Reporting the whole story: Analysis of the ‘out‐of‐scope’ questions from the James Lind Alliance Teenage and Young Adult Cancer Priority Setting Partnership Survey

Abstract

Objective We 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. Design James Lind Alliance Priority Setting Partnership. Participants Young people aged 13‐24 with a current/previous cancer diagnosis, their families/friends/partners and professionals who work with this population. Methods Eight 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. Results The 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. Conclusions The 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 contributions Patients and carers were equal stakeholders throughout.

Adapting a codesign process with young people to prioritize outcomes for a systematic review of interventions to prevent self‐harm and suicide

“…These favour broad statements which may lose the distinctiveness or subtlety of issues 25 . It has been found with young people, for example, that submissions to priority‐setting, which are deemed ‘out of scope,’ may, in fact, contain important themes regarding what matters to young people themselves 26 . Alternatives include more dialogue‐based approaches 27 or participatory codesign methods 28 .…”

“… 25 It has been found with young people, for example, that submissions to priority‐setting, which are deemed ‘out of scope,’ may, in fact, contain important themes regarding what matters to young people themselves. 26 Alternatives include more dialogue‐based approaches 27 or participatory codesign methods. 28 Facilitated discussions with interactive activities may be particularly suitable for working with young people.…”

Patient and public involvement in cancer research: A scoping review

“…Out of the 66 PPI articles, 16 originated in the United Kingdom, 31–46 14 in the United States, 47–60 12 in Australia, 61–72 7 in Canada, 73–79 2 in China, 80,81 and 1 in Japan 82 . European countries included: Switzerland ( n = 2), 83,84 The Netherlands ( n = 2), 85,86 and Spain ( n = 1), 87 as well as two studies comprising several countries ( n = 2) 88,89 .…”

“…Most of the studies (17/66) did not specify the type of cancer of patients involved or included multiple types (9/66). Regarding the PPI target population, 4/66 included adolescents or young adults (AYAs) 41,44,68,94 and the rest consisted in adult population, of which 5/62 studies included parents of pediatric patients, 40,53,79,95,96 2/62 older adults, 32,76 and 1 study included patients with intellectual disability 90 (Table S3). People previously diagnosed with cancer not currently undergoing treatment, including survivors, were the most frequent type of PPI participants (39/66), followed by relatives or informal caregivers (36/66).…”

Variability and Complexity of Knee Neuromuscular Control during an Isometric Task in Uninjured Physically Active Adults: A Secondary Analysis Exploring Right/Left and Dominant/Nondominant Asymmetry

“…The supplementary (secondary) analysis of primary data fulfills a valuable role in scientific inquiry and is encouraged to facilitate research economy, answer interdisciplinary research questions, and mitigate research waste [29,30]. Secondary analysis can be undertaken at any stage of a research project and is further encouraged where primary data from relatively "small-scale experiments" is used to build a foundation for planning future larger-scale original studies and plot a direction for new basic and applied research questions [31].…”