Rehabilitation needs of youth with arthrogryposis multiplex congenita: Perspectives from key stakeholders.

CONCLUSIONS: All participants reported that early-active rehabilitation is beneficial as it helps determine future treatments. Transition times and participation need to be at the center of interventions to ensure that the needs of youth with arthrogryposis multiplex congenita are being met. The development a condition-specific outcome-measure and rehabilitation practice recommendations will assist clinicians in addressing the needs of youth with arthrogryposis multiplex congenita. Implications for rehabilitation Arthrogryposis multiplex congenita presents in at least two different areas of the body as multiple congenital contractures of varying severity which may affect the upper and lower extremities, spine and jaw. Youth with arthrogryposis multiplex congenita identified participation as an essential component of their life, however caregivers and clinicians did not emphasize this need. Gathering information from different stakeholders is important to ensure varying needs are addressed. Rehabilitation was reported to be beneficial from early childhood to late adolescence by youth, caregivers, and clinicians. Frequency of rehabilitation diminished over time, emphasizing the need for continued follow-up into adolescence. PMID: 30741031 [PubMed - as supplied by publisher]
Source: Disability and Rehabilitation - Category: Rehabilitation Authors: Tags: Disabil Rehabil Source Type: research