Development and evaluation of a decision aid for cystic fibrosis patients considering referral for lung transplantation

Abstract

Objectives. (1) Identify the decisional needs of cystic fibrosis patients considering referral for bilateral lung transplantation and develop a decision aid to meet these needs. (2) Evaluate decision aid in a prospective trial. Conceptual framework. Ottawa Decision Support Framework Setting. Canadian and Australian Cystic Fibrosis clinics Methods. Phase 1. Comprehensive literature review, Canadian transplant statistics review and a survey identified the decisional needs and a decision aid was developed. Phase 2. The decision aid was evaluated in a randomized trial involving 149 patients. Results. Phase 1. A wide variation in transplant referral patterns was uncovered; patients not residing in transplant centers were significantly less likely to undergo lung transplants (P< 0.0001). Phase 2. Patients randomized to the decision aid had greater knowledge (P <0.0001) and more realistic expectations (P <0.0001) compared to those randomized to usual care. Decisional conflict score was significantly lower in the decision aid group 3 weeks post randomization (11.6 vs 20.4, P = 0.0007) and the decisions were durable 12 months after randomization (P = 0.06). Conclusion. Transplant referrals vary widely. Patients receiving usual care have unmet decisional needs. The decision aid enhanced informed decision making when combined with usual education and counseling. Future research is warranted to evaluate its implementation in clinical care.