Introduction Health-Related Quality of Life (HRQOL) has been shown to have far-reaching implications for patient self-management, treatment efficiency and engagement with their own illness.
Objectives To assess the levels of HRQOL experienced by inflammatory bowel disease (IBD) patients within the district general setting.
Methods 2400 patients with IBD in the Luton & Dunstable catchment were invited to participate in a web-based quality of life assessment, with the option to request a paper copy. All patients were deemed eligible provided they were between 18 and 90 years of age, with no major learning difficulties or pre-existing serious mental disorders. HRQOL was measured using the 10-item “short Inflammatory Bowel Disease Questionnaire” (sIBDQ; Irvine et al 1996). The sIBDQ is divided into four subscales: Systemic, Emotion, Social and Bowel. Possible scores for the sIBDQ ranged from 7 to 70, with lower scores indicating poorer quality of life.
Results 245 patients completed the assessment (43% male; mean age = 53, SD = 17). 45% had Ulcerative Colitis, 45% had Crohn’s Disease and 10% had an alternative form of IBD (eg. Proctitis, Lymphocytic Colitis or Collagenous Colitis). The HRQOL of patients in this study was low, and similar to that reported by Irvine et al The mean score of the sample was 48 (CI = 46.6 – 49.4).
There are no published validated cut-off values for the sIBDQ indicating a “normal” QoL. Using Huaman et al’s (2010) estimated value for the IBDQ-36 (209 in the range 36–252) we assumed a cut-off of 56 in the range 7–70 to estimate a cut-off for the sIBDQ. This would mean that approximately 70% of the sample had an ‘abnormally’ low Quality of Life. For comparison, subscale scores were divided by the number of items they contained. Mean subscale scores were: Systemic – 4.3 (CI = 4.1–4.5); Emotion – 4.8 (CI = 4.7–4.9); Social - 5.4 (CI = 5.2–5.6); Bowel – 4.8 (CI = 4.6–5.0). A ‘tail-off’ effect was also noted, representing a small group of patients who reported having a significantly reduced health-related quality of life.
Conclusion This study found that Social aspects of Quality of Life were less severely affected by IBD than Emotional or Bowel-related aspects, allowing patients to maintain a relatively high level of social activity. The medical (or Bowel) aspects of the condition were perceived to have the greatest negative impact on HRQOL. However, to make significant improvements in the patients’ total QOL one has to focus on improving their emotional engagement with the condition and their overall perception of the IBD and the symptoms they suffer.
Disclosure of Interest None Declared.
Statistics from Altmetric.com
If you wish to reuse any or all of this article please use the link below which will take you to the Copyright Clearance Center’s RightsLink service. You will be able to get a quick price and instant permission to reuse the content in many different ways.