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To describe the evolution, accomplishments, and limitations of a research consortium after 25 years of existence. A narrative historical account supplemented by data documenting citations to all group papers. In 1980 the Research Consortium on Children with Chronic Conditions was established. Since then, we have met 2-3 times a year to discuss issues related to research and policies for children with special health care needs. We describe the origin of the Consortium, its operation, and some of its accomplishments, as well as the difficulties it encountered. Our interactions helped promote and sustain research on an emerging topic and did so in an interdisciplinary manner. We include a citation analysis suggesting that group papers published by Consortium members are reasonably well cited by others. We believe our work has been of value in developing influencing research, clinical practice, and policy. This paper is intended to serve as a guide for others who believe that this type of interaction can do much to promote an emerging field. However, it also highlights some of the difficulties in forging and maintaining a productive, research-focused relationship over an extended period of time. The most important lesson learned is that a small group of committed individuals able to meet on a regular basis can accelerate movement in a new field. However, unless stable funding can be secured, maintaining a consortium is truly challenging.

Background: The Questionnaire for Identifying Children With Chronic Conditions (QuICCC) is an instrument based on a conceptual noncategorical definition that uses parental responses to identify children with chronic conditions for epidemiological purposes., Objectives: To determine whether the QuICCC is sufficiently valid, sensitive, and specific to be used to identify individual children as having a chronic condition or disability; whether parents are accurate enough that their answers to QuICCC items can be accepted as valid; and what kinds of errors in classification occur when the QuICCC is used to identify children with chronic conditions., Methods: The sample consisted of 424 children who were patients of 9 physicians in separate practice settings throughout New England. Each physician was briefly trained in the conceptual definition on which the QuICCC is based and then was asked to identify 25 children in his or her practice who met the definition and 25 children who did not meet the definition. The QuICCC was administered to the parents of these children by blinded interviewers via telephone. The QuICCC classification was compared with physician categorization. Discrepant cases were then followed up by asking physicians and parents to answer the original questions a second time., Results: Complete data were available on 379 (89.4%) of 424 children. There was agreement on 89% (kappa = 0.78). The sensitivity was 94%; specificity, 83%; positive predictive value, 86%; and negative predictive value, 92%. Of the 42 discordant cases, 30 parent reports on the QuICCC qualified the child as having a chronic condition when the physician classified the child as being without such a condition. Fewer (n = 12) discrepancies occurred because physicians identified children with chronic conditions that the QuICCC failed to identify. When the questions were readministered at follow-up, physicians corrected errors in rating in 9 cases; mothers changed their answers in 5 instances. In 13 instances the issues were known to both parties and appeared to arise in the "gray zone" or boundary area, where there was disagreement over whether a particular child qualified using the theoretical definition. For 11 children identified as having a chronic condition only by the parent's responses to the QuICCC, physician report appeared to be inaccurate primarily due to the physician's lack of information. In 3 cases where the physician reported the child to have a chronic condition, but the parent did not, the physician appeared to be correct. Follow-up data were incomplete on 1 child., Conclusions: These data support the validity of parent-generated information for the evaluation of health status. Although these findings should be replicated, this study suggests that the QuICCC may be applicable also as a screening tool for individual child identification, provided that several sources of error are considered.

This paper reviews opportunities to monitor managed care for children and adolescents with chronic conditions and considers how well the Health Plan Employer Data and Information Set, version 3.0 (HEDIS 3.0), assesses care for these children. We propose four steps to strengthen the applicability of HEDIS to children with chronic conditions: (1) develop methods of identifying and monitoring groups of children with chronic conditions; (2) report HEDIS indicators for these children separately from those for other children; (3) develop and implement consumer and provider surveys that elicit information specific to these populations; and (4) develop specific structure, process, and outcomes indicators for children with chronic conditions.

Objective: Children with chronic health conditions face special issues in their interactions with managed care. These children often require additional and more varied services than do other children. Managed care plans increasingly include these children, especially with the growth of Medicaid managed care. This article examines the special issues facing children with chronic conditions and develops strategies for monitoring their care in managed care settings., Methods: The project staff conducted an extensive review of the research and policy literature related to managed care and the special needs of families with children with chronic conditions. The project also reviewed current and proposed plans of federal, state, and private groups for monitoring and, working with parents and other outside groups, identified key issues to consider in developing monitoring plans., Results: The relative rarity of many childhood conditions and the complex interactions among child, family, and community over time make assessment of their care difficult. We describe these child and family characteristics, outline essential features and domains for monitoring systems, and describe population-based and plan-based monitoring systems to assess managed care for these children and their families., Conclusions: Monitoring for children with chronic conditions in managed care arrangements will require public health agencies and health providers to define populations systematically, assess across a variety of conditions, and monitor several domains central to the health of these families.

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.

The need for a widely applicable definition of chronic conditions for research, policy, and program development has led to an extensive review of the development of such definitions, the considerations involved in their use, and some recommendations for a new approach. This paper examines some of the methodologic and conceptual issues related to defining and classifying chronic conditions and describes some consequences resulting from decisions made about these issues. While most examples are taken from child health applications, the basic concepts apply to all age groups. The dominant method for identifying and classifying children as having a chronic condition has relied on the presence of an individual health condition of lengthy duration. This condition-specific or "categorical" approach has increasingly seemed neither pragmatically nor conceptually sound. Thus, the development of a "generic" approach, which focuses on elements that are shared by many conditions, children, and families, is recommended. Such a definition might reflect the child's functional status or ongoing use of medical services over a specified time period. In addition, it is suggested that conditions be classified based on the experience of individual children, thus emphasizing the tremendous variability in expression of seemingly similar conditions.

Four groups of investigators in the Research Consortium on Chronic Illness in Childhood have used the Personal Adjustment and Role Skills Scale (PARS) III to assess the psychosocial adjustment of children with chronic physical illnesses and no mental impairment. The PARS III consists of 28 items that measure psychosocial functioning in six areas: peer relations, dependency, hostility, productivity, anxiety-depression, and withdrawal. Analyses of the measure's reliability and validity, using a total combined sample of 450 school-age children (ages 5-18 years) with a variety of chronic illnesses and three comparison samples of healthy children, provide evidence that the PARS III can be used successfully to assess psychosocial adjustment of children with chronic illnesses and no cognitive impairments.

Children with a chronic health condition have long been considered at excess risk for psychosocial morbidity. Despite an increasing prevalence of chronic childhood conditions and heightened concerns for the quality of life of the chronically ill, population-based studies of behavior problems among children with chronic physical conditions are rare. Findings on the epidemiology of behavior problems in a nationally representative sample of 11,699 children and adolescents aged 4 to 17 years in the United States are reported. Data included a 32-item parent-reported behavior problem index, measures of chronic childhood conditions, measures of school placement and performance, and sociodemographic variables. Analyses confirmed that chronic physical conditions were a significant risk factor for behavior problems, independent of sociodemographic variables. Among children these differences were observed across all subscales; among adolescents the largest differences were found for the Depression/Anxiety and Peer Conflict/Social Withdrawal subscales. Rates of extreme behavior problem scores (those in the top 10th percentile) were 1.55 times higher among children with a chronic health condition compared with children without a chronic condition (95% confidence interval 1.29 to 1.86). These independent odds were lowered to 1.44 when covariates for confounding were introduced via a multivariate logistic regression. Other independent risks included the absence of either biologic parent (odds ratio 2.05), male gender (1.53), low vs high family income (1.30), low vs high maternal education (1.51), and young vs old maternal age at childbirth (2.57). Chronic health conditions were also a major risk factor for placement in special education classes and having to repeat grades. Despite evidence for effective interventions, health services for children with chronic conditions--particularly mental health services--remain fragmented, signaling the need for increased attention to behavioral problems and their treatment among all health professionals caring for children.

Parents of children with a wide variety of chronic health conditions (N = 910) were surveyed about their use of health services, out-of-pocket expenses for health care and related items, and ratings of the importance of health and support services. The financial burden on this middle-class, insured sample was substantial, with about half indicating some out-of-pocket expenses for travel, parking fees, drugs and medication, bills after insurance payments, and doctor charges. The commonalities found in parents' reporting of important services needed support the use of a noncategorical approach to program planning and policy development for children with special health care needs.

The number of days absent from school during the 1979-80 school year for 573 children aged 6-17 years in Berkshire County, Massachusetts was ascertained by parent reporting in a random household survey. Children with a wide range of chronic health impairments were reported as missing more school than their healthy peers (8.7 days vs. 5.8, p less than .001). Although there was a trend for children reported as having functional impairments to miss more school than those with chronic conditions without functional impairments (11.0 vs. 8.1), the difference was not statistically significant. Children with a variety of reported psychosocial difficulties missed more school than those without psychosocial difficulties for the sample as a whole and for those with reported chronic conditions. These findings document support for the assumption that children with a wide range of physical and psychological problems miss more school than their healthy peers and illustrate that the etiology of school absences is multifactoral and reflects behavioral as well as purely physical phenomena.

Children with arthritic diseases and other chronic illnesses will need some form of "special" consideration by the educational system at some point in their school careers. There is great variability among schools, school systems, and states in how the problems of educating chronically ill children are handled and how the state and federal special education laws and health codes are implemented. This paper reviews current practices and makes recommendations for improvements in school-based services to children with chronic illnesses.