Abstract
PURPOSE Our goal was to assess the burden associated with treatment among patients living with chronic heart failure and to determine whether Normalization Process Theory (NPT) is a useful framework to help describe the components of treatment burden in these patients.
METHODS We performed a secondary analysis of qualitative interview data, using framework analysis, informed by NPT, to determine the components of patient “work.” Participants were 47 patients with chronic heart failure managed in primary care in the United Kingdom who had participated in an earlier qualitative study about living with this condition. We identified and examined data that fell outside of the coding frame to determine if important concepts or ideas were being missed by using the chosen theoretical framework.
RESULTS We were able to identify and describe components of treatment burden as distinct from illness burden using the framework. Treatment burden in chronic heart failure includes the work of developing an understanding of treatments, interacting with others to organize care, attending appointments, taking medications, enacting lifestyle measures, and appraising treatments. Factors that patients reported as increasing treatment burden included too many medications and appointments, barriers to accessing services, fragmented and poorly organized care, lack of continuity, and inadequate communication between health professionals. Patient “work” that fell outside of the coding frame was exclusively emotional or spiritual in nature.
CONCLUSIONS We identified core components of treatment burden as reported by patients with chronic heart failure. The findings suggest that NPT is a theoretical framework that facilitates understanding of experiences of health care work at the individual, as well as the organizational, level. Although further exploration and patient endorsement are necessary, our findings lay the foundation for a new target for treatment and quality improvement efforts toward patient-centered care.
- Chronic heart failure
- comorbidity
- treatment burden
- burden of illness
- Normalization Process Theory
- treatment work
- patient experience
Footnotes
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Conflicts of interest: authors report none.
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Funding support: This study was funded by the Chief Scientist Office (CSO) Scotland, grant CZG/3/22. The authors have support from the University of Glasgow for the submitted work.
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Disclaimer: All researchers involved are completely independent of the funder. The study sponsor(s) or funder(s) had no role in study design; in the collection, analysis, and interpretation of data; in the writing of the report; and in the decision to submit the article for publication. The authors have no relationships with the University of Glasgow that might have an interest in the submitted work in the previous 3 years. All authors, external and internal, had full access to all of the data (including statistical reports and tables) in the study and can take responsibility for the integrity of the data and the accuracy of the data analysis.
This work was previously presented in part at the ADEGS conference (Departments of Primary Care in Aberdeen, Dundee, Edinburgh, Glasgow, St Andrews), January 2010, Dundee, Scotland; the Scottish School of Primary Care Conference, April 2010, Crieff, Scotland; the British Cardiovascular Society Conference, June 2010, Manchester, England; the Society for Academic Primary Care Conference, July 2010, Norwich, England; and the North American Primary Care Research Group Conference, November 2010, Seattle, Washington.
- Received for publication June 29, 2010.
- Revision received December 3, 2010.
- Accepted for publication December 15, 2010.
- © 2011 Annals of Family Medicine, Inc.
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