Inflammatory bowel disease patient-reported quality assessment should drive service improvement: a national survey of UK IBD units and patients

Abstract

Background: Healthcare service provision in inflammatory bowel disease (IBD) is often designed to meet targets set by healthcare providers rather than those of patients. It is unclear whether this meets the needs of patients, as assessed by patients themselves.

Aims: To assess patients' experience of IBD and the healthcare they received, aiming to identify factors in IBD healthcare provision associated with perceived high-quality care.

Methods: Using the 2019 IBD standards as a framework, a national benchmarking tool for quality assessment in IBD was developed by IBD UK, comprising a patient survey and service self-assessment.

Results: 134 IBD services and 9757 patients responded. Perceived quality of care was lowest in young adults and increased with age, was higher in males and those >2 years since diagnosis. No hospital services met all the national IBD standards for recommended workforce numbers. Key metrics associated with patient-reported high- quality care were: identification as a tertiary centre, patient information availability, shared decision- making, rapid response to contact for advice, access to urgent review, joint medical/surgical clinics, and access to research (all p < 0.001). Higher numbers of IBD nurse specialists in a service was strongly associated with patients receiving regular reviews and having confidence in self-management and reporting high- quality care.

Conclusions: This extensive patient and healthcare provider survey emphasises the importance of aspects of care less often measured by clinicians, such as communication, shared decision- making and provision of information. It demonstrates that IBD nurse specialists are crucial to meeting the needs of people living with IBD.

FIGURE 1

Flow chart showing development of patient survey and service self‐assessment based on the UK IBD standards 2019. CCG, Clinical commissioning group; CICRA, Crohn's and colitis in childhood research association; IA, Ileostomy and internal pouch association; PS, patient survey; QI, Quality improvement; SSA, Service self‐assessment.

FIGURE 2

Patient assessment of quality of care in past year according to 5‐point Likert scale (n = 9183).

FIGURE 3

Patient‐reported waiting times. (A) From reporting symptoms to GP to diagnosis (n = 1797), p = 0.005, O.R. 2.0 (95% CI 1.2–3.2). (B) From GP referral to first appointment (n = 1406), p < 0.001, O.R. 5.0 (95% CI 2.2–11). (C) From diagnosis to treatment (n = 1709), p < 0.001, O.R. 3.2 (95% CI 2.4–4.2). (D) For endoscopy or imaging investigation (n = 4158), p < 0.001, OR 9.8 (95% CI 6.1–16) and (E) For elective surgery (n = 52), p = 0.003, OR 4.3 (95% CI 1.7–11). Significance and odds ratios refer to a binary logistic regression model (adjusting for patient age, gender, recent diagnosis and ability to cope with IBD in the past year), measuring the association of the shortest wait, compared to the reference value (longest wait) with patients' perception of quality of service.

FIGURE 4

Impact of IBD specialist nurses on patient perception of quality of care. (A) Association between contact with IBD nurse and overall quality of care (n = 9043, p < 0.001). (B) Association between IBD nurse contact, and patient support (n = 9539, p < 0.001). (C) Association between meeting the IBD nurse standard for WTE staffing, and having regular review (n = 7612, p = 0.001).

FIGURE 5

(A) Median service self‐assessment grades across 134 UK adult services. Diagnosis, treatment, ongoing care and IBD service columns relate to stages in the patient journey. Access—access to the IBD service across the patient journey, including for diagnosis following GP referral, investigations and treatment initiation, rapid specialist review during flares and to IBD advice lines. Patient empowerment—provision of information to patients, including signposting to patient organisations, information about treatment options, shared decision‐making, support for self‐management and patient involvement in service development. Quality—provision of holistic assessment for newly diagnosed patients, relevant treatment protocols, ongoing cancer surveillance and IBD team leadership, planning and development, with involvement in audit and research. Coordinated care—communication and shared care across primary and secondary care, pathways to supporting services, inpatient access to an IBD nurse specialist, surgical and medical joint working, MDT meetings and the transition service. (B) Median patient service assessment grades for adult patients. Categories as above (IBD service column blank as patients not asked about this).