Determining research priorities for young people with haematological cancer: a value-weighting approach.

INTRODUCTION: Haematological malignancies account for a third of all cancers affecting adolescents and young adults (AYAs). Funding agencies are regularly faced with the dilemma of how to deploy resources in order to provide the greatest possible benefit to this patient group. This study used a value-weighting approach to quantify the stakeholders' perceptions about how resources should be allocated to best improve outcomes for AYA patients and their families.
METHODS: One hundred and fifty seven participants (112 health care providers, researchers and other professionals and 45 patients and carers) were invited to complete a web-based value-weighting questionnaire and indicate how they would allocate 100 units of funding among various research approaches, areas and populations.
RESULTS: Eighty participants (51%) completed the questionnaire. Strategic research was allocated a significantly higher proportion of funding than investigator-driven research. For research areas, clinical medicine and psychosocial research were allocated the highest proportion of funding. Within research populations, AYAs who were newly diagnosed, relapsed or finished treatment were allocated the largest proportion of funds. Psychosocial research which focussed on identifying risk and resilience, developing psychosocial measures, translating research into practice and improving the treatment centre was allocated funding slightly above other items, however the difference was not significant. DISCUSSION: To improve potential congruence between the views of stakeholders and funding agencies, research funding for AYA haematological cancer patients and their families could be targeted towards newly diagnosed patients and those who have relapsed. Research in the areas of clinical medicine and psychosocial care is perceived to be of utmost value.