Dataset Information

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

ABSTRACT:

Objectives

To conduct a UK-wide survey of young people who have experienced cancer, carers and professionals, to identify and prioritise research questions to inform decisions of research funders and support the case for research with this unique cancer population.

Design

James Lind Alliance Priority Setting Partnership.

Setting

UK health service and community.

Methods

A steering group oversaw the initiative and partner organisations were recruited. Unanswered questions were collected in an online survey. Evidence searching verified uncertainties. An interim survey was used to rank questions prior to a final prioritisation workshop.

Participants

Young people aged 13-24 years with a current or previous cancer diagnosis, their families, friends, partners and professionals who work with this population.

Results

Two hundred and ninety-two respondents submitted 855 potential questions. Following a refining process and removal of 'out of scope' questions, 208 unique questions remained. Systematic evidence checking identified seven answered questions and 16 were the subject of ongoing studies. The interim survey was completed by 174 participants. The top 30 questions were prioritised at a workshop attended by 25 young people, parents and multidisciplinary professionals. The top three priorities are: (1) What psychological support package improves psychological well-being, social functioning and mental health during and after treatment? (2) What interventions, including self-care, can reduce or reverse adverse short-term and long-term effects of cancer treatment? (3) What are the best strategies to improve access to clinical trials? The remaining questions reflect the complete cancer pathway: new therapies, life after cancer, support, education/employment, relapse and end-of-life care.

Conclusions

We have identified shared research priorities for young people with cancer using a rigorous, person-centred approach involving stakeholders typically not involved in setting the research agenda. The breadth of priorities suggest future research should focus on holistic and psychosocial care delivery as well as traditional drug/biology research.

SUBMITTER: Aldiss S

PROVIDER: S-EPMC6688702 | biostudies-literature | 2019 Aug

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

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

Aldiss Susie S Fern Lorna A LA Phillips Robert S RS Callaghan Amy A Dyker Karen K Gravestock Helen H Groszmann Michael M Hamrang Leila L Hough Rachael R McGeachy Demi D Morgan Sue S Smith Sam S Upadhyaya Sheela S Veitch Helen H Veitch Lara L Williamson Max M Whelan Jeremy S JS Gibson Faith F

BMJ open 20190805 8

<h4>Objectives</h4>To conduct a UK-wide survey of young people who have experienced cancer, carers and professionals, to identify and prioritise research questions to inform decisions of research funders and support the case for research with this unique cancer population.<h4>Design</h4>James Lind Alliance Priority Setting Partnership.<h4>Setting</h4>UK health service and community.<h4>Methods</h4>A steering group oversaw the initiative and partner organisations were recruited. Unanswered questi ...[more]

PMID: 31383701

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Project description:ObjectiveTo determine research priorities for the management of complex fractures, which represent the shared priorities of patients, their families, carers and healthcare professionals.Design/settingA national (UK) research priority setting partnership.ParticipantsPeople who have experienced a complex fracture, their carers and relatives, and relevant healthcare professionals and clinical academics involved in treating patients with complex fractures. The scope includes open fractures, fractures to joints broken into multiple pieces, multiple concomitant fractures and fractures involving the pelvis and acetabulum.MethodsA multiphase priority setting exercise was conducted in partnership with the James Lind Alliance over 21 months (October 2019 to June 2021). A national survey asked respondents to submit their research uncertainties which were then combined into several indicative questions. The existing evidence was searched to ensure that the questions had not already been sufficiently answered. A second national survey asked respondents to prioritise the research questions. A final shortlist of 18 questions was taken to a stakeholder workshop, where a consensus was reached on the top 10 priorities.ResultsA total of 532 uncertainties, submitted by 158 respondents (including 33 patients/carers) were received during the initial survey. These were refined into 58 unique indicative questions, of which all 58 were judged to be true uncertainties after review of the existing evidence. 136 people (including 56 patients/carers) responded to the interim prioritisation survey and 18 questions were taken to a final consensus workshop between patients, carers and healthcare professionals. At the final workshop, a consensus was reached for the ranking of the top 10 questions.ConclusionsThe top 10 research priorities for complex fracture include questions regarding rehabilitation, complications, psychological support and return to life-roles. These shared priorities will now be used to guide funders and teams wishing to research complex fractures over the coming decade.

Dataset Information

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

Objectives

Design

Setting

Methods

Participants

Results

Conclusions

Publications

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

Similar Datasets

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