The Health Status Questionnaire: achieving concordance with published disability criteria. (25/418)

AIM: To compare the Health Status Questionnaire with established methods of assessing disability in preterm and very low birthweight infants. METHOD: All survivors of gestational age <31 weeks or birth weight <1500 g, born in 1994 to women resident in Wales were identified. Assessments were by a single observer at a median corrected age of 28.3 months and included the Health Status Questionnaire and a Griffiths developmental test. Outcome was also described according to criteria for disability used in three published studies. RESULTS: There were 297 survivors of which 279 (94%) were assessed. Using the Health Status Questionnaire, severe disability was found in 12.9% of cases compared to 8.2%, 2.9%, and 3.6% using the Northern, Victorian, and Mersey outcome criteria respectively. Following the simple modifications of removing the growth criteria from the Health Status Questionnaire and reclassifying the severe disability group in the Victorian and Mersey criteria, comparable severe disability rates ranging from 7.9% to 9.3% were found. CONCLUSION: The Health Status Questionnaire requires no formal training, is rapid to perform, and with simple modifications provides comparable results to established methods of assessing disability. Its use in the follow up of preterm and very low birthweight infants should be encouraged.  (+info)

Knowledge of welfare reform program provisions among families of children with chronic conditions. (26/418)

OBJECTIVES: This study examined the knowledge of and application for health-related welfare program provisions among beneficiaries with children who have chronic conditions. METHODS: We administered a survey to 143 parents of children aged 3 to 16 years with asthma or sickle cell anemia in 2 clinical settings. RESULTS: Respondents indicated incomplete knowledge of work requirements (69.9%) and work exemptions (50.3%). Applications for work exemptions were rare, even among Supplemental Security Income recipients (30%). CONCLUSIONS: Welfare beneficiaries with children who have chronic conditions show limited knowledge and use of program provisions, placing them at risk for penalties or benefit termination.  (+info)

Family adjustment to childhood developmental disability: a measure of parent appraisal of family impacts. (27/418)

OBJECTIVE: To develop the Family Impact of Childhood Disability Scale (FICD) to assess subjective interpretation or "primary appraisal" of parents regarding the impact of a child with developmental disabilities on the family. METHOD: A random sample of 87 families was assessed while children with developmental disabilities were in the preschool years. After 7 years had elapsed, 64 of these families were interviewed again when the children were in the preteen years. A set of standardized self-report measures provided mother and father views of child, parent, and family functioning. RESULTS: The FICD demonstrated adequate internal consistency, with some evidence of discriminant and predictive validity. The FICD total score, based on the discrepancy between positive and negative subscale scores, was found to be a significant predictor of future parenting stress of mothers and of fathers, even when controlling for other important explanatory variables such as marital adjustment and level of disability in a child. CONCLUSIONS: The 15-item FICD offers a brief assessment of both positive and negative parent appraisals, with a total discrepancy score that predicts long-term parenting stress.  (+info)

The Perruche judgment and the "right not to be born". (28/418)

The French government has given in to public pressure and overturned a controversial legal ruling which recognised the right of a disabled child to seek damages. Most notably, the ruling, widely described as establishing a child's right "not to be born", had provoked "outrage" amongst groups defending the rights of the disabled and led to a ban on prenatal scans by French gynaecologists. Once again, only parents will be able to seek damages but some people think the ruling has been misinterpreted.  (+info)

Parent factors and adolescent sickle cell disease: associations with patterns of health service use. (29/418)

OBJECTIVE: To examine relationships among parent characteristics (parent-adolescent relationship, parents' illness knowledge, and parents' perceptions of illness-related burden) and use of routine and urgent health services among adolescents with sickle cell disease (SCD). METHOD: Seventy adolescents, ages 12-18, and their parents completed questionnaires assessing illness knowledge, perceptions of illness burden, parent-adolescent relationships, and adolescents' psychological functioning. Information about pain, routine services (i.e., care at home, clinic visits) and urgent service use (i.e., emergency department visits, hospitalizations) was obtained from parents and medical records. RESULTS: After we controlled for disease severity and life events, parents' perception of more illness-related stress was the strongest predictor of both types of service use. Greater parental knowledge about SCD also related to higher frequency of routine service use. Disease severity was strongly associated with frequency of urgent service use. CONCLUSIONS: Both parent characteristics and disease severity were associated with patterns of service use. Enhancing aspects of parental functioning may help families make adaptive decisions regarding health care services for SCD pain management.  (+info)

Estimating pediatric primary care provider visits in a capitated environment: encounter vs. claims databases. (30/418)

PURPOSE: To evaluate the accuracy of insurance claims data indicating underutilization of primary care visits by children with special health care needs (CSHCN). DESIGN: The study was a retrospective comparison of primary care provider (PCP) utilization by 1,131 CSHCN, using secondary data from electronic claims-and-encounters databases in a Medicaid health maintenance organization (HMO) and a commercial HMO. METHODOLOGY: The study was conducted at the Children's Clinics for Rehabilitative Services (Children's Clinics) in Tucson, Ariz., a provider of specialty care to CSHCN. All the children in the study were eligible for specialty services under Arizona's statewide program for CSHCN and were simultaneously enrolled, from Oct. 1, 1995 through Sept. 30, 1996, in either one or both of the managed care plans for their primary care. Identical PCP-visit information for the same 1-year period was collected from the plans' claims-and-encounters databases, and the number of primary care visits as computed from both databases was compared. PRINCIPAL FINDINGS: Health plan claims data show that only 14 percent of the patients visited a PCP during the course of a year. The encounter data indicate that 59 percent of the same cohort had PCP visits. CONCLUSIONS: Encounter databases capture more information about PCP visits than insurance claims databases in capitated environments.  (+info)

Health services research for children with disabilities. (31/418)

Growing numbers of children and adolescents have long-term disabilities. Research on the epidemiology, clinical care and its improvement, organization, and financing of care for children with disabilities is very limited. Given the cost burden of the nation's chronic diseases and disabilities, the lack of investigation into necessary clinical activities seems remarkable. This article reviews recent research on health services relating to children and adolescents with disabilities and outlines a research agenda in clinical and health services for this population in these study areas.  (+info)

Employment barriers among welfare recipients and applicants with chronically ill children. (32/418)

OBJECTIVES: This study evaluated the association of chronic child illness with parental employment among individuals who have had contact with the welfare system. METHODS: Parents of children with chronic illnesses were interviewed. RESULTS: Current and former welfare recipients and welfare applicants were more likely than those with no contact with the welfare system to report that their children's illnesses adversely affected their employment. Logistic regression analyses showed that current and former receipt of welfare, pending welfare application, and high rates of child health care use were predictors of unemployment. CONCLUSIONS: Welfare recipients and applicants with chronically ill children face substantial barriers to employment, including high child health care use rates and missed work. The welfare reform reauthorization scheduled to occur later in 2002 should address the implications of chronic child illness for parental employment.  (+info)