https://orcid.org/0000-0002-1284-2876
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.
Acknowledgments
First, our sincere thanks go to the participants of our study. Furthermore, we would like to thank our partners in this research project, amongst them all of the engaged rheumatologists and nurses across Germany, the Deutsche Rheuma-Liga Landesverband Sachsen-Anhalt e.V. (German League Against Rheumatism Saxony-Anhalt), the Deutsche Rheuma-Liga Bundesverband (Federal Association of the German League Against Rheumatism), our diligent research assistants, and our supportive colleagues at the Medical Faculty of the Martin Luther University Halle-Wittenberg for their valuable collaboration.
Abbreviations
AIMS2-SF, Arthritis Impact Measurement Scales 2 - Short Form; ANOVA, analysis of variance; API, Autonomy Preference Index; BIPQ, Brief Illness Perception Questionnaire; CI, confidence interval; CTS, connective tissue diseases; eg, for example; EULAR, European League Against Rheumatism; GLAR, German League Against Rheumatism; ICD, International Statistical Classification of Diseases and Related Health Problems; ie, that means; HELP, Health Education Literacy of Patients with chronic musculoskeletal diseases; M, mean (statistics); NA, not applicable; NRS, numeric rating scale; PHQ, Patient Health Questionnaire; PRO, patient-reported outcome; PRP, patient research partner; RA, rheumatoid arthritis; SA, spondyloarthritis; SD, standard deviation (statistics); SDM, shared decision-making; TPS, Trust in Physician Scale.
Ethics Approval and Informed Consent
The study was performed in accordance with the principles outlined in the Declaration of Helsinki. The Ethics Committee of the Medical Faculty of the Martin Luther University Halle-Wittenberg approved the study protocol (2016-139). Participation in the study was voluntary. Eligible patients received written or online information about study aims, participation requirements, and the right to refuse. Completion and return of the questionnaire implied informed consent. We registered the study in the German Clinical Trials Register (DRKS00011554; http://www.drks.de).
Data Sharing Statement
Selected research data are available by request from the Institute of Rehabilitation Medicine, Martin Luther University Halle-Wittenberg. Please state the title of the project, its funding number (30/09), and the aim and purpose of your request.
Authors’ Information
PB is the research partner from the Federal Association of the German League Against Rheumatism; KR is research fellow and KM is the leader of the research project. CS is the president of the German League Against Rheumatism Saxony Anhalt. GK is the speaker of the Rheumazentrum Halle at the University Hospital Halle (RZH); CS, WM and KM are members of the RZH.
Author Contributions
All authors contributed to conception and design, acquisition of data or data analysis, drafting or revising the article, gave final approval of the version to be published, and agreed to be accountable for all aspects of the work.
Disclosure
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.