Patient and carer experiences of nutrition in cancer care: a mixed-methods study.

ABSTRACT

PURPOSE: Evidence-based guidelines exist to guide health professionals and services about cancer nutrition care; however, the views of cancer patients and carers are not well understood. This study aimed to understand the experience and needs of cancer patients and carers regarding nutrition care across the care continuum. METHODS: Using a mixed-methods approach, cancer patients and carers completed a cross-sectional online survey and focus groups. Participants were recruited through health services and cancer organisation consumer networks via email distribution lists, e-newsletters, and social media. Focus groups were audio-recorded, transcribed, and analysed using content analysis. RESULTS: Of 165 survey respondents, only 51% (n=84) reported they talked to a health professional about their nutrition care at any time-point, and only 32% with a dietitian. The majority (84%) of patients and carers felt nutrition was important at one or more time-points in their cancer path, indicating during and after cancer treatment the most important. However, perceived support from health professionals for nutrition care was deemed low at all time-points. Five focus groups were held (n=20; 16 patients, 2 carers, 2 both patients/carers) and five themes emerged nutrition information, experiences and need; control over diet and nutrition; importance and value of nutrition; access to support; what optimal nutrition care looks like. CONCLUSION: Patients and carers felt nutrition was important during their cancer path, but perceived support from health professionals for nutrition care was low. This study has highlighted patient and carer nutrition experiences that will inform development of a co-designed optimal cancer nutrition care pathway.