Beyond standard quality of life measures: the subjective experiences of living with inflammatory bowel disease

Introduction In order to facilitate our understanding of health-related quality of life (HRQoL) for inflammatory bowel disease (IBD) patients, it is critical to explore their subjective experiences with the disease. Research has suggested that current modes of assessing HRQoL (i.e., generic and disease-specific measures) may not fully represent all dimensions of patients’ HRQoL. The purpose of this study was to examine IBD patients’ subjective experiences of the daily impact of IBD, and categorize dimensions of their HRQoL affected by IBD, as identified by the patients themselves. Methods Two hundred and eighty-two patients with IBD provided answers to the qualitative question “How has IBD affected your daily activities?” A content analysis using NVivo 2.0 was conducted on the participants’ responses to this question to reveal dimensions of their HRQoL. Results The analysis yielded six dimensions and several subdimensions of HRQoL, including physical (systemic functioning, daily functioning, energy/vitality, pain), emotional, social, cognitive (functioning, attending to disease), self-regulation (taking control, loss of control, and neutral), and practical functioning. Discussion These results reflect previous findings, but also reveal several dimensions of HRQoL not included in current measures of HRQoL for IBD patients (i.e., cognitive, self-regulation, and practical). The implications of these findings for future measurement of HRQoL and research with IBD patients are discussed