Chirine Cytera’s research while affiliated with University of Lübeck and other places

Background In Germany, around 2.250 children and adolescents are diagnosed with cancer each year. Despite generally positive long-term survival rates, many patients must cope with late effects of the disease and its treatment. This highlights the need for a well-structured, long-term approach addressing both physical and mental health issues. Currently, the German healthcare system lacks such comprehensive structures. Our study aims to evaluate the effectiveness of a structured, multidisciplinary long-term approach compared to conventional “treatment as usual” (TAU). Methods A prospective, multicenter study with ten pediatric university clinics in Germany will be conducted. The cluster-randomization takes place at the clinic level. Children and adolescents who completed their cancer treatment at least five years ago and their parents will be eligible to participate. While the control group (CG) receives TAU, the intervention group (IG) participates in a structured program. This program includes risk-based medical treatment and psychosocial interventions tailored to each patient’s individual needs within a two-month timeframe. The primary outcome is the improvement of self-efficacy. Secondary outcomes are satisfaction with health care, improvement of health-related quality of life (HRQoL), reduction of mental health problems, and improvement of transition readiness. Discussion This approach has the potential to optimize the health care for individuals who survived cancer during childhood or adolescence. It addresses the challenges of overuse, underuse, and misuse of health care resources. By considering both medical and psychosocial factors and promoting increased self-efficacy, independent from parental involvement, it may facilitate a smoother transition to adult medicine and enhance adherence to lifelong aftercare. If proven successful, this approach will contribute to the integration of multidisciplinary strategies into standard healthcare practice. Trial registration German Clinical Trials Register DRKS00029269. Registered on December 23, 2022.

Background The Questionnaire of Young People's Participation (QYPP) was developed for use in children and adolescents. To track participation throughout transition from childhood to adulthood, we adapted it for young adults using focus groups. Aim of this study was to validate this measure, the QYPP–Young Adults (QYPP‐YA). Methods We recruited young adults with cerebral palsy (CP) and a representative, same‐aged sample of the general population (GP). The GP‐sample was split into two equivalent subsamples, one part to identify the factor structure via exploratory factor analysis and another part to test the resulting model via confirmatory factor analysis. Reliability and different forms of validity were investigated. Results The final QYPP‐YA includes 17 items assigned to six domains (Autonomy, Independency, Intimate Relationships, Interpersonal Relationships, Social Life, Online Communication). Scales show satisfying internal consistencies in the CP‐sample and in the GP‐sample, except for ‘Online Communication’. Convergent, divergent and known‐group validity were confirmed. Conclusions The QYPP‐YA instrument features promising psychometric characteristics to assess key domains of participation in healthy and disabled young adults. It provides a multidimensional, economic and sound assessment for use in population surveys and clinical trials.

Background Young people with chronic health conditions and disabilities rely on the healthcare system to maintain their best possible health. The appropriate delivery and utilization of healthcare services are key to improve their autonomy, self-efficacy and employment outcomes. The research question of our study is directed toward investigating if poor availability and accessibility of healthcare services in general, as identified by unmet needs in healthcare, are associated with dissatisfaction with healthcare. Methods Within a European multicenter observational study, 357 young adults with cerebral palsy aged 19–28 were included. We assessed special healthcare needs, utilization of healthcare services, and satisfaction with healthcare applying the short-form of the YHC-SUN-SF, environmental and social variables (EAEQ) as well as indicators for severity of condition and functionality (e.g., GMFCS) of these participants based on a self-, assisted self- or proxy-reports. We used correlation analyses to explore associations between satisfaction with healthcare and respective indicators related to availability and accessibility of healthcare services as well as severity of the condition. In addition, we included reference values for satisfaction with heath care from young adults with various chronic conditions assessed within population-based surveys from some of the European countries included in the study. Results We identified several unmet healthcare needs, especially for widely used and established services (e.g., physical therapy). Satisfaction with healthcare (YHC-SUN-SF general and subscale scores) was moderate to high and almost consistently better for the sample of young adults with cerebral palsy as compared to reference values for young adults with various chronic conditions assessed within general population surveys). Correlation coefficients between satisfaction with healthcare and utilization of services and (unmet) healthcare needs were low, also with different indicators for severity of the condition or functionality. Conclusion Young adults with cerebral palsy reports of unmet healthcare needs varied largely but showed substantial deficits in some aspects. This seems to have no impact on the satisfaction with healthcare those patients currently receive. We conclude that these are two different constructs and somewhat independent indicators to evaluate the quality of healthcare. Clinicians and other practitioners should consider this distinction when monitoring patient needs in their daily practice.

Purpose Childhood cancer survivors (CCS) are at risk for increased morbidity and reduced quality of life associated with treatment-related late effects. In Germany, however, only a few of the more than 40,000 CCS registered in the German Childhood Cancer Registry (GCCR) currently benefit from adequate clinical long-term follow-up (LTFU) structures. To establish a comprehensive knowledge base on CCS’ long-term health in Germany, a database was developed in cooperation with the GCCR. Following a first evaluation phase at two German university centres, this database will be implemented more widely within Germany allowing longitudinal documentation of clinical LTFU data. Methods The feasibility study cohort comprised 208 CCS aged 18 or older whose medical, mental and psychosocial health data were collected during routine LTFU or first clinic visits in adult care. CCS were enrolled from 04/2021 to 12/2022, and data entry was completed by 03/2023. Descriptive data analysis was conducted. All CCS were stratified into three risk groups (RG) based on their individual risk for developing late effects resulting from their respective diagnoses and treatments. Results Chronic health conditions of various organ systems associated with late and long-term effects of cancer therapy affected CCS in all RG supporting the clinical relevance of risk-adapted LTFU. Enrolment into the database was feasible and broadly accepted amongst CCS. Conclusion Implementation of a clinical follow-up care infrastructure and database in Germany will pave the way to collect clinically evaluated and regularly updated health data of potentially over 40,000 German CCS and facilitate future national and international cooperation.

Purpose: Childhood cancer survivors (CCS) are at risk for increased morbidity and reduced quality of life associated with treatment-related late effects. In Germany, however, only a few of the more than 40,000 CCS registered in the German Childhood Cancer Registry (GCCR) currently benefit from adequate clinical long-term follow-up (LTFU) structures. To establish a comprehensive knowledge base on CCS’ long-term health in Germany, a database was developed in cooperation with the GCCR. Following a first evaluation phase at two German university centres, this database will be implemented more widely within Germany allowing longitudinal documentation of clinical LTFU data. Methods: The feasibility study cohort comprised 208 CCS aged 18 or older whose medical, mental and psychosocial health data were collected during routine LTFU or first clinic visits in adult care. CCS were enrolled from 04/2021 to 12/2022, and data entry was completed by 03/2023. Descriptive data analysis was conducted. All CCS were stratified into three risk groups (RG) based on their individual risk for developing late effects resulting from their respective diagnoses and treatments. Results: Chronic health conditions of various organ systems associated with late and long-term effects of cancer therapy affected CCS in all RG supporting the clinical relevance of risk-adapted LTFU. Enrolment into the database was feasible and broadly accepted among CCS. Conclusion: Implementation of a clinical follow-up care infrastructure and database in Germany will pave the way to collect clinically evaluated and regularly updated health data of potentially over 40,000 German CCS and facilitate future national and international cooperation.

Zusammenfassung Hintergrund Frühe Hilfen bieten präventive Angebote an und sind offen für alle Familien mit Kindern bis 3 Jahren, besonders jedoch für Familien mit Belastungen, welche zu Unterstützungsbedarf führen. Im Vergleich zu Familien mit geringen Belastungen finden psychosozial stark belastete Familien weniger häufig einen Zugang zu den Frühen Hilfen. Ziel der Studie Untersucht werden fördernde und hemmende Einflüsse auf Zugangswege zu den Frühen Hilfen. Material und Methoden Es wurden teilstrukturierte, leitfadengestützte Einzelinterviews (N=17) mit Familien (N=13) geführt. Die Eltern hatten an einem Beratungsgespräch teilgenommen, in welchem eine Fachkraft Unterstützungsbedarf festgestellt und Frühe Hilfen-Angebote empfohlen hatte. Die Interviews wurden mittels qualitativer Inhaltsanalyse, angelehnt an Mayring, ausgewertet. Ergebnisse und Diskussion Als förderlich für den Zugang zu Angeboten der Frühen Hilfen bewerten die Eltern eine vertrauensvolle, klare Kommunikation in den Beratungsgesprächen. Eine Barriere entsteht, wenn sie sich unter Druck gesetzt fühlen oder selbst keinen Bedarf an Unterstützung empfinden. Beratungsgespräche sollten zu unterschiedlichen Zeitpunkten (z. B. Schwangerschaft, Wochenbett) angeboten werden. Schlussfolgerung Feinfühligkeit, wertfreie und vertrauensvolle Kommunikation auf Augenhöhe und ein Befähigungsansatz im Umgang mit Eltern sind in Beratungssituationen erfolgsversprechend.

Background Effective inclusion in society for young people with disabilities is increasingly seen as generating opportunities for self-development, and improving well-being. However, significant barriers remain in the vast majority of activities meaningful for young adults. Research argues that various personal (disabilities, health) and environmental (access to the resources needed, accessible environment, discrimination, lack of personal economic independence) factors contribute to limited participation. However, previous studies conducted in young people with cerebral palsy (CP) mainly investigated the transition period to adulthood, and did not fully consider the whole range of impairment severity profiles or environmental barriers. In this study, we will use the follow-up of the SPARCLE cohort and a comparison group from the general population (1) to investigate the impact of the environment on participation and quality of life of young adults with CP, (2) to determine predictors of a successful young adulthood in educational, professional, health and social fields, (3) to compare quality of life and frequency of participation in social, work and recreational activities with the general population, (4) to document on participation and quality of life in those with severe disabilities. Methods The SPARCLE3 study has a combined longitudinal and cross-sectional design. Young adults with CP aged 22 to 27 years in 6 European regions previously enrolled in the SPARCLE cohort or newly recruited will be invited to self-complete a comprehensive set of questionnaires exploring participation (daily life and discretionary activities), health-related quality of life, body function, personal factors (health, personal resources), and contextual factors (availability of needed environmental items, family environment, services provision) during home visits supervised by trained researchers. Proxy-reports or adapted questionnaires will be used for those with the most severe impairments. The recruitment of a large group from the general population (online survey) will enable to identify life areas where the discrepancies between young people with CP and their able-bodied peers are the most significant. Discussion This study will help identify to what extent disabilities and barriers in environment negatively affect participation and quality of life, and how previous valued experiences during childhood or adolescence might modulate these effects.

Zusammenfassung Ziel Die Studie untersucht die subjektiven Vorstellungen junger Erwachsener von Teilhabe. Im Fokus stehen dabei deren Verständnis von Teilhabe sowie Lebensbereiche, in denen diese von der Zielgruppe als bedeutsam erlebt wird. Methodik In leitfadengestützten Gruppeninterviews (N=6) wurden 20 junge Erwachsene mit und ohne Beeinträchtigung zu ihren Vorstellungen von Teilhabe befragt. Um auch schwerer beeinträchtigte Personen indirekt einzuschließen, wurden zusätzlich deren Stellvertreter in Einzelinterviews (N=3) befragt. Das Material wurde mittels qualitativer Inhaltsanalyse nach Mayring ausgewertet. Ergebnisse Teilhabe wird vielseitig und individuell unterschiedlich verstanden. Sechs Aspekte einer Begriffsbestimmung konnten ermittelt werden: Miteinander; soziale Einbindung/Teilnahme an der Gesellschaft; Aufgeschlossenheit/Unvoreingenommenheit/Interesse; gleiche Möglichkeiten/ Gleichbehandlung; Entscheidungsfreiheit/Autonomie; Mitbestimmung/Mitsprache. Teilhabe ist für die Befragten in sieben Lebensbereichen bedeutsam: soziales Umfeld; Arbeit/Bildung; Freizeit; Medien; Mobilität; Politik; Finanzen/Selbstverwaltung. Schlussfolgerung In den komplexen Vorstellungen junger Erwachsener von Teilhabe sind insbesondere soziale Aspekte sowie Gleichberechtigung und Selbstbestimmung von Bedeutung. Teilhabe im Bereich Sexualität und neue Medien wird ein entscheidender Wert beigemessen, weshalb diese vermehrt Beachtung finden sollten. Die Lebensbereiche, in denen Teilhabe als relevant beschrieben wird, können je nach Interessen des Individuums variieren, was auf den subjektiven Charakter des Konzeptes hinweist und die Bedeutsamkeit aufzeigt, die jeweiligen Vorstellungen und Präferenzen einer Person oder Personengruppe zu berücksichtigen.

Background The concept of participation is central to the United Nations Convention on the Rights of Persons with Disabilities (CRPD) and the German Social Security Legislation. The aim of all measures and interventions is to increase children’s and adolescents’ involvement in life situations. This applies to the field of child and adolescent rehabilitation and social pediatrics as well as an inclusive education and child welfare systems.Objective The term participation is defined and the conceptual background as well as important related aspects, such as family orientation and process participation are explained.Material and methodsThe results of a literature search, data from the statistics of funding agencies and current qualitative empirical results from interview studies are presented.ResultsThe paradigm shift from improvement of functioning to participation and family-oriented care forges progress; however, the transformation is affected by slow adaption of the social legislation and the complex reorganization of segregated services for children and adolescents with and without chronic health conditions and disabilities.Conclusion Major efforts in the social legislation, cooperation of social insurances, service providers, the education system and child welfare systems are needed to overcome the historical segregation of services along the lines of types of disabilities and settings.