Approximately 10 percent of U.S. children live with a serious chronic condition (Newacheck, 1994). Although health care providers make specific disease management recommendations, the patient and family must manage the child?s illness on a day-to-day basis. Given the burdensome nature of many chronic disease regimens, it is not surprising that noncompliance is common, with serious health consequences. Efficacy studies have demonstrated that educational approaches combined with behavioral change strategies targeting daily disease management, can result in improved clinical outcomes (Rapoff, 1999). However, approaches of this type are rarely integrated into patients? usual care. The proposed research will test a staged self-management assessment/intervention, incorporated into the routine clinical care of two pediatric patient populations: type 1 diabetes and cystic fibrosis. The intervention consists of: (1) provision of a specific, prescribed treatment form to the family by the provider as part of the clinical encounter; (2) assessment of the parent?s and patient?s skills in carrying out the treatment plan, with correction and re-instruction as necessary; and (3) behavior change strategies targeting up to two specific problem behaviors using a problem-solving approach and monthly telephone contact. The impact of the intervention will be examined on (a) the extent of parent-physician agreement about the child?s recommended treatment plan and (b) the family?s actual daily management of the child?s illness. Two follow-up assessments will provide information on maintenance of behavior change after the formal intervention program has ended. By testing the intervention with two pediatric patient populations, we can begin to examine the robustness of its effect across pediatric chronic illness groups.
