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

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.

Minimally disruptive medicine: the evidence and conceptual progress supporting a new era of healthcare

“…Minimally disruptive medicine: a new era of healthcare medications and paper work) and, importantly, the organisation of health services and the practices of health practitioners. 5,8,9 The BOT is likely to vary between places due to differences in healthcare settings or systems. For example, financial obstacles are more likely to be found in healthcare systems that require patients to negotiate with insurers (such as in the US) than in universal healthcare systems where care is free at the point of contact (such as in the UK).…”

“…The concepts of workload and patient capacity have been further conceptualised by development of Burden of Treatment Theory. 8 This theorises healthcare utilisation as an undertaking that is characterised by individuals and their support networks navigating through health services and their associated clinicians.…”

Minimally Disruptive Diabetes Care for the Elderly

“…19 The extent to which this work, including the work of managing diabetes, impacts patients' performance and well-being reflects the burden of treatment. 20,21 Overwhelmed patients may not be able to reach hemoglobin A1c or blood pressure targets, 19 as their burden of treatment is associated with exhaustion with self-care and lower medication adherence. 5,22 In such cases, treatment intensification to avoid clinical inertia can paradoxically exacerbate workload-tocapacity imbalances.…”

Attaining minimally disruptive medicine: context, challenges and a roadmap for implementation

“…orienting clinics' hours of operation to better fit patients' schedules). Conversely, building and mobilising 27 patients' capacity could mean supporting caregivers to amplify their efforts, optional training and classes, and other interventions delivered with kind respect to the limitations in the capacity that our patients can mobilise to address healthcare work. Implementing such modules, adapted for each context, is likely to be the most immediate way to introduce MDM.…”