title: Finalizing a measurement framework for the burden of treatment in complex patients with chronic conditions.
abstract: OBJECTIVE
  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.
  
  
  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.
  
  
  CONCLUSIONS
  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.
authors.affiliation: Division of Health Care Policy and Research, Department of Health Sciences Research, Mayo Clinic, Rochester, MN, USA ; Robert D and Patricia E Kern Center for the Science of Health Care Delivery, Mayo Clinic, Rochester, MN, USA.
authors.forename: David T
authors.initials: DT
authors.lastname: Eton
authors.affiliation: Division of Health Care Policy and Research, Department of Health Sciences Research, Mayo Clinic, Rochester, MN, USA ; Robert D and Patricia E Kern Center for the Science of Health Care Delivery, Mayo Clinic, Rochester, MN, USA.
authors.forename: Jennifer L
authors.initials: JL
authors.lastname: Ridgeway
authors.affiliation: Division of Health Care Policy and Research, Department of Health Sciences Research, Mayo Clinic, Rochester, MN, USA ; Robert D and Patricia E Kern Center for the Science of Health Care Delivery, Mayo Clinic, Rochester, MN, USA.
authors.forename: Jason S
authors.initials: JS
authors.lastname: Egginton
authors.affiliation: Department of Sociology and Anthropology, Université Lumière Lyon 2, Lyon, France.
authors.forename: Kristina
authors.initials: K
authors.lastname: Tiedje
authors.affiliation: Division of General Internal Medicine, Hennepin County Medical Center, Minneapolis, MN, USA ; University of Minnesota Medical School, University of Minnesota, Minneapolis, MN, USA.
authors.forename: Mark
authors.initials: M
authors.lastname: Linzer
authors.affiliation: Division of General Internal Medicine, Hennepin County Medical Center, Minneapolis, MN, USA.
authors.forename: Deborah H
authors.initials: DH
authors.lastname: Boehm
authors.affiliation: Minneapolis Medical Research Foundation, Minneapolis, MN, USA.
authors.forename: Sara
authors.initials: S
authors.lastname: Poplau
authors.affiliation: Department of Social Pharmacy, Universidade Federal de Minas Gerais, Belo Horizonte, Minas Gerais, Brazil.
authors.forename: Djenane
authors.initials: D
authors.lastname: Ramalho de Oliveira
authors.affiliation: Pharmacy Services, Mayo Clinic, Rochester, MN, USA.
authors.forename: Laura
authors.initials: L
authors.lastname: Odell
authors.affiliation: Division of Health Care Policy and Research, Department of Health Sciences Research, Mayo Clinic, Rochester, MN, USA ; Knowledge and Evaluation Research Unit, Mayo Clinic, Rochester, MN, USA.
authors.forename: Victor M
authors.initials: VM
authors.lastname: Montori
authors.affiliation: Faculty of Health Sciences and NIHR CLAHRC Wessex, University of Southampton, Southampton, UK.
authors.forename: Carl R
authors.initials: CR
authors.lastname: May
authors.affiliation: School of Medicine, University of Virginia, Charlottesville, VA, USA.
authors.forename: Roger T
authors.initials: RT
authors.lastname: Anderson
keywords: adherence; conceptual framework; multi-morbidity; questionnaire; self- management; treatment burden
references.citation: Prev Chronic Dis. 2013 Apr 25;10:E65
references.pmid: 23618545
references.citation: Eur Respir J. 2010 Apr;35(4):787-94
references.pmid: 19797134
references.citation: Med Care. 2014 Mar;52 Suppl 3:S118-25
references.pmid: 24561750
references.citation: Patient Relat Outcome Meas. 2012;3:39-49
references.pmid: 23185121
references.citation: Arch Intern Med. 2006 Sep 25;166(17):1836-41
references.pmid: 17000939
references.citation: Clin Ther. 2004 Apr;26(4):565-78
references.pmid: 15189754
references.citation: Diabetes Care. 2009 Jan;32(1):51-3
references.pmid: 18931098
references.citation: Am J Gastroenterol. 2014 Sep;109(9):1304-11
references.pmid: 24980880
references.citation: Arch Intern Med. 2004 Oct 11;164(18):2058-64
references.pmid: 15477443
references.citation: BMJ. 2002 Aug 24;325(7361):422-5
references.pmid: 12193359
references.citation: Health Qual Life Outcomes. 2006 May 03;4:28
references.pmid: 16672069
references.citation: J Gen Intern Med. 2005 May;20(5):479-82
references.pmid: 15963177
references.citation: J Cyst Fibros. 2009 Mar;8(2):91-6
references.pmid: 18952504
references.citation: Health Soc Care Community. 2013 Nov;21(6):665-74
references.pmid: 23701664
references.citation: Patient Relat Outcome Meas. 2013 Jun 05;4:7-20
references.pmid: 23833553
references.citation: Health Expect. 2015 Jun;18(3):312-24
references.pmid: 23363080
references.citation: BMC Nephrol. 2010 Dec 08;11:35
references.pmid: 21138597
references.citation: Int J Clin Pract Suppl. 2009 Oct;(164):6-10
references.pmid: 19751453
references.citation: JAMA. 2007 Jan 10;297(2):177-86
references.pmid: 17213401
references.citation: Health Qual Life Outcomes. 2004 Feb 26;2:12
references.pmid: 14987333
references.citation: Health Qual Life Outcomes. 2009 Sep 09;7:83
references.pmid: 19740444
references.citation: Qual Life Res. 2009 Nov;18(9):1263-78
references.pmid: 19784865
references.citation: NCHS Data Brief. 2012 Jul;(100):1-8
references.pmid: 23101759
references.citation: BMJ. 2009 Aug 11;339:b2803
references.pmid: 19671932
references.citation: Curr Allergy Asthma Rep. 2007 Nov;7(6):427-32
references.pmid: 17986372
references.citation: Patient Prefer Adherence. 2014 Mar 19;8:339-51
references.pmid: 24672228
references.citation: JAMA. 2002 Dec 11;288(22):2880-3
references.pmid: 12472330
references.citation: BMC Health Serv Res. 2014 Jun 26;14:281
references.pmid: 24969758