MacPhee M, Hoffenberg E J, Feranchak A
Department of Pediatrics, University of Colorado School of Medicine, Denver, USA.
Inflamm Bowel Dis. 1998 Feb;4(1):6-11. doi: 10.1097/00054725-199802000-00002.
Little is known about the specific psychosocial factors that influence quality of life in adolescents with newly diagnosed inflammatory bowel disease (IBD). We adapted a model by Garrett and Drossman to assess adolescent adjustment to recent-onset IBD. Thirty adolescent-parent pairs completed a set of standardized questionnaires. The inclusion criteria were adolescents 12-18 years of age with Crohn's disease or ulcerative colitis of < 5 years' duration. Adolescents' health-related quality-of-life scores significantly correlated with satisfaction and degree of closeness with their social support members, such as parents. An unexpected finding was that the adolescents included more extended family than peers in their social support networks. Also of note was that parental coping styles rather than adolescent coping styles significantly correlated with adolescents' quality-of-life health scores. Severity of illness did not correlate with adolescent quality-of-life health scores. There was significant agreement between adolescent and parental quality-of-life health scores and stressful event ratings. Adolescents with recent-onset IBD rely more on family members than their peers for emotional support, and they depend more on their parents' coping skills than their own. These findings may indicate lags in normal adolescent development. Adolescents and parents do communicate and share concerns with each other. Support programs for adolescents with IBD should reinforce existing coping skills and parent-adolescent communication while promoting normative development.
对于影响新诊断炎症性肠病(IBD)青少年生活质量的具体社会心理因素,我们知之甚少。我们采用了加勒特和德罗斯曼的一个模型来评估青少年对近期发病的IBD的适应情况。30对青少年-父母完成了一套标准化问卷。纳入标准为年龄在12至18岁、患克罗恩病或溃疡性结肠炎病程小于5年的青少年。青少年与健康相关的生活质量得分与他们对社会支持成员(如父母)的满意度和亲密程度显著相关。一个意外的发现是,青少年的社会支持网络中,大家庭成员比同龄人更多。同样值得注意的是,与青少年的应对方式相比,父母的应对方式与青少年的生活质量健康得分显著相关。疾病严重程度与青少年生活质量健康得分无关。青少年和父母的生活质量健康得分以及应激事件评分之间存在显著一致性。近期发病的IBD青少年在情感支持方面比同龄人更依赖家庭成员,并且他们更多地依赖父母的应对技巧而非自身的应对技巧。这些发现可能表明正常青少年发育存在滞后。青少年和父母确实会相互交流并分享担忧。针对IBD青少年的支持项目应强化现有的应对技巧和父母-青少年沟通,同时促进正常发育。