RESUMEN
OBJECTIVES: To compare the impact of burden of illness on families of teenaged children who were extremely low birth weight (ELBW) with that of members of a term control group (C) and to determine whether the attitudes toward active treatment of very immature infants differ between the 2 cohorts. DESIGN: In a cross-sectional survey, parents of 145 (86%) of 169 members of an ELBW cohort and 123 (85%) of 145 members of a control cohort completed a 23-item self-completed questionnaire encompassing occupational, marital, and family-related issues and attitudes toward treatment of infants of borderline viability. RESULTS: Both positive (P =.0003) and negative (P <.005) effects on marriage were higher in parents of the ELBW group; although more parents in the ELBW group felt that their child had brought their families closer together (P =.0001), their child's health had adversely affected their emotional health (P =.02) and that of other children in the family (P =.003). Despite this result, a significant proportion of parents from both cohorts supported saving all infants (ELBW 68%; C 58%) and favored the role of parents in decision making (ELBW 98%; C 97%). CONCLUSIONS: In the long term, it appears that parents of ELBW children have adjusted fairly well to their work and family life. Although some negative effects were identified, there was still considerable support for active treatment of infants of borderline viability.
Asunto(s)
Costo de Enfermedad , Discapacidades del Desarrollo/economía , Familia/psicología , Recién Nacido de Bajo Peso , Recien Nacido Prematuro , Adaptación Psicológica , Adolescente , Estudios de Cohortes , Estudios Transversales , Toma de Decisiones , Ética Médica , Humanos , Recién Nacido , Cuidado Intensivo NeonatalRESUMEN
El objetivo de este estudio fue medir la prevalencia informada de maltrato en la niñez en escolares adolescentes de Santiago de Chile, así como explorar su asociación con 3 variables: ser hijos de padres separados, con tratamiento por alcoholismo o con psicopatología que motivó una hospitalización. En cuanto a las consecuencias, se exploró la relación con la frecuencia de consumo de sustancias químicas y la presencia de síntomas emocionales. La población objetivo fueron 365.425 escolares entre 10 y 19 años, pertenecientes a colegios municipalizados y particulares subvencionados. Se encuestaron 2.058 alumnos de 41 colegios. El instrumento utilizado fue la Escala de Conductas de Riesgo Adolescente (ECRA), adaptada del Minnesota Adolescent Health Survey (MAHS). La frecuencia global del antecedente de maltrato físico fue de 13.9 porciento y la de maltrato sexual de 9.3 porciento. No hubo diferencias significativas por nivel socioeconómico de la comuna. Las frecuencias fueron mayores entre hijos de padres tratados por alcoholismo, hospitalizados por un cuadro psiquiátrico o separados. Los nilos con antecedentes de maltrato físico presentan mayor frecuencia de síntomas psiquiátricos y de consultas a profesionales de la salud mental, así como de conductas de riesgo. Se revisan posibles explicaciones de estos hallazgos, así como sus implicancias preventivas
Asunto(s)
Humanos , Masculino , Femenino , Adolescente , Abuso Sexual Infantil/estadística & datos numéricos , Maltrato a los Niños/estadística & datos numéricos , Trastornos de la Conducta Infantil/epidemiología , Riesgo Atribuible , Hijo de Padres Discapacitados/estadística & datos numéricos , Conducta del Adolescente , Alcoholismo/epidemiología , Encuestas Epidemiológicas , Factores SocioeconómicosRESUMEN
OBJECTIVE: To apply a multiattribute health status (MAHS) classification system to data available on two cohorts of school-aged children to describe several dimensions of health simultaneously. The MAHS system describes both the type and severity of functional limitations according to seven attributes: sensation, mobility, emotion, cognition, self-care, pain, and fertility (fertility not applicable in this study), with four or five levels of function within each attribute. DESIGN: The MAHS system was applied retrospectively to clinical and psychometric data collected prospectively at age 8 years. MAHS application was by selection of items from the database and development of computer-assisted algorithms to assign functional levels within each attribute. SETTING: Geographically defined region in central-west Ontario, Canada. PARTICIPANTS: One hundred fifty-six extremely low birth weight (ELBW) survivors born between 1977 and 1982 (follow-up rate 90%) and 145 reference children matched for age, sex, and socioeconomic status. RESULTS: 14% of ELBW subjects had no functional limitations, 58% had reduced function for one or two attributes, and 28% had at least three affected. The corresponding figures for the reference group were 50%, 48%, and 2% (p < 0.0001). The limitations were more severe and complex in the ELBW group, and were notably in cognition (58%), sensation (48%), mobility (21%), and self-care (17%), compared with 28%, 11%, 1%, and 0% for reference children (all p < 0.0001). CONCLUSIONS: These data indicate that fewer ELBW than reference children were free of functional limitations and a significantly higher proportion had multiple attributes affected. The MAHS classification approach is a useful instrument to compare the health status of different groups and populations, and to monitor changes with time.
Asunto(s)
Estado de Salud , Recién Nacido de Bajo Peso/crecimiento & desarrollo , Algoritmos , Estudios de Casos y Controles , Niño , Conducta Infantil , Cognición/fisiología , Estudios de Cohortes , Emociones/fisiología , Estudios de Seguimiento , Humanos , Recién Nacido de Bajo Peso/psicología , Recién Nacido , Locomoción/fisiología , Dolor , Proyectos Piloto , Estudios Prospectivos , Estudios Retrospectivos , Autocuidado , Sensación/fisiología , Tasa de SupervivenciaRESUMEN
OBJECTIVES: To estimate and compare the health-related quality of life (HRQOL) of extremely low birth weight (ELBW) children and a reference group of children at age 8 years. DESIGN: The study utilized a utility equation from preference measures derived from a random sample of 194 general-population parents surveyed in 1987. This equation was applied to multiattribute health state descriptions of the study participants. Utilities can be used to estimate a single cardinal value between 0.0 and 1.0 (0 = dead; 1 = perfect health) to reflect the global HRQOL for that individual. SETTING: Geographically defined region in central-west Ontario, Canada. PARTICIPANTS: One hundred fifty-six ELBW survivors born between 1977 and 1982, and 145 reference children from the general population, matched for age, sex, and socioeconomic status to the index cases. RESULTS: Mean HRQOL scores were lower for ELBW (0.82, SD 0.21) than for reference group (0.95, SD 0.07; p < 0.0001). The ELBW group had greater variability in HRQOL scores (p < 0.001), and the distribution was such that 50% of ELBW children but only 10% of the reference group had scores < 0.88. Only 14% of ELBW children were assigned HRQOL scores of 1.0, compared with 50% of reference subjects (p < 0.0001). CONCLUSIONS: These results demonstrate that from the perspective of the general population, the overall long-term burden experienced by ELBW children is greater than that for reference children. The methods used to assess HRQOL have wide applicability for evaluation of different treatment programs.