The role of the primary care physician in the care of children with serious heart disease.

OBJECTIVE: To determine the roles of primary care physicians and specialists in the medical care of children with serious heart disease.
SETTING: Pediatric Cardiology Division; Tertiary Care Children's Hospital.
SUBJECTS: Convenience sample of parents, primary care physicians, and pediatric cardiologists of 92 children with serious heart disease.
DESIGN: Questionnaire study; questionnaires based on 16 medical care needs, encompassing basic primary care services, care specific to the child's heart disease and general issues related to chronic illness.
RESULTS: All children had a primary care physician (PCP), and both they and the parents (P) reported high utilization of PCP for basic primary care services. However, there was little involvement of PCP in providing care for virtually any aspect of the child's heart disease. Parents expressed a low level of confidence in the ability of PCP in general or their child's own PCP to meet many of their child's medical care needs. Both PCP and pediatric cardiologists (PC) were significantly more likely than parents to see a role for PCP in providing for care specific to the heart disease as well as more general issues related to chronic illness. PC and PCP generally agreed about the role PCP should play, although PC saw a bigger role for PCP in providing advice about the child's activity than PCP themselves did. PC were less likely to see the PCP as able to follow the child for long term complications than PCP did. PC were more likely than PCP to believe that PCP were too busy or were inadequately reimbursed to care for children with serious heart disease. Only about one-third of parents reported discussing psychosocial, family, economic, or genetic issues with any provider, and PCP were rarely involved in these aspects of chronic illness.
CONCLUSIONS: Primary care physicians do not take an active role in managing either the condition-specific or the more general aspects of this serious chronic childhood illness. With appropriate information and support from their specialist colleagues primary care physicians could provide much of the care for this group of children. Generalists and specialists are both responsible for educating and influencing parents about the role primary care physicians can play in caring for children with serious chronic illness.