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ISSN: 2165-7386

Journal of Palliative Care & Medicine
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Research Article

The Development and Validation of a Questionnaire to Audit Advance Care Planning

Daren K. Heyland1,2,3*, Deb Pichora1,3, Peter Dodek4, Francois Lamontagne5, John J. You6, Doris Barwich7,8, Carolyn Tayler8, Pat Porterfield9, Jessica Simon10,11 and Bert Enns12

1Department of Medicine, Kingston General Hospital, Kingston, Ontario, Canada

2Department of Community Health and Epidemiology, Queen’s University, Kingston, Ontario, Canada

3Clinical Evaluation Research Unit, Kingston General Hospital, Kingston, Ontario, Canada

4Center for Health Evaluation and Outcome Sciences and Division of Critical Care Medicine, St. Paul’s Hospital and University of British Columbia, Vancouver, B.C, Canada

5Centre de Recherche Clinique Étienne-Le Bel, Université de Sherbrooke, Sherbrooke, Québec, Canada

6Departments of Medicine, and of Clinical Epidemiology & Biostatistics, McMaster University, Hamilton, Ontario, Canada

7Division of Palliative Care, Department of Family Practice UBC, Canada

8Fraser Health Authority, Surrey BC, Canada

9Vancouver Coastal Health and School of Nursing University of British Columbia, Canada

10Division of Palliative Medicine, Department of Oncology, University of Calgary, Alberta, Canada

11Department of Internal Medicine, University of Calgary, Alberta, Canada

12Tom Baker Cancer Centre, Calgary, AB, Canada

Corresponding Author:
Daren K. Heyland
Angada 4, Kingston General Hospital, Kingston
Ontario, K7L 2V7, Canada
Tel: 613-549-6666/4847
Fax: 613-548-2428
E-mail: [email protected]

Received Date: April 13, 2012; Accepted Date: June 18, 2012; Published Date: June 20, 2012

Citation: Heyland DK, Pichora D, Dodek P, Lamontagne F, You JJ, et al. (2012) The Development and Validation of a Questionnaire to Audit Advance Care Planning. J Palliative Care Med 2:119. doi:10.4172/2165-7386.1000119

Copyright: © 2012 Heyland DK, et al. This is an open-access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.


Background: Advance Care Planning (ACP) is established as a standard of care in many settings. However, no validated tool exists to measure participants’ perspectives on ACP. The purpose of this study was to develop and validate a questionnaire to assess ACP from the perspectives of patients and their family members, and to pilot the use of this questionnaire in both English and French.
Methods: To develop the ACP-specific questionnaire, items were generated from focus groups with health care professionals and face-to-face interviews withhospitalized patients and their families. The items from this novel questionnaire were combined with other validated evaluation instruments and then piloted in English-speaking hospitalized patients who had advanced, life-limiting illnesses and a version for their family members. Revisions were made based on that experience and feedback from content experts and this questionnaire was then piloted in another sample of French-speaking respondents.
Results: The novel questionnaire was divided into 2 parts, the first part focusing on ACP activities before admission to hospital (6 questions) and the second part relating to ‘goals of care’ discussions that occur during hospitalization (8 questions). For the English pilot study, the average duration of the entire interview (including consent, baseline demographics and other questionnaires) was 53.1 mins (range 35-80 mins) for patients and 60.8 mins (range 33-125 mins) for family members. English-speaking patients rated the burden of participating in the interview as a mean of 2.8 (Standard Deviation [SD] 1.9, 1=no burden, 10=extreme burden) and family members as 1.9 (SD 1.9). For the French pilot study, the results were similar.
Conclusions: This is the first ACP questionnaire to be developed that has face and content validity. Despite a relatively lengthy interview process, the ACP audit process seems feasible and is not associated with undue burden.


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