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

Abstract

Objective A substantial percentage of children with congenital heart disease (CHD) fail to transfer to adult care, resulting in increased risk of morbidity and mortality. Transition planning discussions with a provider may increase rates of transfer, yet little is known about frequency and content of these discussions. We assessed prevalence and predictors of transition-related discussions between providers and parents of children with special healthcare needs (CSHCN) and heart problems, including CHD. Design Using parent-reported data on 12- to 17-year-olds from the 2009–2010 National Survey of CSHCN, we calculated adjusted prevalence ratios (aPR) for associations between demographic factors and provider discussions on shift to adult care, future insurance, and adult healthcare needs, weighted to generate population-based estimates. Results Of the 5.3% of adolescents with heart problems in our sample (n =724), 52.8% were female, 65.3% white, 62.2% privately insured, and 37.1% had medical homes. Less than 50% had parents who discussed with providers their child’s future health insurance (26.4%), shift to adult care (22.9%), and adult healthcare needs (49.0%). Transition planning did not differ between children with and without heart problems (aPR range: 1.0–1.1). Among parents of CSHCN with heart problems who did not have discussions, up to 66% desired one. Compared to 1-/13-year-olds, a larger percentage of 16-/17-year-olds had parents who discussed their shift to adult care (aPR 2.1, 95% confidence interval (CI) [1.1, 3.9]), and future insurance (aPR 1.8, 95% CI [1.1, 2.9]). Having a medical home was associated with discussing adult healthcare needs (aPR 1.5, 95% CI [1.2, 1.8]) and future insurance (aPR 1.8, 95% CI [1.3, 2.6]). Conclusions Nationally, less than half of adolescents with heart problems had parents who discussed their child’s transition with providers, which could be contributing to the large percentage of CHD patients who do not successfully transfer to adult care.

Overview of muscular dystrophy, it’s types, symptoms, management and possible treatment

“…There is a rehabilitation of muscular dystrophy in which a patient of MD participates in events of daily routine. Occupational therapy is a useful therapy that might alternate the individual's atmosphere, to expand the accessibility and person's function; moreover it also gives information about mental decay and psychosocial fluctuations due to muscular dystrophy, it also gives education and support regarding disease to their families and a person [22]. A respiratory problem is a main source of morbidness and mortality in patients of duchenne muscular dystrophy.…”

Prevention and awareness of birth defects across the lifespan using examples from congenital heart defects and spina bifida

“…Children begin to drop out of cardiology care in childhood, with higher loss to follow up among racial and ethnic minorities (Jackson et al, 2019). Barriers to transitioning from pediatric to adult cardiology care include replacing the strong relationship with the pediatric provider, locating an adult provider, and accessing adult health insurance (Gaydos et al, 2020), and over half of parents of children with heart conditions report not discussing transition issues with their child's provider (Downing, Oster, & Farr, 2017). While the number of centers specializing in care for adults with congenital heart defects has grown considerably over the past decade, it has been estimated that there are still too few adult congenital cardiologists to care for this growing population (Krasuski & Bashore, 2016).…”

Practical recommendations for the transition to adulthood for the adolescent with a genetic diagnosis. Special emphasis on inborn errors of metabolism

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