1Department of Gastroenterology and Hepatology, University Medical Center Utrecht, the Netherlands; 2Medical Psychology Section, Leiden University Medical Center, Leiden, the Netherlands; 3Department of Gastroenterology and Hepatology, VU University Medical Center, Amsterdam, the Netherlands; 4Department of Gastroenterology and Hepatology, Orbis Medical Center, Sittard, the Netherlands; 5Department of Gastroenterology and Hepatology, University Medical Center Groningen, Groningen, the Netherlands; 6University of Groningen, Groningen, the Netherlands; 7Department of Gastroenterology and Hepatology, Radboud University Nijmegen Medical Center, Nijmegen, the Netherlands; 8Division of Gastroenterology and Hepatology, Maastricht University Medical Center, Maastricht, the Netherlands; 9Department of Gastroenterology and Hepatology, Academic Medical Center, Amsterdam, the Netherlands; 10Department of Gastroenterology and Hepatology, Leiden University Medical Center, Leiden, the Netherlands; 11Department of Gastroenterology and Hepatology, Erasmus University Medical Center, Rotterdam, the Netherlands; 12Department of Gastroenterology and Hepatology, Slingeland Hospital, Doetinchem, the Netherlands; 13Department of Gastroenterology and Hepatology, Diaconessenhuis, Leiden, the Netherlands; 14Department of Gastroenterology and Hepatology, Onze Lieve Vrouwe Gasthuis, Amsterdam, the Netherlands; 15Department of Gastroenterology and Hepatology, St. Antonius Hospital, Nieuwegein, the Netherlands; 16Department of Gastroenterology and Hepatology, Reinier de Graaf Groep, Delft, the Netherlands; and 17Department of Gastroenterology and Hepatology, Meander Medical Center, Amersfoort, the Netherlands.
Inflamm Bowel Dis. 2015 Feb;21(2):369-77. doi: 10.1097/MIB.0000000000000278.
The inflammatory bowel disease (IBD) disability index has recently been introduced to measure patients' physical, psychological, familial, and social limitations associated with IBD. We assessed factors related to self-reported disability and the relationship between disability and direct health care costs.
A large cohort of patients with Crohn's disease (CD) and ulcerative colitis (UC) was prospectively followed for 2 years by 3 monthly web-based questionnaires. At 2 years, patients completed the IBD disability index, with lower score indicating more disability. Linear regression analysis was used to examine the impact of demographics, clinical characteristics, and illness perceptions on self-reported disability. Trends in direct health care costs across the disability severity groups minimal, mild, moderate, and severe, were tested.
A total of 554 patients with CD and 424 patients with UC completed the IBD disability index (response rate, 45%). Both clinical characteristics and illness perceptions significantly contributed to self-reported disability (45%-47%, P = 0.000 and 8%-12%, P = 0.000, respectively). Patients with CD scored lower on the self-reported IBD disability index than patients with UC (0.255 versus 3.890, P < 0.000), indicating more disability in patients with CD. Factors independently associated with higher self-reported disability rates were increased disease activity, illness identity (higher number of symptoms attributed to IBD), and stronger emotional response. Disease duration and disease phenotype were not associated with self-reported disability. Direct health care costs increased with the worsening of self-reported disability (P = 0.000).
More disability was reported by patients with CD than by UC. Self-reported disability in IBD was mainly determined by clinical disease activity and illness perceptions but not by disease duration or disease phenotype.
炎症性肠病(IBD)残疾指数最近被引入,以衡量与 IBD 相关的患者的身体、心理、家庭和社会障碍。我们评估了与自我报告残疾相关的因素以及残疾与直接医疗保健成本之间的关系。
通过每月三次的网络问卷调查,对一组较大的克罗恩病(CD)和溃疡性结肠炎(UC)患者进行了为期 2 年的前瞻性随访。在 2 年时,患者完成了 IBD 残疾指数的评估,分数越低表示残疾程度越严重。线性回归分析用于检查人口统计学、临床特征和疾病认知对自我报告残疾的影响。测试了残疾严重程度从轻度到重度的最小、轻度、中度和重度组的直接医疗保健成本趋势。
共有 554 名 CD 患者和 424 名 UC 患者完成了 IBD 残疾指数(应答率为 45%)。临床特征和疾病认知都显著影响自我报告残疾(分别占 45%-47%,P=0.000 和 8%-12%,P=0.000)。CD 患者的自我报告 IBD 残疾指数得分低于 UC 患者(0.255 与 3.890,P<0.000),表明 CD 患者的残疾程度更严重。与自我报告残疾率较高相关的独立因素包括疾病活动度增加、疾病身份(归因于 IBD 的症状数量较多)和更强的情绪反应。疾病持续时间和疾病表型与自我报告残疾无关。自我报告的残疾程度越严重,直接医疗保健成本越高(P=0.000)。
与 UC 患者相比,CD 患者报告的残疾程度更高。IBD 患者的自我报告残疾主要由临床疾病活动度和疾病认知决定,而与疾病持续时间或疾病表型无关。