A new tool to measure the burden of Crohnʼs disease and its treatment

Abstract

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. 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. 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. 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.