Table 4.

Themes with cross-study consensus, associated subthemes, and recommendations for successful healthcare transition in young persons with cerebral palsy

Global themes and subthemes
	Overarching theme	Subthemes	Recommendations
Patients	Transition readiness	Attachment to pediatric team Fear of abandonment Lack of external support Not knowing what happens next	Transition should be timed based on clinical milestones and emotional readiness, jointly determined by provider, patient and caregiver assessment, as opposed to age. Meeting the adult team before transfer, improved communication between pediatric and adult providers, written transition planning, and patient education on personal disease management may aid in transition readiness. Establishment of a comprehensive, standardized transition readiness assessment could also be useful
	Becoming a young adult	Progression of physical disability Stereotypes and prejudice Locating support for post-secondary education and employment Living independently—exciting but intimidating	Successful transition should be holistic with emphasis on functional, social, and emotional support, as well as teach financial and healthcare planning to empower young adults to be self-sufficient. As transition clinics and longitudinal programs for young adults with CP are developed, these elements should be incorporated into the care model
	Navigating the healthcare system	Encouraging independence but with limited guidance Locating experienced providers Understanding insurance benefits	Successful transition must account for the individual’s barriers to care, including access and availability of specialists, proximity to healthcare facilities, disparity in policy, insurance restrictions, stigma, and financial resources. Assigning a care coordinator or transition navigator to each patient could alleviate stress and confusion and lend to more successful transition
Caregivers	Isolation and abandonment	Identifying supportive resources Communication with providers Coping skills Community support	Assigning care coordinators or transition navigators to patients and their families, forming parent support groups as part of transition clinics or as online communities, and improved provider education on caring for young adults with CP can help alleviate caregiver stress and burnout
Providers	Accessibility	Care environment suitability Available time Funding	Expansion of public insurance benefits, healthcare policy reform, and increased private and public funding sources are needed to support the financial burden of providing complex care
	Training	Provider education Network for seamless care	Development of accessible educational resources, such as a free, online certification course, and incorporation of transitional care training into the teaching curriculum of residency programs is needed to expand the network of providers comfortable treating young adults with CP. Providers with this special certification are added to a searchable registry for patients seeking care