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

Kerstin Mattukat, Peter Boehm, Katja Raberger, Christoph Schaefer, Gernot Keyszer, Wilfried Mau, Kerstin Mattukat, Peter Boehm, Katja Raberger, Christoph Schaefer, Gernot Keyszer, Wilfried Mau

Abstract

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: decision making; doctor–patient communication; health care; outpatient; patient-reported outcomes.

Conflict of interest statement

Peter Boehm reports financial fees for employment from Deutsche Rheuma-Liga Berlin e. V., financial fees for lectures from Wannseeschule e. V. and Schule für Gesundheits- und Krankenpflege and non-financial support from Deutsche Rheuma-Liga e. V. and Deutsche Vereinigung Morbus Bechterew e. V. The authors report no other financial or non-financial conflicts of interest in this work.

© 2019 Mattukat et al.

Figures

Figure 1
Figure 1
Flow of participants. Note: *Data from reference .
Figure 2
Figure 2
Preference for information (A) and participation (B) in medical decision-making of the three study groups. Note: The Autonomy-Preference-Index (API) was used to assess the main outcomes.

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