during periods of physical and/or emotional ill-health; and (3) ePGHD on self-care substantially contributed additional information on medication and social care use not currently available in health records, including medication frequency, side effects, use of additional supplements, and formal and informal social care use. This suggested that ePGHD has significant added value by filling the current information gap on use of self-care in people with musculoskeletal conditions.\\u003c/p\\u003e\\n\\u003ch2\\u003eComparison to previous studies\\u003c/h2\\u003e\\n\\u003cp\\u003eThe high patient feasibility and acceptability in this study is consistent with previous research focusing on ePGHD on symptom experience in the context of musculoskeletal conditions (Austin et al., 2020; Watson et al., 2024; Benskers et al., 2024; Seppen et al., 2023). Aligned with the wider ePGHD literature, participants were motivated to collect ePGHD both for self-monitoring purposes and for facilitating better informed, more patient-led consultations (Zhu et al., 2016; Lavallee et al.,2020; Burns et al., 2019). Although in this study, the ePGHD was not reviewed by healthcare professionals to inform direct care, all participants considered this beneficial for similar efforts in the future.\\u0026nbsp;\\u003c/p\\u003e\\n\\u003cp\\u003eIn contrast to previous research (Bulls et al., 2019), our participants were unconcerned about the negative stigma of opioid use and were happy to self-report it, assigning more importance to their health care professionals having a comprehensive picture of their medication use and pain levels. In keeping with the findings from Kinder et al (Kinder et al.., 2009), the actual dose of opioids was not documented in health records and two patients reported taking medications prescribed to someone else in their family. This information is especially relevant for informing clinical care and drug safety research because higher opioid doses, measured by morphine milligram equivalents, are incrementally associated with serious adverse events, such as deaths (Jani et al., 2025). Also, we found that use of supplements was underreported. Although these can be obtained without a prescription, there remains the risk of adverse effects or drug interactions (Michos et al., 2021).\\u0026nbsp;Similarly, and in line with others (Lopes \\u003cem\\u003eet al.\\u003c/em\\u003e, Rana et al., 2021). we found that information on less serious side-effects of opioids (e.g., constipation and brain-fog) was limited in health records compared to ePGHD, whilst these can greatly impact patients\\u0026rsquo; quality of life (Rana et al., 2021). \\u0026nbsp;\\u003c/p\\u003e\\n\\u003cp\\u003eWe found an absence of social care information documented in participants\\u0026rsquo; health records compared to their ePGHD, reflecting the participants\\u0026rsquo; perceptions that their care needs are not fully addressed during clinic appointments. Nearly all participants were in receipt of unpaid help from partners, family members or friends. Interestingly, one participant failed to report their son as providing informal support in ePGHD, as they believed that \\u003cem\\u003e\\u0026ldquo;didn\\u0026rsquo;t count\\u0026rdquo;.\\u003c/em\\u003e This was consistent with a 2022 study that found 74% of social care accessed by people with musculoskeletal conditions was received informally, and suggested the need and cost to both patients and carers were underestimated (Humphreys et al., 2022).\\u0026nbsp;Given the patient-reported use of informal support in this study, fear that this data would impact disability or carers allowance (Gorthwaite et al., 2016) did not seem to be a consideration for most participants in our study, with only one interviewee identifying this as a potential drawback of collecting self-care ePGHD.\\u0026nbsp;\\u003c/p\\u003e\\n\\u003cp\\u003eAlthough most participants in our study consistently submitted their ePGHD questionnaires, some reported that they would fail to do this during periods of high emotional stress or ill health, and others cited this as the reason for withdrawing from the study. Consistent with previous research, our findings suggest that patient motivation could be improved with an increased understanding of the purpose and benefit of collecting ePGHD on self-care, and reassurance that the data would be valued by health care professionals (Zhu et al 2016; Lavallee et al 2020; Adler-Milstei et al ). \\u0026nbsp; \\u0026nbsp;\\u003c/p\\u003e\\n\\u003ch2\\u003eStrengths and limitations\\u0026nbsp;\\u003c/h2\\u003e\\n\\u003cp\\u003eThis is the first time feasibility, acceptability and added value of collecting patient generated data on self-care has been explored in patients with long-term conditions. However, one limitation is the selection of people taking part in our study: most participants were from a white British background, reflecting the predominant demographic of patients attending the clinic, and only participants who could read and write English were invited. Further studies will, therefore, need to investigate the feasibility and acceptability of collecting ePGHD for a more diverse sample, including non-English speakers, to confirm whether our findings generalise to these, often underrepresented, subgroups.\\u003c/p\\u003e\\n\\u003cp\\u003eA second, related limitation is that some patients may not have been given the opportunity to participate due to recruiting staff\\u0026rsquo;s presumptions that the study would not be of interest, or that that technological or physical barriers would be prohibitive. Recruitment was supplemented by email invitations to patients who had recently completed an online survey about the musculoskeletal symptoms and medication use. Individuals with higher digital literacy and those with fewer concerns about reporting self-care data may therefore be overrepresented in our sample.\\u0026nbsp;\\u003c/p\\u003e\\n\\u003ch2\\u003eImplications\\u0026nbsp;\\u003c/h2\\u003e\\n\\u003ch3\\u003eImplications for health care providers and policy makers\\u003c/h3\\u003e\\n\\u003cp\\u003eThe incorporation of ePGHD into routine clinical care could be transformative, providing a more comprehensive picture of a person\\u0026rsquo;s condition (Gandrup et al., 2022). While recommended that healthcare providers should proactively ask about patients\\u0026rsquo; self-care (Soomro et al., 2024), this may be problematic due to time pressured appointments and current burden of electronic records (Arndt et al., 2017). Our data showed that information on medication and social care use can be feasibly captured from patients with a long-term condition, and that this input provided additional and accurate information not currently captured in health records. Therefore, health care providers and policy makers should promote and support collecting of self-care ePGHD to complement the picture of people\\u0026rsquo;s medication and social care use over time. This would provide clinicians with key information on how well the disease is controlled; whether medication use is optimal (e.g. the need for opioid tapering) or if side effects require a change in; the impact of disease on people\\u0026rsquo;s everyday lives; and on if patients\\u0026rsquo; care needs are being met or if further signposting to help and advice is needed.\\u0026nbsp;\\u003c/p\\u003e\\n\\u003cp\\u003eTo support an integrated approach for those living with long-term conditions, there has been a call in the UK for health and care to be more co-ordinated (NHS England) but our findings on absent social care use data in health records suggest that this is not yet the case. Although arranging and monitoring social care use may go beyond the role of primary and secondary healthcare teams, policy makers should consider how best to capture and document social care use (Simpson et al., 2021), particularly for those relaying on informal/unpaid support. \\u0026nbsp;\\u003c/p\\u003e\\n\\u003ch3\\u003eImplications for patients\\u003c/h3\\u003e\\n\\u003cp\\u003eOur findings suggested that patients may find self-monitoring of their self-care use beneficial. In addition to identifying increased use and reliance on opioid and over-the-counter medications, patients tapering their medications, for example after changing their life style, could also track the impact of this intervention on their daily use. Similarly, tracking use of informal support at home can be used as a motivator to set personal targets, and a way to share information that patients perceive is not currently incorporated into their clinical care. Lastly, by frequently collecting self-care ePGHD, patients would have to rely less on their recall during time-pressured, infrequent clinic visits.\\u0026nbsp;\\u003c/p\\u003e\\n\\u003ch3\\u003eImplications for researchers\\u003c/h3\\u003e\\n\\u003cp\\u003eResearchers should consider incorporating ePGHD on self-care in their studies to help answer key questions pertaining to musculoskeletal conditions. For example, asking participants in pharmacoepidemiology studies to provide information on their medication use could reduce exposure misclassification, underestimation of frequency of medication-related harms, or missed interactions between prescribed medications and over-the-counter medications and supplements (Jani et al., 2023). Given that patients largely rely on informal care undocumented in health records (Humphreys et al.,2022), future epidemiological studies fully rely on ePGHD to help assess the true economic burden of musculoskeletal conditions.\\u0026nbsp;\\u003c/p\\u003e\"},{\"header\":\"Conclusion\",\"content\":\"\\u003cp\\u003eCollecting self-care ePGHD was mostly feasible and acceptable to patients living with musculoskeletal conditions, providing information on medication (opioids and over-the-counter), supplements, and social care use not currently captured in routine health records. However, feasibility and acceptability varied depending on people\\u0026rsquo;s technology access, physical capabilities, and fluctuating health and wellbeing status. Incorporating ePGHD on self-care in routine care settings and research studies could enhance healthcare delivery and patient outcomes, and help address important yet unanswered questions on pharmaco-epidemiology and disease burden of musculoskeletal conditions. \\u0026nbsp;\\u003c/p\\u003e\\n\\u003cp\\u003e\\u0026nbsp;\\u003c/p\\u003e\"},{\"header\":\"Declarations\",\"content\":\"\\u003ch3\\u003eEthics approval and consent to participate\\u003c/h3\\u003e\\n\\u003cp\\u003eThe study has been reviewed by an NHS Research Ethics Committee, Wales REC 6. All participants gave voluntary, informed consent to participate.\\u0026nbsp;\\u003c/p\\u003e\\n\\u003ch3\\u003eConsent for publication\\u003c/h3\\u003e\\n\\u003cp\\u003eNot applicable\\u003c/p\\u003e\\n\\u003ch3\\u003eAvailability of data and materials\\u0026nbsp;\\u003c/h3\\u003e\\n\\u003cp\\u003eThe datasets used and analysed during the study are available form the corresponding author on reasonable request\\u003c/p\\u003e\\n\\u003ch3\\u003eCompeting interests\\u003c/h3\\u003e\\n\\u003cp\\u003eThe authors declare that they have no competing interests\\u003c/p\\u003e\\n\\u003ch3\\u003eFunding\\u003c/h3\\u003e\\n\\u003cp\\u003eThis project has been funded by the Nuffield Foundation\\u0026rsquo;s Oliver Bird Fund and Versus Arthritis, but the views expressed are those of the authors and not necessarily the funders. Visit www.nuffieldfoundation.org and www.versusarthritis.org.\\u003c/p\\u003e\\n\\u003cp\\u003eMJ is funded by a National Institute for Health and Care Research (NIHR) Advanced Fellowship [NIHR301413]. The views expressed in this publication are those of the authors and not necessarily those of the NIHR, NHS or the UK Department of Health and Social Care.\\u003c/p\\u003e\\n\\u003ch3\\u003eAuthors\\u0026rsquo; contributions\\u0026nbsp;\\u003c/h3\\u003e\\n\\u003cp\\u003eAuthors SnvdV and WD devised the research and supervised the work. All authors contributed to the design and implementation of the research. Data collection was conducted by SL and SM, and analysis conducted by SNvdV and SM. SM wrote the main manuscript text. All authors aided in interpreting the results and reviewed the manuscript.\\u003c/p\\u003e\\n\\u003ch3\\u003eAcknowledgements\\u003c/h3\\u003e\\n\\u003cp\\u003eNot applicable\\u003c/p\\u003e\"},{\"header\":\"References\",\"content\":\"\\u003col\\u003e\\n\\u003cli\\u003eArndt, B. G., Beasley, J. W., Watkinson, M. D., Temte, J. L., Tuan, W., Sinsky, C., \\u0026amp; Glichrist, V. J. (2017). Tethered to the EHR: primary care physician workload assessment using EHR event log data and time-motion observations. \\u003cem\\u003eThe Annals of Family Medicine, 15\\u003c/em\\u003e(5), 419-426. https://doi.org/10.1370/afm.2121\\u003c/li\\u003e\\n\\u003cli\\u003eAustin, L., Sharp, C. A., van der Veer, S. N., Machin, M., Humphreys, J., Mellor, P., McCarthy, J., Ainsworth, J., Sanders, C., \\u0026amp; Dixon, W. G. (2020). Providing \\u0026lsquo;the bigger picture\\u0026rsquo;: benefits and feasibility of integrating remote monitoring from smartphones into the electronic health record: findings from the Remote Monitoring of Rheumatoid Arthritis (REMORA) study. \\u003cem\\u003eRheumatology, 59\\u003c/em\\u003e(2), 367-378. https://doi.org/10.1093/rheumatology/kez207\\u003c/li\\u003e\\n\\u003cli\\u003eBedson, J., Chen, Y., Hayward, R. A., Ashworth, J., Walters, K., Dunn, K., \\u0026amp; Jordan, K. P. (2016). Trends in long-term opioid prescribing in primary care patients with musculoskeletal conditions: an observational database study. \\u003cem\\u003ePain, 157\\u003c/em\\u003e(7), 1525-1532. https://dx.doi.org/10.1097%2Fj.pain.0000000000000557\\u003c/li\\u003e\\n\\u003cli\\u003eBriggs, A. M., Woolf, A. D., Dreinhofer, K., Homb, N., Hoy, D. G., Kopansky-Giles, D., Akesson, K., \\u0026amp; March, L. (2018). Reducing the global burden of musculoskeletal conditions. \\u003cem\\u003eBulletin of the World Health Organization, 96\\u003c/em\\u003e(5), 366-368. https://dx.doi.org/10.2471%2FBLT.17.204891\\u003c/li\\u003e\\n\\u003cli\\u003eBulls, H. W., Hoogland, A. I., Craig, D., Paice, J., Chang, Y. D., Oberoi-Jassal, R., Rajasekhara, S., Haas, M., Bobonis, M., Gonzalez, B. D., Portman, D., \\u0026amp; Jim, H. S. L. (2019). Cancer and opioids: patient experiences with stigma (COPES) \\u0026ndash; a pilot study. \\u003cem\\u003eJournal of Pain and Symptom Management, 57\\u003c/em\\u003e(4), 816-819. https://doi.org/10.1016/j.jpainsymman.2019.01.013\\u003c/li\\u003e\\n\\u003cli\\u003eBurton, J. K., Wolters, A. T., Towers, A., Jones, L., Meyer, J., Gordon, A. L., Irvine, L., Hanratty, B., Spilsbury, K., Peryer, G., Rand, S., Killet, A., Akdur, G., Allan, S., Biswas, P. \\u0026amp; Goodman, C. (2022). Developing a minimum data set for older adult care homes in the UK: exploring the concept and defining early core principles. \\u003cem\\u003eThe Lancet Health Longevity, 3\\u003c/em\\u003e(3), e186-193. https://doi.org/10.1016/S2666-7568(22)00010-1\\u003c/li\\u003e\\n\\u003cli\\u003eDepartment of Health (2005) Self Care \\u0026ndash; A Real Choice. London: Department of Health. 2 Barlow, JH, Wright, CC, Turner, AP, and Bancroft, GV (2005) https://www.bma.org.uk/advice/employment/gp-practices/quality-first/patient-empowerment\\u003c/li\\u003e\\n\\u003cli\\u003eDucharme, J. \\u0026amp; Moore, S. (2019). Opioid use disorder assessment tools and drug screening. \\u003cem\\u003eMissouri Medicine, 116\\u003c/em\\u003e(4), 318-324. \\u003c/li\\u003e\\n\\u003cli\\u003eFarmer T, Robinson K, Elliott SJ, Eyles J. (2006) Developing and implementing a triangulation protocol for qualitative health research. Qual Health Res. 2006 Mar;16(3):377-94. doi: 10.1177/1049732305285708. PMID: 16449687.\\u003c/li\\u003e\\n\\u003cli\\u003eGarthwaite, K. (2014). Fear of the brown envelope: exploring welfare reform with long-term sickness benefits recipients. \\u003cem\\u003eSocial Policy \\u0026amp; Administration, 48\\u003c/em\\u003e(7), 782-798. https://doi.org/10.1111/spol.12049\\u003c/li\\u003e\\n\\u003cli\\u003eHoffmann TC GP, Boutron I, Milne R, et al. . Better reporting of interventions: template for intervention description and replication (TIDieR) checklist and guide. BMJ 2014;348:g1687\\u003c/li\\u003e\\n\\u003cli\\u003eHumphreys, J. H., Cook, L., Clarkson, P. \\u0026amp; Dixon, W. (2022). The influence of chronic pain on social care service use in the UK. \\u003cem\\u003eJournal of Long-Term Care, \\u003c/em\\u003e40-48. http://doi.org/10.31389/jltc.89\\u003c/li\\u003e\\n\\u003cli\\u003eJani M, Girard N, Bates DW, Buckeridge DL, Dixon WG, Tamblyn R (2025). Comparative risk of mortality in new users of prescription opioids for noncancer pain: results from the International Pharmacosurveillance Study. \\u003cem\\u003ePain.\\u003c/em\\u003e 2025 May 1;166(5):1118-1127. doi: 10.1097/j.pain.0000000000003446. Epub 2024 Oct 29. PMID: 39503752; PMCID: PMC12004978.\\u003c/li\\u003e\\n\\u003cli\\u003eJani, M., Yimer, B.B., Sleby, D., Lunt, M et al (2023) \\u0026ldquo;Take up to eight tablets per day\\u0026rdquo;: Incorporating free-text medication instructions into a transparent and reproducible process for preparing drug exposure data for pharmacoepidemiology. \\u003cem\\u003ePharmacoepediemiol Drug Saf 2023 Jun;32(6):651-660. doi: 10.1002/pds.5595. Epub 2023 Feb 11. PMID: 36718594; PMCID: PMC10947089 \\u003c/em\\u003e\\u003c/li\\u003e\\n\\u003cli\\u003eKidner, C. L., Mayer, T. G., \\u0026amp; Gatchel, R. J. (2009). Higher opioid doses predict poorer functional outcome in patients with chronic disabling occupational musculoskeletal disorders. \\u003cem\\u003eJournal of Bone \\u0026amp; Joint Surgery, 91\\u003c/em\\u003e(4), 919-927. https://dx.doi.org/10.2106%2FJBJS.H.00286\\u003c/li\\u003e\\n\\u003cli\\u003eLavallee, D.C., Lee, J.R., Austin, E., Bloch, R.et al (2020) mHealth and patient generated health data: stakeholder perspectives on opportunities and barriers for transforming healthcare. \\u003cem\\u003eMhealth \\u003c/em\\u003e\\u003cem\\u003ehttps://doi.org/10.21037/mhealth.2019.09.17\\u003c/em\\u003e\\u003cem\\u003e \\u003c/em\\u003e\\u003c/li\\u003e\\n\\u003cli\\u003eLopes, G. S., Bielinski, S., Moyer, A. M., Jacobson, D. J., Wang, L., Jiang, R., Larson, N. B., Miller, V. M., Zhu, Y., Cavanaugh, D. C., \\u0026amp; St Sauver, J. (2021). Sex differences in type and occurrence of adverse reactions to opioid analgesics: a retrospective cohort study. \\u003cem\\u003eBMJ Open, 11, \\u003c/em\\u003ee044157. http://dx.doi.org/10.1136/bmjopen-2020-044157\\u003c/li\\u003e\\n\\u003cli\\u003eMedina CR, Lyon M, Davies E, McCarthy D, Reid V, Khanna A, Jani M. (2025) Clinical indications associated with new opioid use for pain management in the United Kingdom: using national primary care data. Pain. 2024 Mar 1;166(3):656-666. doi: 10.1097/j.pain.0000000000003402. Epub 2024 Oct 24. PMID: 39446674; PMCID: PMC11808705\\u003c/li\\u003e\\n\\u003cli\\u003eO\\u0026rsquo;Cathain, A., Murphy, E., \\u0026amp; Nicholl, J. (2008). The quality of mixed methods studies in health services research. \\u003cem\\u003eJournal of Health Services Research \\u0026amp; Policy, 13\\u003c/em\\u003e(2), 92-98. https://doi.org/10.1258%2Fjhsrp.2007.007074\\u003c/li\\u003e\\n\\u003cli\\u003eOmoloja, A. \\u0026amp; Vundavalli, S. (2021). Patient generated health data: benefits and callenges. \\u003cem\\u003eCurrent Problems in Pediatric and Adolescent Health Care, 51\\u003c/em\\u003e(11), 101103. https://doi.org/10.1016/j.cppeds.2021.101103\\u003c/li\\u003e\\n\\u003cli\\u003eRana H, Nenadic G, Dixon WG, Jani M. Perceptions of opioid use and impact on quality of life in patients with musculoskeletal conditions within online health community forums.\\u003cem\\u003e Rheumatol Adv Pract.\\u003c/em\\u003e 2021 Nov 10;5(3):rkab078. doi: 10.1093/rap/rkab078. PMID: 34805738; PMCID: PMC8598994.\\u003c/li\\u003e\\n\\u003cli\\u003eSimpson G, Mutindi Kaluvu L, Stokes J, Roderick P, Chapman A, Akyea RK, Zaccardi F, Santer M, Farmer A, Dambha-Miller H. Understanding social care need through primary care big data: a rapid scoping review. BJGP Open. 2022 Dec 20;6(4):BJGPO.2022.0016. doi: 10.3399/BJGPO.2022.0016. PMID: 35788025; PMCID: PMC9904775.\\u003c/li\\u003e\\n\\u003cli\\u003eSobczak, L. \\u0026amp; Gorynski, K. (2020). Pharmacological aspects of over-the-counter opioid drugs misuse.\\u003cem\\u003e Molecules, 25, \\u003c/em\\u003e3905. https://doi.org/10.3390/molecules25173905\\u003c/li\\u003e\\n\\u003cli\\u003eSoomro M, Lyons S, Bravo R, McBeth J, Lunt M, Dixon WG, Jani M. (2024) Use of over-the-counter supplements, sleep aids and analgesic medicines in rheumatology: results of a cross-sectional survey. Rheumatol Adv Pract. 2024 Oct 9;8(4):rkae129. doi: 10.1093/rap/rkae129. PMID: 39524968; PMCID: PMC11543522.\\u003c/li\\u003e\\n\\u003cli\\u003eWorld Health Organization (2021, April 21). \\u003cem\\u003eMusculoskeletal conditions.\\u003c/em\\u003e https://www.who.int/news-room/fact-sheets/detail/musculoskeletal-conditions\\u003c/li\\u003e\\n\\u003c/ol\\u003e\"}],\"fulltextSource\":\"\",\"fullText\":\"\",\"funders\":[],\"hasAdminPriorityOnWorkflow\":false,\"hasManuscriptDocX\":true,\"hasOptedInToPreprint\":true,\"hasPassedJournalQc\":\"\",\"hasAnyPriority\":false,\"hideJournal\":false,\"highlight\":\"\",\"institution\":\"\",\"isAcceptedByJournal\":false,\"isAuthorSuppliedPdf\":false,\"isDeskRejected\":\"\",\"isHiddenFromSearch\":false,\"isInQc\":false,\"isInWorkflow\":false,\"isPdf\":false,\"isPdfUpToDate\":true,\"isWithdrawnOrRetracted\":false,\"journal\":{\"display\":true,\"email\":\"info@researchsquare.com\",\"identity\":\"bmc-musculoskeletal-disorders\",\"isNatureJournal\":false,\"hasQc\":true,\"allowDirectSubmit\":false,\"externalIdentity\":\"bmsd\",\"sideBox\":\"Learn more about [BMC Musculoskeletal Disorders](http://bmcmusculoskeletdisord.biomedcentral.com/)\",\"snPcode\":\"\",\"submissionUrl\":\"https://author-welcome.nature.com/12891\",\"title\":\"BMC Musculoskeletal Disorders\",\"twitterHandle\":\"BMC_series\",\"acdcEnabled\":true,\"dfaEnabled\":true,\"editorialSystem\":\"stoa\",\"reportingPortfolio\":\"BMC Series\",\"inReviewEnabled\":true,\"inReviewRevisionsEnabled\":true},\"keywords\":\"patient-reported outcome measures, remote monitoring, patient-generated health data, musculoskeletal diseases\",\"lastPublishedDoi\":\"10.21203/rs.3.rs-7264851/v1\",\"lastPublishedDoiUrl\":\"https://doi.org/10.21203/rs.3.rs-7264851/v1\",\"license\":{\"name\":\"CC BY 4.0\",\"url\":\"https://creativecommons.org/licenses/by/4.0/\"},\"manuscriptAbstract\":\"\\u003cp\\u003e\\u003cstrong\\u003eBackground:\\u003c/strong\\u003e Self-care for people with musculoskeletal conditions often includes taking pain-relieving medication at times of need and organising help with daily activities (social care). Information on this self-care is not systematically documented by healthcare providers but could be generated by patients themselves.\\u003c/p\\u003e\\n\\u003cp\\u003e\\u003cstrong\\u003eAims: \\u003c/strong\\u003eTo assess the feasibility, acceptability and added value of electronic patient-generated data on opioid, over-the-counter medication and supplement use, and social care use in people with musculoskeletal conditions.\\u003c/p\\u003e\\n\\u003cp\\u003e\\u003cstrong\\u003eMethods: \\u003c/strong\\u003eAdults with a musculoskeletal condition from an outpatient department in England completed a web-based questionnaire on their medication and/or social care use every two weeks for six months. Using a sequential mixed-methods approach, we analysed questionnaire response rates and completeness, and transcripts from interviews with patients. We also compared patient-generated self-care data to data recorded in electronic health records.\\u003c/p\\u003e\\n\\u003cp\\u003e\\u003cstrong\\u003eResults: \\u003c/strong\\u003eOf 102 people invited, thirty-six consented to take part; reasons to decline included no access to technology or unwillingness to use it for collecting self-care data, and physical limitations due to people’s condition. All those consenting completed at least one questionnaire, with twenty-two of them completing ≥80% of questionnaires. Participants identified potential benefits of data collection (e.g., to support self-monitoring and patient-led consultations) and considered it feasible to continue this longer term. We found that patient-generated self-care data contributed new information on (changes over time in) medication (e.g. medication frequency, side effects, and supplement use) and social care use (e.g. level of formal/informal support received) compared to data in the electronic health record.\\u003c/p\\u003e\\n\\u003cp\\u003e\\u003cstrong\\u003eConclusions: \\u003c/strong\\u003ePeople with musculoskeletal conditions found it feasible and acceptable to collect electronic patient-generated data on self-care, which complemented information recorded by clinicians in electronic health records, including changes in self-care use over time. Healthcare providers should therefore consider collecting patient-generated self-care data to enhance service delivery and patient outcomes, and to enrich musculoskeletal research.\\u003c/p\\u003e\\n\\u003cp\\u003e\\u003cstrong\\u003eClinical trial number:\\u003c/strong\\u003e Not applicable\\u003c/p\\u003e\",\"manuscriptTitle\":\"Feasibility, acceptability, and added value of electronic patient-generated data on self-care use for people with musculoskeletal conditions: a mixed method study\",\"msid\":\"\",\"msnumber\":\"\",\"nonDraftVersions\":[{\"code\":1,\"date\":\"2025-09-22 10:18:46\",\"doi\":\"10.21203/rs.3.rs-7264851/v1\",\"editorialEvents\":[{\"type\":\"communityComments\",\"content\":0},{\"type\":\"decision\",\"content\":\"Revision requested\",\"date\":\"2026-02-02T18:06:25+00:00\",\"index\":\"\",\"fulltext\":\"\"},{\"type\":\"editorInvitedReview\",\"content\":\"\",\"date\":\"2025-12-05T13:21:14+00:00\",\"index\":\"hide\",\"fulltext\":\"\"},{\"type\":\"editorInvitedReview\",\"content\":\"\",\"date\":\"2025-11-27T15:54:47+00:00\",\"index\":\"hide\",\"fulltext\":\"\"},{\"type\":\"reviewerAgreed\",\"content\":\"166294231232675724649324869940652834514\",\"date\":\"2025-11-24T09:31:57+00:00\",\"index\":\"hide\",\"fulltext\":\"\"},{\"type\":\"reviewerAgreed\",\"content\":\"327629351964322545475910708102501235224\",\"date\":\"2025-11-23T10:14:50+00:00\",\"index\":\"hide\",\"fulltext\":\"\"},{\"type\":\"reviewerAgreed\",\"content\":\"323532525446024715223189097369329442060\",\"date\":\"2025-09-14T09:26:56+00:00\",\"index\":\"hide\",\"fulltext\":\"\"},{\"type\":\"reviewersInvited\",\"content\":\"\",\"date\":\"2025-09-12T01:41:37+00:00\",\"index\":\"\",\"fulltext\":\"\"},{\"type\":\"editorInvited\",\"content\":\"\",\"date\":\"2025-08-14T06:19:12+00:00\",\"index\":\"\",\"fulltext\":\"\"},{\"type\":\"editorAssigned\",\"content\":\"\",\"date\":\"2025-08-13T06:16:50+00:00\",\"index\":\"\",\"fulltext\":\"\"},{\"type\":\"checksComplete\",\"content\":\"\",\"date\":\"2025-08-13T06:15:26+00:00\",\"index\":\"\",\"fulltext\":\"\"},{\"type\":\"submitted\",\"content\":\"BMC Musculoskeletal Disorders\",\"date\":\"2025-07-31T17:52:06+00:00\",\"index\":\"\",\"fulltext\":\"\"}],\"status\":\"published\",\"journal\":{\"display\":true,\"email\":\"info@researchsquare.com\",\"identity\":\"bmc-musculoskeletal-disorders\",\"isNatureJournal\":false,\"hasQc\":true,\"allowDirectSubmit\":false,\"externalIdentity\":\"bmsd\",\"sideBox\":\"Learn more about [BMC Musculoskeletal Disorders](http://bmcmusculoskeletdisord.biomedcentral.com/)\",\"snPcode\":\"\",\"submissionUrl\":\"https://author-welcome.nature.com/12891\",\"title\":\"BMC Musculoskeletal Disorders\",\"twitterHandle\":\"BMC_series\",\"acdcEnabled\":true,\"dfaEnabled\":true,\"editorialSystem\":\"stoa\",\"reportingPortfolio\":\"BMC Series\",\"inReviewEnabled\":true,\"inReviewRevisionsEnabled\":true}}],\"origin\":\"\",\"ownerIdentity\":\"f3b41ed1-747e-469d-946b-8a934253050c\",\"owner\":[],\"postedDate\":\"September 22nd, 2025\",\"published\":true,\"recentEditorialEvents\":[],\"rejectedJournal\":[],\"revision\":\"\",\"amendment\":\"\",\"status\":\"under-review\",\"subjectAreas\":[],\"tags\":[],\"updatedAt\":\"2026-02-25T13:38:33+00:00\",\"versionOfRecord\":[],\"versionCreatedAt\":\"2025-09-22 10:18:46\",\"video\":\"\",\"vorDoi\":\"\",\"vorDoiUrl\":\"\",\"workflowStages\":[]},\"version\":\"v1\",\"identity\":\"rs-7264851\",\"journalConfig\":\"researchsquare\"},\"__N_SSP\":true},\"page\":\"/article/[identity]/[[...version]]\",\"query\":{\"redirect\":\"/article/rs-7264851\",\"identity\":\"rs-7264851\",\"version\":[\"v1\"]},\"buildId\":\"8U1c8b4HqxoKbykW_rLl7\",\"isFallback\":false,\"isExperimentalCompile\":false,\"dynamicIds\":[84888],\"gssp\":true,\"scriptLoader\":[]}","source_license":"CC-BY-4.0","license_restricted":false}