Experience of care is worse for people with active inflammatory bowel disease than inactive disease

Background

There is increasing international attention to the quality of services for people with inflammatory bowel diseases (IBD). Experience of care is defined and measured as ‘what’ happened, ‘how’ and ‘how often’ and is an important facet of service provision. Those with active IBD may experience care in a service differently but the relationship of experience to disease activity has not previously been described.

Aim

To assess the relationship between disease activity and experience of care using disease specific instruments in people with IBD

Methods

Patients attending the service at a single tertiary centre in October 2021 and May 2022 were invited to submit the IBD-Control (inactive disease ≥ 13; active disease <13) alongside an IBD-specific, patient-designed, patient reported experience measure (PREM) using a co-designed, on-line instrument comprising 45 items across three domains (’My Care Team’, ‘What matters to me’, ‘Living with IBD). The PREM was developed to align with the Patient Experience Framework [Ref] and the COM-B behaviour change framework. Each item was a positive statement about their care experience and participants were asked the extent to which they agreed with each statement between 1 (Not at all) and 5 (To a very large extent). Ordered logistic regression was used to identify the PREM items for which active disease status was a significant predictor (p<0.05) of quality of experience, after controlling for sex, age group and Index of multiple deprivation. To illustrate the degree of association between the IBD-CONTROL and each PREM question the Spearman rank correlation coefficient was calculated.

Results

253 PREM and IBD-Control responses were received from 4,082 (6%) invited patients (median age 48; range 19 - 87; 94 male (37%); 159 female (63%); Crohn’s disease 128 (51%), ulcerative colitis 112 (44%), IBD-U 7 (3%) Median duration of disease --- years (range xx -xx)). Reported experience of those with active disease was significantly worse than those with inactive disease for 23/45 PREM items (My Care Team (1/5), What matters to me (15/28), Living with IBD (7/12). The questions demonstrating the greatest difference between the experience of those with active and those with inactive disease and their relationship to established frameworks is given in table 1.

Conclusion

Measurement of patient experience is feasible and demonstrates worse experience for those with active disease. Further research is needed to understand the determinants of poor experience in those with poor outcomes. The findings should be used to target intervention to improve experience. PREM findings can also be used to tailor changes to individual services.