Soria Carmen, El Sabbagh Sandra, Escolano Sylvie, Bobet René, Bulteau Christine, Dellatolas Georges
Institut National de la Santé et de la Recherche Médicale INSERM, Unite 780, Villejuif, France.
Dev Neurorehabil. 2007 Jul-Sep;10(3):213-21. doi: 10.1080/13638490601111129.
Various methods have recently been proposed to assess the physical, psychological or social dimensions of quality of life (QoL) in children with epilepsy (CwE) and their families. Some methods are based exclusively on parental report and others emphasize the importance of an interview with the patient himself. In children with epilepsy and severe cognitive deficit only parental report is possible in practice; however, some parental based methods to evaluate QoL in CwE have excluded children with cognitive deficit. The present pilot study explores which items are suitable for a parental-based QoL evaluation in CwE and special educational needs, and the most frequently reported parental concerns in this special population of children.
最近已经提出了各种方法来评估癫痫患儿(CwE)及其家庭生活质量(QoL)的身体、心理或社会维度。一些方法完全基于家长报告,而其他方法则强调与患者本人面谈的重要性。对于患有癫痫和严重认知缺陷的儿童,实际上只能依靠家长报告;然而,一些基于家长的评估CwE生活质量的方法将有认知缺陷的儿童排除在外。本初步研究探讨了哪些项目适用于对有特殊教育需求的CwE进行基于家长的生活质量评估,以及在这一特殊儿童群体中家长最常提及的担忧。