Understanding nutrition challenges and information needs of women undergoing cytoreductive surgery for ovarian cancer: a study protocol for an experience-based co-design methodology
Abstract
Purpose
Cytoreductive surgery (CRS) with or without intraperitoneal hyperthermic chemotherapy (HIPEC) is a complex surgery aimed at removing peritoneal surface malignancy (PSM). PSM is prevalent in ovarian cancer, with up to 85% of patients experiencing non-specific symptoms leading to malnutrition. Studies have shown oncology patients display confusion about nutrition recommendations, although understudied in ovarian cancer. Experience-based co-design is a method of participatory research with key principles including empowerment and collaboration. This project aims to utilise experience-based co-design to understand nutrition challenges and develop nutrition resources for women undergoing CRS ± HIPEC for ovarian cancer. The secondary aim is to evaluate the experience-based co-design process to ensure it aligns with key principles of co-design.
Methods
This multi-centre study utilises experience-based co-design. Using maximum variation sampling, women with lived experience of CRS ± HIPEC for ovarian cancer, along with experienced oncology healthcare professionals will be invited to participate. Participants will be interviewed to identify key nutrition issues and information needs. Using thematic analysis, a patient journey map will be developed and key themes identified. A feedback session will be held for participants to identify priorities for service improvement and patient resource development based on key issues identified by patient journey mapping. These priorities will be addressed in co-design workshops with participants with lived experience and clinicians to develop patient information resources. Resources and experience-based co-design processes will be evaluated at the completion of the workshops.
Conclusions
This study will deliver new insights into the nutrition challenges and information needs identified by people undergoing CRS ± HIPEC for ovarian cancer within a co-design approach.