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. 2014 Jun 26:14:281.
doi: 10.1186/1472-6963-14-281.

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

Carl R May  1 , 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
Affiliations

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

Carl R May et al. BMC Health Serv Res. .

Abstract

Background: 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.

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Figures

Figure 1
Figure 1
Mobilizing capacity.
Figure 2
Figure 2
Expressing capacity.
Figure 3
Figure 3
Mobilizing for delegated tasks.
Figure 4
Figure 4
Enacting delegated tasks.
Figure 5
Figure 5
Interventions that link capacity and work.
See this image and copyright information in PMC

References

    1. Thorne S, Paterson B, Acorn S, Canam C, Joachim G, Jillings C. Chronic illness experience: insights from a metastudy. Qual Health Res. 2002;14(4):437–452. - PubMed
    1. Corbin J, Strauss A. Unending Work and Care: Managing Chronic Illness at Home. San Francisco: Jossey-Bass; 1988.
    1. Cornwell J. Hard-Earned Lives: Accounts of Health and Illness from East London. London: Routledge; 1984.
    1. Holman HR. Chronic illness and the healthcare crisis. Chron Illness. 2006;14(4):265–274. - PubMed
    1. Barnett K, Mercer SW, Norbury M, Watt G, Wyke S, Guthrie B. Epidemiology of multimorbidity and implications for health care, research, and medical education: a cross-sectional study. Lancet. 2012;14(9836):37–43. - PubMed

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