Development of a Decision Aid for Adult Cystic Fibrosis Patients considering Referral for Lung Transplantation

Abstract

Most adults with cystic fibrosis are eventually required to make a decision about referral for lung transplantation. To identify the decisional needs of these patients and to develop a decision aid to address these needs. A comprehensive review of the literature, a review of Canadian transplant statistics from 2002 to 2006, and a self-assessment survey of patients who had already made a decision about referral were performed to identify the decisional needs of patients. A decision aid was then developed and evaluated by an expert panel of health care professionals and patients. Transplant referral patterns vary widely among Canadian cystic fibrosis clinics. Canadian patients with cystic fibrosis who were not residing in transplant centers between 2002 and 2006 were significantly less likely to undergo lung transplants (P < .001). Decisional needs identified by patients included wanting more information on (1) relocation to the transplant center, (2) the benefits and risks of surgery, and (3) how to cope with anxiety and depression when making the decision. In response to these identified needs, a decision aid for lung transplantation was developed. A panel of health care professionals and patients reviewed the decision aid and agreed that the content was appropriate, easy to understand, and unbiased. The decisional needs of patients with cystic fibrosis who are considering lung transplantation are not being addressed in Canadian cystic fibrosis clinics, especially in clinics outside of transplant centers. An evidence-based decision aid could serve as a useful tool to help address these needs.