Survey Finds Barriers to Transitioning Pediatric CHD Patients to Adult Care

The vast majority of pediatric cardiologists in the U.S. also treat adult congenital heart disease (ACHD) patients, according to a physician survey published on Nov. 7 in the Journal of the American College of Cardiology. Most of these adult patients began as pediatric patients and failed to transition to adult care. Clinicians noted emotional attachment between provider and patient or parents, and an inadequate supply of ACHD specialists as barriers to adult care.

The results came from a survey, "Referral Patterns and Perceived Barriers to Adult Congenital Heart Disease Care," mailed to physicians certified by the American Board of Pediatrics to practice pediatric cardiology. The survey covered four geographic regions — Northeast, South, Midwest and West — with a minimum of 60 respondents from each region. Survey questions covered the extent of ACHD care in pediatric practice, referral patterns to ACHD care, perceived barriers to ACHD care and open-ended input on the transition and transfer process.

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"Overall, 93.4 percent of respondents reported that patient, parent and/or clinician attachment was a barrier to adult congenital heart disease care," said lead author Susan Fernandes, PA-C, LPD, Lucile Packard Children's Hospital at Stanford, Palo Alto, Calif. "Many respondents expressed concern about providing adult care in their pediatric hospitals, especially in the context of adult morbidities. An equally common concern was patient safety due to lack of experience and expertise for the provision of quality congenital care by adult institutes and providers."
The inclusion of adult patients with congenital heart disease in pediatric care is largely a function of successful treatment of children with congenital cardiac problems that would have been fatal in prior years. The ACC recommended in its 2008 Guidelines for the Management of Adults with Congenital Heart Disease that adults with moderate and complex congenital heart disease should be treated by ACHD clinicians. However, data from about 90 ACHD programs suggest that the number of adults seen in these programs is far below projections, suggesting that a substantial number of ACHD patients continue in pediatric care.
Most respondents, 79.1 percent, reported caring for at least 20 adult patients 18 years or older. Among clinicians treating patients older than 30, 26.9 percent doubted their capacity to provide age-appropriate care.
Nearly all clinicians, 91.8 percent, said they prepare pediatric patients for self-care management via transition education. More than half of clinicians, 54.7 percent, begin the transition process before patients reach age 16.
The most common reasons for referral to an ACHD program include adult comorbidities (82.9 percent), age (64.2 percent), pregnancy (63.8 percent), college graduation (50.2 percent) and marriage (41.2 percent). Other reasons for referral include alcohol/illicit drug use (20.2 percent) and high school graduation (11.7 percent).
The overwhelming barrier to referral to ACHD is emotional attachment (93.4 percent). Lack of qualified ACHD care was reported as a barrier by 80.9 percent of respondents. Most respondents perceived a need for additional resources for education (82.3 percent) and transitioning from pediatric to adult care (79.2 percent). 
"The terms 'ACHD specialist' and 'ACHD program' are self-described, and specialist training and experience are highly variable," Dr. Fernandes concluded. "Standardization of eligibility for training criteria, ACHD training, subspecialty certification and program accreditation might improve confidence in clinicians and programs providing ACHD care."

"The ACC is stepping up to help improve transition efforts," said Gerard R. Martin, MD, FACC, senior vice president of Children's National Medical Center, and chair of the ACC’s Adult Congenital Pediatric Cardiology (ACPC) Council. "Through the ACC's ACPC Membership Section experts from both pediatric and internal medicine backgrounds are collaborating to address workforce shortages, education and advocacy needs necessary to improve transition. Working together I am confident we will solve this problem."

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