Independence of young people with cerebral palsy during transition to adulthood: a population-based 3 year follow-up study

Abstract Background This study describes developmental and service transitions during a 3-year period among young people with cerebral palsy (CP) as measured by the Rotterdam Transition Profile (RTP) and evaluates the test-retest reliability of the RTP. The RTP is a questionnaire developed to classify phases of transition across nine participation domains. Methods A three-step design was applied: Step I consisted of a translation and test-retest reliability study of the RTP, Step II was a comparison of independence between youth with and without CP and Step III was a follow-up survey of youth with CP describing changes of independence after a 3-year transition period. A sample of 103 typically developing youth were recruited for Steps I and II, and a population-based sample of 76 (response rate = 59%) youth with CP (males = 40) from South-Eastern Norway aged 16–17 years were recruited for Steps II and III. The subtypes of CP were classified as spastic unilateral (n = 30), spastic bilateral (n = 37), dyskinetic (n = 8) and ataxic (n = 1) CP. The levels of gross motor function followed the categories of the Gross Motor Function Classification System (GMFCS) as level I (n = 30), level II (n = 17), level III (n = 6), level IV (n = 8) and level V (n = 15). Results Twenty-six participants had epilepsy and 13 had gastrostomy. Forty-four of the youth with CP (response rate = 58%) responded to the 3-year follow-up survey in Step III. The test-retest study of the RTP showed excellent reliability (Kw 0.76–0.93). At baseline (Step II), the reference group was significantly more independent than the youth with CP in all the participation domains. At the 3-year follow-up (Step III), the levels of independence had increased significantly for all the participation domains in the youth with CP except for transportation and leisure. Despite increased independence during the transition period regarding health services, only 25% independently formulated their own care needs or applied for services and assistance at 19–20 years of age. Youth who responded to the RTP by a caregiver proxy more often had a diagnosis of epilepsy and/or gastrostomy and higher GMFCS levels. These individuals were significantly less independent than those who self-reported, both at baseline and at follow-up. Conclusions In conclusion, the excellent test-retest results support the use of the RTP as a tool for classifying phases of transition among youth with CP. The youth with CP were significantly less independent than their typically developing peers at baseline, yet increased their independence during a 3-year period. Those who self-reported to the RTP were generally more independent than those who proxy-reported, which supports the need to distinguish between the service needs of subgroups during the transition phase.