Abstract 152 Health Services Research: Organization & Policy Platform, Monday, 5/3

Objective: Prior research has suggested that parents of children with chronic illness perceive poor coordination of care between primary care physicians (PCP) and specialty care physicians. The aims of this study were to examine parental preferences for locus of service delivery for management of their teen's general health and congenital heart disease (CHD)-related concerns.

Methods: A health care preferences survey was mailed to a consecutive sample of parents of teens, ages 11 to 19 years, recently seen in follow-up in the cardiology clinic. Chart review was used to collect information to apply a severity of illness index we previously developed and validated: low severity (≤1 invasive cardiovascular procedure), moderate severity (>1 invasive cardiovascular procedure), and high severity (persistent cyanosis or single ventricle physiology).

Results: Overall, 18 distinct CHD lesions were represented with the following classification: 40 low severity, 36 moderate severity, and 10 high severity (N = 86). For all 11 general health concerns, 96-100% of parents preferred seeing the PCP. With regards to CHD-related concerns, most parents preferred seeing the PCP: chest pain (52%), syncope (73%), appearing seriously ill (79%), a sports physical examination (79%), and antibiotics for dental visit (94%). Conversely, most parents preferred the cardiologist for heart medication prescription refills (65%) and sports participation questions (59%). For 5 of 7 CHD-related concerns, there was a significant trend toward preferring cardiologist use with increasing disease severity (p=0.002 to p=0.04). Overall, 58% of parents, regardless of CHD severity, preferred a PCP-cardiologist co-management model as opposed to a specialist-dominated model for their teen's CHD care. Co-management model parents had increased preference for PCP use for CHD-related prophylactic activities (p=0.002). Multivariable regression analysis that adjusted for disease severity, age, and sex, showed increasing family income was associated with decreased odds of co-management model preference (odds ratio 0.65, 95% confidence interval 0.44 to 0.96).

Conclusions: The majority of parents of teens with CHD desire a co-management model between their PCP and cardiologist, regardless of severity of CHD. Most parents preferred PCP use for both general health and CHD-related concerns, although this preference declined with increasing disease severity. This study suggests that parents desire collaboration between primary and specialty care physicians with significant reliance on PCPs for their teen's chronic illness.