Randomized trial of a decision aid for patients with cystic fibrosis considering lung transplantation

Barraclough, Katherine A., O'Connor, Annette, Bell, Scott C., Freitag, Andreas, Bye, Peter, Jeanneret, Alphonse, Berthiaume, Yves, Brown, Neil, Wilcox, Pearce, Ryan, Gerard, Brager, Nancy, Rabin, Harvey, Morrison, Nancy, Gibson, Peter, Jackson, Mary, Paterson, Nigel, Middleton, Peter and Aaron, Shawn D. (2009) Randomized trial of a decision aid for patients with cystic fibrosis considering lung transplantation. American Journal of Respiratory and Critical Care Medicine, 180 8: 761-768. doi:10.1164/rccm.200903-0421OC

Author Barraclough, Katherine A.
O'Connor, Annette
Bell, Scott C.
Freitag, Andreas
Bye, Peter
Jeanneret, Alphonse
Berthiaume, Yves
Brown, Neil
Wilcox, Pearce
Ryan, Gerard
Brager, Nancy
Rabin, Harvey
Morrison, Nancy
Gibson, Peter
Jackson, Mary
Paterson, Nigel
Middleton, Peter
Aaron, Shawn D.
Title Randomized trial of a decision aid for patients with cystic fibrosis considering lung transplantation
Journal name American Journal of Respiratory and Critical Care Medicine   Check publisher's open access policy
ISSN 1073-449X
Publication date 2009-10-15
Sub-type Article (original research)
DOI 10.1164/rccm.200903-0421OC
Volume 180
Issue 8
Start page 761
End page 768
Total pages 8
Editor Edward Abraham
Christina Shepard
Place of publication New York, NY, United States
Publisher American Thoracic Society
Collection year 2010
Language eng
Subject C1
920109 Infectious Diseases
920115 Respiratory System and Diseases (incl. Asthma)
110203 Respiratory Diseases
Formatted abstract
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
Keyword Cystic fibrosis
Lung transplantation
Severe lung disease
Computerized decision-making tools
Patients education
Q-Index Code C1
Q-Index Status Confirmed Code
Institutional Status Non-UQ

Document type: Journal Article
Sub-type: Article (original research)
Collections: 2010 Higher Education Research Data Collection
School of Medicine Publications
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Citation counts: TR Web of Science Citation Count  Cited 27 times in Thomson Reuters Web of Science Article | Citations
Scopus Citation Count Cited 26 times in Scopus Article | Citations
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Created: Tue, 23 Mar 2010, 11:49:59 EST by Lisa Hennell on behalf of Medicine - Princess Alexandra Hospital