Young Patients with UC Likely to Discontinue Treatment, Study Finds


The greatest level of treatment discontinuation was seen among patients aged 18-24 years, highlighting an increased risk of early disease relapse.

Sonia Saxena | Credit: Imperial College London

Sonia Saxena

Credit: Imperial College London

Adolescents and young adults with ulcerative colitis (UC) are unlikely to adhere to maintenance oral 5-aminosalicylic acid (5-ASA) during their first year of treatment, putting them at a greater risk of early disease relapse, according to a new study.

Results from an observational cohort study of more than 600 patients aged 10-24 years with UC found 25% of patients discontinued treatment within 1 month and 69% within 1 year, with the greatest level of discontinuation observed among patients aged 18-24 years.1

“There are therapies that can put the condition into remission if taken as prescribed. However, our study shows that many adolescents and young adults are stopping their medication within a year of being diagnosed. This is concerning as they are at risk of their condition returning and further complications. It can also lead to severe complications such as surgery to remove part of the gut,” said Sonia Saxena, director of the Imperial Child Health Unit in the School of Public Health at Imperial College London.2

UC can affect patients of any age, but it usually starts between the ages of 15-30 years, and less frequently between 50-70 years of age. About 20% of patients with UC are diagnosed before they are 20 years old.3

Although there is no cure for UC, treatment involves medication to calm inflammation and induce remission.3 Among the available treatments for UC, 5-ASA agents, including sulfasalazine, mesalamine, olsalazine, and balsalazide, have been a staple in management of UC since the approval of sulfasalazine more than half a century ago.4

To determine rates and risk factors for discontinuation and adherence to UC treatment in children and young adults, a team of investigators led by Nishani Jayasooriya, IBD research fellow at St George's University London, used data from the United Kingdom Clinical Practice Research Datalink to identify and follow patients aged 10-24 years diagnosed with UC between 1998 and 2016. Patients were excluded if they had codes for both UC and Crohn disease, indeterminate codes, insufficient follow up data, or a comorbid condition.1

In total, investigators identified 607 adolescents and young adults for inclusion in the study. Among the cohort, 56% of participants were male and the majority (70%) were aged 18-24 years. Investigators followed patients from the initiation of oral 5-ASA for 1 year or until deregistration from their practice or death. The primary outcome of interest was time to oral 5-ASA discontinuation in the first year of maintenance treatment. The secondary outcome of interest adherence to oral 5-ASA maintenance treatment, which was defined by investigators as the proportion of days covered with oral 5-ASA medication.1

Time to oral 5-ASA discontinuation and adherence rates were calculated using Kaplan–Meier survival analysis. Cox regression models were built to estimate the impact of sociodemographic and health-related risk factors, including sex, age, and Index of Multiple Deprivation.1

Upon analysis, 152 participants discontinued treatment within 1 month and 419 discontinued treatment within 1 year. The median time to discontinuation was 162 days. Investigators noted discontinuation was greater among participants aged 18–24 years (74%) than the younger age groups, with discontinuation rates of 61% and 56% among patients aged 10-14 and 15-17 years, respectively. Patients aged 18–24 years were more likely to discontinue maintenance treatment in the first 12 months compared to patients aged 10–14 years (adjusted hazard ratio [aHR] 1.43; 95% confidence interval [CI], 1.04-1.97).1

Mean adherence for the study population in the first year of oral 5-ASA maintenance treatment was 72% (95% CI, 70-75), which investigators noted was equivalent to just under 9 months’ duration in the first 12 months of treatment. Investigators also pointed out adherence was reduced among patients aged 18-24 years (69%; 95% CI, 66-72) compared to patients aged 10-14 years (80%; 95% CI, 74-86).1

Patients living in deprived postcodes were more likely to discontinue treatment than patients living in affluent postcodes (aHR, 1.46; 95% CI, 1.10-1.92). Investigators also noted early corticosteroid use for an acute flare reduced the likelihood of oral 5-ASA discontinuation (aHR, 0.68; 95% CI, 0.51-0.90).1

“As doctors, this study shows we need to be keeping a close eye on patients particularly within that first year of starting medication,” Saxena concluded.2 “We should check if these patients are getting their medications and whether they have difficulty paying for them, we should also use the opportunity to talk through any recurring symptoms and how to access advice from providers such as a nurse specialist.”


  1. Jayasooriya N, Pollok RC, Blackwell J, et al. Adherence to 5-aminosalicylic acid maintenance treatment in young people with ulcerative colitis: a retrospective cohort study in primary care. British Journal of General Practice. doi:10.3399/BJGP.2023.0006
  2. Imperial College London. Health of young people with ulcerative colitis at risk as most stop taking medication within a year. EurekAlert! Published September 12, 2023. Accessed September 19, 2023.
  3. Cleveland Clinic. Ulcerative Colitis. Diseases & Conditions. Accessed September 19, 2023.
  4. Crohn’s & Colitis Foundation. Aminosalicylates. News from the IBD Help Center. Accessed September 19, 2023.
Related Videos
4 KOLs are featured in this series
4 KOLs are featured in this series
M. Safwan Badr, MD: Novel Treatments for Central Sleep Apnea in Last 10 Years
Video 4 - Featuring 3 KOLs in, "Implementing Treat to Target in the Long-term in Inflammatory Bowel Disease "
Video 3 - Featuring 3 KOLs in, "How important is transmural healing as a treatment target in UC and CD?   Where does intestinal ultrasound fit in CD management?  "
How Elite Athletes Can Optimize Sleep for Peak Performance, with Jesse D. Cook, PhD
Boadie Dunlop, MD, Weighs in on FDA Advisory Vote on Lykos’ MDMA
HCPLive Five at ADA 2024 | Image Credit: HCPLive
© 2024 MJH Life Sciences

All rights reserved.