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Titolo:
Quality of life in spina bifida: importance of parental hope
Autore:
Kirpalani, HM; Parkin, PC; Willan, AR; Fehlings, DL; Rosenbaum, PL; King, D; Van Nie, AJ;
Indirizzi:
McMaster Univ, Fac Hlth Sci, Dept Pediat, W Hamilton, ON L8S 4J9, Canada McMaster Univ W Hamilton ON Canada L8S 4J9 W Hamilton, ON L8S 4J9, Canada McMaster Univ, Fac Hlth Sci, Dept Clin Epidemiol & Biostat, W Hamilton, ONL8S 4J9, Canada McMaster Univ W Hamilton ON Canada L8S 4J9 W Hamilton, ONL8S 4J9, Canada Univ Toronto, Fac Med, Dept Pediat, Toronto, ON, Canada Univ Toronto Toronto ON Canada Fac Med, Dept Pediat, Toronto, ON, Canada Bloorview MacMillan Ctr, Toronto, ON, Canada Bloorview MacMillan Ctr Toronto ON Canada illan Ctr, Toronto, ON, Canada
Titolo Testata:
ARCHIVES OF DISEASE IN CHILDHOOD
fascicolo: 4, volume: 83, anno: 2000,
pagine: 293 - 297
SICI:
0003-9888(200010)83:4<293:QOLISB>2.0.ZU;2-M
Fonte:
ISI
Lingua:
ENG
Soggetto:
OF-LIFE; MYELOMENINGOCELE; CHILDREN; HEALTH; CARE; MANAGEMENT; MYELODYSPLASIA; DISABILITIES; INSTRUMENT; DECISIONS;
Keywords:
spina bifida; health related quality of life; hope; newborn;
Tipo documento:
Article
Natura:
Periodico
Settore Disciplinare:
Clinical Medicine
Life Sciences
Citazioni:
39
Recensione:
Indirizzi per estratti:
Indirizzo: Kirpalani, HM McMaster Univ, Fac Hlth Sci, Dept Pediat, 1200 Main St, W Hamilton, ON L8S4J9, Canada McMaster Univ 1200 Main St W Hamilton ON Canada L8S 4J9 nada
Citazione:
H.M. Kirpalani et al., "Quality of life in spina bifida: importance of parental hope", ARCH DIS CH, 83(4), 2000, pp. 293-297

Abstract

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 SE. 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 SE. 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, and54% (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 associatedwith 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.

ASDD Area Sistemi Dipartimentali e Documentali, Università di Bologna, Catalogo delle riviste ed altri periodici
Documento generato il 29/01/20 alle ore 19:08:35