Patients experience variable IBD care, latest results from UK inflammatory bowel disease audit show

The audit is commissioned by the Healthcare Quality Improvement Partnership (HQIP) as part of the National Clinical Audit and Patient Outcomes Programme (NCAPOP). The UK IBD audit is carried out by the Royal College of Physicians.

IBD can cause real disability giving both adults and children bouts of watery and bloody diarrhoea enough to prevent them from living normal lives. Left untreated it can be a life-threatening disease. The national reports published today measure inpatient care and inpatient experience for adult and paediatric patients with IBD.

Substantive improvements have been made in IBD care since the previous round of the audit. The rate of mortality has decreased from 1.5% to 0.75%. More adult patients (74%) are being prescribed bone protection medication for the prevention of osteoporosis (a side effect of steroids patients take to manage IBD). Preventative anticoagulants are given to 90% of adult patients (an increase from 70%) with only 1% of clotting complications. Colitis activity in paediatric patients is now recorded in hospital much more closely and Clostridium difficile (C diff) testing was recorded in 66% of paediatric patients (an increase from 36%).

Early intervention in IBD can help prevent symptoms becoming severe (known as a ‘flare-up’), and possibly resulting in admission to hospital. The reports make recommendations for doctors, nurses and multidisciplinary teams caring for both adult and paediatric patients with IBD, including:

• Patients should receive an accurate assessment of disease activity and treatment should be given to people with active disease.
• All patients admitted to hospital should have their nutritional needs assessed either by a dietitian or using a nutritional screening tool.
• Anaemia (low iron levels in the blood) is common among IBD patients and should be actively investigated and treated with appropriate iron therapy.

Data from the audit suggests some admissions to hospital could have been prevented if patients’ symptoms had been picked up sooner and treatment had started earlier. Standard treatments were not started or escalated in 42% (556/1,329) of adult cases and 54% (56/103) of paediatric cases prior to admission to hospital.

The patients surveyed through the inpatient experience questionnaire had a variety of experiences before being admitted to hospital. Some patients reported being turned away from emergency departments only to be admitted to hospital in a worse condition two weeks later, which resulted in surgery. Other patients commented on healthcare staff not being knowledgeable enough about IBD and specialist medicines in order to be treated effectively.

Examples of survey responses received are below:

Turned away from A&E two weeks before being admitted to hospital. Told to take steroids at home despite warning them of my dehydration and inability to eat due to constant bowel movements and vomiting. If they had treated me then it might have prevented the bowel surgery.

Took myself to A&E reporting symptoms of severe abdominal pain, nausea and vomiting, and 20 plus bowel movements a day. Saw a consultant, asked about dehydration and malnutrition and told them explicitly of my IBD (UC) diagnosis. Was sent home and told to take prednisolone (a steroid treatment). Two weeks later, unable to move because of the pain, was admitted to hospital where, a couple of weeks later, after medical treatment failed, I required a surgical procedure and feeding through a drip to save my life. I wonder if the doctors and staff had been more knowledgeable about IBD - and had I received treatment and intervention earlier - whether I might not have had to undergo surgery.

I was very impressed with how quickly the medical staff were able to diagnose my daughter’s condition and at the effectiveness of her medication, once in hospital I cannot fault the level of care she received.

Dr Ian Arnott, associate clinical director, UK IBD audit said:

European populations have a high prevalence of UC, nearly 505 per 100,000 and the UK is a high-incident area for IBD generally. The results in these reports do give rise to optimism; there have been steady improvements in many aspects of IBD care and many of the easy gains have already been realised. This is attributable to the hard work, dedication and persistence of the clinical teams across the country. However, important aspects of care remain below desirable levels and missing opportunities to begin or escalate treatment for patients is a cause for concern.

Dr Richard Russell, consultant paediatric gastroenterologist and clinical lead, paediatric report said:

Children’s services looking after patients with UC have improved the care they provide in this round of the audit. This is particularly encouraging because more hospitals participated, alongside specialist services, in this round compared with previous rounds. An interesting finding was that 75% of adolescent patients with UC, who were treated by children’s services, rated their overall care as ‘excellent’, compared with 25% of adolescent patients treated by adult services. This provides important information when planning future services for adolescents with IBD.

For more information, please contact Hannah Bristow, Clinical Standards communications officer, on 020 3075 1447 / 07584 303 784 or email Hannah.Bristow@rcplondon.ac.uk