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How Much Information and Participation Do Patients with Inflammatory Rheumatic Diseases Prefer in Interaction with Physicians? Results of a Participatory Research Project

Authors Mattukat K, Boehm P, Raberger K, Schaefer C, Keyszer G, Mau W

Received 19 March 2019

Accepted for publication 25 October 2019

Published 17 December 2019 Volume 2019:13 Pages 2145—2158


Checked for plagiarism Yes

Review by Single anonymous peer review

Peer reviewer comments 2

Editor who approved publication: Professor Qizhi (Cathy) Yao

Kerstin Mattukat,1 Peter Boehm,2 Katja Raberger,1 Christoph Schaefer,3 Gernot Keyszer,3 Wilfried Mau1

1Institute of Rehabilitation Medicine, Martin Luther University Halle-Wittenberg, Halle (Saale), Germany; 2Federal Association of the German League Against Rheumatism, Bonn, Germany; 3Clinic for Internal Medicine II, Department of Internal Medicine, University Hospital Halle, Halle (Saale), Germany

Correspondence: Kerstin Mattukat
Institute of Rehabilitation Medicine, Martin Luther University Halle-Wittenberg, Magdeburger Street 8, Halle (Saale) 06112, Germany
Tel +49 345 557-7646
Fax +49 345 557-4206

Objective: Patient preferences for information and participation in medical decision-making are important prerequisites to realize a shared decision between patients and physicians. This paper aims at exploring these preferences in German patients with inflammatory rheumatic diseases and at identifying relevant determinants of these preferences.
Methods: In a cross-sectional survey, adult patients with rheumatoid arthritis (RA), spondyloarthritis (SA) or different connective tissue diseases (CTS) filled out a questionnaire. Data were collected via a written questionnaire (1) sent to members of a regional self-help group or (2) handed out to patients at their rheumatologist’s appointment, and (3) via an online questionnaire available nationwide. Measurements included information and participation preferences (Autonomy Preference Index; API: 0–100), as well as health-related and sociodemographic variables. Analyses included ANOVAs (group differences) and multiple regression analyses (determinants of preferences). To ensure the analysis was patient-centered we involved a trained representative of the German League Against Rheumatism as a research partner.
Results: 1616 patients returned questionnaires [44% response, 79% female, mean age 54 years, diagnoses 63% RA, 28% SA, 19% CTS]. Participants reported a concurring major preference for information but vastly different preferences for participation. A greater preference for participation was associated with female sex, younger age, higher household income, and self-help group membership. Conversely, a lower preference for participation was linked to blue-collar workers, retirement, higher confidence in the rheumatologist, and poorer health literacy.
Conclusion: Whereas patients consistently welcome comprehensive information about their disease and its different treatment options, not all patients wish to be involved in therapeutic decisions. Especially older patients with lower education status and lower health literacy, but higher confidence in their rheumatologist tend to leave the decisions rather to the physician. Different preferences should be considered in the doctor–patient communication.

Keywords: doctor–patient communication, decision making, health care, outpatient, patient-reported outcomes

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