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We aimed to identify the prevalence of affective and anxiety disorders across different rare disease and identify correlates of psychopathology. We performed a systematic review and meta-analysis. We systematically searched Medline, PSYNDEX, PsycINFO for observational studies examining clinically diagnosed affective and/or anxiety disorders in adults with rare chronic diseases. Two researchers reviewed titles and abstracts independently and, for eligible studies, independently extracted data. The prevalence rates were pooled using a random intercept logistic regression model. We published a review protocol (http://www.crd.york.ac.uk/PROSPERO/display_record.php?ID=CRD42018106614CRD42018106614). We identified and screened 34 402 records for eligibility and considered 39 studies in the qualitative and 37 studies in the quantitative analysis, including N = 5951 patients with 24 different rare diseases. Heterogeneity between studies was large. Prevalence rates ranged widely between studies, with pooled prevalence estimates of 13.1% (95% CI 9.6–17.7%; I2 = 87%, p < 0.001) for current and 39.3% (95% CI 31.7–47.4%; I2 = 84%, p < 0.001) for lifetime major depressive disorder, 21.2% (95% CI 15.4–28.6%; I2 = 90%, p < 0.001) for current and 46.1% (95% CI 35.8–56.8%; I2 = 90%, p < 0.001) for lifetime affective disorders, and 39.6% (95% CI 25.5–55.6%; I2 = 96%, p < 0.001) for current and 44.2% (95% CI 27.0–62.9%; I2 = 94%, p < 0.001) for lifetime anxiety disorders. Sensitivity analyses excluding studies of low quality revealed nearly the same results. We conducted the first systematic review examining affective and anxiety disorders in adults with different rare diseases and found high prevalence rates. Supporting patients in disease adjustment can be crucial for their overall health and well-being.

Background Psychosocial support is a crucial component of adequate rare disease care, but to date psychosocial support needs of this patient population are insufficiently met. Within Q.RARE.LI, we strive to evaluate the effectiveness of a structured, transdiagnostic, and location-independent psychosocial support intervention in routine care of patients with rare autoimmune liver diseases in five countries and prepare its implementation. Methods Within an effectiveness-implementation hybrid trial, we aim to a) investigate the effectiveness of the intervention in routine care in five diverse healthcare systems and b) assess implementation outcomes, examine and prepare the implementation context, and develop country-specific implementation strategies. To assess effectiveness, we will include N  = 240 patients with rare autoimmune liver diseases. Within a two-armed randomized controlled trial (allocation ratio 1:1), we will compare structured and peer-delivered psychosocial support in addition to care-as-usual (CAU) with CAU alone. Outcomes will be assessed via electronic database entry prior to intervention, directly after, and at a three-month follow-up. Our primary effectiveness outcome will be mental health-related quality of life at post-assessment. Secondary outcomes include depression and anxiety severity, perceived social support, helplessness, and disease acceptance. Implementation outcomes will be assessed within a mixed-methods process evaluation. In a quantitative cross-sectional survey, we will examine perceived acceptability and feasibility in patients, peer-counselors, and healthcare providers involved in delivery of the intervention. In qualitative focus groups, we will analyze the implementation context and determine barriers and facilitators for implementation with different stakeholders (patients and/or representatives, peer-counselors, healthcare providers, health insurers). Based on these results, we will derive country-specific implementation strategies and develop a concrete implementation plan for each country. Discussion The intervention is expected to help patients adjust to their disease and improve their mental quality of life. The transdiagnostic and location-independent program has the potential to reach patients for psychosocial support who are usually hard to reach. By preparing the implementation in five countries, the project can help to make low-threshold psychosocial support available to many patients with rare diseases and improve comprehensive healthcare for an often neglected group. Trial registration ISRCTN15030282

Background There are a high number of adolescents who are at risk of developing an eating disorder. There is, therefore, a strong need to implement prevention programs aimed at reducing the incidence of eating disorders at this critical age. Among other factors, successful prevention programs have been shown to be interactive, carried out by professionals, focused on educational as well as psychosocial elements and have taken risk factors as well as resources into account. The objective of this study protocol is to present the design of a new prevention program for eating disorders in schools. Methods/Design The gender-adapted prevention program extends over six school hours. It contains interactive and educational elements about eating disorders and their treatment. Participants pass through different exercises and reflect on the influences of the media, self-esteem, body perception and individual resources. A cluster-randomized controlled trial is chosen to evaluate the program. Based on an estimated effect size of d = 0.3 a total of 1848 participants are enrolled in the study. Eating disorder risk, internalization of Western beauty ideals, body dissatisfaction, self-concept as well as anxiety and symptoms of depression are measured before and immediately after the intervention as well as at a six-month follow-up. In addition, the intervention group evaluates the different components of the program. Discussion The study intends to test the practicability and efficacy of an interactive, gender-adapted ED prevention program in schools. Moreover, it will provide valuable information about the occurrence of eating disorder risk factors in school-aged children. Trial registration ISRCTN97989348 ; Registered 19 December 2012.

Hintergrund: Psychosoziale Unterstützung ist ein essenzieller Bestandteil der Versorgung von Menschen mit seltenen Erkrankungen, adäquate Angebote sind für diese Patient:innengruppe aber kaum verfügbar. Mit Q.RARE.LI wollen wir die Wirksamkeit eines neuen psychosozialen Unterstützungsangebots für Menschen mit seltenen Erkrankungen in der Routineversorgung von Patient:innen mit autoimmunen Lebererkrankungen in fünf Ländern untersuchen und die Implementierung vorbereiten. Methode: Das sechswöchige Programm wurde auf Grundlage von Bedürfnissen von Patient:innen mit seltenen Erkrankungen entwickelt und kombiniert Peer-Unterstützung und strukturierte Selbsthilfe. Teilnehmende erhalten ein auf Akzeptanz und Commitment Therapie basierendes Manual, welches sie selbstständig von Zuhause aus bearbeiten. Unterstützend findet ein wöchentliches 30-minütiges strukturiertes Telefongespräch mit geschulten und supervidierten Peer-Beratenden statt, welche ebenfalls von einer seltenen Erkrankung betroffen sind. Eine erste Evaluationsstudie zeigte, dass das Programm unter anderem zu einer Verbesserung der Lebensqualität und Krankheitsbewältigung führte und sehr gut angenommen wurde. Ergebnisse: Im Rahmen von Q.RARE.LI wollen wir a) die Wirksamkeit der Intervention in der Routineversorgung fünf unterschiedlicher Gesundheitssysteme und b) die Implementierbarkeit des Programms untersuchen sowie länderspezifische Implementierungsstrategien ableiten. In eine zweiarmigen randomisierten kontrollierten Studie mit drei Messzeitpunkten (Prä, Post und 3-Monats-Follow-Up) werden N = 240 Menschen mit seltenen autoimmunen Lebererkrankungen eingeschlossen. Primäres Outcome ist die mentale gesundheitsbezogene Lebensqualität (SF-12) zur Post-Erhebung. Sekundäre Outcomes umfassen Depressivität (PHQ-9), Ängstlichkeit (GAD-7), soziale Unterstützung (F-SOZU), Hilflosigkeit und Krankheitsakzeptanz (ICQ). Die Implementierbarkeit wird mittels einer mixed-methods Prozessevaluation bei Patient:innen, Peer-Beratenden und beteiligten Gesundheitsdienstleister:innen untersucht. Diskussion: Wir erwarten, dass die Intervention Patient:innen dabei hilft, den Umgang mit ihrer Krankheit und die mentale Lebensqualität zu verbessern. Das krankheitsübergreifende und ortsunabhängige Programm hat das Potenzial, niederschwellige psychosoziale Unterstützung für viele Menschen mit seltenen Erkrankungen zugänglich zu machen und damit die ganzheitliche Gesundheitsversorgung einer oft unterversorgten Patient:innengruppe zu verbessern.