Longitudinal Development of Health-related Quality of Life and Fatigue in Children on Home Parenteral Nutrition.
J Pediatr Gastroenterol Nutr
; 74(1): 116-122, 2022 01 01.
Article
en En
| MEDLINE
| ID: mdl-34694264
ABSTRACT
OBJECTIVES:
The aim of the study was to describe the longitudinal development of health-related quality of life (HRQOL) and fatigue in children with chronic intestinal failure (CIF) on home parenteral nutrition (PN) and compare these children to the general population.METHODS:
Prospective, observational study conducted over 7âyears in patients suffering from CIF receiving home PN from 2 tertiary hospitals in the Netherlands. Every 6âmonths, parents (if child <8âyears old) or patients (if child ≥8âyears old) completed 2 questionnaires Pediatric Quality of Life Inventory 4.0 (PedsQL) Generic and Fatigue on the KLIK (kwaliteit van leven in kaart [Dutch Acronym for Quality of Life in Clinical Practice]) Patient Reported Outcome Measures portal, which were compared with the general population. Linear mixed models (LMMs) were constructed to investigate the course of HRQOL over time.RESULTS:
Thirty-five patients were included (40% girls). At time of last KLIK contact, patients received HPN for a median of 5.3âyears (interquartile range [IQR] 2.9-9.7). In total, 272 questionnaires were completed. PedsQL generic total score for ages 5 to 7 and 8 to 12âyears was significantly lower than the general population (P < 0.01 for both age groups) with effect sizes of 0.73 and 0.71, respectively. PedsQL fatigue total score for ages 5 to 7âyears was also significantly lower (Pâ=â0.01; effect size 0.70). LMMs for PedsQL Generic and Fatigue total score 2 to 7 and 8 to 18âyears showed no significant coefficient for duration of home PN.CONCLUSIONS:
Children suffering from CIF receiving home PN ages 5 to 12âyears report lower HRQOL scores than the general population. HRQOL and fatigue do not change during long-term treatment with home PN in these children.
Texto completo:
1
Colección:
01-internacional
Banco de datos:
MEDLINE
Asunto principal:
Calidad de Vida
/
Nutrición Parenteral en el Domicilio
Tipo de estudio:
Etiology_studies
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Observational_studies
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Prognostic_studies
/
Risk_factors_studies
Límite:
Child
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Child, preschool
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Female
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Humans
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Male
Idioma:
En
Revista:
J Pediatr Gastroenterol Nutr
Año:
2022
Tipo del documento:
Article