A total of 370 IBD patients from two IBD centers were contacted by e-mail or during their hospital visits (infusion unit, outpatient appointment) and were asked to participate in our survey by answering the questionnaire. Response rate was 64% with a total of 237 patients participating in the survey. Mean age of all patients was 41.6 years, with equal distribution between male and female participants (49% vs. 51%). Sixty-eight percent (68%) of respondents had Crohn’s disease (CD) and the rest ulcerative colitis (UC). For their IBD care, patients attended clinics at a University (53%) and an NHS hospital (47%) in the Metropolitan areas of Athens and Piraeus (Table 1). One hundred and four (n=104) patients from the NHS Hospital cohort completed the questionnaire in person, and another 8 from the same cohort answered via email. All participants from the University hospital cohort (n= 125) responded electronically.
At the time of the survey, 89% of patients were on immunosuppressive medications, and only 11% received non-immunosuppressive treatment with 5-aminosalicylates (5-ASAs). In the immunosuppressed group, the majority of patients received treatment with biologic agents (including tofacitinib) (76%), either as a monotherapy (64%) or in combination treatment (12%). Nine percent (9%) of patients were on immunomodulators alone, while corticosteroids were given in 6% of patients. Patients in the 5-ASA group were significantly older than those in the immunosuppressed group. Also, Crohn’s disease was significantly more prevalent among immunosuppressed than non-immunosuppressed patients (Table 2).
According to WHO and CDC criteria for vulnerable and high-risk groups for COVID-19  , a quarter of patients fulfilled one or more criteria, with 15% of participants being older than 60 years and 25% having at least one co-morbidity apart from IBD. Presence of co-morbidities was more frequent in the non-immunosuppressed group, however there was no significant difference compared to immunosuppressed patients (p=0.054). A third of respondents reported active smoking at the time of answering the questionnaire.
Perceptions and attitudes towards COVID-19 pandemic
We first asked our IBD patients whether they felt that their bowel condition increases their risk of SARS-COV2 infection. More than 40% of respondents felt a lot or moderate fear, while three quarters (76%) felt at least a little afraid of contacting the virus (Figure 1A). More than half of participants (59%) were afraid that they might die if they got infected by SARS-COV2, with 10% admitting of being very afraid. At the same time, one fourth of patients (26%) was not worried of dying as a result of COVID-19 (Figure 1C). Looking at a subgroup analysis for the different types of IBD medications, patients on aminosalicylates appeared equally afraid with those on immunosuppressive treatment both with respect to their fear of SARS-COV2 infection and the fear of dying if infected (Figures 1B, 1D).
Our next question concerned patients’ perception with regards to their IBD treatment and the risk of COVID-19. A considerable proportion of respondents felt that IBD therapy increases their risk of SARS-COV2 infection (Figure 1E), with more than 70% being scared because of the IBD treatment they were receiving. Nevertheless, only 7% discontinued their therapy. Looking again at the subgroup analysis for the different types of IBD medications, patients on immunosuppression showed significantly higher levels of fear compared to those on non-immunosuppressive treatment (p=0.001). Almost half of the patients on 5-ASAs (48%) felt no fear with respect to their treatment and risk of coronavirus infection. On the contrary, for those on corticosteroids, biologics, immunomodulators and combination therapy no fear of treatment was expressed in 31%, 16%, 10% and 30% of patients respectively (Figure 1F). Looking at the levels (low, moderate, high) of fear felt among patients on immunosuppression, these did not differ among the different medication groups, with the majority of immunosuppressed patients expressing low and moderate levels of fear.
When we asked our patients whether they thought that the quality of their IBD care will be affected as a result of the COVID-19 pandemic, the majority replied that their healthcare will not be influenced. Nevertheless, a little more than a quarter of participants (27%) worried that the COVID-19 will have a negative impact on the quality of their healthcare. Interestingly, a small proportion of respondents (7%) felt that the pandemic might have a positive effect on the quality of care.
Behavior of IBD patients during COVID-19 pandemic
Compliance with preventive measures against COVID-19
Wanting to assess compliance with the preventive measures against COVID-19, we asked our patients whether they found it easy to comply with the specific actions that had been suggested and included 11 different aspects of their daily routines. According to their answers, the majority of participants showed very good compliance with the preventive measures. There was no difference between immunosuppressed and non-immunosuppressed patients (Table 2). From the eleven measures that participants were asked about (overall median compliance 67%), they felt that it was easy to stay at home (93%) and to wash their hands (91%). They found it harder to use personal protective aids, such as masks, gloves and antiseptics (43% compliance), and this tendency was observed both for participants that stayed at home and those leaving the house to go to work (overall median compliance 71%). More than half of the respondents had access to masks (56%), gloves (66%) and antiseptics (64%), however 14% of patients were not able to get hold of these items.
A third of patients worked from home, while another third left home to go to work, and this proportion was similar for patients receiving immunosuppressive treatment and those on 5-ASAs (Table 2). The rest of participants were not employed at the time of the survey. From those that were not self-employed, a third worked from home following employer’s encouragement, a third had to ask for permission to work from home and the rest had to go to their workplace.
During the lockdown, all patients on 5-ASAs and 89% of those on immunosuppressive medications left home to visit the hospital, have investigations done or go to the pharmacy. Following lockdown termination, 73% of patients visited the hospital or a diagnostic laboratory, despite admitting that they were afraid to do so. The fear did not differ between patients on immunosuppression and those on aminosalicylates.
Compliance with IBD treatment during the COVID-19 pandemic
Of the 237 IBD patients that participated in our survey, 16 (7%) discontinued treatment during the pandemic. Eleven patients (5%) stopped their medications after consulting their IBD physician, while 4 (2%) patients interrupted treatment on their own because of fear of COVID-19. One patient did not specify under what circumstances he discontinued treatment. No patient stopped therapy because of difficulty in obtaining medications or accessing the infusion unit.
All patients that discontinued treatment were among the immunosuppressed group. From the 4 patients that stopped treatment on their own, 2 discontinued azathioprine (one of them continued with mesalazine monotherapy), one stopped adalimumab injections and another one treatment with tofacitinib. The rest of the discontinuations (n=11) involved 4 patients on adalimumab, 3 on azathioprine, 1 on methotrexate, 2 on infliximab and 1 on combination therapy with ustekinumab, methotrexate and corticosteroids. All patients on 5-ASAs reported continuing their treatment on the pre-COVID-19 dosages. Of note, 5 out of the 11 patients that discontinued treatment following consultation with their gastroenterologist, were among the high-risk group, with one or more co-morbidities and/or age over 60 years. None of the 4 patients that discontinued treatment on their own was considered high risk. However, these 4 patients expressed moderate and high levels of fear regarding the risk of SARS-COV2 infection and IBD medications, while similar levels of fear were exhibited by 6 of the patients that consulted their doctor prior to treatment discontinuation.
We compared patients that continued and discontinued treatment with respect to their levels of fear of SARS-COV2 infection. Although not statistically significant, there was a trend of higher levels of fear among patients that discontinued treatment compared to those that continued, and that was observed both for fear of infection because of IBD and because of IBD treatment (Figure 2).
IBD care during the COVID-19 pandemic – Access to information and healthcare services
The majority of our IBD patients (76%) stated that they had access to a doctor when needed, during the coronavirus pandemic. Consultations were mainly done via telephone following modifications of IBD services to accommodate for patients’ needs remotely. Almost half of the patients (46%) used the remote electronic prescription system that became available very soon after lockdown measures were implemented. The paperless e-prescription was equally used by the group of immunosuppressed and the non-immunosuppressed patients (Table 2). Only a small proportion of IBD outpatient appointments (OPA) were cancelled either by patients or physicians (11%). A total of 19% of participants had to cancel some form of investigation (laboratory, imaging, endoscopy). Almost all patients (90%) on intravenous biologics continued their infusions at their IBD center of care, with 8% having to schedule their infusions at a different venue. A third of patients on subcutaneous biologics chose to receive their prescriptions in person (31%), a third chose the remote electronic prescription system (35%) and another third to have their medications delivered for free at home (34%).
When we asked our patients whether they received adequate information regarding COVID-19 infection, the majority (90%) answered yes. Regarding the source of information, almost a third (31%) received information by their gastroenterologist, 8% by their GP or family physician, while the majority of respondents were informed by the media (39%), internet and social networks (38%) (Figure 3). The proportions of patients that were exclusively informed by their gastroenterologist was 24%, whereas 58% of participants were exclusively informed by the media, internet and social networks. This difference was observed both in the group of immunosuppressed and in the non-immunosuppressed patients, although not statistically significant (p=0.702).
We asked our patients regarding their satisfaction from their IBD management during the COVID-19 pandemic. The vast majority (98%) of respondents stated satisfied, with only 2% feeling dissatisfied. Most patients (95%) reported being at least moderately satisfied with their care (37% very satisfied, 85% satisfied), and only 3% expressed little satisfaction (Figure 4). Satisfaction levels were similar among immunosuppressed and non-immunosuppressed patients (p=0.818).
IBD patients and COVID-19 exposure
Of the total 237 respondents, only 4 (2%) IBD patients reported contact with a confirmed COVID-19 case. Of these, 10% presented with symptoms suggestive of coronavirus infection. One patient tested positive for the virus, but there was no need for hospital admission. More than half of participants (54%) reported being able to isolate themselves if required.