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Objectives This study sought to elucidate referral patterns and barriers to adult congenital heart disease (ACHD) care, as perceived by pediatric cardiologists (PCs). Background Management guidelines recommend that care of adults with moderate/complex congenital heart disease be guided by clinicians trained in ACHD. Methods A cross-sectional survey was distributed to randomly selected U.S. PCs. Results Overall response rate was 48% (291 of 610); 88% (257 of 291) of respondents met inclusion criteria (outpatient care to patients >11 years of age). Participants were in practice for 18.2 ± 10.7 years; 70% were male, and 72% were affiliated with an academic institution; 79% stated that they provide care to adults (>18 years). The most commonly perceived patient characteristic prompting referral to ACHD care was adult comorbidities (83%). The most perceived barrier to ACHD care was emotional attachment of parents and patients to the PC (87% and 86%, respectively). Clinician attachment to the patient/family was indicated as a barrier by 70% of PCs and was more commonly identified by responders with an academic institutional affiliation (p = 0.001). A lack of qualified ACHD care providers was noted by 76% of PCs. Those affiliated with an academic institution were less likely to identify this barrier to ACHD care (p = 0.002). Conclusions Most PC respondents in the United States provide care to ACHD patients. Common triggers that prompt referral and perceived barriers to ACHD care were identified. These findings might assist ACHD programs in developing strategies to identify and retain patients, improve collaborative care, and address emotional needs during the transition and transfer process.

Since 1988, when the term chronic fatigue syndrome (CFS) was coined, considerable discussion has occurred about stigma associated with this diagnostic term. In particular, patients with CFS have felt that this term trivializes the serious nature of this disorder. A Name Change Work group, appointed by the CFS Coordinating Committee, developed an umbrella term: chronic neuroendocrineimmune dysfunction syndrome (CNDS), and proposed that there would be sub-types under this term, one being CFS. The present study examined attributions of this new umbrella term when compared with CFS. Nurses and physician assistants (PAs) were presented a case study of a patient with symptoms of CFS. They were told that the patient had either "chronic fatigue syndrome," "chronic neuroendocrineimmune dysfunction syndrome," or "chronic neuroendocrineimmune dysfunction syndrome, which had formerly been called chronic fatigue syndrome." The different terms led to different attributions, with PA respondents rating the "CNDS" label as more severe. Results suggest that a more medical sounding term (CNDS) may lead to attributions that this syndrome is a more serious, disabling illness. The policy implications of these findings are discussed.

OBJECTIVE: To assess parental knowledge regarding lifelong congenital cardiac care (LLCCC). BACKGROUND: National guidelines recommend that nearly 50% of adult survivors with congenital heart disease (CHD) receive LLCCC; the number of adults who receive such care seems far less. Inadequate parental knowledge of LLCCC might contribute to care interruption. METHODS: In this multicenter study, we administered a questionnaire to parents of children with moderate and complex CHD to assess knowledge of LLCCC. RESULTS: A total of 500 parents participated; the median age of their children was 10 years (range: 2–18 years). Most parents (81%) understood that their child would need LLCCC, but only 44% recognized that their child's cardiology care should be guided by an adult congenital heart specialist in adulthood. More than half (59%) of the parents stated that their current cardiology team had never spoken to them about LLCCC, but 96% wished to learn more. Variables associated with parental LLCCC knowledge included previous discussions regarding LLCCC, underlying cardiac surgical diagnosis, and level of parental education. CONCLUSIONS: A substantial number of parents of children with moderate and complex CHD lack knowledge about LLCCC, but almost all of them have a desire to learn more about the care their child will need as an adult.