An examination of the adapted Rotterdam Transition Profile and transition outcomes for young adults with SCI
Ryerson Espino S, Kalinich T, Anderson L, Kelly E, Zebracki K
Shriners Hospitals for Children Chicago, Chicago, IL, USA
Objectives: Explore pilot reliability and validity data for an adapted Rotterdam Transition Profile (Ra) for youth with spinal cord injuries (SCI).
Design/Method: The Ra assessed independence in employment, education, household responsibilities, intimacy, transportation, leisure, healthcare, and durable medical equipment among individuals with spinal cord injury (SCI). Reliability was explored with qualitative data, multiple ratings (parent, child, researcher), and internal consistency. Validity involved evaluating convergence with PROMIS Global Health, Neuro-QOL Participation and Satisfaction with Social Roles/ Activities, Neuro-QOL Fine Motor and Mobility, Europep, and Satisfaction with Life Scale.
Results: Thirty-seven young adults [M age=24.6 years (22-28); M injury duration=15 years (8.6-27.5)] participated in this study; half were male (51%) and had paraplegia (59%); about two thirds were White (65%). Etiologies included motor accidents (46%), followed by medical injuries (24%), violence (15%), falls (9%), and sports (6%). The majority reported successful transition to adult care providers (89%). Two thirds reported independence related to transportation (68%). Just over half reported independence in intimacy (58%), household responsibilities (57%), leisure (53%), and healthcare (53%). Less than half reported independence related to durable medical equipment (47%) and finances (44%) and 42% reported at least a 4-year college degree. We observed fair to substantial inter rater reliability between caregiver and young adult ratings on all Ra domains (.27-.65 Kappa) with the exception of healthcare coordination (.25, ns). When discrepant, young adults tended to rate their independence as higher than caregivers and researchers. Internal consistency was strong (Cronbach's alpha = .82). Convergent validity was good, as Ra was significantly related to: Satisfaction with Life (r= .56, p<.00), Global Mental Health (r=.48, p<.01), as well as Satisfaction with Clinical Behavior (r= .36, p <.05) and Organizational Care of Current SCI Provider (r = .38, p<.05). Young adults with higher Mobility and Fine Motor scores reported higher Ra (r=.46, p<.01 and r=.41, p<.05) as did those with paraplegia (r=.42, p<.05).
Conclusion: These initial data suggest good reliability and validity of Ra with young adults with SCI. Data provide a helpful, efficient snapshot on how patients self-rate their independence and relationship between independence, satisfaction with current SCI care, and life satisfaction. Additional research could explore if the tool is useful for goal setting and monitoring, for instance as related to transition readiness. Such research could also continue to assess validity by employing methods to assess test-retest reliability. Data suggest ongoing need for research on the meaning of independence for those living with tetraplegia and more physical limitations. Data also suggest the need for more development and evaluation of interventions and supportive services intended to bolster independence of young adults living with SCI in particular for those with tetraplegia and those who report difficulties related to fine motor skills and mobility.
Support: Shriners Hospitals for Children (Grant #71010)
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