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

Orphanet Journal of Rare Diseases

Pascal Auquier²  Claude Martin³  Julie Berbis²  Kathia Chaumoître¹  Sophie Hassid³  Thierry Merrot⁵  Pierre Le Coz⁴  Agathe Gosselin³  Karine Baumstarck²  Fabrice Michel³ 

[1] Department of Medical Imaging, North Hospital, AP-HM, Marseille 13915, France;EA3279, Self-perceived Health Assessment Research Unit, School of Medicine, Aix-Marseille Université, Marseille F-13385, France;Pediatric and Neonatal Intensive Care Unit, North Hospital, APHM, Marseille 13915, France;Espace Ethique Méditerranéen, ADES UMR 7268 ADES, Espace Ethique Méditerranéen Aix-Marseille Université, Marseille 13385, France;Pediatric Surgery Unit, North Hospital Nord, APHM, Aix-Marseille Université, Marseille 13915, France

关键词: SF36;    Kidscreen-27;    Quality of life;    Survivors;    Congenital diaphragmatic hernia;   

Others  :  863710
DOI  :  10.1186/1750-1172-8-89

 received in 2013-03-01, accepted in 2013-05-29,  发布年份 2013

【 摘 要 】

Background

The 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 methods

This 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.

Results

Forty-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.

Conclusion

The impact of CDH on QoL seems to be important and must be understood by clinicians who treat these children and their parents.

【 授权许可】

   
2013 Michel et al.; licensee BioMed Central Ltd.

【 图 表 】

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