一种新的工具来衡量克罗恩病及其治疗的负担：患者和医生的看法是否一致？
A new tool to measure the burden of Crohn's disease and its treatment: do patient and physician perceptions match?
机构信息
Inflammatory Bowel Disease Center, Section of Gastroenterology and Hepatology, Dartmouth-Hitchcock Medical Center, Lebanon, New Hampshire 03756, USA.
出版信息
Inflamm Bowel Dis. 2010 Apr;16(4):645-50. doi: 10.1002/ibd.21094.
BACKGROUND
Health-related quality of life (HRQOL) is difficult to efficiently measure in the clinic setting. Our aim was to develop and test a simple tool to measure the burden of Crohn's disease (CD) and its treatment and to compare how patients and their physicians perceive the impact of CD on HRQOL.
METHODS
A cross-sectional, self-administered questionnaire was distributed to patients with CD. The questionnaire included a feeling thermometer to measure disease and treatment burden, which was compared to the Short Inflammatory Bowel Disease Questionnaire (SIBDQ). At that visit, the patient's physician completed a questionnaire containing the feeling thermometer and the Harvey Bradshaw index (HBI). Nonparametric tests were use to report results.
RESULTS
In all, 113 surveys were completed. The median age of respondents was 40 years and 68% were female. Using the feeling thermometer (scale 0-100), patients reported their current health as a median of 70 (interquartile range [IQR] 50-80) and their disease specific burden as 20 (IQR 10-40). Treatment-specific burden was 6.9 (IQR 1.3-20). Physicians perceived their patients' current health as a median of 71.3 (IQR 57.5-90) with a disease burden of 12.5 (IQR 5-30). Spearman's rho between the burden of symptoms measured by the feeling thermometer and the SIBDQ was -0.71. The correlation between patient and physician perception of current health was 0.73.
CONCLUSIONS
Two questions using the feeling thermometer provide a quick and accurate assessment of the burden of CD on patients. Physicians' perception of the burden of disease was similar to their patients.
背景
在临床环境中，很难有效地衡量与健康相关的生活质量（HRQOL）。我们的目的是开发和测试一种简单的工具，以衡量克罗恩病（CD）及其治疗的负担，并比较患者及其医生如何感知 CD 对 HRQOL 的影响。
方法
一项横断面、自我管理的问卷调查分发给 CD 患者。该问卷包括一个感觉温度计来衡量疾病和治疗负担，与短炎症性肠病问卷（SIBDQ）进行比较。在该就诊时，患者的医生填写了一份包含感觉温度计和 Harvey Bradshaw 指数（HBI）的问卷。使用非参数检验报告结果。
结果
共完成了 113 项调查。受访者的中位年龄为 40 岁，68%为女性。使用感觉温度计（0-100 刻度），患者报告其当前健康状况为中位数 70（四分位距[IQR] 50-80），其疾病特异性负担为 20（IQR 10-40）。治疗特异性负担为 6.9（IQR 1.3-20）。医生认为他们的患者当前健康状况为中位数 71.3（IQR 57.5-90），疾病负担为 12.5（IQR 5-30）。感觉温度计测量的症状负担与 SIBDQ 之间的 Spearman's rho 为-0.71。患者和医生对当前健康状况的感知之间的相关性为 0.73。
结论
使用感觉温度计的两个问题提供了对 CD 患者负担的快速准确评估。医生对疾病负担的看法与他们的患者相似。
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