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Living with a chronic and incurable disease like ulcerative colitis (UC) can be difficult. According to the American College of Gastroenterology (ACG), this inflammatory bowel disease can cause chronic diarrhea with blood and mucus, abdominal pain and cramping, and weight loss. While managing UC symptoms can be challenging at any time, a new global survey reveals that the COVID-19 pandemic made it even more difficult.
The survey, Impacts of the COVID-19 Pandemic on UC Patients, was fielded in 2021 in five countries, including the United States, Canada, Japan, France and Finland, and asked over 500 people diagnosed with UC, confirmed by endoscopy, to evaluate their experiences before, during, and after the pandemic. The survey found that the pandemic made it harder for some individuals living with UC to manage their disease. However, the survey also suggests that the public health crisis may have prompted some people living with UC to adopt new ways to take control of their health.
“The COVID-19 pandemic was a challenging time for people living with UC,” said Allyson S., who has lived with UC for more than 25 years. “But it appears that for some people, there may have been a silver lining to the COVID-19 pandemic as it provided them with an opportunity to focus on personal needs and managing their disease.”
Virtual appointments and care
The survey found that while access to healthcare was impacted, virtual appointments provided a way for patients to stay connected with their healthcare providers during national lockdowns and social distancing. Of survey participants, 55% opted for virtual appointments with their doctor, compared to 13% who used virtual appointments pre-pandemic. Eighty-one percent were satisfied with the care they received virtually, and 32% of respondents said they would continue to use virtual care in the future – almost double the number of people who reported using it before the COVID-19 pandemic.
However, survey respondents did report a preference for when they would use virtual care, noting that in-person appointments were preferred when meeting a new doctor (68%), experiencing a flare (55%), or for UC prescription refills (21%).
“We need to be more dynamic in the future when it comes to appointments and work more in a hybrid mode. There should be more space for individuals to choose if they want to have a virtual or clinic visit, as we saw from the survey that whether patients prefer meeting in-person or virtually can depend on the goal of the appointment,” said Remo Panaccione, gastroenterologist.
Adapting to lockdowns and restrictions
The COVID-19 pandemic forced many people out of their comfort zone. For those living with UC, lockdowns and restrictions may have had both positive and negative impacts on the management of their UC.
A quarter of participants reported experiencing more flares during the pandemic than in 2019, and 43% said the pandemic added anxiety and stress, making controlling symptoms more difficult.
COVID-19 may have also relieved some pressures related to dealing with the symptoms of UC at work and in social situations. Some respondents agreed that fewer social outings (37%), working remotely from home (29%), and overall having less busy schedules (28%) helped them better manage their disease.
Alternative methods for managing UC
The survey suggests that the COVID-19 pandemic may have prompted some survey respondents to find new ways to manage their UC via online and digital resources.
Before the pandemic, only 19% of respondents sought and relied on information and support from patient organizations, a number that increased to 27% during the pandemic. Additionally, survey respondents reported using symptom-tracking apps more during the pandemic versus before (31% vs 23%) and said that they planned to use them after the lockdown (29%).
“The COVID-19 pandemic disrupted so many people’s lives, and for some of those living with a chronic illness like UC, it was even more disruptive. The results of this global survey offer a window into how the UC community adapted to this type of disruption, what unmet needs persist – and possibly what patients and HCPs may do differently for the next pandemic,” said Allyson S.
To learn more about UC symptoms and for resources to help talk to your doctor, visit TalkingUC.com.
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