Background There is increasing international attention on delivery 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. Socioeconomic deprivation may be associated with poor disease-related outcomes and sub-optimal utilisation of services but its effect on experience of care in people with inflammatory bowel disease has not been reported. Methods An invitation to participate in a research study nested within the AWARE-IBD quality improvement programme was sent to 4082 patients attending the IBD service at a single UK teaching centre in October 2021. A second invitation was sent in May 2022 followed by telephone recruitment targeted to those from the most deprived deciles based on the index of multiple deprivation (IMD), a measure of relative deprivation for small areas in England (‘lower-layer super areas’, approximately 1500 residents). Participants returned an IBD specific patient reported experience measure (PREM) via a web application comprising 38 items across 3 domains: ‘My Care Team’, “What matters to me’, ‘Living with Crohn’s or Colitis’. Each item was scored 1 (poorest experience) to 5 (best experience). Median scores for individual items and by domain was compared in the following demographic groups: IMD decile IMD (1 = most deprived; 10 = least deprived), age, gender, disease type (ulcerative colitis or Crohn’s disease). Results PREM responses were received from 249/4,082 (6%) patients. Patients from the most deprived decile were underrepresented in respondents compared to the invited cohort (Decile 1 22/249 (9%) vs 667/4,063(16%) p=0.002) and patients from the least deprived decile were over-represented; Decile 10: 38/249 (15%) vs 379/4063(9%) p=0.002). Respondents were otherwise broadly comparable to the invited cohort in terms of age, gender and disease type. Experience of care for respondents for individual PREM items or by domain did not differ according between IMD deciles (Figure 1), age, gender or disease type. Conclusion Measuring experience of care is an important part of IBD service quality improvement. No effect from socioeconomic deprivation was demonstrated. This finding conflicts with the literature on links between socioeconomic factors and quality of care and results across a service should be interpreted with caution. Experience of those at greatest risk is difficult to elicit with survey based experience measurement. Instead, tailored engagement exercises are required including qualitative and ethnographic approaches to better understand the impact of deprivation on experience.

Background There is increasing focus on the organisation of services for people with IBD. Patient experience of care is an important consideration in service delivery. The United Kingdom NHS Long Term Plan indicates the importance of support that is more differentiated for individuals, with more personalised care when needed, which starts with the question ‘What matters to you?”. This is particularly important for people with inflammatory bowel disease (IBD). Methods The aim was to identify ‘What matters to you?’ for people attending a single UK teaching centre IBD service and to relate it to patient experience and national standards of care. Invitations to take part in the AWARE-IBD quality improvement programme were sent to 4082 patients receiving IBD care at a single UK teaching centre in 2 rounds (October 2021 and May 2022). Invitation letters included an anonymous open-ended questionnaire asking patients “what matters to you?”. Responses were extracted as qualitative data and coded using two frameworks: Patient experience domains (Bull et al) (Communication, Patient-centred Care, Quality, Integration, Involvement, Accessibility, Environment and Facilities, Discomfort) and national IBD UK Standards. Frequencies for each coding strategy were calculated to determine the most important patient experience domains and IBD UK standards. Results Responses were received from 408 and 205 patients from each recruitment round (n=613). Figure 1 displays frequencies for each patient experience domain. Accessibility (47.5% and 53.2% respectively), Communication (19.6% and 12.7%) and Patient-Centred Care (15.7% and 11.2%) were expressed most frequently. Sub-themes included access to and contact with IBD nurse specialists, timely and accessible appointments and regular contact with a specialist IBD health care professional (HCP). Responses were coded to IBD UK standards, where possible (Table 1). Responses most frequently coded to statements relating to shared decision making, having a personalised care plan, access to an IBD nurse specialist including helpline and regular clinical review. 77 responses could not be coded to an IBD UK standard. Conclusion Access to the IBD service when needed matters most to patients with good communication of information and personalised, patient-centred care. Service organisation should therefore reflect these facets of patient experience and defined standards. Patient views that are not currently represented in published standards should be considered in future iterations. This study also highlights personalised written care plans and improved access to the IBD Nurse Advice line.

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