Chief Investigator - Dr Sally Wheelwright
Website Designer - Shirley May
Clinical Lead - Dr Amélie Harle
Funder: Gilead
Funder: Sussex Cancer Fund
Sponsor: Sussex University
CHANGES
Introduction
Cancer cachexia is a multifactorial syndrome found in up to 80% of advanced cancer patients. Abnormal metabolism and (usually) reduced food intake result in loss of skeletal muscle, with or without fat loss. The change in eating habits and unintentional weight loss experienced by people with cancer cachexia results in a loss of physical strength along with changes in appearance, the sense of self and relationships. Caregivers will often take responsibility for the provision of food, and this is challenging as they may be uncertain about what food to offer. In addition, patient-caregiver conflict is common as patients with small and changing appetites may reject the food provided, despite the best efforts of the caregiver.
Previously, a small group intervention (a workshop) was developed to help patients and carers cope. Although acceptable to patients and caregivers, large scale roll out of the intervention was not feasible.
Aim
To produce and evaluate a psychoeducational digital intervention (website), based on the previously developed workshop, to provide support and education for patients with cancer cachexia and their families/informal caregivers.
Method
The website will be co-produced with an expert panel of stakeholders, including health care professionals (HCPs), patients and carers. Website content will include a short film, an explainer animation, interactive elements, tips and information.
There will be two phases of user testing. Phase 1: patients and caregivers will be asked to comment aloud whilst working through the website ("think aloud" interviews). All suggested changes will be reviewed, and changes made when appropriate, until no new modifications are suggested (saturation). Phase 2: a new set of patients and carers will be invited to use the website and complete some evaluation measures.
The website will then be made publicly available. Health care professionals will be asked to signpost the website to patients and caregivers, and it will be advertised through social media and third sector organisations. Users will be asked to indicate where they heard about the website and provide some basic feedback. A pre- and post-intervention knowledge test is included as part of the intevention. Analytics will be used to record which parts of the intervention users engage with, and for how long.
Impact
The website will benefit both patients and carers by explaining why people with cancer lose weight, providing information about eating well with cancer and unintentional weight loss, and will support patients and caregivers to manage conflict and negative emotions. The finalised website will be freely available and disseminated widely via HCPs and cancer support organisations to patients and caregivers.
Current Stage:
Active