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© Chirag Patel
In the United Kingdom (UK), approximately 500,000 people live with IBD, and in the coming decade it is anticipated that the prevalence of IBD will surpass 1% of the population . In 2019, the third UK IBD Standards for adults and children were published following extensive patient and healthcare professional consultation . The IBD Standards cover seven domains: service design and delivery; pre-diagnosis referral pathways; management of the newly diagnosed patient; flare management, including self-management and timely access to specialist advice; surgery including pre- and postoperative care; inpatient medical care; and ongoing long-term treatment and monitoring in both secondary and primary care.
IBD UK developed a UK-wide benchmarking tool comprising a service self-assessment exercise to assess hospitals' IBD workforce provision and perception of the care they deliver and a patient survey to measure patients' views of how their IBD care matched up to the IBD Standards.
The primary aim of the benchmarking exercise was to provide a detailed assessment of the quality of IBD care in the UK from the patient’s perspective. The secondary aims were to compare patient-reported experience of care with healthcare-reported service performance data and to define the most important targets and strategies to facilitate local and national quality improvement.
The service self-assessment comprised a total of 187 questions and every IBD service in the UK was invited to participate between October 1, 2019 and January 31, 2020. Out of a potential 229 services, 166 responded: 134 adult and 32 paediatric. This represents 70% of the 191 adult and 86% of the 37 paediatric IBD services nationally, and collectively these hospitals reported caring for an estimated 347,973 patients.
The patient survey focused on patient experience in the preceding 12 months, and experience regarding diagnosis if within the last 2 years. The patient survey was conducted from July 8, 2019 to November 22, 2019 and was widely promoted via printed flyers available in IBD clinics, emails, social media and the IBD UK website; there were 10,222 respondents.
The IBD UK Benchmarking process was the most in-depth nationwide service assessment of IBD care, reporting patient experience alongside more traditional service-reported quality measures. The patient survey and the service self-assessment were designed to measure the quality of care in the UK against the 2019 National IBD Standards, highlighting the areas of service that could be targeted locally for quality improvement in an iterative process.
The patient survey data on waiting times relating to pre-diagnosis and newly diagnosed patients showed poor results, with comments demonstrating the impact of delays on patients' physical and mental health. In contrast, the response rates to contacting the service with flares were somewhat better. The quality of other areas was variable, with high scores for joint surgeon/physician working and information in relation to surgery, but much lower scores for experience during in-patient stays, interaction with primary care and aspects of long-term care. Nearly a tenth of all free-text comments related to follow-ups, reviews and monitoring, demonstrating how important this is to patients. Very few had a personalised care plan, and the management of pain, fatigue and mental health was particularly lacking. The quality of transition care was reported as poor by the relatively small number experiencing this process around the time that the survey was carried out. This was highlighted as a key issue as it is the first introduction to adult IBD services for an important group of young people, at a crucial stage in their lives.
Three key areas of importance to patients were identified. The first was the availability of patient information across multiple aspects of care including diagnosis, medical and surgical treatments, availability of research, access to specialist advice lines and flare reviews. Linked to this, a second key area was support and communication: the feeling of being supported by a team of IBD specialists had a strong association with perception of quality of care. Third, the patient data reinforced the key role that IBD nurse specialists play in providing this support.
Cross-referencing the data from the patient surveys and service self-assessments showed that services with IBD nurse specialist numbers meeting the IBD Standards recommendation had patients who reported a higher perception of quality of care and were more likely to have regular reviews. Contact with an IBD nurse specialist was associated with higher confidence in self-management and greater ability to cope with the diagnosis. However, data from the service self-assessment showed low levels of IBD nursing availability, with fewer than one in eight services meeting the IBD Standard for WTE IBD nurses according to the population served.
Centres with larger numbers of patients with IBD, and tertiary centres, had patients rating the overall quality of care more highly, as did those with a clinical database, those with involvement in research and those with a pharmacist involved in IBD team leadership. As with the patient survey, better information, communication between GPs and hospitals, and involvement of patients with service design and delivery were associated with higher global ratings of quality from patients in that service. Very few services had IBD staff numbers in line with the IBD Standards, and having enough staff to meet the IBD Standards was not more likely in tertiary centres.
The primary and secondary aims of the study, namely to provide a detailed assessment of IBD care from the patient’s perspective and to compare patient-reported experience of care with service self-assessment data, were both met. Various desirable quality improvement initiatives in IBD care were highlighted by this study. Faster diagnostics could be achieved with the use of faecal calprotectin to fast-track direct colonoscopy and a rapid e-referral and response system to provide feedback and advice for referrers, thereby avoiding unnecessary appointments and reducing waiting times for specialist clinics. A personalised care and self-management system could be created to allow patients to have more remote care when stable, with passive and active monitoring and surveillance balanced with greater capacity for drop-in flare clinics and telephone access for advice. The key areas identified as being of importance to patients were availability of information, provision of support and communication and high levels of contact with an IBD nurse specialist. Meeting these needs will increase patient access to the wider IBD MDT and allow for a more tailored approach to patient care.
Chirag Patel - Short Biography
Chirag Patel is a Gastroenterology Registrar at Guys’ and St Thomas’ with an interest in digital health transformation.