"I had your number on speed dial:" A qualitative study of patient experiences of dietetics care and managing nutrition during curative treatment of upper gastrointestinal cancer.

Abstract

Limited research exists on the implementation of nutrition care pathways to provide dietetics care in upper gastrointestinal cancer surgery, particularly from the patient perspective. This study aimed to understand patients' experiences and perceptions of dietetics care provided via a nutrition care pathway, both before and after curative intent surgery. The secondary aim was to explore patients' experiences of self-managing nutrition throughout their treatment trajectory and the impact on quality of life. This was a single-centre, prospective phenomenological study. Patients undergoing curative neoadjuvant therapy and surgery for oesophageal or gastric cancer were invited to participate in two semi-structured interviews: 1) in the period between completion of neoadjuvant therapy and surgery; 2) at 3 months post-surgical discharge. Questions pertaining to experiences and perspectives regarding dietetics intervention, nutritional status, symptoms, and quality of life were asked as per the interview schedule. Data were analysed and coded thematically using a phenomenological approach. Thirteen participants were included (12 with oesophageal cancer and one with gastric cancer; mean age 63 years, 62% male). Four main themes were identified: 1) lived experiences of nutritional changes during treatment and recovery; 2) perceptions of nutrition and role of the dietitian; 3) feeding tubes and oral supplements as "the necessary evil"; and 4) impact of treatment and nutritional changes on daily life. Participants experienced significant nutritional challenges throughout the treatment trajectory, greatly impacting on daily life and psychosocial wellbeing. Participants found the dietetics care provided under the nutrition care pathway to be highly beneficial and acceptable, and dietitians were deemed an essential resource. The findings suggest that intensive, individualised nutrition care pathways, including oral and enteral supplementation, would be beneficial in similar clinical contexts, with peer support identified as an area for further resourcing and research.