A survey of over 2,000 adults and over 160 children treated in hospital in the UK for inflammatory bowel disease (IBD, comprising Crohn’s disease and ulcerative colitis) found that over 90% of patients regarded their care as good, very good or excellent.
Respondents highlighted pain relief and nutrition as particular areas for improvement.
The survey was commissioned by the Healthcare Quality Improvement Partnership (HQIP) and carried out on behalf of the UK IBD Audit Steering Group by the RCP’s Clinical Effectiveness and Evaluation Unit (CEEU). 2028 adults and 167 children responded to the survey.
Patient satisfaction with hospital care
The survey indicated that patients were very satisfied with how well doctors and nurses worked together – confirming that good teamwork is the key to delivering a high quality experience.
Scores were also high for six core areas of care ‐ consistency & coordination of care; treatment with respect & dignity; involvement; doctors; nurses and cleanliness. Patient experience was similar across England, Northern, Scotland and Wales.
Patient concerns over pain and pain relief
Eighty five per cent of IBD patients experienced some pain during their stay in hospital) with half reporting it was usually severe. Of concern, a quarter of adults with pain indicated that they were in pain all or most of the time and 16% thought they did not receive enough pain relief medication. Results for children were similar although insufficient pain medication was reported in 12%. This highlights a need for hospital teams to focus on the monitoring and treatment of pain in this patient group.
Patient concerns over hospital food
One-fifth of adult IBD patients (19.9%) rated hospital food as poor, 26% found the food unappetising and 15% stated that the hospital food was not suitable for their dietary needs. Results were similar for Paediatrics.
Dietetic support for IBD
All hospitalised patients with IBD require nutritional assessment and advice. Only 38% of adult IBD reported a visit from a dietician during their inpatient stay, compared to 71% of paediatric patients.
Given the vital role of maintaining good nutrition in IBD, these findings are of concern.
Key recommendations
- All admitted IBD patients should receive input from specialist multidisciplinary teams with experience of managing these complex disorders.
- Local IBD teams should consider whether the general nursing staff have sufficient awareness and knowledge of IBD. They should initiate appropriate educational interventions and care pathways to support high quality nursing. The routine involvement of a specialist IBD nurse in the day‐to‐day care of IBD patients at ward level is seen as a potential driver to improving the overall quality of nursing care.
- All hospitalised patients with active IBD require routine documentation of nutritional intake, weight measurement and dietetic review. Nursing care plans should identify nutrition as a key element of day‐to‐day care.
- Ward medical and nursing teams should review their local Trust policies and current practice with regard to the frequency and effectiveness of pain assessment and provision of analgesia.
- Discharge policies for IBD patients require local review to ensure that patients receive good quality pre‐discharge information regarding medication, self‐care and follow‐up plans.
Dr Ian Arnott, consultant gastroenterologist, Western General Hospital, Edinburgh & clinical director for the UK IBD Audit, said:
This is the first national survey of inpatient experience in IBD. Although the report demonstrates good experience overall it highlights some key areas in need of improvement. The treatment of pain and the nutritional assessment of patients are facets of care that every service should address and improve as necessary. This will result in significant improvement in the experience of being in hospital, for these patients.
Dr Keith Bodger, consultant physician & gastroenterologist, Aintree University Hospital, said:
This is the first nationwide survey of inpatient experience for patients with IBD and the overall findings are mainly positive. The results identify specific areas for potential improvement in the care of these complex disorders. It is recognised that pain relief can prove challenging in IBD – the survey confirms a need for teams to focus on their approach to monitoring and treating inpatient pain.
Dr Kevin Stewart, clinical director of the RCP’s Clinical Effectiveness and Evaluation Unit (CEEU), said:
Doctors and nurses have worked closely with other professionals and managers to improve care for people with Crohn's and colitis so it's encouraging that so many patients felt well looked after when they were in hospital; this is a testament to the hard work of many people. We should be concerned, though about the poor pain control and lack of attention to nutrition which so many seemed to suffer. We need now to focus on these areas in future work to make sure that patients get the first class treatment which they deserve.
Richard Driscoll, chief executive, Crohn’s and Colitis UK, said:
The findings from the inpatient experience survey show that the majority of IBD patients were satisfied with their care. However, they rated their nursing care in hospital lower than the average responses in the national inpatient survey. This highlights the importance of patients having access to specialist nurses for Inflammatory Bowel Disease even on the hospital ward.
For further information, please contact Linda Cuthbertson, head of PR, on +44 (0)203 075 1254 / 0774 877 7919, or email Linda.Cuthbertson@rcplondon.ac.uk
- The inflammatory bowel diseases (IBD), ulcerative colitis (UC) and Crohn’s disease (CD) are common causes of gastrointestinal morbidity. The total cost of IBD to the NHS has been estimated at £720 million, based on an average cost of £3,000 per patient per year, with up to half of total costs attributed to relapsing patients. Up to 25% of cases will present in childhood years with a marked rise in the incidence of paediatric IBD noted in the UK over the past few decades.