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Research priorities for young people with cancer: a UK priority setting partnership with the James Lind Alliance
  1. Susie Aldiss1,
  2. Lorna A Fern2,3,
  3. Robert S Phillips4,
  4. Amy Callaghan5,
  5. Karen Dyker6,
  6. Helen Gravestock7,
  7. Michael Groszmann8,
  8. Leila Hamrang5,
  9. Rachael Hough9,
  10. Demi McGeachy5,
  11. Sue Morgan10,
  12. Sam Smith11,
  13. Sheela Upadhyaya12,
  14. Helen Veitch11,
  15. Lara Veitch3,5,
  16. Max Williamson3,5,
  17. Jeremy S Whelan2,
  18. Faith Gibson1,13
  1. 1 School of Health Sciences, University of Surrey, Guildford, UK
  2. 2 Oncology Division, University College London Hospitals NHS Foundation Trust, London, UK
  3. 3 Teenage, Young Adult and Germ Cell Clinical Studies Group, National Cancer Research Institute, London, UK
  4. 4 Centre for Reviews and Dissemination, University of York, York, U.K.
  5. 5 Teenage and Young Adult Cancer Priority Setting Partnership steering group, London, UK
  6. 6 Oncology, Level 4, Bexley Wing, St James' University Hospital, Leeds, UK
  7. 7 Policy and Campaigning, CLIC Sargent, London, UK
  8. 8 Paediatric & Adolescent Division, University College London Hospitals NHS Foundation Trust, London, UK
  9. 9 Children and Young Peoples Cancer Service, University College London Hospitals NHS Foundation Trust, London, UK
  10. 10 Teenage and Young Adult Cancer Service, Leeds General Infirmary, Leeds, UK
  11. 11 Service Delivery, Teenage Cancer Trust, London, UK
  12. 12 The James Lind Alliance, National Institute for Health Research Evaluation, Southampton, UK
  13. 13 Centre for Outcomes and Experience Research in Children’s Health, Illness and Disability (ORCHID), Great Ormond Street Hospital For Children NHS Foundation Trust, London, UK
  1. Correspondence to Dr Lorna A Fern; lorna.fern{at}nhs.net

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.

  • teenage
  • cancer
  • young aduly
  • adolescent
  • james lind alliance
  • adolescent, research priorities

This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/.

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Footnotes

  • Contributors All authors were part of the Teenage and Young Adult Cancer Priority Setting Partnership steering group or coordinating team and made substantive contributions to the conduct of the study, overseeing all aspects of the work. All authors, SA, LF, RP, AC, KD, HG, MG, LH, RH, DM, SM, SS, SU, HV, LV, MW, JSW and FG contributed to protocol design, survey refining, data cleaning and refining questions submitted in the initial survey. The project was managed by LF, SA, FG and SU. Specific contributions included: survey design (SA), coding the survey submissions (FG, LF, SA), searching and checking uncertainties (SA, LF, RP), managing data entry (SA, LF). All authors reviewed and approved the final version of this paper.

  • Funding This work was supported by: Teenage Cancer Trust, CLIC Sargent and Children with Cancer UK. LF is funded by Teenage Cancer Trust.

  • Competing interests None declared.

  • Provenance and peer review Not commissioned; externally peer reviewed.

  • Data sharing statement Further data regarding the source of original submissions to the survey are available from: http://www.jla.nihr.ac.uk/priority-setting-partnerships/teenage-and-young-adult-cancer/

  • Patient consent for publication Not required.

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