Priority setting for supportive care research in children and young people with cancer.

INTRODUCTION

Supportive care for children and young people (CYP) with cancer describes services intended to manage the adverse effects of cancer and its treatments. We aimed to identify priorities for future supportive care research according to key stakeholders in order to enable researchers and research funders to target these areas.

METHODS

Nineteen unanswered supportive care research questions were identified from four more general CYP cancer priority setting partnerships. Over a 6-month period, five different priority setting activities were held, involving children and young people, their families, healthcare professionals, researchers, funders and the public. At each event, participants were asked to prioritise the questions in different ways.

RESULTS

Different stakeholder groups identified different priorities. For CYP being able to "live a normal life doing normal things" seemed particularly important. Professionals had a strong focus on infection prevention and management. Similarities were also identified, with management of pain, mental wellbeing, and gastrointestinal side effects (nausea, vomiting, diarrhoea, constipation, and mucositis) scoring highly for all groups.

CONCLUSION

Using a range of different priority setting approaches with key stakeholders facilitated engagement with a wide audience, and resulted in rich information relating to supportive care priorities for CYP with cancer. These priorities should inform the development, funding, and performance of future work.