Development and Assessment of a Novel Ulcerative Colitis–Specific Quality of Life Questionnaire: A Prospective, Multi-Institutional Study

• Published in: Yonsei medical journal Vol. 65; no. 11; pp. 636 - 644
• Main Authors: Park, Jihye, Zhang, Hyun-Soo, Nam, Chung Mo, Kim, Joo Sung, Kim, Young-Ho, Park, Dong Il, Ye, Byong Duk, Jeen, Yoon Tae, Kim, Sehyun, Cheon, Jae Hee
• Format: Journal Article
• Language: English
• Published: Korea (South) Yonsei University College of Medicine 01.11.2024; 연세대학교의과대학
• Subjects: Adult; Aged; Colitis, Ulcerative - psychology; Female; Humans; Male; Middle Aged; Original; Prospective Studies; Quality of Life; Reproducibility of Results; ROC Curve; Surveys and Questionnaires; Young Adult; 의학일반; quality of life; questionnaire; Ulcerative colitis
• ISSN: 0513-5796; 1976-2437; 1976-2437
• DOI: 10.3349/ymj.2023.0503

Interest in the quality of life (QoL) of patients with inflammatory bowel disease (IBD) has recently increased. Although measurement tools have been devised for IBD in general, there is no specific tool for measuring the QoL of patients with ulcerative colitis (UC). Therefore, we developed a QoL questionnaire specifically for patients with UC. The Korean Ulcerative Colitis-Specific Questionnaire (K-UCSQ) was developed through item generation, raw-scale construction, focus group meetings, and multi-center field tests. Two hundred patients with UC were recruited for a field test of the K-UCSQ, and subsequent responses to the Inflammatory Bowel Disease Questionnaire (IBDQ) were also obtained. After performing factor analyses to ensure construct validity, the K-UCSQ was finalized as a four-domain, 28-item questionnaire. Subsequent analyses evaluated the reliability of the K-UCSQ in terms of Cronbach's alpha, concurrent validity in comparison with the pre-established IBDQ, and predictive validity of the area under the ROC curve (AUC) for clinically relevant QoL outcomes. A Cronbach's alpha of 0.94 showed excellent reliability. Furthermore, correlation analyses demonstrated the concurrent validity of the K-UCSQ in comparison with the IBDQ. The K-UCSQ also showed high validity in predicting the perceived overall health (AUC of 0.812 vs. 0.797 using the IBDQ) and past 2-week QoL (AUC of 0.864 vs. 0.859 using the IBDQ). The newly developed K-UCSQ is concise, bathroom problem-emphasizing, and UC-specific, suggesting that it could be a valid and reliable UC-specific instrument for QoL measurement.