Parent/carer and patient understanding of cardiac toxicity post chemotherapy – a qualitative study

Parent/carer and patient understanding of cardiac toxicity post chemotherapy – a qualitative study | Authorea try { document.documentElement.classList.add('js'); } catch (e) { } var _gaq = _gaq || []; _gaq.push(['_setAccount', 'G-8VDV14Y67G']); _gaq.push(['_trackPageview']); (function() { var ga = document.createElement('script'); ga.type = 'text/javascript'; ga.async = true; ga.src = ('https:' == document.location.protocol ? 'https://ssl' : 'http://www') + '.google-analytics.com/ga.js'; var s = document.getElementsByTagName('script')[0]; s.parentNode.insertBefore(ga, s); })(); Skip to main content Preprints Collections Wiley Open Research IET Open Research Ecological Society of Japan All Collections About About Authorea FAQs Contact Us Quick Search anywhere Search for preprint articles, keywords, etc. Search Search ADVANCED SEARCH SCROLL This is a preprint and has not been peer reviewed. Data may be preliminary. 11 January 2025 V1 Latest version Share on Parent/carer and patient understanding of cardiac toxicity post chemotherapy – a qualitative study Authors : Claudia Toro , MIchael Sullivan 0000-0002-8606-5889 , Kanika Bhatia , David Elliott 0000-0003-1052-7407 , and A/Prof Rachel Conyers** [email protected] Authors Info & Affiliations https://doi.org/10.22541/au.173659161.17906046/v1 181 views 123 downloads Contents Abstract Supplementary Material Information & Authors Metrics & Citations View Options References Figures Tables Media Share Abstract Background: With more patients reaching survivorship, cardiovascular disease and its complications are posing an emerging problem for both oncologists and cardiologists [(1)](#ref-0001). There is a paucity of data on parent/carer or patient understanding of cardiotoxicity as a consequence of cancer therapy nor do we know the educational needs as identified by them. Objective: To determine the understanding of the long-term cardiac effects of therapy from a patient and carer perspective and what educational tools are seen as valuable. Method: This is a qualitative study using grounded theory and inductive thematic analysis. Participants were sampled from Australian Cardio-Oncology Registry Study at The Royal Children’s Hospital, Melbourne Australia and was HREC approved. Patient and parents/carers of children aged 1-18 years old who had been diagnosed with cancer were invited to participate. Semi-structured interviews were conducted via Zoom, with interviews being recorded and then transcribed to allow for thematic analysis. Findings: Twenty-one participants were recruited, with one participant being a young adult cancer survivor. A basic awareness of cardiac toxicity was expressed by all participants. Themes of feeling overwhelmed on diagnosis with poor information retention was common. Revisiting these conversations with preference for long-term side effects being discussed closer to end of treatment was highlighted as well as the provision of survivorship plans. Trust in primary physicians was a prominent theme, with most participants expressing desire to seek information from their treating team as well as hospital electronic resources. Conclusion: Better understanding of the educational needs of families of childhood cancer patients and survivors around cardiac risk and toxicity supports a family-centred approach to care. Parent/carer and patient understanding of cardiac toxicity post chemotherapy – a qualitative study Claudia Toro 1,2,3,4 , BMBS, Michael Sullivan 1,3,4 , Prof, Kanika Bhatia 1,3 , BMBS, David Elliott 2,4 , A/Prof, Rachel Conyers 1,2,3,4* , A/Prof 1 Fellowship of Royal Australasian College of Physicians (FRACP) 2 Cardiac Disease Group, Murdoch Children’s Research Institute, Flemington Road, Parkville, 3052 Melbourne 3 Children’s Cancer Centre, The Royal Children’s Hospital, Flemington Road, Parkville, 3052 Melbourne 4 Department of Paediatrics, University of Melbourne, Flemington Road, Parkville 3052 *Correspondence to: A/Prof Rachel Conyers, PhD, MBBS, FRACP 1 Cardiac Disease Group, Murdoch Children’s Research Institute, Flemington Road, Parkville, 3052 Melbourne Email: [email protected] Phone: +61 9345 5522 Text word count 5839 Abstract word count: 262 Brief running title: Patient and family understanding of cardiotoxicity Key words: Cardio-oncology, cardiotoxicity, paediatric oncology, survivorship, long-term follow up Tables: 2 Figures: 2 ACOR Australian cardio-oncology registry HREC Human research ethics committee PI Principle investigator RCH Royal Children’s Hospital CALD Culturally and linguistically diverse Funding This study was funded by the Heart Foundation as part of the Strategic Cardio-Oncology Grants (105525). The funder of the study had no role in the study design, data collection, data analysis, data interpretation or the writing of this report. ABSTRACT Background: With more patients reaching survivorship, cardiovascular disease and its complications are posing an emerging problem for both oncologists and cardiologists (1). There is a paucity of data on parent/carer or patient understanding of cardiotoxicity as a consequence of cancer therapy nor do we know the educational needs as identified by them. Objective: To determine the understanding of the long-term cardiac effects of therapy from a patient and carer perspective and what educational tools are seen as valuable. Method: This is a qualitative study using grounded theory and inductive thematic analysis. Participants were sampled from Australian Cardio-Oncology Registry Study at The Royal Children’s Hospital, Melbourne Australia and was HREC approved. Patient and parents/carers of children aged 1-18 years old who had been diagnosed with cancer were invited to participate. Semi-structured interviews were conducted via Zoom, with interviews being recorded and then transcribed to allow for thematic analysis. Findings: Twenty-one participants were recruited, with one participant being a young adult cancer survivor. A basic awareness of cardiac toxicity was expressed by all participants. Themes of feeling overwhelmed on diagnosis with poor information retention was common. Revisiting these conversations with preference for long-term side effects being discussed closer to end of treatment was highlighted as well as the provision of survivorship plans. Trust in primary physicians was a prominent theme, with most participants expressing desire to seek information from their treating team as well as hospital electronic resources. Conclusion: Better understanding of the educational needs of families of childhood cancer patients and survivors around cardiac risk and toxicity supports a family-centred approach to care. INTRODUCTION Children diagnosed with cancer today have a survival rate of greater than 80%(2). As a result, the burden and impact of side effects of cancer treatment and late effects is becoming more important and a considerable research gap. Cardiovascular disease remains as the second common late effects post cancer treatment, causing significant burden of disease that may lead to premature morbidity and/or death(3-6). Studies among childhood cancer survivors have not only uncovered the increased risk for serious cardiovascular disease and premature death but also highlighted the greater burden of modifiable cardiovascular disease risk factors such as hypertension, diabetes and dyslipidaemia, often developing them at a younger age as compared to their siblings(6). Further, novel molecular and immunotherapies carry increased risk of additional cardiovascular toxicities. Cardiovascular disease identified during and following treatment is an ongoing challenge for both oncologists and cardiologists, with early diagnosis and management of modifiable cardiovascular risk factors crucial in limiting morbidity(7). However, under-diagnosis (with survivors being unaware of their risk factors) and under-treatment remains a significant issue for this population(8). Survivorship guidelines should help increase clinician awareness and address under diagnosis however this fails to address those with lived experience information needs. However, attempts to increase a survivor’s and their parent/carer’s internal locus of control and health literacy, impact their ability to proactively engage in survivorship surveillance, and impact health outcomes(9). Parents of children with cancer play an integral role in ensuring adherence to medical treatment to maximise their child’s well-being(10). Parents of children with cancer often take up the role of protector in guarding their child from the negative consequences of illness(11). Thus, patients over the age of 16, and the parents of those < 16 will play a critical role in understanding therapy related side effects, both happening during and following cancer therapy, and heavily impact adherence to surveillance. There is a need to engage parents and adolescents and young adults in understanding the barriers and enablers to cardiotoxicity knowledge and surveillance. Currently there are no descriptions of those with lived experience (parent or patient) information requirements with respect to cardiotoxicity. More specifically, the literature to date does not detail (a) baseline understanding of the risk of cardiac toxicity with current cancer therapy; (b) information needs; or (c) how information should be delivered. This study aims , using a qualitative semi-structured interview approach, to address this evidence gap and document the educational needs of those with lived experience with respect to cardiac toxicity and if these needs are currently being addressed. Our working hypothesis is that adolescent and young adult patients or parents/carers of children receiving cancer therapy have a limited understanding of the long-term potential cardiac side effects of cancer therapies. Design This is a qualitative study using a grounded theory approach. Participants were sampled from Australian Cardio-Oncology Registry (ACOR) Study at The Royal Children’s Hospital (HREC approved). Eligibility criteria is included in Table 1. Parents/carers of children aged 1-18 years old at the time of treatment, who had been diagnosed with cancer were invited to participate, as well as young adult survivors. Participants were recruited by the ACOR national coordinator, independent to the study principal investigator (PI), and approached potential families. Enrolment aimed to maximise diversity across child characteristics including age, diagnosis, time since diagnosis and treatment approach. Semi-structured interviews were conducted via Zoom, with interviews being recorded and transcribed. Zoom interviews were selected as the primary method as it allowed for participants to choose a time at which they had minimal distractions, will be away from potential stressors of the hospital and be in environment that is comfortable and familiar to them. All interviews were conducted by the principal investigator. Data Collection Semi-structured interviews were conducted using an interview guide with open-ended questions (Figure 1). The PI completed all interviews. The sample size was determined by the depth of the data, with the aim for there to be enough data to be able to sufficiently describe the attendant issues. It was anticipated that between 20-30 participants would be required. Data saturation was reached at 21 participants. The length of the interview was not time limited to allow for sufficient engagement and discussion with the participants and a thorough discussion of themes. Interviews were recorded and transcribed verbatim. The interview guide consisted of 12 questions that allowed participants to reflect on their child’s (or their) treatment journey, asking about their understanding of heart toxicity, what they remembered being told, the timing of information dissemination and how they seek more information about treatment side effects. If the participant or parent/guardian’s child had been diagnosed with cardio-toxicity, the impact of this diagnosis was also explored. Data Analysis A thematic analysis of the data was conducted. Coming from a constructivist perspective, themes or patterns within the data were identified via an inductive or “bottom up” approach(12). This type of analysis goes beyond semantic content but instead examines the underlying ideas and assumptions that are theorised as shaping what is present within the data. The intent of analysis is the findings beyond a narrow theoretical perspective, using an interpretive rather than descriptive approach(13). The first phase of data analysis was for the PI to familiarize themselves with the data. Once transcribed the data was read through in its entirety. The second phase involved systematic data coding with codes being data driven. The third phase involved the development of themes. This involved sorting the different codes into potential themes and collating all the relevant coded data into the identified themes. Potential relationships between themes were also considered here. The fourth phase involved reviewing, refining and naming themes. Field notes were kept for further analysis if necessary. Framework adaption Rigour As the PI works within the children’s cancer centre at the hospital, the potential for bias and pre-conceived ideas to influence the results in the study are acknowledged. A second, independent researcher also reviewed and coded the data, with final data codes being agreed upon by the two researchers. RESULTS Twenty-four potential participants were approached to participate. Three declined, leaving 21 interviews occurring over a 12-month period. All participants, bar two, were parent/guardians of a child diagnosed with cancer. One participant was a young adult cancer survivor and another was a sibling carer of a cancer survivor. Eligibility criteria is listed in table 1. Interview length was between 8 and 30 minutes (median 24.5 minutes). Recruitment ceased after 21 participants as data saturation was reached, where no further new themes were identified. This was assisted by coding after transcription as the study continued. The demographics and stages of treatment are summarised in table 2. The majority of the participants were parent/carers for children who were off-treatment (18/21). The most common diagnosis was leukaemia/lymphoma (15/21). The children of five participants had a diagnosis of a solid tumour. Seven of the 21 children of participants had had a bone marrow transplant (6 allografts, one autologous). Four participants reported their child being affected by cardiac toxicity as a consequence of their cancer therapy. Synthesis The following themes were identified: 1) diagnostic shock; 2) trust; 3) communication and 4) survivorship uncertainty. Respective subthemes are further described with quotes in italics. The conceptual links between themes is represented in Figure 2. Diagnostic shock Participants reflected on the time of diagnosis as being associated with shock and generally feeling overwhelmed. This point in time was identified as being the primary time when side effects of therapy were discussed. This led to different levels of awareness and understanding of treatment side effects, both in the short and long-term. Feelings of powerlessness were also expressed in terms of the apparent lack of choice when it came to proceeding with therapy with inherent risks but with the aim of saving their child’s life. “And then, like they gave us the paperwork with the trial and stuff which I’ll be honest, we were kind of shell shocked at that stage, we didn’t really read through it that much.” (Mother of child with haematological malignancy) “They were certainly discussed up front. It wasn’t like we were ambushed by side effects post treatment however I will say that everything was sort of, a lot to absorb. I don’t think we fully appreciated everything that was being put onto us because we had no frame of reference” (Father of child post bone marrow transplant) Side effects that were remembered being discussed were often those that caused most concern for them or those that were acutely being monitored for or observed through treatment such as alopecia, nausea and vomiting. “My biggest concern was the high risk for getting another cancer. And other things about her fertility” (Mother of child with haematological malignancy) “Yeah we remember we were bombarded with information that we couldn’t absorb at the time. That’s one of the reasons why we still can’t recall some of the side effects but one of the stand out side effects was the fertility and that’s the biggest thing” (Mother of child post bone marrow transplant) Although some participants were able to acknowledge that side effect discussions happened throughout the treatment journey, some ventured further to link the effect of their diagnostic shock in their ability to understand and/or retain information therefore highlighting the importance of repeating these conversations throughout the cancer journey. “I think later down the track, once we were you know we had a routine happening, I had my head around things a little bit more, if maybe that information was given to me then, I would say probably…even like a touch base, 9 months down the track or like 12 months or whatever, once I felt more secure stable and stable in this new life we had to live, I think I would have been able to digest that information and retain that information for longer” (Mother of child with haematological malignancy) Short-term versus long-term concerns In response to the diagnostic shock, participants often reflected on how their focus shifted to the short-term, as an act of self-preservation. With this adjustment in focus, however, also came some appreciation that discussions of long-term side effects are best revisited at a later date when the sense of urgency has subsided. “Why worry about something that might not happen, I think that was our approach to the whole treatment, only worry about the here and now. So I feel like yeah, I tried not to think too far in the future and we’ll deal with that in the future was my approach to everything with the treatment.” (Mother of child post bone marrow transplant) “I guess, the future things like the cardiac and the renal, did play a role but it was like insult to injury really” (Mother of child with a metastatic sarcoma) “We just dealt with the side effects as they occurred. They did say, from memory, you don’t know, he could have different side effects. So I didn’t really know what was going to happen” (Mother of a long-term childhood cancer survivor) “But I guess, you can’t tell someone everything at the start, can you? The ability to take it all in, I suppose they try and tell you what’s most urgent for you to know and maybe heart problems are down the track and because the likelihood is not as high as other things, you’re going to tell people the things that are most likely to happen first. And then drip feed the rest later on.” (Mother of child with haematological malignancy) Powerlessness Associated with the sense of feeling overwhelmed on diagnosis was a sense of powerlessness – the thought of long-term consequences of therapy seemed abstract compared to what they were facing at diagnosis. Furthermore, some participants expressed a sense of a false sense of choice when it came to consenting to therapy that aimed to save their child’s life. With the sense of powerlessness also came a sense of resoluteness. “I know chemotherapy it’s one of the worst things to do to your kids but you have no choice” (Mother of child with a haematological malignancy) “I remember when he started, the doctors would talk to me and they would explain everything and they would ask me if it all made sense and I remember just agreeing to everything but really, I had no idea what’s happening. I know that it’s saving his life and its necessary and it’s almost like out of politeness to ask” (Mother of chid with haematological malignancy) “I mean, I guess with that we, we couldn’t opt in or opt out. It was sort of, the treatment is necessary so we had an understanding about the side effects but regardless we have to go through with the treatment, right?” (Mother of child with haematological malignancy, recently completed therapy) “I remember getting the [information] sheets but also for me, I’d do anything to save his life so you sort of read the side effects and you probably only read the most common ones because they’re the ones you’re looking out for at the time. In the end you’re going to do whatever as long as it saves him” (More of child with haematological malignancy) Basic awareness of heart toxicity There was a mixed awareness of heart toxicity amongst participants. Some participants expressed no recollection of heart toxicity being a potential consequence of therapy, while others remembered it being mentioned as a possibility. For those with some knowledge of this being a potential, there was a broad understanding of how this toxicity could affect them or their child. “She is at higher risk to get the heart disease so yes, I think that the energy level…her body get weakened for the long run.” (Mother of adolescent post bone marrow transplant) “I think it was brushed off that it was rare, so not really. And not really because I can’t really remember what long-term would be. I remember, they did (say) something about how it weakens the muscles around the heart possibly, if it was going to happen” (Mother of child with haematological malignancy) “I knew that it could shorten his life, so it wasn’t, it wasn’t that I didn’t know but I don’t know that I had all of the information that I could have had.” (Mother of child with heart toxicity) Trust Trust in both the treating team and the hospital was a prominent theme. Participants overwhelmingly identified their treating team as their preferred source of information for treatment side effects. This was related to the desire of wanting personalised information that was relevant to their child/themselves and the recognition that other sources of information, either from the internet, information sheets or other families was not always helpful at answering their direct concerns. “I feel like websites and podcasts are more general and because every patient is different, I would rather go to the doctors (if) I have any concerns or questions.” (Sibling of a cancer survivor) Additionally, most participants expressed trust that their care team would be able to direct them to appropriate resources when asked. “Yeah I suppose initially if I wanted to find out more I would probably ask our oncologist at our follow up meeting cos I sort of found that the internet can be scary and misleading when you start randomly googling stuff. So I’d probably start there and I’ve usually found that when I’ve got concerns or queries they’re usually able to direct me to somebody or provide information. I would probably just stick with my care team really” (Mother of chid with a haematological malignancy) “I’d probably speak to her team specifically. I imagine if they don’t have the answers, they’ve always been very good at referring me on” (Mother of child post bone marrow transplant) Communication Trust in the treating team was closely linked to how participants wished to be communicated with. Participants not only reflected on sources of information such as print and media resources including the internet and information sheets but also issues of equity and accessibility to these resources. Sources of information When exploring how participants find information regarding treatment side effects outside their treating teams, many participants reported trust in the hospital website. They observed that community medical professionals would refer back to the hospital clinical resources, indicating the trustworthiness and evidence base of this approach. Furthermore, most participants expressed a preference for seeking more cancer specific information from their hospital website although currently, it does not have any cancer specific resources on their website suitable for patients and their families. This was contrasted with most participants reporting caution when reviewing other internet sources. “I probably would prefer to go through the hospital links or some sort of podcast only because Dr Google can be very incorrect and frightening. So that would probably be my preferred avenue. I feel like it if it’s on the RCH (Royal Children’s Hospital) site or if it’s a professional speaking, the information is probably more accurate and correct.” (Mother of child post bone marrow transplant) Medical literature and independent medicine information books were listed as other trusted resources for health literate participants who felt more comfortable to seek out more complex information. For example, one participant who opted to seek out more specific information reflected on the information sheets: “They were very basic. I’m a nurse myself so they were very basic.” (Mother of child with a sarcoma) “…throughout this whole process, (I was) relying on the Mayo clinic’s website and a lot of websites and a lot of reading of a lot of case studies.” (Father of child post bone marrow transplant) Additionally, when exploring preferred methods of communication, participants overwhelmingly wanted in-person meetings with their treating team as they were a trusted source of information that specifically understood their situation. In the case of the young adult cancer survivor, these meetings allowed them to feel empowered and more in control of their health. “I think I prefer if they told me than my parent cos I just feel that I need to be in control of something. Cos with like, chemo, I lose a lot of control over my health. So by telling me, I understand what’s going to happen and when I’m doing this chemo and when I’m taking this medication, and everything.” ( Young adult cancer survivor) “Yeah I suppose initially if I wanted to find out more I would probably ask our oncologist at our follow up meeting cos I sort of found that the internet can be scary and misleading when you start randomly googling stuff. So I’d probably start there and I’ve usually found that when I’ve got concerns or queries they’re usually able to direct me to somebody or provide information. I would probably just stick with my care team really.” (Mother of child with a haematological malignancy) “If I’m really concerned about I’ll google it but I really do trust my doctor. And I’ve also noticed that googling things makes everything extra stressful.” (Mother of adolescent with haematological malignancy) “…having an interactive information session rather than read something. Maybe some follow up reading would be ok but maybe that initial thing with a doctor to discuss.” (Father of child post bone marrow transplant) Information sheets Participants remembered being given numerous information sheets which detailed treatment side effects. Usage and re-call of these information sheets were variable. Most described keeping the information sheets for future reference although some participants reported never revisiting these sheets, preferring to speak to their treating team when further clarification on treatment side effects was required. “I did find them useful cos they just gave me a better understanding of how it worked a little bit. Yeah and I did refer to them a couple of times.” (Mother of adolescent with haematological malignancy) “It’s all good to say in writing but then how often have I ever referred back to any of the brochures I was given and yeah I think I put them aside and barely read them anyway. I just feel like, I guess it depends on your relationship with your doctor but I just feel like I’ve gotten everything I’ve needed to know from my doctor… I didn’t need to know any more than he told me.” (Mother of child post bone marrow transplant) Survivorship uncertainty Participants generally reported a sense of uncertainty once completing their therapy. This uncertainty not only related to fear of relapse but also changes in dynamic to their treating team as well as a lack of clarity on survivorship plans from frequency of scans to what long term toxicities they needed to be aware of. Uncertainty on preventative health measures was also expressed although participants were keen to know more about this. “Once treatment stopped, it felt like we were dropped as a hospital priority…So it was kind of like you’re on your own. You’ve got this child that can’t walk and who is bald and is going back to school for the first time and then COVID started…So our coordination of care has gone back to us now” (Mother of child with a sarcoma) Unclear survivorship pathway Participants expressed the need for the development of clear survivorship plans that were communicated towards the end of treatment. They also felt that the reiteration of long-term effects towards the end of therapy was also useful so that they better understood what was required for surveillance and why, as they often expressed uncertainty about what tests were required when and for what reason. “It was only recently that we, the distinction between those long-term effects was sort of explained. Because I said does “X” still need to have hearing tests and they said no, the hearing if it was going to have an impact it would have occurred during treatment whereas the cardiac side effects can occur long-term down the tract” (Mother of child with sarcoma recently off treatment) “So we do the echo maybe every 6 months of something now, I guess, maybe. So they do that but I’m not actually sure if that’s part of the trial or if that’s part of just general follow up. I’m not too sure.” (Mother of adolescent with haematological malignancy) Equity of care Some participants highlighted the difficulty in the transition from active treatment to surveillance highlighting the importance of medical advocacy. One participant reflected on how difficult this might be for families from culturally and linguistically diverse (CALD) backgrounds, where their ability to navigate the health system may be even more arduous. “…when we were on the ward there was lots of families that English was their second language and people’s education standards would have been different to mine or my husband’s, so medical advocacy is the big thing we thought that families would probably need.” (Mother of child with a sarcoma) The difficulty in transition was also highlighted for participants who lived rurally, who felt more disconnected from their treating teams. “Cos you go home and, you’re not on your own but you are on your own. Especially being regionally. You can go to your GP but GP’s don’t quite often have the experience so it’s a lot of time if you have queries, you know [you’re] maybe waiting 2 months if you have a question or something. I think definitely, yeah, it would be good to have a package for further discharge planning I guess, that talks about that stuff.” (Mother of adolescent with haematological malignancy recently off treatment) Basic awareness of cardiac side effects Common side effects broadly affecting all patients were remembered such as risk febrile neutropenia and alopecia. Infertility was often identified as the most concerning side effect although not commonly a consequence of therapy. Most participants were able to remember being made aware of the risk of cardiac toxicity and being told this shortly after diagnosis. Also, most participants were broadly aware about the need for monitoring for cardiac toxicity post treatment cessation with the use of echocardiograms but not many were very clear on the frequency of echocardiograms or what symptoms should be monitored for. “One of the review items he needs to do, apart from the full blood test, is the echoes another item, another test. But probably not, I don’t really remember if its yearly.” (Father of childhood cancer survivor of haematological malignancy) “She’s getting regular or semi-regular echocardiographs done. She had one when she was 12 months post-transplant. My understand is also if something of concern arises from one of those exams, she’ll get further testing and investigation into that” (Mother of child post bone marrow transplant) Some participants mentioned being part of the ACOR study as an extra method of surveillance. Participants also described being unaware of the meaning of cardiac toxicity beyond its name. Only four participants reported feeling like they confidently understood what cardiac toxicity was, as well as what symptoms patients could present with because they had direct experience with their child or had a health background. “We understood that it had enlarged the heart and it had also beat kind of floppy. It should be beating heart and fast, instead it was um, not hard and sharp.” (Mother of childhood cancer survivor with cardiac toxicity) “You could see that things were not right, he couldn’t run, he couldn’t walk with me, I’d continually get told to be quiet, ‘you walk too fast mummy, remember I can’t keep up,’ so, continually.” (Mother of child with cardiac toxicity) “…we’re happy to help in research but from our point of view, that’s another check in on her…” (Mother of child with haematological malignancy) Preventative health Most participants reported a significant family history of cardiovascular disease in their extended family which ranged from hypertension, diabetes, ischaemic heart disease, arrhythmias and strokes. Most participants were well versed in what lifestyle factors they thought would decrease the risk of cardiovascular disease in the future for themselves or their child (ie, healthy eating, ideal body weight, exercise). However, none reported ever having discussed this with their child’s treating team nor were they sure about whether this was relevant to their child outside of being general health recommendations. “…exercise, we go for, see the doctors, specialists, to get him running and so on and that’s one way that I know of. Testing like that” (Mother of child post bone marrow transplant) “Obviously health and diet. Obviously, exercise, health and diet. “X”, with regards to the drugs that he’s had, I don’t know how you can combat that other than just the general things that would be doing anyway.” (Mother of child with haematological malignancy)” “I mean there’s also exercise and all those other really things that are really good for the heart. The heart is a muscle in the end but we’re very much at this stage guided by her oncologist and the monthly reviews.” (Father of child post bone marrow transplant)” “Definitely not smoking. Yeah and eating well. I remember getting told by [primary oncologist] just watch the salt intake and don’t get overweight. Keep an eye on his weight.” (Mother of childhood cancer survivor of haematological malignancy) DISCUSSION With the advent of improved cancer therapies there is a growing population of childhood cancer survivors with the potential for long-term sequelae of therapy. Given the degree of burden that cardiovascular disease poses to childhood cancer survivors, the importance of patient and parental/guardian awareness of this risk is important to try and decrease morbidity in this patient group(8, 14-16). Parents and carers have an intimate knowledge of their child and the necessary steps to late effects management and follow up(17). Beyond parents/carers, adolescent and young adult patients require detailed understanding of their health conditions to help in their transition to adulthood (18). Methods of empowering patients and parents/carers to manage their/their child’s health and chronic disease has been shown to an effective health promotion tool(19, 20). Chow et al(8) demonstrated the under-diagnosis and under-treatment of cardiovascular disorders in childhood cancer survivors, and dealt a call-to-action for healthcare professionals to empower parents, carers and adolescents and young adults to gain a better understanding of their own health risks is as a pathway to minimising this long-term morbidity. This study for the first time creates insight into how to better equip parents, carers and adolescent and young adult patients with cardiovascular health information. This single-centre, qualitative study demonstrates that parent/carers had a broad awareness about the risk of cardiac toxicity although the details about what this meant was often lacking particularly when it came to understanding of their own risks. Despite this, participants reported a great deal of trust in their treating teams and reported confidence in being able to seek this information from their care team. This is supported by other studies in similar paediatric oncology settings, whereby patients express trust in their treating teams to direct them to appropriate resources or preferred face to face communication for specific interventions(21, 22). However, it is known that the sole provision of information is not enough to activate patients to engage in their own healthcare and more is required to ensure sustainable engagement(23). It is known that having parent/carers of childhood cancer survivors with unmet informational needs is associated with increased anxiety and stress(22). This study highlighted that the timing of information provision together with the type of information provided needs careful consideration. In keeping with the literature(24), informational needs change over time with participants describing feeling overwhelmed on diagnosis, unable to think about future consequences, until they approached end of treatment where their focus changed. This finding was also highlighted in the study by Mayer et al (2017), where survivors care needs shifted over time from cancer care to primary care where the management of long-term comorbidities and surveillance for late effects became the focus. Although paediatric survivorship in the Australian setting is still largely conducted within the tertiary healthcare setting, ensuring communication with the patient’s primary care physician towards the end of treatment leading into survivorship can assist with the transition from the hospital to the community setting in adulthood(25). Difficulty with transition to survivorship, with a desire for targeted information at this point of care was a universal theme for participants in our study. This has been highlighted in previous studies(22, 26), both locally and abroad, where parent/carers were interviewed on their informational needs where they then expressed desire to have their education individualised to their child’s specific treatment. The creation of individualised survivorship plans is therefore crucial in helping to bridge some of the gaps in knowledge and provide a ledge to further highlight the specific toxicities that parent/carers and the survivor should anticipate. Furthermore, the availability of trusted online resources specific to local paediatric patients and preferably linked with the hospital website was also important to this participant group. Creating accessible online resources via the hospital web platform for patients and their families during this transition period into survivorship may help decrease the stress reported by families at this time-point as well as help address the equity of access to care for rural patients. As highlighted by this study’s findings, more detailed information regarding cardiac toxicity, common signs and symptoms and surveillance guidelines would be valuable in informing patients and their parent/carers about their survivorship expectations. This platform could also provide much needed information on how survivors can minimise their risk of long-term cardiovascular disease, focusing on modifiable risk factors such as diet and exercise. A significant limitation to this study was a lack of adolescent and young adult participation, which may reflect the method of recruitment. More specifically, this study did not capture the patient’s voice directly. A separate study reviewing children’s, adolescents and young adult survivors specific understanding may better reflect their educational needs and help with their health engagement in the future. However, this study captured the parent/carer’s voice, specifically highlighting their experience of the cancer journey and more specifically, their general understanding of both general treatment and cardiac toxicity as well as their preferred methods of toxicity information attainment. Saturation of data was achieved in this varied cohort of parent/carers with children/adolescents either on treatment or survivors. This was the first study on survivorship informational needs to be conducted in the era of cardio-oncology and highlights the needs for a more directed approach. Potential limitations include that this was a single centre study. The themes reflect the care practice of one institution and may not reflect practice across all Australian and New Zealand care sites. Also, the method of recruiting patients already on the ACOR study may have selected participants that already had some level of understanding about cardiac toxicity or an interest in learning more as enrolment in this study does involve some education around cardiovascular toxicities. A different recruitment method may have revealed an alternate degree of knowledge or understanding. Furthermore, all participants were proficient in English. This study did not look at the unique educational needs of patients from CALD backgrounds, although we acknowledge that educational materials targeting this group is equally important. In the future a separate study in the CALD population would be necessary to ensure our service caters holistically for all patients, parents and caregivers we treat. A basic understanding of the risk of cardiac toxicity was demonstrated in our single centre study of parents/carers of childhood cancer survivors or patients nearing the end of therapy. This study suggests a review of current educational practices within our treatment centre, with an emphasis on clear survivorship plans and access to reputable online resources, ideally linked with the hospital. Conflict of interest statement The authors declare they have no conflicts of interest. References 1. Armenian S, Bhatia S. Predicting and Preventing Anthracycline-Related Cardiotoxicity. Am Soc Clin Oncol Educ Book. 2018;38:3-12.2. National Cancer Institute D, Surveillance Research Program. SEER Cancer Statistics Review 1975-2016. 2019.3. Armstrong GT, Ross JD. Late Cardiotoxicity in Aging Adult Survivors of Childhood Cancer. Prog Pediatr Cardiol. 2014;36(1-2):19-26.4. Lipshultz SE, Adams MJ. Cardiotoxicity after childhood cancer: beginning with the end in mind. J Clin Oncol. 2010;28(8):1276-81.5. Lipshultz SE, Adams MJ, Colan SD, Constine LS, Herman EH, Hsu DT, et al. 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Mayer DK, Nasso SF, Earp JA. Defining cancer survivors, their needs, and perspectives on survivorship health care in the USA. Lancet Oncol. 2017;18(1):e11-e8.25. Hobbie WL, Ogle SK, Reilly M, Ginsberg JP, Rourke M, Ratcliffe S, et al. Identifying the educational needs of parents at the completion of their child’s cancer therapy. J Pediatr Oncol Nurs. 2010;27(4):190-5. Legend – Tables and figures TABLE 1 Eligibility criteria Inclusion Criteria Parent of a child treated for cancer between ages 1-18 at time of diagnosis Patient of Children’s Cancer Centre, Royal Children’s Hospital Adolescent young adult treated for cancer when >15 years of age and less than 18 years of age Patients on treatment and less than 5 years off treatment How long ago did you or your child have therapy? What were you or your child being treated for? What side effects of therapy were discussed with you? At what point after diagnosis were treatment side effects discussed? Were these side effects ever discussed again at a later date? Were there any side effects that you were specifically worried about? Where you aware of the risk of heart damage (either short term or long term) when chemotherapy treatment options were being discussed? Are you aware of any heart disease that runs in your family? If there was any heart damage that occurred during or after treatment, how was it explained to you? If there was any heart damage that occurred during or after treatment, were there any treatment options discussed with you? If there was any heart damage that occurred, how did this affect your life or your child’s life? Are there any other comments you wish to make? FIGURE 1 Questionnaire guide Median age at diagnosis (years) 10 (1-18) Type of participant Mothers 17 Fathers 2 Patient 1 Sibling 1 Diagnoses Leukaemia 10 Non-Hodgkin lymphoma 4 Solid tumour 5 *Post BMT 7 Stage of treatment On treatment 4 2 years off treatment 6 Affected by cardiotoxicity 4 TABLE 2 Participant demographics (*BMT – bone marrow transplant) FIGURE 2 Thematic schema Supplementary Material File (image1.emf) Download 53.78 KB Information & Authors Information Version history V1 Version 1 11 January 2025 Copyright This work is licensed under a Non Exclusive No Reuse License. Keywords cardiotoxicity cardiotoxicity after cancer therapy late effects of cancer treatment long term survival pediatric oncology quality of life Authors Affiliations Claudia Toro The Royal Australasian College of Physicians View all articles by this author MIchael Sullivan 0000-0002-8606-5889 The Royal Australasian College of Physicians View all articles by this author Kanika Bhatia The Royal Australasian College of Physicians View all articles by this author David Elliott 0000-0003-1052-7407 Murdoch Children's Research Institute Heart Research Group View all articles by this author A/Prof Rachel Conyers** [email protected] The Royal Australasian College of Physicians View all articles by this author Metrics & Citations Metrics Article Usage 181 views 123 downloads .FvxKWukQNSOunydq8rnd { width: 100px; } Citations Download citation Claudia Toro, MIchael Sullivan, Kanika Bhatia, et al. Parent/carer and patient understanding of cardiac toxicity post chemotherapy – a qualitative study. 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