Evaluation of two family-based intervention programs for children affected by rare disease and their families – research network (CARE-FAM-NET): study protocol for a rater-blinded, randomized, controlled, multicenter trial in a 2x2 factorial design

Background: Families of children with rare diseases (i.e., not more than 5 out of 10,000 people are affected) are often highly burdened with fears, insecurities and concerns regarding the affected child and its siblings. Although families caring for children with rare diseases are known to be at risk for mental disorders, the evaluation of special programs under high methodological standards has not been conducted so far. Moreover, the implementation of interventions for this group into regular care has not yet been accomplished in Germany. The efficacy and cost-effectiveness of a family-based intervention will be assessed. Methods/design: The study is a 2x2 factorial randomized controlled multicenter trial conducted at 17 study centers throughout Germany. Participants are families with children and adolescents affected by a rare disease aged 0 to 21 years. Families in the face-to-face intervention CARE-FAM, online intervention WEP-CARE or the combination of both will be treated over a period of roughly 6 months. Topics discussed in the interventions include coping, family relations, and social support. Families in the control condition will receive treatment as usual. The primary efficacy outcome is parental mental health, measured by the Structured Clinical Interview for DSM-IV (SCID-I) by blinded external raters. Further outcomes will be assessed from the parents’ as well as the children’s perspective. Participants are investigated at baseline, 6, 12 and 18 months after randomization. In addition to the assessment of various psychosocial outcomes, a comprehensive health-economic evaluation will be performed. Discussion: This paper describes the implementation and evaluation of two family-based intervention programs for Children Affected by Rare Disease and their Family’s Network (CARE-FAM-NET) in German standard care. A methodologically challenging study design is used to reflect the complexity of the actual medical care situation. This trial could be an important contribution to the improvement of care for this highly burdened group. Trial registration: German Clinical Trials Register: DRKS00015859 (registered 18 December 2018) and ClinicalTrials.gov: NCT04339465 (registered 8 April 2020). Protocol Version: 15 August 2020 (Version 6.1). Trial status: Recruitment started on 1 January 2019 and will be completed on 31 March 2021. © 2020, The Author(s)

Diagnose opérationnelle -l'ICD-lO, le DSM IV, l'OPD et leur signification en psychothérapie

Der Konflikt zwischen Deskription und Psychodynamik hat sich mit der Veröffentlichung von ICD-lO und DSM-IV für tiefenpsychologisch orientierte Psychotherapeuten verschärft. Um der Abkehr von diesen operationalisierten Klassifikationsschemata vorzubeugen, wird in diesem Artikel nach einem historischen Abriss und einer Darstellung operationalisierender Konzepte der Versuch unternommen, eine sinnvolle Verbindung von Deskription, Phänomenologie und Psychodynamik herzustellen.Schlüsselwörter: ICD-10, DSM-IV, OPD, Operationalisierung, QualitätssicherungSince publication of ICD-10 and DSM-IV for psychoanalytic oriented therapists the conflict between desription and psychodynamic has been intensified. To prevent a break with these operationalized systems of classification this paper - after outlining the history and the concepts of operationalizing - tries to connect description, phenomenology and psychodynamic in a meaningful way.Keywords: ICD-10, DSM-IV, Operationalized classification, Quality managementDès leurs débuts la psychiatrie et la psychothérapie ont eu à résoudre la tension entre deux perspectives, l’une descriptive et l’autre psychodynamique. Au cours des vingt dernières années on a progressivement adopté des schémas et classifications diagnostiques tels l’ICD-10 et le DSM-IV, qui permettent de décrire les troubles psychiques à un niveau opérationnel, "affranchi de toute considération étiologique". Les psychanalystes ont souvent considéré cette évolution comme désavantageuse, ce qui dans la pratique, les a incités à ne pas utiliser ces instruments de classification. D’autres approches, telle celle ayant servi de base à l’élaboration de l’OPD (Operationalisierte Psychodynamische Diagnostik  / "diagnostic psychodynamique opérationnalisé”), ont tenté d’introduire une dimension opérationnelle correspondant aux théories et concepts psychanalytiques, tout en visant à améliorer la manière dont ces diagnostics sont communicable, ainsi que leur fiabilité. Dans le présent article nous cherchons à mettre en évidence l’utilité et le sens de diagnostics associant description et perspective psychodynamique

Structure and process of university teaching in psychiatry: a field for methods of quality assurance and evaluation

Objective: Given the exceptional workload at a university psychiatric hospital and the current emphasis on clinical medicine and science, teaching is systematically being neglected.Methods: With the help of evaluation methods involving the completion of a questionnaire, lectures and seminars held during one semester at the Department for Child and Adolescent Psychiatry and Psychotherapy of the University Hospital Hamburg-Eppendorf were assessed separately by students and lecturers in terms of form, content, lecturers, and overall assessment.Results: Despite organizational shortcomings, the lectures and seminars were rated on average as good in all four assessment areas. Using a bivariate prediction model, it was possible to explain 46% of the variance in overall assessment. A surprisingly high concordance was found between the assessments by students and lecturers.Conclusion: Continuous and systematic evaluation of lectures and seminars ensures and improves the quality of current and future teaching methods

Der CSQH. Diagnostik für Klinik und Praxis

Schlarb A. Der CSQH. Diagnostik für Klinik und Praxis. In: Barkmann C, Schulte-Markwort M, Brähler E, eds. Klinisch-psychiatrische Ratingskalen für das Kindes- und Jugendalter. Hogrefe; 2009: 128-133

Der BDI im Kindes- und Jugendalter. Diagnostik für Klinik und Praxis

Schlarb A, Hautzinger M. Der BDI im Kindes- und Jugendalter. Diagnostik für Klinik und Praxis. In: Barkmann C, Schulte-Markwort M, Brähler E, eds. Klinisch-psychiatrische Ratingskalen für das Kindes- und Jugendalter. Hogrefe; 2009

Die ADS im Kinder- und Jugendalter. Diagnostik für Klinik und Praxis

Schlarb A, Hautzinger M. Die ADS im Kinder- und Jugendalter. Diagnostik für Klinik und Praxis. In: Barkmann C, Schulte-Markwort M, Brähler E, eds. Klinisch-psychiatrische Ratingskalen für das Kindes- und Jugendalter. Hogrefe; 2009