Care Coordination for Children with Special Healthcare Needs Anticipating Transition: A Program Evaluation

Morton, Beth A.; Damato, Elizabeth G.; Ciccarelli, Mary; Currie, Jackson

doi:10.1016/j.pedn.2021.02.024

Cited by 8 publications

(9 citation statements)

References 18 publications

Supporting

Mentioning

Contrasting

Unclassified

Order By: Relevance

“…All included studies originated from high-income countries, including the USA (9, 33.3%), the UK (7, 25.9%), Canada (4, 14.8%), Sweden (3, 11.1%), Scotland (1, 3.7%), Denmark (1, 3.7%), France (1, 3.7%), and the Netherlands (1, 3.7%). Twenty-three of the included studies [21-25, 27-29, 31-38, 40-44, 46, 47] (85.2%) assessed transitionaged persons with CP and four studies [26,30,39,45] (14.8%) assessed transitional care interventions. The quality of most studies was moderate (12, 44.4%).…”

Section: Search Resultsmentioning

confidence: 99%

Gaps in transitional care to adulthood for patients with cerebral palsy: a systematic review

et al. 2023

View full text Add to dashboard Cite

Purpose The transition from pediatric to adult care can be complex and difficult to navigate for adolescents with cerebral palsy (CP). We aimed to assess the current state of transitional care for young persons with CP and delineate guidelines for best practice with opportunities for intervention. Methods A systematic review was conducted using PRISMA guidelines to search PubMed, Embase, and Scopus databases. Articles were screened for relevance via title and abstract prior to full-text review. Results Of 3151 resultant articles, 27 observational studies were included. Fourteen (52%) studies assessed clinical outcomes of patients with CP during and post-transition. Transition-associated poor outcomes included housing instability, unemployment, difficulty forming relationships, increased hospital admission rates, and decreased use of rehabilitation services. Factors associated with improved outcomes included family participation, promotion of self-efficacy, and meeting the adult team before transition. Nine (33%) studies conducted interviews with transition-age persons with CP. Key themes were a lack of transition preparedness, difficulty navigating the adult system, gaps in seamless care, and limited accessibility to specialists and environments suitable for patients with complex care needs. Four (15%) studies examined features of current transition services. Perceived barriers included poor communication within health service teams, limited adult providers accepting CP patients, and the lack of financial resources for specialized care. There was no standardized transition tool or approach. Conclusion These findings underscore the importance of a planned transition process in optimizing long-term medical and psychosocial outcomes for persons with CP. Further research, including translational, team-based, and community-engaged research, are needed.

show abstract

Section: Search Resultsmentioning

confidence: 99%

Gaps in transitional care to adulthood for patients with cerebral palsy: a systematic review

et al. 2023

View full text Add to dashboard Cite

show abstract

“…Patients with SHCN also often require greater care coordination due to the complexity of their conditions and often see one or more subspecialists who may facilitate transition of care. (Lebrun‐Harris et al, 2018 ; McKenzie et al, 2019 ; Morton et al, 2021 ) Conversely, healthier adolescents who may have minimal or very few encounters with health care providers might have fewer opportunities to discuss and prepare for transition, representing a population who is vulnerable to being unprepared for transition of care.…”

Section: Discussionmentioning

confidence: 99%

“…Therefore, further work should prioritize scaling up transition programmes to cover a broader range of care settings and reach a greater number of adolescents, while also systematically evaluating the impact of local transition preparation programmes on populationbased transition readiness outcomes.Consistent with prior studies, we found that females, older adolescents, non-Hispanic White adolescents and adolescents with SHCN were noted to have a higher likelihood of meeting the composite measure for transition readiness (Lebrun-Harris et al, 2018;McKenzie et al, 2019;Zablotsky et al, 2020). Higher transition readiness among adolescents with SHCN could be explained by more frequent encounters with health care providers and thus more opportunities for discussion and preparation for the health care transition process.Patients with SHCN also often require greater care coordination due to the complexity of their conditions and often see one or more subspecialists who may facilitate transition of care (Lebrun-Harris et al, 2018;McKenzie et al, 2019;Morton et al, 2021). Conversely, healthier adolescents who may have minimal or very few encounters with health care providers might have fewer opportunities to discuss and prepare for transition, representing a population who is vulnerable to being unprepared for transition of care.…”

mentioning

confidence: 99%

Readiness for transition to adult health care among US adolescents, 2016–2020

Mulkey

Baggett

Tumin

2022

Child

View full text Add to dashboard Cite

Objective Adolescence is a critical period of transition from paediatric to adult health care, but readiness for this transition has been described as low in the general adolescent population. We aimed to investigate whether transition readiness improved over time among US adolescents and to examine associations between demographic and clinical characteristics and transition readiness over time. Methods Deidentified caregiver‐reported repeated cross‐sectional data from the 2016–2020 National Survey of Children's Health were analysed for caregiver‐reported measures of transition readiness among adolescents age 12–17 years. Logistic regression was used to identify trends in transition readiness and change over time in factors associated with this outcome. Results Among 55 022 adolescents represented in the five survey years, the proportion meeting a composite definition of transition readiness increased from 15% (95% confidence interval [CI]: 14%, 16%) in 2016 to 19% (95% CI: 17%, 20%) in 2020. After multivariable adjustment, each additional year was associated with 12% greater odds of caregiver‐reported transition readiness (95% CI: +8%, +15%; P < 0.001), and transition readiness was more likely for girls, older adolescents and adolescents with special health care needs. Associations between adolescent characteristics and transition readiness did not change over the study period. Conclusions Population‐level caregiver‐reported transition readiness among US adolescents has increased but remains low. Factors previously associated with transition readiness (age, sex, race and ethnicity, family income and presence of special health care needs) have persisted over recent years.

show abstract

“…Additionally, institution-based transition coordinators are instrumental in preparing young adults for this process [ 7 ]. Employing a transition coordinator may alleviate HCT barriers due to workforce limitations and clinician knowledge and has been shown to improve health outcomes [ 25 , 26 ]. International IMD societies should lead in developing guidelines that include a job description for transition coordinators.…”

Section: Discussionmentioning

confidence: 99%

Healthcare Transition in Inherited Metabolic Disorders—Is a Collaborative Approach between US and European Centers Possible?

Gold

Stępień

2022

JCM

View full text Add to dashboard Cite

Inherited metabolic diseases (IMDs) are rare heterogenous genetic conditions. Advanced technology and novel therapeutic developments have led to the improved life expectancy of patients with IMDs. Long-term, they require close surveillance from specialist adult metabolic providers. Healthcare transition (HCT) is the planned, purposeful process of preparing adolescents for adult-centered medical care and has been recognized globally as a necessary component of care for IMDs. Two recent surveys outlined barriers to the HCT in the US and the UK. The limited knowledge of IMDs among adult physicians was one of the barriers. Some work on specialty curriculum has started and aims to improve the structured training and awareness of rare diseases. Other barriers included social and legal aspects of adulthood, social, vocational and educational support for young adults, care fragmentation and insurance coverage. Although various HCT tools are available, they cannot always be standardized for IMDs. Despite the remarkable differences in the healthcare systems and physicians’ training, collaboration among metabolic centers is possible. International rare disease alliance may enhance the patients’ management via guidelines development and standardized training for adult metabolic providers.

show abstract

Care Coordination for Children with Special Healthcare Needs Anticipating Transition: A Program Evaluation

Cited by 8 publications

References 18 publications

Gaps in transitional care to adulthood for patients with cerebral palsy: a systematic review

Gaps in transitional care to adulthood for patients with cerebral palsy: a systematic review

Readiness for transition to adult health care among US adolescents, 2016–2020

Healthcare Transition in Inherited Metabolic Disorders—Is a Collaborative Approach between US and European Centers Possible?

Contact Info

Product

Resources

About