Health-related quality of life and its determinants in children with a congenital diaphragmatic hernia

Abstract

BackgroundThe development of new therapeutics has led to progress in the early management of congenital diaphragmatic hernia (CDH) in pediatric intensive care units (PICU). Little is known about the impact on the quality of life (QoL) of children and their family. The aim of this study was to assess the impact of CDH treated according to the most recent concepts and methods outlined above on child survivors’ QoL and their parents’ QoL.Patients and methodsThis study incorporated a cross-sectional design performed in two PICU (Marseille, France). Families of CDH survivors born between 1999 and 2008 were eligible. The following data were recorded: socio-demographics, antenatal history and delivery, initial hospitalization history. Self-reported data were collected by mail, including current clinical problems of the children (13-symptom list), children’s QoL (Kidscreen-27 questionnaire), and parents’ QoL (Short-Form 36 questionnaire). Children’s QoL score was compared with controls and QoL of survivors of childhood leukemia. Parent’s QoL was compared with controls. Non-parametric statistics were employed.ResultsForty-two families agreed to participate and questionnaires were completed by 32 of them. Twenty-one children had a current clinical problems related to CDH. All the QoL scores of CHD survivors were significantly lower compared with controls. The physical well-being dimension was significantly higher for CHD survivors compared with survivors of childhood leukemia. Gastro-esophageal reflux at discharge, antenatal diagnosis, length of stay in the PICU, and neuropsychological and respiratory issues significantly impacted QoL scores of children. The parents of CHD survivors had significantly poorer score in emotional role dimension compared with controls.ConclusionThe impact of CDH on QoL seems to be important and must be understood by clinicians who treat these children and their parents.

Measuring self‐reported quality of life in 8‐ to 11‐year‐old children born with gastroschisis: Is the KIDSCREEN questionnaire acceptable?

“…The KIDSCREEN questionnaire has been used in three recent studies of children born with a major congenital anomaly: congenital diaphragmatic hernia (KIDSCREEN‐27) (Michel et al, ), congenital heart disease (CHD) (KIDSCREEN‐52 by self‐report and KIDSCREEN‐27 by parents) (Amedro et al, ), and congenital low limb deficiencies (KIDSCREEN‐52 self‐ and proxy reports) (Michielsen et al, ). The French study by Michel et al used self‐report of the KIDSCREEN‐27 questionnaire to measure five dimensions of QoL in 10 survivors with congenital diaphragmatic hernia aged ≥8 years in their sample and proxy report for younger children.…”

“…The KIDSCREEN is a validated QoL measure developed across 13 European countries as a questionnaire for healthy and chronically ill children and adolescents aged 8 to 18 years and designed for both self‐ and proxy reports (Ravens‐Sieberer et al, ). It proved an adequate instrument in a multi‐center cross‐sectional survey of QoL in children with cerebral palsy aged 8 to 12 years (Colver and SPARCLE Group, ; Dickinson et al, ), but has not been widely used for measuring QoL in children with congenital anomalies (Michielsen et al, ; Michel et al, ; Amedro et al, ).…”

Multidisciplinary long-term follow-up of congenital diaphragmatic hernia: A growing trend

“…Using the Impact on Family Scale, they found that families of children with more severe clinical problems, those with public insurance, and those with higher outof-pocket expenses experienced the greatest negative family impact, even at a median of 8 years after surgery. In a more contemporary cohort of 32 families of CDH survivors treated between 1999 and 2008 in Marseille, France, parental quality of life as measured by the Short-Form 36 (SF-36) was significantly poorer in the emotional role dimension when compared with controls [65]. Dennett et al at Boston Children's Hospital recently extended these findings by prospectively following a cohort of 41 parental pairs from 2008 through 2012 with the SF-36, 26 of whom received prenatal counseling at their institution, and 15 who did not [27].…”

Congenital Diaphragmatic Hernia

“…This was successfully off ered to the baby and he made satisfactory recovery afterwards necessitating his discharge. He is currently on follow up for long-term CDH sequelae like pulmonary diseases, gastro-intestinal morbidity, poor growth, neurological impairment, hearing loss, musculoskeletal abnormalities and poor life quality 10,11 . Other future plans for the patient include a repeat surgery to close the abdominal wall fascia and also to attempt relocating the testes into the scrotal sac in addition to growth and nutritional monitoring.…”