Transition to adulthood: validation of the Rotterdam Transition Profile for young adults with cerebral palsy and normal intelligence

Abstract

The aim of this study was to investigate the validity of the Rotterdam Transition Profile (RTP) to describe the transition process from childhood to adulthood in young adults with cerebral palsy (CP). Participants were recruited from rehabilitation centres and hospital departments of rehabilitation. In total, 81 young adults (47 males, 34 females) with CP and normal intelligence participated (mean age 20y 5mo [SD 1y 4mo] range 18−22y; 95% spastic CP, 48% hemiplegia, 38% diplegia, 14% quadriplegia; 78% Gross Motor Function Classification System Level I, 83% Manual Ability Classification System Level I). The RTP and the Assessment of Life Habits questionnaire are used to measure transition and functioning in daily activities and participation. Almost all participants were in the transition process or had reached an independent adult lifestyle (ranging from 60−100%, housing 42%). Compared with able‐bodied peers, young adults with CP lagged behind in their development in housing (25 vs 36%; p<0.05), employment (33 vs 49%; p<0.05), and intimate relationships (37 vs 76%; p<0.01). Associations were found between the phase of transition and age, parents’ level of education, gross motor functioning, manual ability, level of education, and level of functioning in daily activities and participation. The RTP is a valid tool to gain more insight into the transition process, at the individual as well as at group level.

Long-Term Trajectories of Health-Related Quality of Life in Individuals With Cerebral Palsy: A Multicenter Longitudinal Study

“…For this age group, the PERRIN program investigated activities and participation during their transition to independent adulthood, thus focusing on those without intellectual disability who were expected to be capable of living an independent adult life. 22 Each individual visited the rehabilitation department for 3 (children and young adults) or 4 (toddlers and adolescents) measurements. The time between measurements was 1 year (for toddlers, children, and adolescents) or 2 years (for young adults).…”

Transition to adult services

“…Sawicki et al have published preliminary validation data of the Transition Readiness Assessment Questionnaire, which appears to be useful both to assess transition readiness and to guide educational interventions by providers to support transition 67. Tools are also being designed for specific conditions, for example, the Rotterdam Transition Profile for young adults with cerebral palsy and normal intelligence 70. Such tools will potentially be very useful in transition planning from both clinical and research perspectives.…”

Immigrant Youths with Disabilities and Caregivers from the Middle-East—Challenges and Needs During Transition to Adulthood

“…Most of them were, however, also dependent upon their parents or personnel for help with leisure and social activities, which differs from non-immigrant youths aged 18-22 who are diagnosed with CP and who were found to be more independent in pursuing these activities (Donkervoort et al, 2009). On the other hand, caring for a youth with disability was stated as a work opportunity and an opportunity for caregivers to earn income.…”