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.
ZusammenfassungDie COVID-19-Pandemie hat vor dem Hintergrund mehrfacher Lockdowns für unzählige Kinder und Jugendliche den bisherigen Alltag grundlegend verändert. Studiendaten aus Deutschland deuten darauf hin, dass psychische- und Verhaltensauffälligkeiten zugenommen haben. Kinder und Jugendliche mit niedrigem sozioökonomischem Status oder Migrationshintergrund haben zudem ein höheres Risiko, durch die COVID-19-Pandemie erheblich belastet zu werden.Die Anzahl der Kindeswohlgefährdungen nimmt seit Einführung der Statistik im Jahr 2012 kontinuierlich zu. Zwischen 2017- bis -2019 zeigte sich ein jährlicher Anstieg von 10% der Kindeswohlgefährdungen. Im Jahr 2020 registrierten die Behörden ca. 5000 Fälle mehr als 2019, was einen Anstieg von 9% beschreibt. Ob durch Schul- und Kitaschließungen viele Fälle unentdeckt geblieben sind oder sich durch mehr Hinweise aus der sensibilisierten Bevölkerung (+21%) das Dunkelfeld aufhellt, ist abschließend noch nicht geklärt. Längsschnittstudien werden benötigt, um die langfristigen psychosozialen Folgen der COVID-19-Pandemie abzubilden.
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