Decision Aid for Cystic Fibrosis Patients Considering Lung Transplantation

Am J Respir Crit Care Med. 2009 Jul 9. [Epub ahead of print]

Randomized Trial of a Decision Aid for Cystic Fibrosis Patients Considering Lung Transplantation.

Vandemheen KL, O'Connor A, Bell SC, Freitag A, Bye P, Jeanneret A, Berthiaume Y, Brown N, Wilcox P, Ryan G, Brager N, Rabin H, Morrison N, Gibson P, Jackson M, Paterson N, Middleton P, Aaron SD.

The Ottawa Health Research Institute, University of Ottawa, Ottawa, ON, Canada.

RATIONALE: We developed an evidence based decision aid for cystic fibrosis patients with advanced lung disease considering referral for lung transplantation.

OBJECTIVE: To prospectively evaluate whether use of the decision aid increased knowledge about the options, improved realistic expectations, and decreased decisional conflict in adult patients.

METHODS: We performed a single-blind randomized controlled trial involving 149 adult cystic fibrosis patients with an FEV1

MEASUREMENTS AND MAIN RESULTS: The primary end points measured were participants' knowledge, realistic expectations, and decisional conflict evaluated three weeks after randomization. Patients randomized to the decision aid had greater knowledge about their options (P <0.0001) and had more realistic expectations about the benefits and risks of lung transplantation (P <0.0001) compared to those randomized to usual care. The total decisional conflict score was significantly lower in the decision aid group 3 weeks post randomization compared to the usual care group (11.6 vs 20.4; P = 0.0007). Decisions were durable; 88% of patients in the decision aid group and 75% in the usual care group maintained the same choice 12 months after randomization (P = 0.06).

CONCLUSIONS: Use of a decision aid for cystic fibrosis patients considering referral for lung transplantation, in addition to usual education and counseling, improves patient knowledge, realistic expectations, decisional conflict, and patient satisfaction.

Clinical Trial Registry Information: ID# NCT00345449 registered at www.clinicaltrials.gov.