Challenges of Perceived Self-Management in Lupus
Corresponding Author
Paul R. Fortin
Université Laval, Quebec City, Québec, Canada
Address correspondence to Paul R. Fortin MD, MPH, FRCP(C): Centre de Recherche du CHU de Québec, 2705 Boulevard Laurier, Room TR-83, Quebec City, Quebec G1V 4G2, Canada. Email: [email protected].
Search for more papers by this authorDeborah Da Costa
Centre for Outcomes Research & Evaluation, Research Institute of the McGill University Health Centre, Montreal, Quebec, Canada
Search for more papers by this authorCarolyn Neville
Centre for Outcomes Research & Evaluation, Research Institute of the McGill University Health Centre, Montreal, Quebec, Canada
Search for more papers by this authorAnne-Sophie Julien
Université Laval, Quebec City, Québec, Canada
Search for more papers by this authorElham Rahme
Centre for Outcomes Research & Evaluation, Research Institute of the McGill University Health Centre, Montreal, Quebec, Canada
Search for more papers by this authorVinita Haroun
MyLupusGuide Patient Advisory Committee, Université Laval, Quebec City, Quebec, Canada
Search for more papers by this authorWendy Singer
MyLupusGuide Patient Advisory Committee, Université Laval, Quebec City, Quebec, Canada
Search for more papers by this authorJodie Nimigon-Young
MyLupusGuide Patient Advisory Committee, Université Laval, Quebec City, Quebec, Canada
Search for more papers by this authorAnna-Lisa Morrison
MyLupusGuide Patient Advisory Committee, Université Laval, Quebec City, Quebec, Canada
Search for more papers by this authorChristine A. Peschken
University of Manitoba, Winnipeg, Manitoba, Canada
Search for more papers by this authorEvelyne Vinet
Centre for Outcomes Research & Evaluation, Research Institute of the McGill University Health Centre, Montreal, Quebec, Canada
Search for more papers by this authorMarie Hudson
Jewish General Hospital, Lady Davis Institute for Medical Research and McGill University, Montreal, Quebec, Canada
Search for more papers by this authorDoug Smith
The Ottawa Hospital – University of Ottawa, Ottawa, Ontario, Canada
Search for more papers by this authorJanet E. Pope
University of Western Ontario, London, Ontario, Canada
Search for more papers by this authorAnn E. Clarke
Cumming School of Medicine, University of Calgary, Calgary, Alberta, Canada
Search for more papers by this authorStephanie Keeling
University of Alberta, Edmonton, Alberta, Canada
Search for more papers by this authorJ. Antonio Avina-Zubieta
University of British Columbia, Vancouver, British Columbia, Canada
Search for more papers by this authorMurray Rochon
Jack Digital Productions, Montreal, Quebec and Toronto, Ontario, Canada
Search for more papers by this authorCorresponding Author
Paul R. Fortin
Université Laval, Quebec City, Québec, Canada
Address correspondence to Paul R. Fortin MD, MPH, FRCP(C): Centre de Recherche du CHU de Québec, 2705 Boulevard Laurier, Room TR-83, Quebec City, Quebec G1V 4G2, Canada. Email: [email protected].
Search for more papers by this authorDeborah Da Costa
Centre for Outcomes Research & Evaluation, Research Institute of the McGill University Health Centre, Montreal, Quebec, Canada
Search for more papers by this authorCarolyn Neville
Centre for Outcomes Research & Evaluation, Research Institute of the McGill University Health Centre, Montreal, Quebec, Canada
Search for more papers by this authorAnne-Sophie Julien
Université Laval, Quebec City, Québec, Canada
Search for more papers by this authorElham Rahme
Centre for Outcomes Research & Evaluation, Research Institute of the McGill University Health Centre, Montreal, Quebec, Canada
Search for more papers by this authorVinita Haroun
MyLupusGuide Patient Advisory Committee, Université Laval, Quebec City, Quebec, Canada
Search for more papers by this authorWendy Singer
MyLupusGuide Patient Advisory Committee, Université Laval, Quebec City, Quebec, Canada
Search for more papers by this authorJodie Nimigon-Young
MyLupusGuide Patient Advisory Committee, Université Laval, Quebec City, Quebec, Canada
Search for more papers by this authorAnna-Lisa Morrison
MyLupusGuide Patient Advisory Committee, Université Laval, Quebec City, Quebec, Canada
Search for more papers by this authorChristine A. Peschken
University of Manitoba, Winnipeg, Manitoba, Canada
Search for more papers by this authorEvelyne Vinet
Centre for Outcomes Research & Evaluation, Research Institute of the McGill University Health Centre, Montreal, Quebec, Canada
Search for more papers by this authorMarie Hudson
Jewish General Hospital, Lady Davis Institute for Medical Research and McGill University, Montreal, Quebec, Canada
Search for more papers by this authorDoug Smith
The Ottawa Hospital – University of Ottawa, Ottawa, Ontario, Canada
Search for more papers by this authorJanet E. Pope
University of Western Ontario, London, Ontario, Canada
Search for more papers by this authorAnn E. Clarke
Cumming School of Medicine, University of Calgary, Calgary, Alberta, Canada
Search for more papers by this authorStephanie Keeling
University of Alberta, Edmonton, Alberta, Canada
Search for more papers by this authorJ. Antonio Avina-Zubieta
University of British Columbia, Vancouver, British Columbia, Canada
Search for more papers by this authorMurray Rochon
Jack Digital Productions, Montreal, Quebec and Toronto, Ontario, Canada
Search for more papers by this authorSupported by the Canadian Institute of Health Research (operating grant of the Knowledge to Action program) and in kind by Jack Digital Productions. Dr. Fortin is a tier 1 Canada Research Chair on Systemic Autoimmune Rheumatic Diseases. Dr. Avina-Zubieta is a BC Lupus Society Research Scholar and a Walter and Marilyn Booth Research Scholar.
No potential conflicts of interest relevant to this article were reported.
Abstract
Objective
Systemic lupus erythematosus is a chronic autoimmune disease with varied and unpredictable levels of disease activity. The ability to self-manage lupus is important in controlling disease activity. Our objective was to determine levels of patient activation toward self-management in lupus.
Methods
We used baseline results from the MyLupusGuide study, which had recruited 541 lupus patients from 10 lupus centers. We used the Patient Activation Measure (PAM), a validated self-reported tool designed to measure activation toward self-management ability, as our primary variable and examined its association with demographic, disease-related, patient–provider communication and psychosocial variables captured in our study protocol. Univariable and multivariable linear regressions were performed using linear mixed models, with a random effect for centers.
Results
The mean ± SD age of participants was 50 ± 14 years, 93% were female, 74% were White, and the mean ± SD disease duration was 17 ± 12 years. The mean ± SD PAM score was 61.2 ± 13.5, with 36% of participants scoring in the 2 lower levels, indicating low activation. Variables associated with low activation included being single, having lower physical health status, lower self-reported disease activity, lower self-efficacy, use of more emotional coping and fewer distraction and instrumental coping strategies, and a perceived lack of clarity in patient–doctor communication.
Conclusion
Low patient activation was observed in more than one-third of lupus patients, indicating that a large proportion of patients perceived that they are lacking in lupus self-management skills. These results highlight a modifiable gap in perceived self-management ability among patients with lupus.
Supporting Information
| Filename | Description |
|---|---|
| acr24542-sup-0001-Supinfo.docxWord 2007 document , 49.9 KB | Supplementary Table 1: Demographic characteristics in MLG™ and CaNIOS studies. Supplementary Table 2: Disease characteristics in MLG™ and CaNIOS studies. Supplementary Figure 1: Integrative Model to Elucidate Barriers and Facilitators to Patient Activation. |
Please note: The publisher is not responsible for the content or functionality of any supporting information supplied by the authors. Any queries (other than missing content) should be directed to the corresponding author for the article.
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