Quality of Life in Perianal Crohn's Disease: What Do Patients Consider Important?

BACKGROUND: Perianal Crohn's disease can affect quality of life across physical, functional, and psychosocial domains. Little is known about how patients prioritize factors affecting their quality of life. OBJECTIVE: This study aimed to determine which factors are considered by patients to be the most important and most unfavorable to their quality of life, and to gauge the relative impact of perianal and nonperianal symptoms. DESIGN: This cross-sectional study involves a mailed questionnaire and medical records audit. SETTINGS: Recruitment was from the database of 2 specialists at a single tertiary-level teaching hospital. Surveys were completed in the community. PATIENTS: Patients with Crohn's disease who had been seen in the preceding 10 years with documented perianal disease were recruited to participate. Of 130 patients invited, 69 (53%) returned a survey. MAIN OUTCOME MEASURES: Patients rated the importance of 16 quality-of-life factors spanning multiple domains. Patient utility was also elicited through use of trade-off scenarios. RESULTS: The mean age of participants was 42.7 years and 62% were female. Eighty percent of patients had undergone prior surgery. Anal pain or discomfort was considered the most important factor for patients, rated highly important by 40%. Physical symptoms were rated more important and adverse than functional, psychosocial, and body image factors. The presence of a long-term perianal drain was predictive of high ratings of importance for the majority of factors investigated. Perianal symptoms did not contribute more than nonperianal symptoms to overall utility. LIMITATIONS: This study was limited by its small sample size, single-institution bias, self-completion questionnaire, and response rate. CONCLUSIONS: Patients with perianal Crohn's disease experience significant impairment of quality of life. Physical symptoms are felt to be the most important and unfavorable. The patient experience of long-term perianal drains warrants further study.