Table 1.
Studies with transition-associated metrics as outcome measures included in the review
| Reference | Country | H/L/MIC | Study design | Quality | Bias risk | Patients, N | Mean Age, yrs (range) | GMFCS level, N | Cohort | Key findings |
|---|---|---|---|---|---|---|---|---|---|---|
| Alriksson et al. (2014) [21] | Sweden | High | Longitudinal cohort | High | Low | 102 | 20.6 median (18.3–23.7) | I, 38; II, 21; III, 13; IV, 10; V, 20 | Participants of a CP follow-up program | Living arrangements differed significantly among GMFCS levels. 70% of participants with severe disabilities lived with their parents. 90% of employed participants had a GMFCS level of I–II |
| Colver et al. (2018) [29] | UK | High | Longitudinal cohort | High | Low | 74 | 19.1 (16.1–22.0) | Not provided | Young persons with CP | Parent involvement was significantly associated with wellbeing. Satisfaction with services was significantly associated with promotion of health self-efficacy. Meeting the adult team before transfer was significantly associated with participation in arranging personal care |
| Donkervoort et al. (2009) [32] | Netherlands | High | Cross-sectional survey | High | Low | 81 | 20.4 (18.0–22.0) | I, 63; II, 7; III, 5; IV, 5; V, 1 | Young persons with CP with normal intelligence (IQ > 70) | Young adults with CP significantly lagged peers in development of housing, employment, and intimate relationships. 50% of participants did not visit a rehab physician in the previous year and only 33% visited a rehab physician in adult care |
| Goodman et al. (2011) [33] | USA | High | Cross-sectional survey | High | Low | 1300 | (18.0–21.0) | Not provided | Young persons with CP | Hospital utilization increased significantly among transitional age patients with CP in terms of number of annual discharges, inpatient days, and charges |
| Ko et al. (2004) [34] | UK | High | Qualitative interview | Moderate | Moderate | 11 | (15.0–17.0) | Not provided | Young persons with CP on school leave with physical disabilities | 49 potential referrals to adult specialist services were identified, but 17 were not made as such services did not exist. Adult physiotherapy and OT services were under-provided |
| Liljenquist et al. (2018) [36] | USA | High | Retrospective analysis | Moderate | Moderate | 35,290 | (13.0–18.0 at wave 1, 21.0–26.0 at wave 5) | Not provided | Young persons with CP in school (wave 1) and out of school (wave 5) | 59.4% of the youth utilized PT services; only 33.7% of them reported using PT since leaving secondary school. Female sex and use of a mobility device were significantly associated with PT use post-high school |
| McDowell et al. (2015) [37] | UK | High | Cross-sectional survey | Moderate | Moderate | 123 | 16.2 (4.0–27.0) | IV, 55; V, 68 | Young persons with CP and their parents | There was a significant decrease in access to specialists between the adolescent age group and the young adult age group |
| Merrick et al. (2015) [38] | UK | High | Cross-sectional survey | Moderate | Moderate | 106 | 16.5 (14.0–18.9) | I, 25; II, 42; III, 16; IV, 11; V, 2; unclassified, 10 | Young persons with CP | The median “gap” score between ideal and current care for physical environment and care processes was 1.0 when rated by young persons with CP. Parents’ satisfaction was significantly lower than their children’s |
| Blackman et al. (2013) [25] | USA | High | Cross-sectional survey | High | Low | 80 | (15.0–18.0) | Not provided | Parents of young persons with CP | 29% reported that their doctors discussed their child eventually seeing adult providers. 42% reported their doctors have discussed changing healthcare needs as the child ages |
| Roquet et al. (2018) [41] | France | High | Retrospective analysis | Moderate | Moderate | 512 | (2.0–40.0 +) | I–III, 277; IV/V, 235 | Family members and individuals with CP | Use of medication increased, while physical types of healthcare decreased with age, independent of GMFCS status |
| Solanke et al. (2018) [42] | UK | High | Cross-sectional survey | Moderate | Moderate | 106 | 16.4 (14.0–18.9) | I, 53; II, 20; III, 15; IV/V, 18 | Family members and individuals with CP | Highest areas of unmet needs were for management of pain, bone or joint problems, and speech, and were associated with increased severity of motor impairment and attending non-specialist education |
| Warschausky et al. (2017) [44] | USA | High | Cross-sectional survey | Moderate | Moderate | 43 | 18.63 | I, 19; II, 11; III, 4; IV, 9; V, 0 | Parents and young persons with CP | TRAQ scores in the CP population indicated poor transition readiness for self-management but sufficient readiness in self-advocacy |
| Young et al. (2007) [46] | Canada | High | Retrospective cohort | High | Low | 1064 total; youth 587, adults 477 | Youth 15.4 (13.0–17.0); adults 26.3 (23.0–32.0) | Not specified for most of the sample | Youth and adults with CP | Adults had a significantly higher rate of GP visits and annual physicals compared to youth and a lower rate of specialist and pediatrician visits. Specialists provided 28.4% of youth visits but only 18.8% of adult visits |
| Young et al. (2010) [47] | Canada | High | Cross-sectional survey | High | Low | 199 total; youth 129, adults 70 | Youth 15.5 (13.0–17.0); adults 26.6 (23.0–33.0) | Youth: I–III, 68; IV/V, 61; adults: I–III, 39; IV/V, 31 | Youth and adults with CP | SRH was reported to be excellent or very good by 57% of youth and 46% of adults |
N refers to the number of patients in each study, H/L/MIC high/low/middle income country, SRH self-rated health, CP cerebral palsy, GP general practitioner, TRAQ Transition Readiness Assessment Questionnaire, GMFCS Gross Motor Function Classification System, PT physical therapy, IQ intelligence quotient, OT occupational therapy