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 Royal College of Physician’s Clinical Effectiveness and Evaluation Unit (CEEU). 2028 adults and 167 children responded to the survey.
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 and coordination of care; treatment with respect and dignity; involvement; doctors; nurses and cleanliness. Patient experience was similar across England, Northern, Scotland and Wales.
However, 85% of IBD patients said they experienced some pain during their stay in hospital with half reporting it was usually severe. Of particular concern was the fact that 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.
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.
All hospitalised patients with IBD require nutritional assessment and advice, yet 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 included:
• 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.
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.”
