For children and adults with ulcerative colitis (UC), a type of inflammatory bowel disease, mesalamine is a commonly prescribed medication that may not only ease symptoms like pain and inflammation, but also prevent flare-ups once symptoms are under control.
Despite its effectiveness, nearly 70 percent of teens and young adults who have UC and start the treatment quit taking the medication within a year, according to research published in the British Journal of General Practice.
The study, which involved more than 600 people with ulcerative colitis between ages 10 and 24, also found that a quarter discontinued their treatment after just one month.
“Young people with ulcerative colitis are not very adherent to the medicine, and that may lead to worse outcomes,” says Richard Pollok, PhD, an author of the study and a professor of gastroenterology and gastrointestinal infection with St. George’s University Hospitals in London. “Young patients may get better and think they don’t need to continue, or they may be unaware of the need to continue if [the consequences are] not explained carefully at diagnosis.”
Symptoms Can Return if Meds Aren’t Taken as Prescribed
Dr. Pollok and his collaborators stress that failure to keep up with treatment (known as nonadherence) can raise the risk fivefold of symptoms reappearing early after the disease has gone into remission (known as relapse) compared with those whose adherence is over 80 percent.
Nonadherence may lead to a reduced quality of life, as well as severe disease and a higher risk of colon cancer. These outcomes, in turn, may result in higher healthcare costs to treat complications, such as through surgery.
“If left untreated, young people could suffer with symptoms such as diarrhea, abdominal pain, or even blood in their stool for years,” said Sonia Saxena, MD, another author of the study and the director of the Imperial Child Health Unit in the School of Public Health at Imperial College London, in a press release. “Alternatively, there may be active inflammation in the gut that does not result in symptoms or visible signs but still causes damage.”
For the analysis, the scientists reviewed data taken from a large research database that included 607 young people diagnosed with UC between 1998 and 2016. All the patients had started mesalamine (also known as 5-aminosalicylic acid or 5-ASA) maintenance treatment within six months of their diagnosis date and were followed for up to one year.
Challenges of Keeping Up With Treatment
The research team discovered that the discontinuation rate was higher among those between ages 18 and 24 (74 percent) compared with 56 percent of those ages 15 to 17 and 61 percent of those ages 10 to 14.
Young people in the older age group may be more likely to stop their treatment as they become more independent, losing the financial support and guidance of their caregivers (such as parents), the study suggests.
For Jason Harper, MD, a clinical assistant professor with the University of Washington and the director of the Harborview Medical Center inflammatory bowel disease program in Seattle, pill burden can also be an obstacle.
“One of the challenges of adhering to therapy — especially for younger folks — is that some 5-ASA drugs may require taking over eight pills a day,” says Dr. Harper, who was not involved in the study. “Also, some of the pills themselves can be very large.”
In his view, the study spotlights how attention and guidance from the healthcare provider can be lacking when it comes to drug adherence.
“It’s all a matter of finding the time,” says Harper. “When you have five minutes per patient, these things can fall to the wayside. If we’re really going to move the needle in providing comprehensive chronic disease management, we have to find the time and be comfortable discussing the importance of taking medications regularly and encouraging people to adopt healthy behaviors.”
Pollok adds that it can be difficult and awkward for young people to discuss diarrhea, incontinence, and other symptoms of inflammatory bowel disease.
Economic Factors Are a Consideration
Young people who come from economically disadvantaged backgrounds may also have more difficulties keeping up with their medications.
Investigators discovered that residents in deprived postcodes (zip codes) were more likely to discontinue treatment compared with those who live in more affluent postcodes, something they suggest may be related to the cost of prescriptions.
Harper, who provides care for many people in distressed economic circumstances, notes that challenges can go beyond the cost of medication.
“Some can have more difficulties taking time off from work and finding transportation when face-to-face appointments are required for prescriptions,” he says. “There can also be communication barriers when English is not their first language.”
A Problem With Urgent Need of Solutions
The National Institute of Diabetes and Digestive and Kidney Disease estimates that 600,000 to 900,000 people in the United States have ulcerative colitis, and people between the ages of 15 and 30 are more likely to develop the disorder.
Worldwide, the condition affects more than five million individuals, and the incidence rate continues to increase, according to a study published in the Lancet in 2023.
Research also indicates that costs for individuals and the healthcare system as a whole will only rise if people continue to not follow their prescribed medications. A 2022 abstract that was published in the journal supplement Value in Health looked at pharmacy and medical claims from 2019 and found that people who didn’t follow their treatment were about two times more likely to be hospitalized (18.1 percent) compared with those who did follow their treatment (9.6 percent). Cost considerations may also encourage drug adherence — inpatient costs averaged $47,700 for those who didn’t take their medications versus $23,390 for those who did.
To lower the disease burden, study authors urge general practitioners to play a stronger role. They advise that these patients be actively followed up to see if they are taking their medications and if they can afford them, as well as to discuss what to do if symptoms stop and start. They also suggest that alerts should be placed on health records to remind general practitioners to review these patients.
Harper suggests that some young patients explore possible single-pill daily options and injectables if applicable.
“For some, taking injectables once every two months can be easier than remembering to take a pill every single day,” he says.
A pill box organizer can also help patients stick with their regimen. Also, taking pills with food or a flavorful drink (juice, for example) can make them go down easier.
“Clearly, there’s a message that we’re not getting across: People need to be on therapy for ulcerative colitis, and it’s a condition that benefits from long-term treatment,” says Harper.