ArticlePatient preference and adherence2019
How Much Information and Participation Do Patients with Inflammatory Rheumatic Diseases Prefer in Interaction with Physicians? Results of a Participatory Research Project.
Article in Patient preference and adherence, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. It is linked to trial NCT04985435 (Better After CHoosing. Randomly Allocated or Patient Preference Based Treatment With Filgotinib or TNFi in Patients With Active Rheumatoid Arthritis), which is not on this map. Cited by 8 papers.
What it found
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Better After CHoosing. Randomly Allocated or Patient Preference Based Treatment With Filgotinib or TNFi in Patients With Active Rheumatoid Arthritis (BACH)
Who cites it
8 citing papers in PubMed, 16 citations in OpenAlex.
- [Patient satisfaction in patients with rheumatoid arthritis : Effects of delegation to rheumatological specialist assistants].Zeitschrift fur Rheumatologie · 2026Trial
- Increasing Disease-Specific Knowledge in Patients with SLE Through a Structured One-Day Seminar: Results of a Randomized, Controlled Study.Healthcare (Basel, Switzerland) · 2026Article
- Quality of Life of Patients With Multi-Organ Autoimmune Disease and Its Relationship to Patient-Centered Care: Protocol for a Longitudinal Cohort Study.JMIR research protocols · 2026Article
- Power asymmetry and embarrassment in shared decision-making: predicting participation preference and decisional conflict.BMC medical informatics and decision making · 2025Article
- Impact of blue-collar vs. white-collar occupations on disease burden in psoriatic arthritis patients: A Swiss clinical quality management in rheumatic diseases cohort study.Clinical rheumatology · 2024Article
- Article
- When attitudes and beliefs get in the way of shared decision-making: A mediation analysis of participation preference.Health expectations : an international journal of public participation in health care and health policy · 2023Article
- Patients' perceptions of conflicting information on chronic medications: a prospective survey in Switzerland.BMJ open · 2022Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
6 authors at 2 institutions in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
objectivePatient 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.
methodsIn 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.
results1616 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.
conclusionWhereas 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.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.