Research priorities for young people with cancer: a UK priority setting partnership with the James Lind Alliance

Aldiss, Susie; Fern, Lorna A; Phillips, Bob; Callaghan, Amy; Dyker, K.; Gravestock, Helen; Groszmann, Michael; Hamrang, Leila; Hough, Rachael; McGeachy, Demi; Morgan, Sue; Smith, Sam; Upadhyaya, Sheela; Veitch, Helen; Veitch, Lara; Williamson, Max; Whelan, Jeremy; Gibson, Faith

doi:10.1136/bmjopen-2018-028119

Cited by 55 publications

(79 citation statements)

References 18 publications

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“…This may have influenced which questions made it to the Top 10. This is a typical tendency in survey research and was also observed in other PSPs [ 20 ]. Future PSPs may want to come up with and employ alternative strategies to ensure equal representation of all members of society.…”

Section: Discussionsupporting

confidence: 76%

Dutch patients, caregivers and healthcare professionals generate first nationwide research agenda for juvenile idiopathic arthritis

et al. 2021

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Background Involving the end-users of scientific research (patients, carers and clinicians) in setting research priorities is important to formulate research questions that truly make a difference and are in tune with the needs of patients. We therefore aimed to generate a national research agenda for Juvenile Idiopathic Arthritis (JIA) together with patients, their caregivers and healthcare professionals through conducting a nationwide survey among these stakeholders. Methods The James Lind Alliance method was used, tailored with additional focus groups held to involve younger patients. First, research questions were gathered through an online and hardcopy survey. The received questions that were in scope were summarised and a literature search was performed to verify that questions were unanswered. Questions were ranked in the interim survey, and the final top 10 was chosen during a prioritisation workshop. Results Two hundred and seventy-eight respondents submitted 604 questions, of which 519 were in scope. Of these 604 questions, 81 were generated in the focus groups with younger children. The questions were summarised into 53 summary questions. An evidence checking process verified that all questions were unanswered. A total of 303 respondents prioritised the questions in the interim survey. Focus groups with children generated a top 5 of their most important questions. Combining this top 5 with the top 10s of patients, carers, and clinicians led to a top 21. Out of these, the top 10 research priorities were chosen during a final workshop. Research into pain and fatigue, personalised treatment strategies and aetiology were ranked high in the Top 10. Conclusions Through this study, the top 10 research priorities for JIA of patients, their caregivers and clinicians were identified to inform researchers and research funders of the research topics that matter most to them. The top priority involves the treatment and mechanisms behind persisting pain and fatigue when the disease is in remission.

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Section: Discussionsupporting

confidence: 76%

Dutch patients, caregivers and healthcare professionals generate first nationwide research agenda for juvenile idiopathic arthritis

et al. 2021

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“…This may have in uenced which questions made it to the Top 10. This is a typical tendency in survey research and was also observed in other PSPs (20). Future PSPs may want to come up with and employ alternative strategies to ensure equal representation of all members of society.…”

Section: Discussionmentioning

confidence: 69%

Dutch patients, caregivers and healthcare professionals generate first nationwide research agenda for juvenile idiopathic arthritis

Verwoerd

Armbrust

Cowan

et al. 2020

Preprint

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Background: Involving the end-users of scientific research (patients, carers and clinicians) in setting research priorities is important to formulate research questions that truly make a difference and are in tune with the needs of patients. We therefore aimed to generate a national research agenda for Juvenile Idiopathic Arthritis (JIA) together with patients, their caregivers and healthcare professionals through conducting a nationwide survey among these stakeholders.Methods: The James Lind Alliance method was used, tailored with additional focus groups held to involve younger patients. First, research questions were gathered through an online and hardcopy survey. The received questions that were in scope were summarised and a literature search was performed to verify that questions were unanswered. Questions were ranked in the interim survey, and the final top 10 was chosen during a prioritisation workshop.Results: Two hundred and seventy-eight respondents submitted 604 questions, of which 519 were in scope. Of these 604 questions, 81 were generated in the focus groups with younger children. The questions were summarised into 53 summary questions. An evidence checking process verified that all questions were unanswered. A total of 303 respondents prioritised the questions in the interim survey. Focus groups with children generated a top 5 of their most important questions. Combining this top 5 with the top 10 s of patients, carers, and clinicians led to a top 21. Out of these, the top 10 research priorities were chosen during a final workshop. Research into pain and fatigue, personalised treatment strategies and aetiology were ranked high in the Top 10.Conclusions: Through this study, the top 10 research priorities for JIA of patients, their caregivers and clinicians were identified to inform researchers and research funders of the research topics that matter most to them. The top priority involves the treatment and mechanisms behind persisting pain and fatigue when the disease is in remission.

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“…Consequently, different individual-level or environmental-level factors will contribute to one’s psychological adaptation and recovery. As psychosocial well-being remains an unmet need and among the most important topics for AYAs with cancer, 26 we have to develop a better understanding of how different subgroups of patients, though afflicted with the same diagnosis, respond differently based on their individual biopsychosocial profile.…”

Section: Discussionmentioning

confidence: 99%

“…In the recent years, national as well as international initiatives have recognised the importance of psychosocial impact of cancer diagnosis in youth and are calling for research initiatives that investigate psychopathology and promote psychological well-being in young patients. 26 27 However, the field lacks a common definition of resilience 28 and still relies on latent models of assessing mental health (ie, having depression leads to fatigue and/or loss of interest). 29 …”

Section: Introductionmentioning

confidence: 99%

Psychological adaptation and recovery in youth with sarcoma: a qualitative study with practical implications for clinical care and research

et al. 2020

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ObjectivesThis study explored factors that play a role in psychological adaptation and recovery of young people with sarcoma.DesignQualitative study.SettingNational Health Service hospitals in the UK.MethodsUsing purposive sampling, participants were recruited for semistructured interviews over the telephone or face to face in order to answer questions about how cancer impacted various domains of their life. Data were analysed using a framework approach.ResultsThirty participants, aged 15–39 years with primary sarcoma diagnosis provided in-depth accounts of their experience. Emerging themes from the interviews were grouped into two overarching themes that relate to one’s adaptation to illness: individual level and environmental level. The qualitative nature of our study sheds light on meaningful connections between various factors and their role in one’s psychological adaptation to sarcoma. We devised a visual matrix to illustrate how risk and protective factors in adaptation vary between and within individuals.ConclusionsThis study demonstrates that young people with sarcoma report an array of both positive and negative factors related to their illness experience. The route to recovery is a multifactorial process and a one-size-fits-all approach to psychosocial care proves inadequate. We propose that moving beyond the latent constructs of resilience and psychopathology towards a dynamic model of psychological adaptation and recovery in this population can result in optimisation of care. We offer some recommendations for professionals working with young people with sarcoma in clinic and research.

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Research priorities for young people with cancer: a UK priority setting partnership with the James Lind Alliance

Cited by 55 publications

References 18 publications

Dutch patients, caregivers and healthcare professionals generate first nationwide research agenda for juvenile idiopathic arthritis

Dutch patients, caregivers and healthcare professionals generate first nationwide research agenda for juvenile idiopathic arthritis

Dutch patients, caregivers and healthcare professionals generate first nationwide research agenda for juvenile idiopathic arthritis

Psychological adaptation and recovery in youth with sarcoma: a qualitative study with practical implications for clinical care and research

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