Abstract
ObjectiveWe conducted a UK‐wide survey to identify the top 10 research questions for young people's cancer. We conducted secondary analysis of questions submitted, which were ‘out‐of‐scope’ of the original survey aim. We sought to disseminate these questions, to inform practice, policy and the development of potential interventions to support young people with cancer.DesignJames Lind Alliance Priority Setting Partnership.ParticipantsYoung people aged 13‐24 with a current/previous cancer diagnosis, their families/friends/partners and professionals who work with this population.MethodsEight hundred and fifty‐five potential research questions were submitted, and 326 were classified as ‘out‐of‐scope’. These questions, along with 49 ‘free‐text’ comments, were analysed using thematic analysis.ResultsThe 375 out‐of‐scope questions and comments were submitted by: 68 young people, 81 family members/partners/friends and 42 professionals. Ten overarching themes were identified: diagnostic experience; communication; coordination of care; information needs and lack of information; service provision; long‐term effects and aftercare support; family support; financial impact; end‐of life care; and research methods and current research.ConclusionsThe need to tailor services, information and communication is a striking thread evidenced across the ‘out‐of‐scope’ questions. Gaps in information highlight implications for practice in revisiting information needs throughout the cancer trajectory. We must advocate for specialist care for young people and promote the research priorities and these findings to funding bodies, charities, young people and health and social care policymakers, in order to generate an evidence base to inform effective interventions across the cancer trajectory and improve outcomes.Patient/public contributionsPatients and carers were equal stakeholders throughout.
Highlights
Teenagers and young adults (TYA) with cancer require specialist care to meet their unique physical, psychological and social needs.[1]
In the United Kingdom (UK), care is delivered in National Health Service (NHS) age-appropriate specialist TYA cancer centres and ‘designated’ hospitals, additional resource is provided by the third sector
For TYA services to deliver patient-centred care meeting the needs of this distinct cancer population, the evidence base provided by research must reflect service users' needs and concerns.[3]
Summary
Teenagers and young adults (TYA) with cancer require specialist care to meet their unique physical, psychological and social needs.[1] They present with a spectrum of cancer types requiring complex care involving many stakeholders.[2] In the United Kingdom (UK), care is delivered in National Health Service (NHS) age-appropriate specialist TYA cancer centres and ‘designated’ hospitals, additional resource is provided by the third (charitable) sector. For TYA services to deliver patient-centred care meeting the needs of this distinct cancer population, the evidence base provided by research must reflect service users' needs and concerns.[3] It is increasingly recognized that research priorities between clinicians, researchers and patient/. Each PSP will receive submissions that are not questions, but are more akin to personal statements, and where a research question is not readily identifiable or not within remit of that particular PSP, these are classified as ‘out-of-scope’ questions.[4]
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