The research priorities of patients attending UK cancer treatment centres: findings from a modified nominal group study

Abstract

Members of the public are increasingly consulted over health care and research priorities. Patient involvement in determining cancer research priorities, however, has remained underdeveloped. This paper presents the findings of the first consultation to be conducted with UK cancer patients concerning research priorities. The study adopted a participatory approach using a collaborative model that sought joint ownership of the study with people affected by cancer. An exploratory, qualitative approach was used. Consultation groups were the main method, combining focus group and nominal group techniques. Seventeen groups were held with a total of 105 patients broadly representative of the UK cancer population. Fifteen areas for research were identified. Top priority areas included the impact cancer has on life, how to live with cancer and related support issues; risk factors and causes of cancer; early detection and prevention. Although biological and treatment related aspects of science were identified as important, patients rated the management of practical, social and emotional issues as a higher priority. There is a mismatch between the research priorities identified by participants and the current UK research portfolio. Current research activity should be broadened to reflect the priorities of people affected by the disease.

Research Priorities in CKD: Report of a National Workshop Conducted in Australia

“…The apparent absence of mortality in research priorities has also been observed in other areas of medicine, including cancer, mental health, and pulmonary disease, for which patients/caregivers emphasize living with and managing the illness rather than dying from it. 5,28,29 We speculate that this may also reflect a perception that mortality may not be a realistic outcome, particularly in dialysis, given that mortality rates remain unacceptably high despite advances in dialysis technologies and pharmacology. [30][31][32] Comparison With Other Research Priority-Setting Initiatives Some of the research priorities generated in this workshop reflect priority areas that are consistent with findings from a recent systematic review of research priority-setting activities in kidney disease.…”

Sickness absence among cancer patients in the pre-diagnostic and the post-diagnostic phases of five common forms of cancer

“…The impact of cancer on different aspects of life including the psychological and social consequences has been identified as top research priority among persons living with cancer [2]. The social consequences of the illness or the disease can also be referred to as sickness.…”

Patient-Centered Outcome Measures in Lung Cancer Trials

“…To facilitate this process, Federal Drug Administration (FDA) and European Organization for Research and Treatment of Cancer (EORTC) guidelines have made inclusion of while research on treatment and toxicity were given a much lower priority [22,23]. PROMs become even more relevant in elderly patients [24,25], as the limited disease-centered evidence for this age group shows inferior results for survival and toxicity compared to younger patients.…”