Clinical outcomes are measurable changes in health, function or quality of life that result from our care. Constant review of our clinical outcomes establishes standards against which to continuously improve all aspects of our practice.
About the Gastroenterology Service
The Gastroenterology Service at Great Ormond Street Hospital (GOSH) is one of the UK’s leading centres of excellence in treating complex diseases affecting the gut and other associated organs.
The team sees over 5,000 children with chronic and life-limiting gut conditions each year, and has pioneered leading edge treatments for previously incurable diseases, including autoimmune paediatric gut disease.
The department sees more children with life-limiting and life-threatening gut disease than any other centre in the UK. In collaboration with the University College London (UCL) Great Ormond Street Institute of Child Health, the department is committed to translating excellence in research into effective treatments of gastro-intestinal (GI) disorders in children.
Clinical outcome measures
Inflammatory bowel disease
The Gastroenterology Service participates in ImproveCareNow (ICN), a United States-based collaboration of over 100 Paediatric GI centres including two in the UK, one in Qatar and all Paediatric IBD centres in Belgium. The collaboration benchmarks improvement in quality and monitors clinical outcomes for children with inflammatory bowel disease (IBD).
As part of the ICN initiative, we monitor specific IBD outcome measures and have routinely collected data since 2011. These data include outcomes relating to disease remission rates, growth, nutrition, steroid use and surgery for the children we treat.
1. Disease Activity and Clinical Remission
While there are seasonal and external factors that affect these outcomes, the trend as shown below indicates that most patients are inactive patients, which means they are in clinical remission. There are also active patients, whose disease is not in remission and is mild, moderate or severe. The graph below shows data from April 2011 to September 2018.
Figure 1.1 IBD Disease Activity and Clinical Remission, April 2011 to September 2018
Between April 2011 and September 2018, 70.3% of our patients were in remission; this means these children are well and do not need hospitalisation or steroid treatment. The ICN Network target overall is 83%. As we incorporate all of our IBD patients into the database, including very early onset (less than 2 years of age) and early onset IBD (less than 6 years of age), our data become skewed, as these patient groups have more severe disease and are difficult to treat.
2. Growth and Nutrition
IBD and some of the treatments for it can affect the growth and nutrition of children. They may have a loss of appetite, lose weight, or have slow growth in height. This can be due to a reduced amount of calories and nutrients absorbed by the body because of the inflammation in the digestive system. To monitor the growth and nutritional status of our patients we measure their height and weight against the expected values for their age and sex. We show here the percentage of patients by growth status and the percentage of patients by nutritional status.
Figure 2.1 Percentage of patients by growth status, Apr 2011 to Sep 2018
Between Apr 2011 and Sep 2018, 93.9% of our patients on average had a satisfactory growth status. In 2018, 94% of all patients treated at an ICN centre had satisfactory growth. Definitions of satisfactory, at risk and in failure are as shown in the ImproveCareNow care guidelines. The 'not assessed 0.7%' is a data entry issue, as all patients get a weight and height measured with each clinical assessment.
Figure 2.2 Percentage of patients by nutritional status, Apr 2011 to Sep 2018
Between Apr 2011 and Sep 2018, 92.7% of our patients on average had a satisfactory nutritional status. In 2018, 90% of all patients treated at an ICN centre had satisfactory nutritional status. Definitions of satisfactory, at risk and in failure are as shown in the ImproveCareNow care guidelines. The 'not assessed 2.5%' is a data entry issue, as all patients get a weight and height measured with each clinical assessment.
Using medication safely and effectively is important to manage IBD and maintain clinical remission in patients. Prednisolone is a corticosteroid (a type of steroid drug) used to reduce inflammation in people with IBD. However, prednisolone may cause side effects such as rapid weight gain, worsened acne in young people, disrupted sleep or mood changes. Most side effects improve when prednisolone is no longer used or the dosage is lowered. Therefore, we look to reduce the use of prednisolone when clinically appropriate for our patients. We monitor the use of prednisolone, and show here the percentage of our patients using, and not using, prednisolone.
Figure 3.1 Percentage of patients by use of prednisolone, Apr 2011 to Sep 2018
Between Apr 2011 and Sep 2018, 91.3% of our patients on average were not using prednisolone. The trend indicates a sustained increase in the proportion of our patients not using prednisolone. From October to December 2018 this was 100%; the network target is 95%. In 2018, 96% of all patients treated at an ICN centre were not taking steroids.
4. Colectomy Rates
A small number of IBD patients have symptoms that do not respond to treatment. For these patients, an operation called a colectomy may be considered. A colectomy removes all or part of the colon to treat the condition and improve quality of life. However, there are risks and post-operative complications associated with having surgery, which can have current and future lifestyle implications. So, we aim to avoid surgery unless absolutely necessary.
The total numbers of colectomies in the calendar years 2011 to 2018 at our institution were a total of five, out of a total of 758 patients seen, a rate of 0.66%. Data from two published paediatric studies from the UK (Cambridge and Southampton) state a colectomy rate of around 6-9%.
Previous GOSH data presented at an international meeting (ESPGHAN) in 2010 looked at colectomies on patients pre-biologic treatment between 1996 and 2002 (3.6% of 138 patients), and post-biologic treatment between 2003 and 2009 (2.9% of 138 patients). These data show that our medical treatment seems to prevent paediatric / adolescent colectomies.
This information was published in October 2019 and will be updated in October 2020.
Gasparetto, M. et al., Clinical Outcomes in Paediatric Ulcerative Colitis: A Single-Centre Cohort Study, Journal of Pediatric Gastroenterology and Nutrition, 63, Supplement 2, S73, 242, 2016
Ashton, J.J. et al., Colectomy in pediatric ulcerative colitis: A single center experience of indications, outcomes, and complications, Journal of Pediatric Surgery, 51, 277-281, 2016
Kiparissi, F., Lindley, K., Shah, N., Elawad, M., Colectomy Rates In Paediatric Ulcerative Colitis Over A 14 Year Period In A Tertiary Paediatric Gastroenterology Centre, Journal of Pediatric Gastroenterology and Nutrition, 50, Supplement 2, E105 PO-G-232, 2010