Satisfaction with health care services in young people with cerebral palsy in the transition period: results from a European multicenter study.

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.

Differences in participation between young adults with cerebral palsy and their peers: A cross-sectional multicentre European study.

BACKGROUND: Children and adolescents with disabilities are known to participate less in most areas of life than their non-disabled peers. OBJECTIVES: (1) To estimate differences in participation between young adults with cerebral palsy (CP) and their non-disabled peers; (2) to test the mediating role of financial difficulties and student status; (3) to test the moderating role of personal factors on participation difference; and (4) to test the moderating role of impairment. METHODS: A cross-sectional study was conducted in young adults [19-28 years] with CP (n = 228) and non-disabled peers (n = 2861) in France, Germany and Sweden. Participation was assessed using the Questionnaire of Young People's Participation adapted for young adults (QYPP-YA). Differences in five domains of participation were estimated using structural equation modeling with WLSMV method and bias-corrected bootstrap confidence intervals. RESULTS: Young adults with CP showed lower participation than others in all domains, with the largest difference in the "intimate relationships" domain (ß = 1.71 bcCI95[1.46; 1.95]). Student status mediated the difference in "intimate relationships", "interpersonal relationships" and "independence". Women showed greater differences than men on "independence". Impairments moderated difference in participation. The less severely impaired young adults showed no difference with their non-CP peers in "interpersonal relationships", "social life" and "independence", but made autonomous everyday decisions more often than their peers. CONCLUSIONS: Young adults with CP do not have the same opportunities to attain the participation level of non-CP people of the same age. Continuance of education could help to reduce participation difference in "interpersonal relationships" and "independence".

Implementation of a clinical long-term follow-up database for adult childhood cancer survivors in Germany: a feasibility study at two specialised late effects clinics.

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.

["I Didn't Think I would be Put under Pressure Like That." Supporting and Inhibiting Factors on Access Paths to Early Prevention Programs from Parents' View]. / "So unter Druck gesetzt zu werden, das hab' ich nicht gedacht." Fördernde und hemmende Einflüsse auf Zugangswege zu den Frühen Hilfen aus Sicht der Eltern.

BACKGROUND: The German early prevention programs called "Frühe Hilfen" are open to all families with children up to 3 years old and focus on families experiencing psychosocial stress and in need of support. Families with strong psychosocial risk factors are less likely to gain access to support programs than families with lower psychosocial risk factors. OBJECTIVE: This study identifies enabling and inhibiting factors for access to early prevention programs. MATERIALS AND METHODS: Qualitative partially structured interviews were carried out with parents (N=17) from families (N=13) who had taken part in psychosocial counseling after a professional had identified support needs and recommended an early prevention program. The interviews were transcribed and interpreted using content analysis according to Mayring. RESULTS AND DISCUSSION: Parents find clear and trustworthy communication during counseling sessions to be conducive to finding access to support programs. A barrier emerges when parents feel put under pressure or do not feel a need for support. Counseling should be offered at different points in time (e. g. pregnancy, puerperium). CONCLUSION: Open, trusting, and judgement-free communication in combination with participative decisionmaking is a promising approach when it comes to parent counseling.

Determinants of participation and quality of life of young adults with cerebral palsy: longitudinal approach and comparison with the general population - SPARCLE 3 study protocol.

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.

["I Think it is Important in Many Aspects in Life" - Young Adults' Perception of Participation]. / "Ich finde, das ist halt in vielen Punkten im Leben wichtig" ­ Subjektive Vorstellungen junger Erwachsener von Teilhabe.

PURPOSE: This study explores young adults' lay perception of participation. It focuses on the definition of the concept and the life areas in which the target group views it as important to take part in. METHODS: In guided group interviews (N=6), 20 young adults with and without disabilities were surveyed about their perception of participation. To also include people with more severe disabilities, proxy interviews (N=3) were conducted. The data of the interview were analyzed via qualitative content analysis based on Mayring. RESULTS: Participation is understood as being multifaceted and individually different. Six aspects of participation definition could be detected: togetherness; social inclusion/participation in society; open-mindedness/interest; equal opportunities/equal treatment; freedom of choice/autonomy; to have a voice. Besides that, seven areas of participation were mentioned as important for young adults: social environment; work/education; leisure; media; mobility; politics/finances; self-administration. CONCLUSION: Within young adults' complex perception of participation, social aspects are particularly important, besides equal rights and autonomy. Participation in sexuality and new media is given a crucial value, which is why these topics should be given more attention to. Life areas in which participation is described as relevant can vary depending on the interests of the individual. This demonstrates the subjective character of the concept, and the importance to consider the perception and preference of a person or a group.