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

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

doi:10.1186/1472-6963-14-281

Abstract

BackgroundIn 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.DiscussionAs 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.SummaryBurden 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.

Highlights

In this article we outline Burden of Treatment Theory, a new model of the relationship between sick people, their social networks, and healthcare services
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

Summary

Introduction

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. This is the burden of treatment itself, as they engage with services and therapeutic modalities aimed at conditions that cannot be cured but must instead be managed [6] This division, over time, between curative effort applied to episodes of acute illness and injury (mainly in hospital), and effort devoted to the management of life-time illness trajectories (mainly in the community) has profoundly changed the nature of both patient-hood and healthcare provision [7]

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