TRANS-DISAB - Meeting the challenges of a successful transition in young people with disabilities: participation, health and quality of life in a life course perspective
Final Report Abstract
TRANS-DISAB intended to address the needs of a growing population of people with disabilities during the critical period of the transition to adulthood and to better understand the impact of the physical, social and attitudinal environment on participation in society and quality of life in young adults with cerebral palsy (CP). Specific objectives included (1) measuring the concept of participation and validating the instrument used in this study, (2) comparing the mental health and quality of life of young people with CP with the general population (3) studying the differences in participation between young adults with and without CP, (4) conducting a longitudinal analysis of the quality of life since childhood, and (5) examining the availability and satisfaction with health care services. Self- or proxy-reported data from 198 young people with CP (19-28 years) followed up from childhood as part of the European SPARCLE cohort or newly recruited was collected by interview. For longitudinal analyses regarding quality of life, only participants with CP who had participated in the first and/or second wave of SPARCLE were included. Additionally, a sample of about 4.000 young people of similar age from the general population (GP) living in France and Germany as well as a sample of healthy peers (“buddies”) selected by the young adults with CP was recruited. A common database was established and data from other SPARCLE countries was integrated. Following theoretical considerations and a qualitative study, a new instrument for measuring participation in young adults was developed (QYPP-YA). It showed satisfying psychometric properties and provides a multidimensional, economic and sound assessment for use in population surveys as well as clinical trials. Similar expressions of QoL and positive and negative mental health outcomes in young adults with CP and the general population were found which is largely in line with previous findings. Surprisingly, young adults with CP demonstrated lower levels of depressive symptoms. Further qualitative and quantitative studies are necessary to examine understanding, perception, and regulation of mental health in populations with disabilities. Results concerning participation showed higher restrictions in all domains for young adults with CP as compared to the GP. However, when considering those with milder impairment, these differences were greatly reduced, which points to the adaptive capacity of young adults with CP. Longitudinal analyses of a subsample of young adults with CP from previous SPARCLE waves showed that trajectories of QoL from childhood to young adulthood differ with regard to the domain of QoL (psychological vs. social). Further results indicate, that, despite moderate to high levels of satisfaction with health care, unmet health care needs exist with sometimes substantial deficits. Differences of QoL and participation between young adults with CP and the GP were modified by personal factors (e. g. sex, housing, country, parental education level, financial difficulties). Within the group of young adults with CP, these outcomes were greatly dependent on factors related to the condition of CP (e. g. motor impairment, pain, the ability to self-report, seizures). No association of sociodemographic variables on unmet health care needs was found within the group of young adults with CP. Self-efficacy emerged as an interesting factor as higher values were associated with better participation as well as less severe impairment. The mediating role of self-efficacy should be further investigated since promoting self-efficacy may contribute to improvements of QoL, mental health, and participation of young adults with CP. The comprehensive, collaborative European database for population-based health research in the area of young people with disabilities that was created within TRANS-DISAB offers a wide range of possibilities for scientists to explore research questions with significant societal impact. The results of this project may contribute to changes in health care practices in dealing with young adults with CP, increase the knowledge of patients and patients’ organizations about this condition and enhance empowerment and self-efficacy of individuals with disabilities. Finally, increasing the knowledge on disabilities of the general public may help to improve acceptance and decrease stigmatization, and thus offer better chances for employment and participation for young adults with disabilities in both partner countries.
Publications
- (2021). 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. BMC Neurology, 21(1), 254
Arnaud, C., Duffaut, C., Fauconnier, J., Schmidt, S., Himmelmann, K., Marcelli, M., Pennington, L., Alvarelhão, J., Cytera, C., Rapp, M., Ehlinger, V., & Thyen, U.
(See online at https://doi.org/10.1186/s12883-021-02263-z) - (2021). Disparity of child/parent-reported quality of life in cerebral palsy persists into adolescence. Developmental Medicine and Child Neurology, 63(1), 68–74
Sentenac, M., Rapp, M., Ehlinger, V., Colver, A., Thyen, U., & Arnaud, C.
(See online at https://doi.org/10.1111/dmcn.14638) - (2021). Quality of Life in Young Adults With Cerebral Palsy: A Longitudinal Analysis of the SPARCLE Study. Frontiers in Neurology, 12, 733978
Vidart d'Egurbide Bagazgoïtia, N., Ehlinger, V., Duffaut, C., Fauconnier, J., Schmidt, S., Thyen, U., Himmelmann, K., Marcelli, M., & Arnaud, C.
(See online at https://doi.org/10.3389/fneur.2021.733978) - (2021). „Ich finde, das ist halt in vielen Punkten im Leben wichtig“ – Subjektive Vorstellungen junger Erwachsener von Teilhabe ["I Think it is Important in Many Aspects in Life" - Young Adults' Perception of Participation]. Die Rehabilitation, 60(6), 384–392
Cytera, C., & Thyen, U.
(See online at https://doi.org/10.1055/a-1491-7365)
