A new tool to measure the burden of Crohn's disease and its treatment: Do patient and physician perceptions match?

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. (Inflamm Bowel Dis 2009;)