Building a measurement framework of burden of treatment in complex patients with chronic conditions: a qualitative study

uilding a measurement framework of burden of treatment in complex patients with chronic conditions: a qualitative study Original Research (1438) Total Article Views Authors: Eton DT, Ramalho de Oliveira D, Egginton JS, Ridgeway JL, Odell L, May CR, Montori VM Published Date August 2012 Volume 2012:3 Pages 39 - 49 DOI: http://dx.doi.org/10.2147/PROM.S34681 Received: 06 June 2012 Accepted: 26 June 2012 Published: 24 August 2012 David T Eton,1 Djenane Ramalho de Oliveira,2,3 Jason S Egginton,1 Jennifer L Ridgeway,1 Laura Odell,4 Carl R May,5 Victor M Montori1,6 1Division of Health Care Policy and Research, Department of Health Sciences Research, Mayo Clinic, Rochester, MN, USA; 2College of Pharmacy, Universidade Federal de Minas Gerais, Belo Horizonte, Brazil; 3Medication Therapy Management Program, Fairview Pharmacy Services LLC, Minneapolis, MN, USA; 4Pharmacy Services, Mayo Clinic, Rochester, MN, USA; 5Faculty of Health Sciences, University of Southampton, Southampton, UK; 6Knowledge and Evaluation Research Unit, Mayo Clinic, Rochester, MN, USA Background: Burden of treatment refers to the workload of health care as well as its impact on patient functioning and well-being. We set out to build a conceptual framework of issues descriptive of burden of treatment from the perspective of the complex patient, as a first step in the development of a new patient-reported measure. Methods: We conducted semistructured interviews with patients seeking medication therapy management services at a large, academic medical center. All patients had a complex regimen of self-care (including polypharmacy), and were coping with one or more chronic health conditions. We used framework analysis to identify and code themes and subthemes. A conceptual framework of burden of treatment was outlined from emergent themes and subthemes. Results: Thirty-two patients (20 female, 12 male, age 26–85 years) were interviewed. Three broad themes of burden of treatment emerged including: the work patients must do to care for their health; problem-focused strategies and tools to facilitate the work of self-care; and factors that exacerbate the burden felt. The latter theme encompasses six subthemes including challenges with taking medication, emotional problems with others, role and activity limitations, financial challenges, confusion about medical information, and health care delivery obstacles. Conclusion: We identified several key domains and issues of burden of treatment amenable to future measurement and organized them into a conceptual framework. Further development work on this conceptual framework will inform the derivation of a patient-reported measure of burden of treatment.