Ruth E. K. Stein

Identifying children with special health care needs: Development and evaluation of a short screening instrument

BACKGROUND Public agencies, health care plans, providers, and consumer organizations share the need to monitor the health care needs and quality of care for children with special health care needs (CSHCN). Doing so requires a definition of CSHCN and a precise methodology for operationalizing that definition. RESEARCH OBJECTIVES The purpose of this study was to develop an efficient and flexible consequence-based screening instrument that identifies CSHCN across populations with rates commensurate with other studies of CSHCN. METHODS The CSHCN Screener was developed using the federal Maternal and Child Health Bureau (MCHB) definition of CSHCN and building on the conceptual and empirical properties of the Questionnaire for Identifying Children with Chronic Conditions (QuICCC) and other consequence-based models for identifying CSHCN. The CSHCN Screener was administered to 3 samples: a national sample of households with children (n = 17985), children enrolled in Medicaid managed care health plans (n = 3894), and children receiving Supplemental Security Income (SSI) benefits in Washington State (n = 1550). The efficiency, impact of further item reduction, and flexibility of administration mode were evaluated. Rates and expected variation in rates across demographic groups of children positively identified by one or more of the 5 CSHCN Screener item sequences in each sample were examined and multinomial logistic regression analysis were conducted to evaluate the effect of child characteristics in predicting positive identification. RESULTS The CSHCN Screener took approximately 1 minute per child to administer by telephone and 2.1 minutes per household. During self-administration, over 98% of respondents completed each of the 5 CSHCN Screener item sequences, and respondents accurately followed each of the item skip patterns 94% of the time. Mailed surveys and telephone-administered surveys led to similar rates of positive identification in the same sample. Two Screener items would have identified 80%-90% of children positively identified as CSHCN across the study samples, although using only 2 items eliminates some children with more complex health needs. Rates of children identified by the CSHCN Screener varied according to age, sex, race/ethnicity, health status, and utilization of health services. CONCLUSIONS Results of this study indicate that the CSHCN Screener requires minimal time to administer, is acceptable for use as both an interview-based and self-administered survey, and that rates of children positively identified by the CSHCN Screener vary according to child demographic, health, and health care-need characteristics. The CSHCN Screener provides a comprehensive yet parsimonious and flexible method for identifying CSHCN, making it more feasible than existing measures for standardized use across public agencies, health care plans, and other users.

Functional status II(R). A measure of child health status.

Few measures are available to assess the health status of the growing numbers of children who now survive long-term with chronic physical disorders. A Functional Status Measure, FS I, that had considerable promise for measuring individual child health status and characterizing populations was developed in 1978. This paper describes a revised version of that measure. Data were collected using a new sample of 732 children (aged 0 to 16 years) with and without chronic physical conditions in order to assess the psychometric properties of the new instrument. The FS II(R) has both a long (43-item) and a short (14-item) version. The long version has a total score derived from a one factor solution and a two factor solution consisting of General Health and Stage Specific factors for each age group. The 14-item version of FS II(R) uses a common core of items across the entire age span. Internal consistency estimates (alphas) for the factor-based and 14-item versions are all ≥ 0.80. At each age, long and short versions behave similarly in a wide range of tests of discriminant, construct, and content validity—strong support that they constitute a common measure. The FS II(R) has excellent psychometric properties and provides concise measures of health status of children spanning the entire childhood age range from 0 to 16 years. It has particular strengths for the measurement of health status of children with chronic physical conditions who are not disabled.

Framework for identifying children who have chronic conditions: The case for a new definition

Efforts to identify children with ongoing health conditions generally rely on lists of diagnoses. However, there has been a growing trend to use a noncategorical, or generic, approach in which such children are identified by the consequences of their condition. Recent legislation and the Supreme Court decision in Sullivan v Zebley adopt this broader concept and mandate that a noncategorical approach be used in determining eligibility for services and benefits. Traditional condition lists are less desirable because (1) every disorder to which children are subject cannot be included, (2) diagnoses may be applied inconsistently by clinicians and across settings, (3) condition labels alone do not convey the extent of morbidity for individuals, (4) there is a bias toward identifying only those children who have access to the medical care system, and (5) there is often a gap between emergence of symptoms or consequences and diagnosis. We developed a noncategorical framework for identifying children with ongoing health conditions that responds to the federal mandate and uses consequences of disorders, rather than diagnostic labels. It can be applied to meet the objectives of services, research, policy, reimbursement, or program eligibility; is consistent across diagnoses; is descriptive of the impact of morbidity; is adaptable to meet specific purposes; and can be modified by imposing different severity levels. Our screening tool will soon be available for practical use.

The impact on family scale revisited: further psychometric data.

ABSTRACT. This article presents additional psychometric data and a revised scoring procedure for the widely used Impact on Family Scale. The analyses were conducted with three datasets produced by validation studies conducted at the originating institution with populations drawn from the same inner-city communities as the original sample. The instrument has one robust factor representing overall family impact. In addition, there are two subsidiary sets of items (financial impact and sibling impact) of possible interest to future researchers. The correlation of the previously published and new Total Score is .97. Data indicate that the Impact on Family Scale is an easily administered, reliable, and valid measure of a family member’s perception of the effect of a child’s chronic condition that can be used across diagnostic groups. The Impact on Family Scale fills a gap in the measurement of the psychological and social consequences of chronic disorders in childhood that can be useful in clinical and health services research.

Guidelines for Adolescent Depression in Primary Care (GLAD-PC): II. Treatment and Ongoing Management

OBJECTIVES. To develop clinical practice guidelines to assist primary care clinicians in the management of adolescent depression. This second part of the guidelines addresses treatment and ongoing management of adolescent depression in the primary care setting. METHODS. Using a combination of evidence- and consensus-based methodologies, guidelines were developed in 5 phases as informed by (1) current scientific evidence (published and unpublished), (2) a series of focus groups, (3) a formal survey, (4) an expert consensus workshop, and (5) revision and iteration among members of the steering committee. RESULTS. These guidelines are targeted for youth aged 10 to 21 years and offer recommendations for the management of adolescent depression in primary care, including (1) active monitoring of mildly depressed youth, (2) details for the specific application of evidence-based medication and psychotherapeutic approaches in cases of moderate-to-severe depression, (3) careful monitoring of adverse effects, (4) consultation and coordination of care with mental health specialists, (5) ongoing tracking of outcomes, and (6) specific steps to be taken in instances of partial or no improvement after an initial treatment has begun. The strength of each recommendation and its evidence base are summarized. CONCLUSIONS. These guidelines cannot replace clinical judgment, and they should not be the sole source of guidance for adolescent depression management. Nonetheless, the guidelines may assist primary care clinicians in the management of depressed adolescents in an era of great clinical need and a shortage of mental health specialists. Additional research concerning the management of youth with depression in primary care is needed, including the usability, feasibility, and sustainability of guidelines and determination of the extent to which the guidelines actually improve outcomes of youth with depression.

Cumulative Social Disadvantage and Child Health

CONTEXT. Disparities in child health are a major public health concern. However, it is unclear whether these are predominantly the result of low income, race, or other social risk factors that may contribute to their health disadvantage. Although others have examined the effects of the accumulation of risk factors, this methodology has not been applied to child health. OBJECTIVE. We tested 4 social risk factors (poverty, minority race/ethnicity, low parental education, and not living with both biological parents) to assess whether they have cumulative effects on child health and examined whether access to health care reduced health disparities. DESIGN. We analyzed data on 57553 children <18 years from the 1994 and 1995 National Health Interview Survey Disability Supplement. Of the 4 risk factors, 3 (poverty, low parental education, and single-parent household) were consistently associated with child health. These were summed, generating the Social Disadvantage Index (range: 0–3). RESULTS. A total of 43.6% of children had no social disadvantages, 30.8% had 1, 15.6% had 2, and 10.0% had all 3. Compared with those with no social disadvantages, the odds ratios (ORs) of being in “good, fair, or poor health” (versus “excellent or very good”) were 1.95 for 1 risk, 3.22 for 2 risks, and 4.06 for 3 risks. ORs of having a chronic condition increased from 1.25 (1 risk) to 1.60 (2 risks) to 2.11 (3 risks). ORs for activity limitation were 1.51 (1 risk) to 2.14 (2 risks) and 2.88 (3 risks). Controlling for health insurance did not affect these findings. CONCLUSIONS. The accumulation of social disadvantage among children was strongly associated with poorer child health and having insurance did not reduce the observed health disparities.

School Recess and Group Classroom Behavior

OBJECTIVES. This study examines the amount of recess that children 8 to 9 years of age receive in the United States and compares the group classroom behavior of children receiving daily recess with that of children not receiving daily recess. METHODS. This is a secondary analysis of a public-use data set, the Early Childhood Longitudinal Study, Kindergarten Class of 1998–1999, third-grade data set. Children were categorized into 2 levels of recess exposure, that is, none/minimal break (<1 break of 15 minutes/day) or some recess. Some recess was further categorized into 5 levels on the basis of frequency and duration of recess. Child, parent, school, and classroom characteristics of those with and without recess were compared. The group classroom behavior was assessed by using the teachers rating of class behavior. RESULTS. Complete data were available for 10301 to 11624 children 8 to 9 years of age. There were equal numbers of boys and girls (boys: 50.3%). Children exposed to none/minimal break (30%) were much more likely to be black, to be from families with lower incomes and lower levels of education, to live in large cities, to be from the Northeast or South, and to attend public school, compared with those with recess. Teachers rating of classroom behavior scores were better for children with some recess than for those with none/minimal break. This finding was maintained in multivariate regression analysis. However, among children receiving daily recess, the teachers rating of class behavior scores did not differ significantly according to the level of exposure. CONCLUSIONS. These results indicated that, among 8- to 9-year-old children, having ≥1 daily recess period of >15 minutes in length was associated with better teachers rating of class behavior scores. This study suggests that schoolchildren in this age group should be provided with daily recess.

What diagnosis does not tell: The case for a noncategorical approach to chronic illness in childhood

Medical training, practice and research are traditionally organized around body systems and disease categories. There is, however, a disciplinary split over the question of whether the clinical diagnosis is the central issue in describing an individual with an illness. Data from two studies, one institutional and one population based (The Pediatric Ambulatory Care Treatment Study and the National Health Examination Survey--Cycles II and III), are used to test the usefulness of diagnostic groupings in examining correlates of illness. A series of analyses of variance with the diagnostic groupings as the independent variable and a range of psychological, social and educational measures as the dependent variables reveal only the number of significant differences expected by chance. The only area in which a pattern of significant differences is found in the familys interaction with the health care delivery system. These results indicate that there is more variability within diagnostic groupings than between them and suggest that diagnosis is not a helpful categorization in the examination of psychological and social variables. While not surprising to social scientists, these data suggest the need for a major reorientation of the research paradigm when examining the psychological, social, rehabilitative and preventive issues raised by chronic illness in children and families.

Guidelines for Adolescent Depression in Primary Care (GLAD-PC): I. Identification, Assessment, and Initial Management

OBJECTIVES. To develop clinical practice guidelines to assist primary care clinicians in the management of adolescent depression. This first part of the guidelines addresses identification, assessment, and initial management of adolescent depression in primary care settings. METHODS. By using a combination of evidence- and consensus-based methodologies, guidelines were developed by an expert steering committee in 5 phases, as informed by (1) current scientific evidence (published and unpublished), (2) a series of focus groups, (3) a formal survey, (4) an expert consensus workshop, and (5) draft revision and iteration among members of the steering committee. RESULTS. Guidelines were developed for youth aged 10 to 21 years and correspond to initial phases of adolescent depression management in primary care, including identification of at-risk youth, assessment and diagnosis, and initial management. The strength of each recommendation and its evidence base are summarized. The identification, assessment, and initial management section of the guidelines includes recommendations for (1) identification of depression in youth at high risk, (2) systematic assessment procedures using reliable depression scales, patient and caregiver interviews, and Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition criteria, (3) patient and family psychoeducation, (4) establishing relevant links in the community, and (5) the establishment of a safety plan. CONCLUSIONS. This part of the guidelines is intended to assist primary care clinicians in the identification and initial management of depressed adolescents in an era of great clinical need and a shortage of mental health specialists but cannot replace clinical judgment; these guidelines are not meant to be the sole source of guidance for adolescent depression management. Additional research that addresses the identification and initial management of depressed youth in primary care is needed, including empirical testing of these guidelines.

Children's Health, the Nation's Wealth: Assessing and Improving Child Health

can wait. The child cannot. Now is the time his bones are being formed, his blood is being made, his mind is being developed. To him we cannot say tomorrow, his name is today. -Gabriela Mistral Children represent our nations future—they will create the families, power the workforce, and make American democracy work in the years ahead. Their health today, important in its own right, also will have a profound effect on their health as adults.