Rethinking the patient: Using Burden of Treatment Theory to understand the changing dynamics of illness

Carl R. May, David T. Eton, Kasey Boehmer, Katie Gallacher, Katherine Hunt, Sara MacDonald, Frances S. Mair, Christine M. May, Victor M. Montori, Alison Richardson, Anne E. Rogers, Nathan Shippee

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388 Scopus citations


In this article we outline Burden of Treatment Theory, a new model of the relationship between sick people, their social networks, and healthcare services. Health services face the challenge of growing populations with long-term and life-limiting conditions, they have responded to this by delegating to sick people and their networks routine work aimed at managing symptoms, and at retarding - and sometimes preventing - disease progression. This is the new proactive work of patient-hood for which patients are increasingly accountable: founded on ideas about self-care, self-empowerment, and self-actualization, and on new technologies and treatment modalities which can be shifted from the clinic into the community. These place new demands on sick people, which they may experience as burdens of treatment. Discussion. As the burdens accumulate some patients are overwhelmed, and the consequences are likely to be poor healthcare outcomes for individual patients, increasing strain on caregivers, and rising demand and costs of healthcare services. In the face of these challenges we need to better understand the resources that patients draw upon as they respond to the demands of both burdens of illness and burdens of treatment, and the ways that resources interact with healthcare utilization. Summary. Burden of Treatment Theory is oriented to understanding how capacity for action interacts with the work that stems from healthcare. Burden of Treatment Theory is a structural model that focuses on the work that patients and their networks do. It thus helps us understand variations in healthcare utilization and adherence in different healthcare settings and clinical contexts.

Original languageEnglish (US)
Article number281
JournalBMC Health Services Research
Issue number1
StatePublished - Jun 26 2014

Bibliographical note

Funding Information:
We thank participants at a seminar of the Department of General Practice, University of Melbourne, Australia (July 2012), and at the Norwegian Medical Sociology Conference, Trondheim (April 2013), for their helpful comments on early sketches of ideas developed in this paper. We also thank Kathleen Yost for her contribution to early discussions on the content of the paper, and Paul Roderick for comments on an early draft. Contributions to this paper by CRM, AR and AER were partly supported by the National Institute for Health Research Collaboration for Leadership in Applied Health Research and Care Wessex. Contributions to this paper by KG and SMacD were supported by the Chief Scientist’s Office of the Scottish Government. CMM’s contribution was supported in part by core funding from Macmillan Cancer Support for the Macmillan Survivorship Research Group in Southampton. The views expressed are those of the author(s) and not necessarily those of the NHS, the NIHR or the Department of Health or other funders. Funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript.


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