IBD Patient COVID-19 Survey Results

We can all agree that the COVID-19 has been a strange and unpredictable time, leading to a variety of emotions including stress and sadness.

People living with inflammatory bowel disease (IBD) may experience extra layers of symptoms and struggles, further amplifying the challenging impact.

To better understand IBD patients’ perception, including concerns and fears, a survey was conducted by the European Federation of Crohn’s & Ulcerative Colitis Associations.

Study Details

This survey was co-designed with Professor Silvio Danese, Head of the IBD Center at Humanitas University Hospital in Milan with the intention to better understand the concerns and fears of the IBD community when it comes to the COVID-19 pandemic.

The survey information was collected from March 30th – April 16th 2020. Out of the 3,815 participants, 72 percent were female and 28 percent were male. The average age was 41 years old; 40 percent whom live with children. As for the type of IBD condition, 58 percent had Crohn’s disease, 40 percent had ulcerative colitis, and 2 percent with indeterminate colitis.

The bulk of the participants, about 1,000, came from Italy, with Netherlands following at about 600. The top seven countries that participated were: Italy, Netherlands, Brazil, Greece, Portugal, Norway, and Spain.

Social Isolation

The survey results reported that 85 percent of participants were worried about physical contact with other people and 57 percent feel the impact of social isolation.

Social isolation is a general concern for those with IBD, due to struggles with symptoms such as aches, pains, fatigue, and frequent bathroom trips. It’s normal to want to withdraw from social activities when not feeling well. Yet losing a sense of connection and community can negatively impact health.

Research has even linked social isolation and loneliness to a higher risk of conditions including high blood pressure, heart disease, obesity, anxiety, depression, and decreased immune function — making matters worse in terms of health for COVID-19.

Difficulty Accessing Physicians

Pre-COVID-19 times, studies suggested that IBD patients were struggling with a lack of multidisciplinary care and were not able to effectively receive and provide appropriate communication with their health care providers.

During COVID-19 times, 46 percent of participants reported having problems reaching their physician. Although 75 percent of participants are afraid to go to the hospital for a consultation and afraid to reach healthcare facilities, they equally they have no issue about reaching their doctor if needed.

Factors that Reduce Fear and Worry

A shocking 85 percent of the study participants are fearful of getting infected from COVID-19 and 65 percent are afraid of dying from it.

When it comes to stress level, about 73 percent feel stressed from the situations and 60 percent think the stress may worsen the symptoms of the disease. Stress and anxiety don’t cause IBD, but during times of physical or emotional stress, more flare-ups can occur. Particularly during times like this, it’s important for patients to practice stress management techniques.

There is some hopeful thinking among participants with IBD. About 51 percent of participants think there is something that reduces their fears and worries about COVID-19. The majority of support, at 42 percent, was felt by patient associations. Following was 27 percent from relatives and 14 percent from national and international authorities.

Health Care Recommendations

It appears that about half, 45 percent, of physicians have been proactive about providing information about COVID-19 to patients with about 43 percent giving specific recommendations relating to situations such as drugs and contact.

When it comes to immunosuppressive drugs, 98 percent of physicians have not recommended that their patients stop because of COVID-19. About 96 percent of patients followed these recommendations, yet 63 percent are afraid that their medications may increase the risk of COVID-19 infection.

One third of participants would like to receive more advice about COVID-19 from their physicians. As physicians and the health care system is overwhelmed, a remote, digital health coach could help alleviate this issue.

Nori Lends a Helping Hand

Nori is computer-driven and highly personalized, coaching thousands at the same time, with the aim to help the entire community. Nori Health offers remote chatbot coaching that’s individualized, authentic, and easy to use; working alongside medical protocol and drug recommendations.

We are on a mission to support everyone affected by Crohn’s & Colitis — from patients to healthcare professionals. Our goal is to provide patient support in between hospital or doctor visits.

If you or your patients have concerns about how to stay safe during COVID-19 times, please read our blog here. We are providing free access to as many patients as possible, requesting access now for support during this tough time.

This article has been written by Lisa Booth, registered dietitian and nutritionist, and co-founder of Nori Health. Content is based on her professional knowledge, and our collection of 100+ scientific research study papers.