New federal policy for children with special health care needs: implications for pediatricians.

Title V of the Social Security Act of 1935 established the nation's first categorical health care program for children: the Crippled Children's Service. In 1985, federal legislation changed the name of the Crippled Children's Service to the Program for Children With Special Health Care Needs. Four years later, new amendments to Title V dramatically altered the Program's mission. States are now required to spend 30% of the funds from the Maternal and Child Health Services block grant on children with special health care needs and to take specific steps toward improving the service system for these children and their families. The new mandate is the only current foundation of a national health policy for children with special health care needs. The 1989 law substantially broadens the mission of the state programs and explicitly recognizes that all children with a special health care need should have access to an appropriate, community-based system of care monitored by state Children with Special Health Care Needs agencies. In addition, states are now required to conduct needs assessments pertaining to these children, to foster local systems of care, and to ensure a high quality of community-based services. Understanding the implications of the new amendments is essential because pediatricians and other child health care professionals have key roles to play in implementing these new policies.

Development and evaluation of a satisfaction scale for parents of children with special health care needs.

OBJECTIVE: This article describes the development and evaluation of the Multidimensional Assessment of Parental Satisfaction (MAPS) for Children With Special Needs, a tool for measuring satisfaction with providers at the individual level of care. METHODS: Two studies were conducted. The first study created and pilot-tested the scale, using data from 158 parents of children with 4 selected chronic conditions to calculate estimates of reliability and validity. Initial psychometric characteristics were sufficiently strong to warrant further testing. The second study was a field trial of the 12-item MAPS, using data from 302 parents of children with diverse chronic conditions. RESULTS: Reliability estimates were >.85. The scale's discriminative validity was supported by sharp distinctions between satisfaction ratings for different types of providers. Correlations in the.80s with general satisfaction items indicated strong concurrent validity. Factor analysis revealed a single factor. CONCLUSIONS: The MAPS has psychometric integrity. Assessing satisfaction for children with special health care needs is a complex, necessary part of a comprehensive assessment of quality of care.

Assuring quality of care for children with special needs in managed care organizations: roles for pediatricians.

Increasing numbers of children with special health care needs are enrolling in managed care programs. Although managed care may improve service coordination and use of primary care, it may also threaten health outcomes for these children by potentially decreasing access to the range of needed services, eroding progress in developing community-based service systems, and failing to assure quality of care. To date, few frameworks have been proposed to assess quality of care for this population of children in managed care organizations. In this article, we adapt the Institute of Medicine's definition of quality and identify six key components: content of service delivery systems, the nature of desired health outcomes, risks associated with service delivery, constraints of care, interpersonal dimensions, and attention to developmental issues. These components can be assessed at three levels: the individual, the health plan, and the community. Pediatricians and other child health professionals have critical roles to play in assuring that policies and practices within managed care organizations promote a high quality of care for this vulnerable population of children.

Expenditures for care of children with chronic illnesses enrolled in the Washington State Medicaid program, fiscal year 1993.

OBJECTIVE: We calculated expenditures for children with one of eight selected chronic health conditions who were enrolled in the Washington State Medicaid program and compared them with payments for all Medicaid-enrolled children. We examined variation in mean, median, and total expenditures and identified expenditure sources. METHODS: This study analyzed Medicaid claims data for 310 977 children aged 0 to 18 who were enrolled at any time in fiscal year 1993. Tracer conditions were used to examine expenditure variation within and between diagnostic groupings. A total of 18 233 children (5.9%) had at least one of the conditions. Expenditures were calculated based on payments made by the Medicaid program. RESULTS: Children with one of the eight selected conditions incurred mean expenditures of $3800, compared with $955 for all Medicaid-enrolled children. Mean payments associated with the selected conditions ranged from 2.5 times to 20 times more than payments to all children. Approximately 10% of children accounted for approximately 70% of the payments in general and in each diagnostic grouping. Variation in mean, median, and total expenditures was extensive among the conditions. For most conditions, inpatient stays accounted for the greatest proportion of expenditures; for some conditions, durable equipment, home nursing, and medication-related services accounted for substantial proportions of total expenditures. CONCLUSIONS: Medical care for children with selected chronic health conditions is 2.5 to 20 times more expensive than children in general, depending on the condition. A relatively few children account for the majority of expenditures. Extensive variation in mean, median, and total expenditures suggests that different conditions will need to be kept distinct for purposes of establishing payment rates. Children with certain conditions are vulnerable to restrictions in specific services, depending on what restrictions are imposed by a financing program. Further analyses are needed to identify risk-adjustment strategies to support delivery of high-quality services to this population of children as they migrate into managed-care environments.

Maternal outcomes of a randomized controlled trial of a community-based support program for families of children with chronic illnesses.

BACKGROUND: Parents of children with chronic illnesses are at high risk for secondary mental health problems, such as anxiety and depression. OBJECTIVE: To evaluate maternal outcomes of a support intervention for families of children with selected chronic illnesses. DESIGN: A randomized controlled clinical trial design with repeated measures 1 year apart. SETTING: A community-based family support intervention linked to subspecialty and general pediatric clinics and practices in a metropolitan area. PARTICIPANTS: A population-based sample of 193 mothers of children aged 7 to 11 years; the children were diagnosed as having diabetes, sickle cell anemia, cystic fibrosis, or moderate to severe asthma. About 15% of the persons contacted refused to participate in the research, and 14% of the families were lost to follow-up. INTERVENTION: The 15-month intervention, the Family-to-Family Network, was designed to enhance mothers' mental health by linking mothers of school-aged children with selected chronic illnesses with mothers of older children with the same condition. The program included telephone contacts, face-to-face visits, and special family events. MAIN OUTCOME MEASURES: Beck Depression Inventory score and the Psychiatric Symptom Index. RESULTS: Maternal anxiety scores for participants in the experimental group decreased during the intervention period for all diagnostic groups and for the total group; scores for the control group increased (F = 5.07, P =.03). In multiple regression analyses, the intervention group was a significant predictor of posttest anxiety scores (P =.03). Effects were greater for mothers with high baseline anxiety (P<.001) and for those who were themselves in poor health (P<.01). CONCLUSIONS: A family support intervention can have beneficial effects on the mental health status of mothers of children with chronic illnesses. This type of intervention can be implemented in diverse pediatric settings.

Relationships of self-esteem and efficacy to psychological distress in mothers of children with chronic physical illnesses.

This study examined relationships of children's illness-related functional limitations and 2 maternal psychological resources, self-esteem and efficacy, to symptoms of psychological distress in 365 urban mothers of 5- to 9-year-old children with diverse chronic illnesses. Multiple regression controlling for sociodemographic variables indicated that presence of functional limitations in the child and lower resources each were associated with higher maternal scores on a psychological symptom scale. Self-esteem had a main effect on maternal distress; however, a significant Efficacy x Functional Status interaction term suggested that mothers experienced greater distress when their children had illness-related functional limitations and maternal efficacy was low. Interventions aimed at enhancing maternal psychological resources may reduce the likelihood of distress in mothers of children with chronic illness.

Schooling, employment, and idleness in young adults with serious physical health conditions: effects of age, disability status, and parental education.

PURPOSE: Education, employment, and "idleness" in young adults with ongoing physical health conditions were examined in relation to parents' education and respondent's age and co-existing disabilities. METHODS: Telephone interviews were conducted with 421 individuals aged 20-24 years randomly drawn from public health programs in two midwestern states. In addition to a chronic health condition, 18% of the sample also had mental retardation, 21% also had a physical disability (but no retardation), and 11% also had a learning disability (but no mental retardation or physical disability). Youth were considered "idle" if they were not in school, not employed, not married, and had no children. RESULTS: Thirty-seven percent of the sample were enrolled in an educational program, and 48% were employed either part-time or full-time. Seventeen percent were both in school and employed, 50% were in school or employed, and 33% were neither in school nor working. Overall, 23% of the sample were idle. Youth with mental retardation were two to three times more likely to be in school compared to youth with a chronic physical condition alone. Youth with mental retardation and physical disabilities were less likely to be employed and more likely to be idle compared to youth with only a chronic condition. Parental education affected rates of schooling and employment. Compared to a general population sample of youth in the same states, youth with ongoing health problems were at higher risk for idleness. CONCLUSIONS: Youth with chronic health conditions and either mental retardation or physical disabilities are at higher risk for idleness compared to youth with a chronic condition alone or to youth in general.

The organization of services for chronically ill children and their families.

Despite a political climate that deters optimism for rapid growth in the field of maternal and child health, we believe that there are reasonable steps that can and ought to be taken in the years immediately ahead. These steps would lead to important and lasting changes in the delivery, organization, and financing of services to chronically ill children and their families. Furthermore, pediatricians can play important roles--as they have historically--in reshaping care for children with special needs. First, children with chronic illness and their families require a set of services substantially different from those required by the majority of the nation's children. Just as there is no escaping the presence of a chronic illness for a child and family, the health care system cannot escape its responsibility to provide these services. This nation has been extraordinarily attentive to the medical services that these children need. Advances in the diagnostic and medical treatment procedures for many chronic illnesses have been remarkable, allowing many children to live far longer and in much better health than anyone would have expected two decades ago. This nation has not been so attentive to other services. A child with diabetes may have the finest medical care available in the region, yet her family lacks the money for gas to visit her in the hospital. The cystic fibrosis specialist may develop a comprehensive management strategy for his patient, but it fails to have full effect because the family's local pediatrician remains uninformed. These and many other examples convince us that the first step toward improving the organization of services for these children and their families must involve sustained national attention to their broad and special needs. Pediatricians are in an excellent position for this effort. Though most pediatricians will not have in their practice many children with the same chronic illness, they are likely to be the only medical practitioners who will get to know a broad spectrum of chronically ill children and their families. Because of this perspective they can be a truly informed and effective voice, articulating to their local communities the need for special services for this population of children. Second, services should be organized in such a way as to de-emphasize dependence on expensive tertiary care hospitals and instead to foster the delivery of care closer to the child's and family's own community.(ABSTRACT TRUNCATED AT 400 WORDS)

Program priorities of crippled children's agencies: a survey.

State Crippled Children's (CC) programs are known for their diversity in organization and varying coverage of diagnostic categories. Relatively little information is available concerning the programmatic priorities of CC agencies. To identify the activities central to the mission of State CC agencies, a survey was undertaken. Results from the survey revealed considerable unanimity among CC directors in identifying activities deemed to be very important to their agencies' missions. However, CC program directors indicated that their agencies were unable to spend sufficient amounts of time working on many of these activities. With few exceptions, the same activities were accorded high priority regardless of the particular organizational type of CC program and regardless of the tenure of the director. Directors of CC programs were also consistent in identifying activities that were relatively less important to their agencies' missions, including activities related to community-based care. Together with improvements in the treatment of childhood chronic illness, changes in the availability and financing of specialty medical care have substantially altered the problems that now face State CC programs. Despite major differences across the State CC programs, survey results reflect a broad consensus among CC directors concerning the current role of their agencies in the care of children with special health needs. Such a consensus may be an important element in gaining the additional resources needed to address current problems and to ensure high quality of care for these children and their families.

Comparison of risk adjusters for medicaid-enrolled children with and without chronic health conditions.

OBJECTIVE: Several capitation payment systems have been developed and implemented recently by public and private insurers as well as by individual managed care organizations. Many pediatricians have expressed concern that methods for establishing capitation rates may not adequately account for the higher expected expenditures for children with chronic health conditions. In this study, we evaluate a demographic- and 4 diagnosis-based models, paying particular attention to their performance for children with chronic health conditions. METHODS: We selected children 18 years of age and under who were enrolled in the Maryland Medicaid Program in 1995 and 1996. We defined the population of children with chronic health conditions using ICD-9 codes. Individual and group-level analyses were utilized to measure the ability of the different risk adjustment models to predict expenditures in 1996 based upon information available in 1995. RESULTS: All 4 diagnosis-based models significantly outperformed the demographic model for children overall and for children with chronic health conditions. Differences between diagnosis-based models were small, especially as the size of test populations increased. CONCLUSIONS: Risk adjustment methods that account directly for health status promise to reduce incentives to exclude children with chronic illnesses from managed care plans and to provide a foundation for more appropriate payments to pediatricians who care for these children.

Maternal reports of raising children with chronic illnesses:the prevalence of positive thinking.

OBJECTIVE: To examine maternal reports of the positive impact and potential benefits of a child's chronic health condition. DESIGN AND METHODS: A total of 190 mothers and their children with chronic illnesses, including sickle cell disease, cystic fibrosis, diabetes mellitus, and asthma, were recruited from 12 specialty or general pediatric clinics in Baltimore, Md. Standardized interviews were conducted with the mothers and included demographics, condition-related variables, and positive aspects of raising a child with a chronic condition. RESULTS: Eighty-eight percent of the mothers felt better about themselves by learning to manage their child's chronic condition; 70% felt that their families were stronger because of their child's condition; and 80% felt that their family had benefited in some way from having a child with a chronic illness. Ninety-eight percent of the mothers endorsed at least 1 positive item; 58% endorsed all 3. CONCLUSIONS: Asking mothers about the positive impact on a family of a child's chronic illness captures an important part of the experience of caregiving. Physicians' recognition and encouragement of this positive outlook may help families continue to face the challenges of raising a child with a chronic illness.

Perception of the impact of a child's chronic illness: does it predict maternal mental health?

Longitudinal data were used to investigate direct and indirect effects of demographic factors, parameters of chronic health conditions, service use variables, and perception of family impact of illness on mental health of 169 mothers of children with diverse chronic health conditions. Bivariate analyses indicated that baseline assessments of demographic factors, condition parameters, and service use were: (1) generally unrelated to maternal mental health at 1 year and (2) modestly related to maternal perception of the condition's impact on the family 1 year later. Perceived impact and maternal mental health themselves were moderately related. Multivariate analyses indicated that the need to watch for changes in the child's condition, the presence of communication or speech problems, and the number of hospitalizations in the previous year predicted maternal perceptions of the impact of the condition 1 year later. Mothers perception of impact had a direct effect on mothers' mental health after accounting for condition parameters. Results suggest that condition parameters and service use can affect maternal mental health through mothers' perceptions of the impact of the condition on family life. Implications for interventions to prevent maternal health problems are discussed.

Young women with physical disabilities: risk factors for symptoms of eating disorders.

Women with disabilities are at risk for poor psychological adjustment and unhealthy weight-control practices. This study was conducted to determine the prevalence of symptoms of eating disorders in a clinic-based sample of women who had two disabling conditions and to identify condition-related risk factors that were linked to these symptoms. A cross-sectional survey of 71 women (mean age = 23 yr) with spina bifida or rheumatologically related illnesses was conducted to assess the symptoms of eating disorders, condition-related characteristics, and weight-control practices. Symptoms of eating disorders were measured by the Eating Disorders Inventory (EDI). Eight percent of the respondents reported a sufficient number of symptoms of eating disorders to indicate a possible clinical disorder. More than 20% of the respondents scored at or above the clinical cut-point on at least one of the eight EDI subscales. Selected condition-related characteristics (multiple conditions, condition-affected driving, and uncertainty of illness course) were associated with EDI scores after adjusting for demographic variables, family factors, and weight-control practices.

Self-esteem of young adults with chronic health conditions: appraising the effects of perceived impact.

The relationships between selected condition characteristics and self-esteem were investigated in a randomly drawn, community-based sample of 286 young adults with chronic illnesses and disabilities. Whether appraisals of the impact of the condition mediated relationships between condition characteristics and self-esteem, as measured by the Rosenberg Self-Esteem Scale, was also measured. As a group, the youth in this sample reported positive self-esteem. When sociodemographic and condition-related variables were considered simultaneously, maternal education, unpredictability of symptoms, prognosis, sensory impairment, and the presence of a co-occurring learning disability were found to have direct effects on esteem. Perceived impact mediated the relationship between condition characteristics and self-esteem. The results are discussed in relation to the role of impact appraisal in determining the emotional well-being of young adults with chronic illnesses.

Psychometric properties of the maternal worry scale for children with chronic illness.

OBJECTIVE: To develop and evaluate the psychometric properties of a scale termed the Maternal Worry Scale (MWS) designed to measure maternal worry about children with chronic illnesses. METHOD: The sample consisted of 140 mothers of young children (mean age 8.2 years, 64% female) with a chronic illness (juvenile rheumatoid arthritis, diabetes, or sickle cell disease). Maternal worry, depression, and anxiety, as well as information about the child's health and behavior, were assessed through structured interviews. RESULTS: The MWS had good internal consistency (alpha = .94) and test-retest reliability (r = .84). Analyses indicated a single-factor structure for the MWS. Estimates of construct validity were quite positive: the MWS was moderately correlated with parental depression (r = .34-.39), anxiety (r = .27), and maternal report of child behavior problems (r = .25 [externalizing], r = .46 [internalizing]). CONCLUSIONS: The results suggest that the MWS is a useful, reliable, and valid scale for measuring worry of mothers raising children with chronic health conditions.

Maternal perceptions of pediatric providers for children with chronic illnesses.

OBJECTIVE: To identify maternal perceptions of general and subspecialty pediatric providers of children with selected chronic illnesses. METHOD: Cross-sectional analyses of survey data. Sample was recruited from eight specialty and four general pediatric practices in an urban setting. Interviews were conducted with mothers of 159 children with one of four chronic illnesses: sickle cell anemia, cystic fibrosis, diabetes, and moderate/severe asthma. About 56% of the participants were white; 40% were African-American; 11% were receiving public assistance. The main outcome measures were maternal reports of which pediatric providers: are visited in the past year, are seen most frequently, have been seen over the longest period of time, relied on most, and know their family best. Rates of dissatisfaction with these providers are also reported. RESULTS: Overall, more mothers reported that they relied on their general pediatric providers, saw them more frequently, and had longer relationships with them than their subspecialty pediatric providers. However, mothers were more satisfied with the care they received from their subspecialty providers than from their primary care providers. CONCLUSIONS: Our findings illustrate the complexity of maternal perceptions of the different roles that general and subspecialty pediatric providers play in the care of children with chronic illness.

Health care utilization by children with chronic illnesses: a comparison of medicaid and employer-insured managed care.

OBJECTIVES: This study compared utilization of health care services by children with chronic conditions who were insured by either Medicaid or an employer group in 1992 and 1993. Five chronic conditions were selected to illustrate patterns of service use: asthma, attention deficit disorder, diabetes, epilepsy, and sickle cell anemia. METHODOLOGY: Administrative databases were used to develop estimates of health services utilization for children <18 years of age with the five selected conditions, who had been enrolled for at least 6 continuous months. All claims for a child identified with one of these five conditions were included in the analysis, including claims for diagnoses and procedures not directly related to the primary diagnosis. Estimates were derived for eight services (eg, hospital admissions, emergency department (ED), home health). Data were used from two Independent Practice Association model health plans in two states. Differences across the states were controlled by selecting one Medicaid and one employer-insured program from each of the two plans in both states. Regional variation was controlled for because both health plans were located in one geographical region. In each case, physicians were paid on a fee-for-service basis, with generally open access to specialists rather than primary care gatekeeper models of delivery: t tests were used to compare service use rates between Medicaid and employer-insured populations. RESULTS: A total of 8668 children across all health plan groups had at least one of the selected conditions. Because Medicaid enrolled-children tended to be younger, analyses were adjusted for age. In both systems, a greater percentage of Medicaid children had these five study conditions (5%) compared with employer-insured children (3%), suggesting that the Medicaid population was sicker. Mean length of enrollment during the 2-year study was longer for children in employer-insured programs. Children with chronic conditions enrolled in Medicaid managed care generally used services at a higher rate compared with children with similar conditions enrolled in employer-insured managed care. The extent of the increased use varied by condition, by service type, and by plan. Children with any of the chronic conditions studied had from 2 to almost 5 times more ED visits if they were enrolled in Medicaid than if they were enrolled in employer-based managed care, depending on the specific condition. In one of the two plans, Medicaid-enrolled children had more outpatient services, laboratory services, and radiography services than their counterparts in employer-based managed care. The same pattern of use was found for home health services (except for children with diabetes) and for office visits (except for children with sickle cell). The results show higher use of all services by children with asthma and diabetes in Medicaid managed care compared with employer-based managed care. In contrast, the pattern is mixed for children with epilepsy and sickle cell. The sample size of children with these conditions was smaller than with the three other conditions, which may account, in part, for a varied pattern of results. The pattern of use for attention deficit hyperactivity disorder (ADHD) was generally different from the other conditions. Children with ADHD in employer-based managed care had more hospital admissions, hospital days, and office visits than their counterparts in Medicaid managed care. In contrast, Medicaid-enrolled children with ADHD had more ED visits, laboratory services, outpatient hospital visits, and radiography services. Other than ED visits, the differences in service use between Medicaid and employer-insured children with ADHD were minimal. Of note, the pattern for ADHD is the same for most services for Plans A and B (excluding home health visits). This utilization pattern may reflect service use for comorbid conditions. Part of this difference may be explained by differences in Medicaid e

Burn-related physical impairments and disabilities in Ghanaian children: prevalence and risk factors.

The prevalence, and risk factors for childhood burn-related physical impairments and disabilities in Ghana were determined with data from mothers of burned children. Of 650 identified burns 113 (174%) resulted in physical impairments, 5 (1%) resulted in physical disabilities. After multivariate adjustment, the odds of developing burn-related physical impairments were increased by burns with protracted healing (odds ratio [OR] = 5.80), burns to the head/neck (OR = 344), burns involving skin removal (OR = 3.04), and wound infection (OR = 2.03) and decreased by first aid (OR = 0.51) and maternal education (OR = 0.54). Education on the proper care of burns may prevent burn-related physical impairments. The results also underscore the link between maternal education and child morbidity.