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

Carl R May1*, David T Eton3, Kasey Boehmer4, Katie Gallacher5, Katherine Hunt1, Sara MacDonald5, Frances S Mair5, Christine M May1, Victor M Montori4, Alison Richardson126, Anne E Rogers2 and Nathan Shippee7

Author Affiliations

1 Faculty of Health Sciences, University of Southampton, Building 67 (Nightingale), University Road, Highfield, Southampton SO17 1BJ, UK

2 NIHR Wessex Collaboration for Leadership and Research in Health Care, Southampton, UK

3 Division of Health Policy and Research, Department of Health Sciences, and the Robert D. and Patricia E, Kern Center for the Science of Healthcare Delivery, Mayo Clinic, Rochester, MN, USA

4 Knowledge and Evaluation Research Unit, Department of Health Sciences, Mayo Clinic, Rochester, MN, USA

5 Institute for Health and Wellbeing, College of Medical, Veterinary and Life Sciences, University of Glasgow, Glasgow, UK

6 University Hospital Southampton NHS Foundation Trust, Southampton, UK

7 Division of Health Policy and Management, University of Minnesota, Minneapolis, MN, USA

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BMC Health Services Research 2014, 14:281  doi:10.1186/1472-6963-14-281

Published: 26 June 2014



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.


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.


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.