- 作者：Pauline Clermidi ; Guillaume Podevin ; C¨¦lia Cr¨¦tolle ; Sabine Sarnacki ; Jean-Benoit Hardouin
- 关键词：Quality of life ; Disease-specific quality of life questionnaire ; HAQL ; Anorectal malformation ; Hirschsprung's disease
- 刊名：Journal of Pediatric Surgery
- 出版年：2013
- 出版时间：October, 2013
- 年：2013
- 卷：48
- 期：10
- 页码：2118-2127
- 全文大小：332 K
Purpose
The aim of the present study was to assess, after adaptation to French, the only specific quality of life (QoL) instrument for children with Hirschsprung's disease or anorectal malformation, the Hirschsprung's disease/Anorectal Malformation Quality of Life questionnaire (HAQL), in order to get a standardized QoL evaluation instrument that could further be used to help health care improvement.Methods
The study was conducted in three teaching hospitals, including the French reference center for anorectal and pelvic malformations. After adaptation to French, QoL questionnaires were sent to the children and proxies. The questionnaire was mailed to 280 families. Psychometrics properties of the questionnaires (validity and reliability) were analysed from 120 proxy and 96 child questionnaires.
Results
The HAQL with the original structure was not acceptable. Exploratory steps led to a clinically pertinent structure that had acceptable fit and good validity and reliability properties. The final structure pools physical symptoms (continence, discomfort) and psychosocial dimensions (general well-being, social and emotional functioning) of QoL.
Conclusion
The final structure, despite the disadvantage of being a new structure, allows assessment of QoL in this population and has the advantage of being shorter and validated on the clinical postoperative questionnaire from the Krickenbeck international consensus.