Shepanski Melissa A, Hurd Linda B, Culton Keri, Markowitz Jonathan E, Mamula Petar, Baldassano Robert N
Center for Pediatric Inflammatory Bowel Disease, Division of Gastroenterology and Nutrition, The Children's Hospital of Philadelphia, Philadelphia, Pennsylvania 19104, USA.
Inflamm Bowel Dis. 2005 Feb;11(2):164-70. doi: 10.1097/00054725-200502000-00010.
To describe the reported health-related quality of life (HRQOL) in children and adolescents with inflammatory bowel disease (IBD) after attending an IBD summer camp.
A prospective analysis of quality of life was completed at an overnight camp that was exclusively for patients with IBD, which was sponsored by the Crohn's and Colitis Foundation of America. The IMPACT-II questionnaire (Canada and United States) and the State-Trait Anxiety Inventory for Children were administered to the campers at the beginning and at the end of a 1-week camp to assess HRQOL and anxiety. The IMPACT-II questionnaire consists of 35 questions measuring 6 quality-of-life domains (i.e., bowel domain, systemic symptoms, emotional functioning, social functioning, body image, and treatment/interventions). The State-Trait Anxiety Inventory for Children consists of 2 different 20-item sets of questions. One set assesses state anxiety, and the other, trait anxiety. A repeated-measures multivariate analysis of variance was performed to determine the differences between scores attained before and after camp on the IMPACT-II questionnaire and in each of its domains. Paired sample t tests were performed on state and trait anxiety before and after camp.
A total of 125 individuals consented to participate, but 61 patients (50 girls and 11 boys; age range, 9 to 16 y) completed the IMPACT-II questionnaire in full. Of those 61 patients, 47 had Crohn's disease and 14 had ulcerative colitis. There was statistically significant improvement between the mean (+/-SD) precamp total score (172.95 +/- 36.61) and the mean postcamp total score (178.71 +/- 40.97; P = 0.035), bowel symptoms scores (P = 0.036), social functioning scores (P = 0.022), and treatment interventions scores (P = 0.012). No difference was found between anxiety scores before and after camp on either the state or trait anxiety inventories (n = 55; P > 0.05).
Overall, HRQOL improved in children after attending IBD summer camp. This exploratory study suggests that contributing factors for these improvements may be an increase in social functioning, a better acceptance of IBD symptoms, and less distress regarding treatment interventions, suggesting that a camp that is specifically designed for children with IBD may normalize the chronic illness experience. However, future research using a multimodal measurement approach is warranted to support these conclusions.
描述参加炎症性肠病(IBD)夏令营后儿童和青少年炎症性肠病患者报告的健康相关生活质量(HRQOL)。
对美国克罗恩病和结肠炎基金会赞助的一个专为IBD患者设立的过夜夏令营进行生活质量的前瞻性分析。在为期1周的夏令营开始和结束时,对营员进行IMPACT-II问卷(加拿大和美国)及儿童状态-特质焦虑量表的测评,以评估HRQOL和焦虑情况。IMPACT-II问卷由35个问题组成,测量6个生活质量领域(即肠道领域、全身症状、情绪功能、社交功能、身体形象和治疗/干预)。儿童状态-特质焦虑量表由两组不同的各含20个项目的问题组成。一组评估状态焦虑,另一组评估特质焦虑。进行重复测量多变量方差分析以确定夏令营前后IMPACT-II问卷及其各领域得分的差异。对夏令营前后的状态和特质焦虑进行配对样本t检验。
共有125人同意参与,但61例患者(50名女孩和11名男孩;年龄范围9至16岁)完整填写了IMPACT-II问卷。在这61例患者中,47例患有克罗恩病,14例患有溃疡性结肠炎。营前平均(±标准差)总分(172.95±36.61)与营后平均总分(178.71±40.97;P = 0.035)、肠道症状得分(P = 0.036)、社交功能得分(P = 0.022)和治疗干预得分(P = 0.012)之间存在统计学显著改善。在状态或特质焦虑量表上,夏令营前后的焦虑得分没有差异(n = 55;P>0.05)。
总体而言,参加IBD夏令营后儿童的HRQOL有所改善。这项探索性研究表明,这些改善的促成因素可能是社交功能的增强、对IBD症状更好的接受以及对治疗干预的困扰减少,这表明专门为IBD儿童设计的夏令营可能使慢性病体验正常化。然而,未来需要采用多模式测量方法的研究来支持这些结论。