Department of Psychology, Rosalind Franklin University of Medicine and Science, North Chicago, IL, USA.
Qual Life Res. 2011 Oct;20(8):1197-204. doi: 10.1007/s11136-011-9853-3. Epub 2011 Feb 4.
The primary aim of this study was to examine the associations of disease activity and adolescent adjustment with parent and family health-related quality of life (HRQoL) among families of youths with inflammatory bowel disease (IBD). A secondary aim was to compare maternal and paternal perceptions of parent and family functioning.
Ninety-five primarily Caucasian families (92 mothers and 43 fathers) of youths with IBD ranging in age from 11 to 18 participated. Most adolescents were diagnosed with Crohn's disease and had been diagnosed with IBD for several years at the time of the study. Parents completed the PedsQL Family Impact Module, while youths completed the Pediatric Symptoms Checklist. Disease activity ratings were obtained from medical records.
Multiple regression analyses suggested that disease activity was consistently associated with all father-reported outcomes and explained twice as much of the variance in father-reported parent and family HRQoL outcomes compared to mother-reported outcomes. In contrast, youth adjustment was consistently associated with all maternal outcomes but only one paternal outcome, and explained nearly twice as much variance in maternal-reported outcomes compared to paternal-reported outcomes. No significant differences between maternal and paternal reports of parent or family HRQoL were identified using independent samples t tests.
Although mothers and fathers report similar individual and family HRQoL, the strength of associations between disease and youth adjustment factors with these outcomes differs somewhat by parent gender. Findings underscore the importance of examining maternal and paternal functioning separately and incorporating routine family assessment into the course of treatment.
本研究的主要目的是探讨疾病活动度和青少年适应情况与炎症性肠病（IBD）患儿家庭的父母和家庭健康相关生活质量（HRQoL）之间的关系。次要目的是比较母亲和父亲对父母和家庭功能的看法。
本研究纳入了 95 个主要为白种人家庭（92 位母亲和 43 位父亲）的青少年，年龄在 11 至 18 岁之间，患有 IBD。大多数青少年被诊断为克罗恩病，且在研究时已经被诊断为 IBD 多年。父母填写了 PedsQL 家庭影响模块，而青少年则填写了儿科症状清单。疾病活动度评分是从病历中获得的。
多元回归分析表明，疾病活动度与所有父亲报告的结果始终相关，并且与母亲报告的结果相比，解释了父亲报告的父母和家庭 HRQoL 结果的两倍多的差异。相比之下，青少年适应情况与所有母亲报告的结果始终相关，但只与一个父亲报告的结果相关，并且与母亲报告的结果相比，解释了近两倍的差异。使用独立样本 t 检验，未发现母亲和父亲对父母或家庭 HRQoL 的报告存在显著差异。
尽管母亲和父亲报告了类似的个体和家庭 HRQoL，但疾病和青少年适应因素与这些结果之间的关联强度在父母性别上略有不同。研究结果强调了分别检查母亲和父亲的功能以及将常规家庭评估纳入治疗过程的重要性。
