278 Developing patient resources for lung transplantation

Abstract

Aims: With advances in medical treatment, people with CF are living longer. However, CF remains a life-limiting condition with lung transplantation as a treatment option as health declines. To improve care of patients, patient resources were developed to improve patient understanding of the transplant process and optimise pre-listing counselling. Methods: Three patient information resources were developed. 1. Transplant information leaflet: containing clear basic information about the transplant process itself and how this decision is made, and a discussion of the potential psychological dilemmas that people face and support available. 2. Post-transplant patients and CF MDT team members developed a document based on patients’ experiences on the transplant ward, highlighting differences between their regular ward in the CF Centre and the ward at the transplant centre. This is particularly important for patients with CF who are ‘expert patients’ and are often very involved in their own treatments and treatment choices. 3. ‘This is me’ leaflet which patients complete and take to the transplant centre. This contains key information, including contact details and non-medical information, which will help the people caring for them at transplant. Conclusion: These resources aim to ensure that all CF patients are informed about the lung transplantation process and that those undergoing assessment and listing are prepared for differences in their care in the transplant clinic/ward, making the process less distressing for patients who are already in a very stressful situation.