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

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.

Patients’ perceptions of conflicting information on chronic medications: a prospective survey in Switzerland

“…27 The level of information patients need to cope and manage side effects varies widely across individuals. 28 The high prevalence of patients perceiving conflicting information is consistent with the findings from previously published studies. 13 16 21 23 29 While other studies evaluated conflicting information encountered by patients suffering from specific chronic diseases such as arthritis 7 22 or atrial fibrillation, 30 our study describes the perception of conflicting information of patients with various long-term diseases and treatments, most of them included in the primary care context, that is, community pharmacies.…”

“… 27 The level of information patients need to cope and manage side effects varies widely across individuals. 28 …”

“…Conflicting information was reported across all medication topics, although the most commonly related to side effects information which is a topic known to trigger many negative emotions in patients, including fear 27. The level of information patients need to cope and manage side effects varies widely across individuals 28…”

When attitudes and beliefs get in the way of shared decision‐making: A mediation analysis of participation preference

“…52 In previous research, multiple regressions were mainly used to analyse factors influencing participation preferences and explained between 3% and 21% of the variance. [66][67][68] While our mediation path model explained a substantial amount of variance and, more importantly, uncovered the mediating effects of attitudes and beliefs,…”

Patients' Perspectives on Shared Decision‐Making About Medications in Psoriatic Arthritis: An Interview Study

“…Models for shared decision‐making focus on the need to offer choices, discuss options, and finally come to a decision by taking into account patient understanding and preferences (6,17). In rheumatology, patients prefer different levels of involvement, ranging from predominantly doctor led to patient led (17,19,25). We found that the preference for the level of involvement is not static.…”