Johannes Boettcher

Camouflaging refers to compensatory strategies used to conceal autistic traits and has been shown to negatively affect the mental health of autistic individuals. As no German instrument currently exists to measure camouflaging, this study aimed to validate a German translation of the Camouflaging Autistic Traits Questionnaire (CAT-Q/DE) in autistic and non-autistic adolescents. Confirmatory factor analyses tested the original three-factor CAT-Q model in German adolescents (N = 164 autistic, N = 482 non-autistic) using self- and parent-report data. Measurement invariance, rater agreement, test-retest reliability, and convergent validity were evaluated. The three-factor structure was confirmed, and scalar measurement invariance was fully established for sex and age group in both self- and parent-reports. CAT-Q/DE scores were higher in the autism sample than the non-autism sample, with gender differences observed only in the autism group, where females scored higher than males. CAT-Q/DE scores showed moderate to strong associations with anxiety, depression, and stress. Test-retest reliability was moderate in the non-autism sample. Rater agreement was moderate in the autism group and high in the non-autism group. The CAT-Q/DE is a reliable and valid self- and parent-report measure for camouflaging in German-speaking adolescents. Further research on camouflaging development and consequences is needed. ClinicalTrials.gov-NCT05989685.

Background: Children and adolescents with rare diseases represent a population that may be at risk for an avoidant/restrictive food intake disorder (ARFID). This study aimed to quantitatively examine the symptoms of ARFID in a sample of children and adolescents with rare diseases and their association with sociodemographic characteristics, eating disorder psychopathology, health-related quality of life (HRQoL), and mental health. Methods: In this observational study, data from 309 families of children with rare diseases drawn from a multicenter clinical study were used to estimate the prevalence of ARFID symptoms in children and adolescents aged 8–21 years in Germany was estimated via self-report ( n = 169) and parent report ( n = 502). Differences between the sample of individuals with rare diseases and normative population data, between those with and without ARFID symptoms, and between subgroups of rare diseases were investigated. Additionally, correlations between eating disorder psychopathology, sociodemographic, and psychosocial variables were investigated. Results: The prevalence of symptoms of ARFID was relatively high, with a relevant difference between self-report (3.6%) and parent report (10.2%). A vast proportion of self-reported ARFID symptoms were relevantly higher in children and adolescents with rare diseases than in normative population data. Moreover, the presence of ARFID symptoms in both self-report and parent report versions suggests that these symptoms may be consistent across varying severity levels of coexisting rare diseases. Both self-reported and parent reported ARFID symptoms in children and adolescents with rare diseases were associated with impaired HRQoL and mental health. Conclusion: The study underscores the importance of considering ARFID in children and adolescents with rare diseases. The comorbidity of rare diseases and ARFID may impact clinical care; however, healthcare professionals often lack sufficient knowledge of these patient populations. Therefore, further research and consideration in clinical practice are necessary. Trial registration: German Clinical Trials Register: DRKS00015859 (registered 18 December 2018) and ClinicalTrials.gov: NCT04339465 (registered 8 April 2020).

Background: Emotion regulation (ER) difficulties are common in autistic individuals and may contribute to co-occurring psychopathology during adolescence. However, age-group heterogeneity in existing research limits understanding of ER processes in autistic adolescents. Therefore, this mixed methods systematic review synthesizes current knowledge on ER in autistic adolescents aged 10–24 years. Methods: We systematically searched MEDLINE, PsycINFO, Web of Science, and Scopus for empirical studies on ER in autistic adolescents. 32 studies (including two qualitative) met inclusion criteria and were synthesized using a convergent integrated approach. Results: Autistic adolescents consistently exhibited more ER difficulties than non-autistic peers, which were associated with internalizing and externalizing symptoms. Greater autism symptom severity, lower theory of mind, and social challenges were frequently linked to lower ER, while no consistent associations with age, gender, or IQ were found. Few studies examined physiological or neurobiological factors, but evidence suggested associations between ER difficulties, lower heart rate variability, and atypical neural responses. Cognitive-behavioral and mindfulness-based interventions generally led to improvements in ER, though results varied and discrepancies between self- and proxy-reports were common. Conclusion: ER challenges are pronounced in autistic adolescents and are closely associated with mental health symptoms. While interventions show promise, future research should address measurement heterogeneity, examine neurobiological underpinnings, and include more longitudinal and ecologically valid designs. Trial registration: CRD42024529184 (registered April 06, 2024).

Background: Theoretical frameworks, such as the Family Stress Model, have been evaluated in various contexts; however, there is a lack of large-scale studies specifically focusing on families of children with rare diseases. Objective: To examine the applicability of the Family Stress model within a large-scale sample of families of children with rare diseases. Methods: The potential predictors of children’s mental health in a multicenter study of n = 872 parents of children with rare diseases were investigated. Factors contributing to children’s mental health within the Family Stress Model were investigated via cross-sectional multilevel path model. Results: Relevant associations were found among all variables. The multilevel model based on our data only partially supported the Family Stress Model. In our model, the quality of the parental relationship was not relevantly associated with stress and depressive symptoms. Conclusion: Our findings show that the Family Stress Model is not supported entirely in a multilevel analysis of families of children with rare diseases. Nevertheless, the results underscore the importance of focusing on alleviating parental stress, which could diminish intra-family psychopathology. Clinical trial registration: The study was registered on September 21, 2024, with the identifier number NCT04382820 at ClinicalTrials.gov .

Parents caring for children with rare diseases are more impaired regarding health‐related quality of life (HRQoL) and mental health than healthy controls and norm data. To address the research gap in psychological care for these parents, this study evaluates the effectiveness of two family‐based interventions. The children affected by rare disease and their families network (CARE‐FAM‐NET) study is a multicenter randomized controlled 2 × 2 factorial trial for affected families with children (0–21 years). This paper focuses on evaluating the impact of two interventions, one face‐to‐face (CARE‐FAM) and one online (WEP‐CARE), on the HRQoL and mental health of parents. One thousand, one hundred sixty‐eight parents participated: TAU = 291, CARE‐FAM = 296, WEP‐CARE = 300, and CARE‐FAM + WEP‐CARE combined = 281. Data were collected at four time points over a period of 18 months using standardized questionnaires. The results had to be interpreted exploratively. The results indicate that there are no clinically relevant differences in the parents' HRQoL and mental health between the treatment groups. However, time‐dependent differences in the intervention effects for WEP‐CARE were observed. Although the results did not show clear relevant differences between conditions, trends in improvement in HrQoL and mental health were identified. CARE‐FAM shows a greater reduction in parental distress and WEP‐CARE shows a greater distortion of distress, particularly at T3 and T4. Given the exploratory nature of this study, it highlights the urgent need for further confirmatory research in this area.

Background: Abdominal tumors rarely occur in childhood but are associated with great psychological stress for patients and their families. Parents playing a central role in their children’s treatment may experience adverse effects on their Health-Related Quality of Life (HRQoL) and mental health due to the children’s illness and required treatment. Given the limited knowledge of the psychosocial burden of parents with children suffering from solid abdominal tumors, this study aims to assess their HRQoL and mental health along with the impact of various psychosocial factors. Methods: A cross-sectional cohort study was carried out involving 54 parents of children with solid abdominal tumors who had surgery at the University Medical Center Hamburg-Eppendorf in Germany. The results were compared with 46 parents of children undergoing routine surgeries without a prior tumor diagnosis, and with normative values. Data were obtained using standardized questionnaires. Results: Parents of the index group showed significantly worse HRQoL and limited mental health. Furthermore, they showed significantly higher parental burden in several subscales and less social support in comparison with the control group. Conclusions: Considering the lower parental HRQoL and the central role parents play in their children’s lives, it is crucial to include prevention and intervention measures for parents as part of a multimodal treatment regime for children with solid pediatric abdominal tumors.

The quality of dyadic Parent–Child Communication (PCC) between parents and their adolescent children may be important for the adolescent’s general development and mental health during adolescence. Since German instruments for measuring PCC are still lacking, this study aimed to validate the German translation of the Parent-Adolescent Communication Scale (PACS), an internationally established self-report questionnaire. To examine the theoretical-based two-factor model of the PACS in a German population sample of 1044 parent-adolescent dyads, confirmatory factor analyses were used. Moreover, the cross-group measurement invariance of the instrument was assessed. Two clinical samples were used to assess discriminative validity. Bland–Altman plots were used to asses parent-adolescent agreement. The two-factor structure of the PACS was supported. Scalar measurement invariance was established for parent age groups and adolescent gender but not for adolescent age groups and parent gender. Convergent and divergent validity were established. Discriminative validity was only established for the adolescent version in the adolescent psychiatry sample. Test–retest reliability was satisfactory, and rater agreement was medium. The German translation of the PACS is a reliable and valid measurement to assess parent-adolescent communication quality per self-report. Research directions include the concordance discrepancy in clinical samples and further investigation of changes in parents’ and adolescents’ perspectives on communication problems and open communication. Registration: NCT05332236 (clinicaltrials.gov), first registered 2022-04-11.