Research priorities for children's cancer: a James Lind Alliance Priority Setting Partnership in the UK
Author
Aldiss, SusieHollis, Rachel
Phillips, Bob
Ball-Gamble, Ashley
Brownsdon, Alex
Chisholm, Julia
Crowther, Scott
Dommett, Rachel
Gower, Jonathan
Hall, Nigel J
Hartley, Helen
Hatton, Jenni
Henry, Louise
Langton, Loveday
Maddock, Kirsty
Malik, Sonia
McEvoy, Keeley
Morgan, Jessica Elizabeth
Morris, Helen
Parke, Simon
Picton, Sue
Reed-Berendt, Rosa
Saunders, Dan
Stewart, Andy
Tarplee-Morris, Wendy
Walsh, Amy
Watkins, Anna
Weller, David
Gibson, Faith
Publication date
2023-12-20
Metadata
Show full item recordAbstract
Objectives: To engage children who have experienced cancer, childhood cancer survivors, their families and professionals to systematically identify and prioritise research questions about childhood cancer to inform the future research agenda. Design: James Lind Alliance Priority Setting Partnership. Setting: UK health service and community. Methods: A steering group oversaw the initiative. Potential research questions were collected in an online survey, then checked to ensure they were unanswered. Shortlisting via a second online survey identified the highest priority questions. A parallel process with children was undertaken. A final consensus workshop was held to determine the Top 10 priorities. Participants: Children and survivors of childhood cancer, diagnosed before age 16, their families, friends and professionals who work with this population. Results: Four hundred and eighty-eight people submitted 1299 potential questions. These were refined into 108 unique questions; 4 were already answered and 3 were under active study, therefore, removed. Three hundred and twenty-seven respondents completed the shortlisting survey. Seventy-one children submitted questions in the children's surveys, eight children attended a workshop to prioritise these questions. The Top 5 questions from children were taken to the final workshop where 23 questions in total were discussed by 25 participants (young adults, carers and professionals). The top priority was 'can we find effective and kinder (less burdensome, more tolerable, with fewer short and long-term effects) treatments for children with cancer, including relapsed cancer?' Conclusions: We have identified research priorities for children's cancer from the perspectives of children, survivors, their families and the professionals who care for them. Questions reflect the breadth of the cancer experience, including diagnosis, relapse, hospital experience, support during/after treatment and the long-term impact of cancer. These should inform funding of future research as they are the questions that matter most to the people who could benefit from research.Citation
Aldiss S, Hollis R, Phillips B, Ball-Gamble A, Brownsdon A, Chisholm J, Crowther S, Dommett R, Gower J, Hall NJ, Hartley H, Hatton J, Henry L, Langton L, Maddock K, Malik S, McEvoy K, Morgan JE, Morris H, Parke S, Picton S, Reed-Berendt R, Saunders D, Stewart A, Tarplee-Morris W, Walsh A, Watkins A, Weller D, Gibson F. Research priorities for children's cancer: a James Lind Alliance Priority Setting Partnership in the UK. BMJ Open. 2023 Dec 20;13(12):e077387. doi: 10.1136/bmjopen-2023-077387.Type
ArticleAdditional Links
https://bmjopen.bmj.com/content/bmjopen/13/12/e077387.full.pdfPMID
38128939Journal
BMJ OpenPublisher
BMJ Publishing Groupae974a485f413a2113503eed53cd6c53
10.1136/bmjopen-2023-077387