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. 2015 Mar 27:6:117-26.
doi: 10.2147/PROM.S78955. eCollection 2015.

Finalizing a measurement framework for the burden of treatment in complex patients with chronic conditions

David T Eton  1 , Jennifer L Ridgeway  1 , Jason S Egginton  1 , Kristina Tiedje  2 , Mark Linzer  3 , Deborah H Boehm  4 , Sara Poplau  5 , Djenane Ramalho de Oliveira  6 , Laura Odell  7 , Victor M Montori  8 , Carl R May  9 , Roger T Anderson  10
Affiliations

Finalizing a measurement framework for the burden of treatment in complex patients with chronic conditions

David T Eton et al. Patient Relat Outcome Meas. .

Abstract

Purpose: The workload of health care and its impact on patient functioning and well-being is known as treatment burden. The purpose of this study was to finalize a conceptual framework of treatment burden that will be used to inform a new patient-reported measure of this construct.

Patients and methods: Semi-structured interviews were conducted with 50 chronically ill patients from a large academic medical center (n=32) and an urban safety-net hospital (n=18). We coded themes identifying treatment burden, with the themes harmonized through discussion between multiple coders. Four focus groups, each with five to eight participants with chronic illness, were subsequently held to confirm the thematic structure that emerged from the interviews.

Results: Most interviewed patients (98%) were coping with multiple chronic conditions. A preliminary conceptual framework using data from the first 32 interviews was evaluated and was modified using narrative data from 18 additional interviews with a racially and socioeconomically diverse sample of patients. The final framework features three overarching themes with associated subthemes. These themes included: 1) work patients must do to care for their health (eg, taking medications, keeping medical appointments, monitoring health); 2) challenges/stressors that exacerbate perceived burden (eg, financial, interpersonal, provider obstacles); and 3) impacts of burden (eg, role limitations, mental exhaustion). All themes and subthemes were subsequently confirmed in focus groups.

Conclusion: The final conceptual framework can be used as a foundation for building a patient self-report measure to systematically study treatment burden for research and analytical purposes, as well as to promote meaningful clinic-based dialogue between patients and providers about the challenges inherent in maintaining complex self-management of health.

Keywords: adherence; conceptual framework; multi-morbidity; questionnaire; self- management; treatment burden.

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Figures

Figure 1
Figure 1
A preliminary conceptual measurement framework of burden of treatment. Note: Copyright © 2012. Dove Medical Press. Reproduced from Eton DT, Ramalho de Oliveira D, Egginton JS, et al. Building a measurement framework of burden of treatment in complex patients with chronic conditions: a qualitative study. Patient Related Outcome Measures. 2012:3 39–49.
Figure 2
Figure 2
A final conceptual measurement framework of burden of treatment.
See this image and copyright information in PMC

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