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

¹ Ottawa Health Research Institute, University of Ottawa, Ottawa, Ontario, Canada; ² Prince Charles Hospital, Brisbane, Queensland, Australia; ³ McMaster University, Hamilton, Ontario, Canada; ⁴ Royal Prince Alfred Hospital, Sydney, New South Wales, Australia; ⁵ Centre Hospitalier de l'Université de Montréal, Montreal, Quebec, Canada; ⁶ University of Alberta, Edmonton, Alberta, Canada; ⁷ University of British Columbia, Vancouver, British Columbia, Canada; ⁸ Sir Charles Gairdner Hospital, Perth, Western Australia, Australia; ⁹ University of Calgary, Calgary, Alberta, Canada; ¹⁰ Capital Health District, Halifax, Nova Scotia, Canada; ¹¹ John Hunter Hospital, Newcastle, New South Wales, Australia; ¹² Grand River Hospital, Kitchener, Ontario, Canada; ¹³ University of Western Ontario, London, Ontario, Canada; and ¹⁴ Westmead Hospital, Westmead, New South Wales, Australia

Correspondence and requests for reprints should be addressed to Shawn D. Aaron, M.D., Ottawa Hospital, General Campus, 501 Smyth Road, Ottawa, ON, K1H 8L6 Canada. E-mail: saaron{at}ohri.ca

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

Objectives: 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 patients with cystic fibrosis with an FEV₁ 40% predicted from 14 Canadian and Australian centers. All participants received an education and counseling session from their cystic fibrosis team and were then randomized to receive the decision aid or usual care. The decision aid is available online at http://decisionaid.ohri.ca/decaids.html.

Measurements and Main Results: The primary end points measured were participants' knowledge, realistic expectations, and decisional conflict evaluated 3 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 with those randomized to usual care. The total decisional conflict score was significantly lower in the decision aid group 3 weeks postrandomization compared with 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 patients with cystic fibrosis considering referral for lung transplantation, in addition to usual education and counseling, improves patient knowledge, realistic expectations, decisional conflict, and patient satisfaction.

Clinical trial registered with www.clinicaltrials.gov (NCT00345449).

Key Words: cystic fibrosis • lung transplantation • severe lung disease • computerized decision-making tools • patient education

AT A GLANCE COMMENTARY Scientific Knowledge on the Subject Previous studies of patients with cystic fibrosis (CF) and providers have indicated that patients with CF experience considerable anxiety and uncertainty related to making decisions concerning whether to be referred for lung transplantation. A decision aid may help in this setting, but such an intervention has not previously been well explored. What This Study Adds to the Field This randomized, controlled trial demonstrated that use of a decision aid improved patient knowledge, realistic expectations, decisional conflict, and patient satisfaction in adults with CF considering lung transplantation.