RESUMEN
BACKGROUND AND AIMS: Prognosis in spina bifida (SB) is often based only on neurological deficits present at birth. We hypothesised that both parental hope and the neurophysical examination predict quality of life in children and adolescents with SB. METHODS: A previously validated disease and age specific health related quality of life (HRQL) instrument was posted to families of children (aged 5-12 years) and adolescents (aged 13-20 years) with SB. We measured parental hope, determined the child's current physical function, and obtained retrospective data on the neonatal neurophysical examination (NPE). Regression analysis modelled HRQL firstly as a dependent variable on parental hope and NPE ("birth status"); and secondly on parental hope and current physical function ("current function"). RESULTS: Response rates were 71% (137 of 194) for families of children, and 54% (74 of 138) for families of adolescents. NPE data were available for 121 children and 60 adolescents. In children, the birth status model predicted 26% of the variability (R(2) hope 21%) compared with 23% of the variability (R(2) hope 23%)in the adolescents. The current function model explained 47% of the variability (R(2) hope 19%) in children compared with 31% of the variability (R(2) hope 24%) in the adolescents. CONCLUSIONS: In both age groups, parental hope was more strongly associated with the HRQL than neonatal or current physical deficits. A prospective study is required to determine whether a causal relation exists between parental hope and HRQL of children and adolescents with SB.
Asunto(s)
Emociones , Relaciones Padres-Hijo , Calidad de Vida , Disrafia Espinal/psicología , Adolescente , Adulto , Actitud Frente a la Salud , Niño , Preescolar , Composición Familiar , Humanos , Padres/psicología , Pronóstico , Análisis de Regresión , Estudios Retrospectivos , Factores Socioeconómicos , Disrafia Espinal/fisiopatología , Disrafia Espinal/rehabilitaciónRESUMEN
The objective of this study was to develop a spina bifida health-related quality of life (HRQOL) instrument. Items were generated through semistructured interviews, and reduced by frequency-importance product ranking. Validity was assessed by correlating the HRQOL score with a global question concerning the child's well-being using the Spearman's rank coefficient, and the Piers-Harris Children's Self-Concept Scale (P-H) using the Pearson correlation coefficient. Reproducibility was assessed at 2-week intervals using the intra-class correlation coefficient (ICC). Field testing was undertaken in a larger sample to evaluate item-total correlation, internal consistency and construct validity. Patients taking part in the study were 329 children and adolescents with spina bifida attending two treatment centres. Over 600 items were generated. These were reduced to 47 questions and 50 questions, for children and adolescents respectively. The correlation between the HRQOL score and the global question was r = 0.57, and with the P-H was 0.26 (children). These values for adolescents were 0.63, and 0.89, respectively. Reproducibility was ICC = 0.78 (children) and 0.96 (adolescents). Following field testing, the questionnaire was further reduced to 44 questions (children) and 47 questions (adolescents) by eliminating questions with an item- total correlation less than 0.20. Cronbach's alphas for the final instrument were 0.93 (children) and 0.94 (adolescents), and construct validity correlations were 0.63 (children) and 0.37 (adolescents). The spina bifida HRQOL instrument has good measurement properties and may be used as a discriminative instrument. Assessment of responsiveness is necessary before using it to evaluate therapy in clinical trials.
Asunto(s)
Calidad de Vida , Disrafia Espinal/psicología , Encuestas y Cuestionarios , Adolescente , Adulto , Niño , Preescolar , Estudios de Cohortes , Humanos , Psicometría , Reproducibilidad de los Resultados , Autoimagen , Estadísticas no ParamétricasRESUMEN
Coagulase-negative staphylococci are now the major cause of bacteremia in neonatal intensive care units. To date, coagulase-negative staphylococci causing neonatal infections have been found to be distinct when typed by standard techniques. To determine whether or not an endemic strain could be identified using more discriminatory techniques, we characterized coagulase-negative staphylococci isolates obtained from a prospective study of coagulase-negative staphylococci bacteremia in a neonatal intensive care unit during 1984 through 1985, by standard techniques supplemented with DNA-DNA hybridization and restriction endonuclease analysis. We typed 58 strains that were isolated from 52 episodes of bacteremia in 38 neonates. There were 46 isolates of Staphylococcus epidermidis. Three pairs of strains were identical, and each strain was from a different patient. There were 12 isolates of Staphylococcus haemolyticus. Ten were identical, referred to as strain TOR-35, and had been isolated from eight different infants. Characterization of strains obtained in 1986 from a prospective study of coagulase-negative staphylococci-colonizing neonates admitted to the same neonatal intensive care unit found the TOR-35 strain had colonized 6 of 17 neonates by day seven. A point prevalence survey of all neonates in the same neonatal intensive care unit in 1990 found 5 of 30 neonates to be colonized with the TOR-35 strain. Therefore, we were able to identify an endemic strain of S haemolyticus that caused multiple episodes of bacteremia during a 6-month period and remained present in the same environment for a 5-year period.
Asunto(s)
Bacteriemia/microbiología , Infección Hospitalaria/microbiología , Unidades de Cuidado Intensivo Neonatal , Infecciones Estafilocócicas/microbiología , Staphylococcus/aislamiento & purificación , Antibacterianos/farmacología , Técnicas Bacteriológicas , Sondas de ADN , ADN Bacteriano/análisis , Farmacorresistencia Microbiana , Humanos , Recién Nacido , Pruebas de Sensibilidad Microbiana , Membrana Mucosa/microbiología , Hibridación de Ácido Nucleico , Mapeo Restrictivo , Piel/microbiología , Staphylococcus/efectos de los fármacos , Staphylococcus/genéticaRESUMEN
We examined the pathogenicity of coagulase-negative staphylococci (CONS) in newborn infants by comparing presenting nonspecific signs of infection in infants with and without CONS bacteremia. During a 6-month period 799 blood cultures were obtained in a tertiary care nursery; 81 (10.1%) grew CONS and 25 (3.0%) grew other bacteria. A comparison group of 121 infants was selected randomly from ill patients whose blood cultures were negative. In addition 70 well infants were matched to CONS-positive cases. Abnormal clinical signs, complete blood cell counts, C-reactive protein, alpha-1-acid glycoprotein and prealbumin were determined at the time of culture. Signs that discriminated best between infants with and without CONS bacteremia were identified by logistic regression analysis. Infants with CONS bacteremia did not differ from infants with sepsis caused by recognized pathogens, except for lethargy, which was significantly more common in unequivocal infection. Infants with presumed infection but negative blood cultures, and noninfected control patients had abnormal signs significantly less often than CONS-positive infants. C-reactive protein, hyperthermia, increased oxygen requirements and lethargy were the most useful signs in identifying neonatal bloodstream infection. This cohort study provides objective evidence for the pathogenicity of CONS in newborn infants.