Miriam Tariba Richter

Background: People with intellectual disabilities have a higher prevalence of certain chronic diseases and higher avoidable mortality. Some of these diseases or their exacerbation could be avoided through disease prevention and health promotion interventions, as people with intellectual disabilities have high rates of unhealthy eating habits, stress, lower levels of mobility and similar addictive behaviours to the general population. At the same time, they face significant barriers to accessing preventive healthcare interventions.Objective: To test the effectiveness of an advanced practice nurse-led case management and prevention intervention for people with intellectual disabilities on health status after 12 months.Design: Two-arm parallel randomised-controlled trial with waiting list.Setting(s): Community setting in an urban area of Hamburg, Germany.Participants: 214 adults with an ICD-10 diagnosis F70-79 and a care level below 4 according to German Social Code XI, who were not at the end-of-life.Methods: The intervention consisted of case management, social space analysis, prevention planning and counselling in four outreach home visits on the topics of addiction, mobility, nutrition and stress. The control group received usual care. Participants were allocated using permuted block randomisation. The primary outcome was health status (WHODAS, 0-100) at 12 months (t2). Secondary outcomes were health status at 6 months (t1), resilience (RS-11, 7-77) and health-related quality of life (EQ5D, 0-100) at t1 and t2. Lower scores indicate better health status and higher scores better resilience and quality of life. Raters and analysts were blinded. Analyses were performed with ANCOVAs and Bonferroni correction to α= 0.025 and 97.5% confidence intervals (CI).Results: We randomised 107 participants to each group. For the primary outcome health status at t2 (n=167), the mean difference (MD) was -4.38 (CI: -8.13 to -0.62, ή²= 0.041). For the secondary outcome of health status at t1, the MD was -1.06 (CI: -3.51 to 5.62, ή²= 0.002). For resilience, the MD was +0.51 (CI: -3.11 to 2.10, ή²= 0.001) at t1 and +2.70 (CI: -5.78 to 0.39 ή²=0.022) at t2. For health-related quality of life, a MD of +0.72 (CI: -5.88 to 7.32, ή²=0.000) at t1 and -1.19 (CI: -8.71 to 6.33 ή²= 0.001) at t2 were measured.Conclusions: Overall, a nurse-led intervention focusing on prevention and case management can lead to a statistically significant change in health after 12 months, but not for the secondary outcomes. The current literature on minimal clinically important differences indicates that the effect is also clinically important.

Zusammenfassung: Hintergrund: Alle Menschen haben laut der World Health Organization (WHO) ein Anrecht auf ein Höchstmaß an Gesundheit und eine adäquate Gesundheitsversorgung. Aber nicht alle Menschen können dieses Recht gleichermaßen nutzen. Trans* Menschen erfahren im Vergleich zu cis Menschen ungleiche Gesundheitschancen. Sie haben generell ein hohes Diskriminierungsrisiko, v. a. im Gesundheitswesen, wodurch ihre Gesundheit gefährdet wird. Sie sind intersektional und vielfältig Diskriminierung, „minority stress“ und Normierungen ausgesetzt und gelten deshalb als vulnerable Zielgruppe. Fragestellung: Daher war es das Anliegen des Projekts ‚Gesundheitsförderung in Lebenswelten von trans* Menschen‘, auf Basis wissenschaftlich generierter und evidenzbasierter Daten der Frage nachzugehen, wie die Gesundheit von trans* Menschen in ihren Lebenswelten gefördert werden kann. Studiendesign und Untersuchungsmethoden: Mittels eines qualitativen Forschungsdesigns wurden drei Zielgruppen, insbesondere trans* Menschen, u. a. mit episodischen Interviews befragt. Ergebnisse: Die Ergebnisse verdeutlichen, dass die Gesundheitsversorgung von trans* Menschen einer deutlichen Verbesserung bedarf, da sie gesundheitsabträglich ist. Für eine adäquate Gesundheitsförderung müssen einerseits die Resilienz von trans* Menschen gestärkt und andererseits gesundheitsförderliche Strukturen, beispielsweise in weiteren Lebenswelten wie der Arbeitswelt oder im Sport, ausgebaut werden. Tätige des Gesundheitswesens spielen dabei eine besondere Rolle, da sie dazu beitragen können, vielfältige Diskriminierung und die erhebliche (Zugangs‑)Barriere für trans* Menschen abzubauen und so u. a. die (Regel‑)Versorgung zugänglicher zu machen. Schlussfolgerung: Entsprechende Handlungsempfehlungen wurden aus den Ergebnissen abgeleitet, um mögliche Veränderungen zu begünstigen und damit ungleichen Gesundheitschancen von trans* Menschen entgegenzuwirken.

Background: Adults with intellectual disabilities have a higher prevalence of unhealthy eating habits, stress, low levels of mobility, and comparable drug consumption as the general population. Consequently, they suffer from several chronic diseases earlier and more often, but there are fewer prevention and health promotion services including this population. The goal of this study is to determine if an advanced practice nursing approach in the community with home visits is an effective way to improve the health status of adults with intellectual disabilities. Methods: We will conduct a randomized-controlled trial with waiting list design in Hamburg, Germany. Inclusion criteria are diagnosis ICD F70-F79 and exclusion criteria are care level > 3 according to the German Social Code XI or being at the end-of-life. Participants will be block randomized. The intervention consists of advanced practice nurses performing case management, social space analysis, prevention planning, and counseling through four outreach home visits on nutrition, mobility, addiction, and stress. Comparison is usual care. The primary outcome is health status (WHODAS) after 12 months. Secondary outcomes are health-related quality of life (EQ-5D) and resilience (RS-11) after 6 and 12 months. The calculated sample size is 256 with an estimated dropout of 30%. Raters and analysts will be blinded. Analysis will be performed using ANCOVAs. Discussion: By providing case management and utilizing their nursing expertise, advanced practice nurses will provide valuable input and guidance on prevention and health promotion for people with intellectual disabilities. They will close the gap between health and social care, which is prominent in Germany, through cooperation between the existing care sectors. The findings will be disseminated in peer-reviewed journals and presented at national and international conferences. Trial registration: German Clinical Trials Register, DRKS00028771, registered 4 July 2022, Universal Trial Number: U1111-1277–0595.