PEDIATRICS Vol. 98 No. 5 November 1996, pp. 952-958
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Monitoring and Evaluating Managed Care for Children With Chronic Illnesses and Disabilities

Paul W. Newacheck DrPH1, Ruth E. K. Stein MD2, Deborah Klein Walker EdD3, Steven L. Gortmaker PhD4, Karen Kuhlthau PhD5, and James M. Perrin MD6

1 Institute for Health Policy Studies and Department of Pediatrics, University of California, San Francisco, San Francisco, California
2 Department of Pediatrics, Albert Einstein College of Medicine, Bronx, New York
3 Bureau of Family & Community Health, Massachusetts Department of Public Health, Boston, Massachusetts
4 Department of Health and Social Behavior, Harvard School of Public Health, Boston, Massachusetts
5 Department of Pediatrics, Massachusetts General Hospital, Boston, Massachusetts
6 Division of General Pediatrics, Department of Pediatrics, Massachusetts General Hospital and Harvard Medical School, Boston, Massachusetts

Objective. Children with chronic illnesses and disabilities are increasingly enrolling in managed care arrangements. Yet, the rapid expansion of managed care has unknown consequences for children with chronic conditions and disabilities. As managed care is likely to become the predominant mode of medical practice for children with chronic health problems, information gained from a thorough assessment of existing managed care models could be helpful in indicating adjustments and modifications that could result in improved outcomes for this population. The purpose of this article is to outline a new strategy for collecting needed information on the effects of managed care on children with chronic health problems.

Methods. We reviewed the literature on the effects of managed care on children with chronic conditions and disabilities. We identified key domains relevant to monitoring and evaluating managed care for this population.

Results. Two research approaches can provide helpful information for assessing the effects of managed care on children with chronic conditions. First, a monitoring strategy could be pursued in which enrollment trends in managed care, enrollee perceptions of access and satisfaction with care, and other general indicators of outcomes would be tracked over time using inexpensive and rapid turnaround data sources. Second, an evaluative strategy could be pursued using experimental or quasiexperimental designs, in which outcomes across a variety of domains for children with chronic conditions in managed care are compared with: (a) outcomes for the same children before enrollment in managed care; or (b) outcomes for similar children remaining in traditional fee-for-service settings. Evaluation and monitoring strategies should focus on outcomes in a number of domains including: (1) access to care; (2) utilization of services; (3) quality of care; (4) satisfaction with care; (5) expenditures for care; (6) health outcomes; and (7) family impact.

Conclusion. Assessing outcomes that result from enrollment in managed care for children with chronic health problems presents a formidable challenge. The research strategy outlined in this article presents one approach to meeting that challenge. The monitoring and evaluation strategies described here would require commitment of additional resources on the part of government, private foundations, and/or health plans. Given the paucity of existing information and the stakes for children with chronic conditions and their families, investment of added resources in a comprehensive monitoring and evaluation strategy is essential.

Submitted on September 28, 1995
Accepted on December 27, 1995




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