Implementation and sustainability of statewide transition support services for youth with intellectual and physical disabilities

Abstract

PURPOSE: Significant gaps in care and limited existing models establish the need to innovate systems of care for youth with special health care needs in the transition between pediatric to adult health care settings. METHODS: Using implementation science, a statewide transition support program was created. University and community partners explored needs and adopted a strategic plan and funding sources. The existing consensus statement provided a framework. A team was hired, policies were piloted and the initial ambulatory consultative transition service for youth with special needs ages 11 to 22 was launched. Full program activities during year four were analyzed. RESULTS: During 2011, there were 139 consultations for youth with intellectual disability and/or physical disability (average 16.74 years, 46% female). Services include routine and focused co-morbidity screening and recommendations, care coordination of complex health and community service needs, and support for families. The evolving transdisciplinary team adapted their methods to collaborate with a growing population of youth and primary care providers. CONCLUSION: A statewide transition support program is a viable delivery model to provide needed resources for youth, families and primary care practices. Weekly improvement meetings continue to adapt services to sustain family satisfaction and community provider satisfaction.

Transition care for young adults with complex chronic conditions exiting pediatric care: Implications for primary care providers.

“…Results from Chung et al's (2017) study were similar to those in an earlier quantitative study conducted in the United States by Ciccarelli, Brown, Gladstone, Woodward, and Swigonski (2014). Collaborative approaches to care provided an effective model in sharing knowledge among health care professionals.…”

“…The fourth theme identified within this integrative literature review emphasized the benefits and challenges associated to communication and collaboration (Aldiss et al, 2015;Berens & Peacock, 2015;Betz et al, 2013;Chung et al, 2017;Ciccarelli et al, 2014;Maddux et al, 2015;McManus et al, 2015;Nehring et al, 2015;Okumura et al, 2015). A lack of communication between pediatric and adult providers was identified as a result of an emerging field of practice within an unprepared system of care, discussed in one quantitative study (Maddux et al, 2015) and two of the systematic reviews (Betz et al, 2013;Nehring et al, 2015).…”

“…More specifically these were grounded theory (Aldiss et al, 2015; Okumura, Saunders, & Rehm, 2015) and descriptive (Berens & Peacock, 2014;Syverson, McCarter, He, D'Angelo, & Tuchman, 2016) methodologies to generate data. From the remaining eight studies, five were quantitative using a range of approaches; time-series (Ciccarelli, Brown, Gladstone, Woodward, & Swigonski, 2014;McManus et al, 2014), cross-sectional (Rutishauser, Sawyer, & Ambresin, 2014), and surveys (Chung, Jasien, & Maslow, 2017;Maddux, Ricks, & Bass, 2015). Three systematic reviews completed between 1995-2016 were included (Betz et al, 2013;Gabriel et al, 2017;Nehring et al, 2015).…”

“…In order to ensure that the findings were applicable to the Canadian health system, the geographical nature of each study was considered. Seven (58%) of the individual studies included in this paper were conducted in the United States (Berens & Peacock, 2014;Chung et al, 2017;Ciccarelli et al, 2014;Maddux et al, 2015;McManus et al, 2014;, Syverson et al, 2016, one (7%) was conducted in Switzerland (Rutishauser et al, 2014), and one (7%) was conducted in the United Kingdom (Aldiss et al, 2015). The three (25%) systematic reviews (Betz et al, 2013;Gabriel et al, 2017;Nehring et al, 2015) included data from all of these countries, as well as Canada, Hong Kong, and Japan.…”

Preparing adolescents with heart problems for transition to adult care, 2009-2010 National Survey of Children with Special Health Care Needs

“…30 While the first CHD-specific trial and several other non-CHD trials 31 found some improvement after implementing brief interventions, other studies have evaluated comprehensive transition programs that incorporate transition planning into the routine care of their patients throughout adolescence. 32–34 Recommendations from transition interventions evaluated for other CSHCN include incorporating a structured multidisciplinary transition program, improving availability of resources, training, and staff, starting the transition process by ages 12–14, expanding the role in transition of nurse care managers, pediatricians, and adult clinicians, and offering incentives to providers for completing transition planning components. 35–37 Our findings provide a baseline national estimate of the percentage of adolescents with CHD and their parents receiving transition planning by their provider, what subgroups of adolescents with CHD receive transition planning, and the desire by parents for transition planning for their children.…”