Patient Demographics and Disease Characteristics

In total, 584 patients completed the survey: 100 (US), 100 (Canada), 100 (Japan), 100 (France), and 184 (Finland). Overall, 47% of the patients were female, and the mean age of the respondents was 46.7 years [standard deviation (SD) 14.4 years], with the majority (65%) aged under 50 years. Nearly half (46%) of the patients had ever received tumor necrosis factor inhibitor (TNFi) therapy for their UC, and 81% of patients had moderate to severe disease (Table 1). Patients had been diagnosed with UC for a mean of 10.8 years (SD 11.3 years).

Table 1 Patient demographics and disease characteristicsDisease Activity and Patient Profile During the COVID-19 Pandemic

Globally, 25% of patients reported they experienced more flares since the beginning of the COVID-19 pandemic in early 2020, compared with 2019, while 18% of patients experienced fewer flares over the same period (based on recall of their experience). The proportions of patients reporting more flares, stratified by subgroups of interest (gender, age, urbanicity, and experience of challenges accessing health care), are shown in Fig. S1a in the electronic Supplementary Material. Patients more likely to report more flares were aged 18–49 years versus ≥ 50 years and those who had ever experienced challenges accessing the health care needed versus those who had not. In total, 61% of patients had ever experienced challenges accessing the health care needed.

During the pandemic, over half of patients (57%) reported excellent or good overall health (Fig. 1a), and 64% considered their UC to be in remission (Fig. 1b). Overall, 88% of respondents taking prescription medication were very satisfied or somewhat satisfied with their current UC treatment plan (36% were very satisfied; 53% were somewhat satisfied) (Fig. 1c). However, overall, 60% of all patients said they would not see a need to consider other treatment options and would settle for treatment that made them feel good enough, even if other treatment options might make them feel better than they did at the time (Fig. 1d).

Fig. 1

Patient-reported a overall healtha and b remission status and duration of remission or years since remission,b and the proportion of patients reporting c satisfaction with their current treatment plan (among those currently taking prescription medication),cd settling behavior,d and e agreement that UC controls their lifee. Percentages may not sum to 100% due to weighting and/or computer rounding. UC ulcerative colitis. aQuestion: “How would you describe your current overall health?” bQuestions: “Do you currently consider your UC to be in remission (when we say remission, we mean that your disease is controlled with few to no symptoms)?” “How long has your UC been in remission?” “How long has it been since your UC was last in remission?” cQuestion: “You indicated you are currently taking prescription medication for your UC. How satisfied are you with your current UC treatment plan?” dAgreement with the statement, “If my treatment makes me feel good enough, I don’t see a need to consider other treatment options, even if they might make me feel better than I do now.” eAgreement with the statement, “I feel that my UC controls my life, rather than me controlling the disease”

In total, 56% of respondents agreed with the statement, “I feel that UC controls my life rather than me controlling the disease,” with 20% strongly agreeing (Fig. 1e). Patients aged 18–49 years were more likely to agree with this statement than patients aged ≥ 50 years, as were patients who had previously experienced challenges accessing the health care needed versus those who had not and those patients who reported more flares during the pandemic than in 2019 versus those who reported the same or less number of flares (see Fig. S1b in the electronic Supplementary Material).

Aspects of Disease Management During the COVID-19 Pandemic

The aspects of UC management that were most negatively impacted by the COVID-19 pandemic were emotional well-being and the ability to perform daily activities. Aspects of UC related to the use of prescription medications appeared to be the least affected by the pandemic (Table 2).

Table 2 Impact of the COVID-19 pandemic on aspects of UC management

Globally, patients reported that having fewer social outings (37%), working from home (29%), having less busy schedules (28%), and having more time to focus on their overall health (26%) made it easier to control their symptoms during the pandemic (Fig. 2a). However, 30% of the survey respondents reported that nothing made it easier to control their UC symptoms during the pandemic (Fig. 2a). Conversely, respondents reported that anxiety/stress (43%), hesitancy to go into a hospital or office to receive care or treatment (34%), and not being able to get an appointment (23%) made it more difficult to control their UC symptoms during the pandemic (Fig. 2b). In total, 26% of patients felt that nothing made it more difficult to control symptoms during the pandemic (Fig. 2b).

Fig. 2

Factors that made the control of UC symptoms a easier and b more difficult during the COVID-19 pandemica. COVID-19 coronavirus disease 2019, UC ulcerative colitis. aQuestion: “Do you think any of the following have made it easier/more difficult to control your symptoms during the COVID-19 pandemic? Please select all that apply”

Just under half of patients globally (47%) agreed that they felt more isolated and alone in managing their UC during the COVID-19 pandemic, with 17% strongly agreeing and 30% somewhat agreeing. Patients more likely to agree with this statement were aged 18–49 years versus ≥ 50 years, residing in inner city, urban, or suburban areas versus small town/rural areas, those who had ever experienced challenges accessing the health care needed versus those who had not, and those patients who reported more flares during the pandemic than in 2019 versus those who reported the same or less number of flares (see Fig. S2a in the electronic Supplementary Material). In total, 51% of patients worried about their ability to control their symptoms once life returned to normal post the pandemic.

More patients relied on certain alternative support systems to manage UC during the pandemic, compared with pre-pandemic (Table 3). Overall, the largest increases in reliance, compared with pre-pandemic conditions, were reported for “having had virtual appointments with their doctor” (13% vs. 55% pre-pandemic and during the pandemic, respectively), “used an online patient portal to contact their doctor’s office or see laboratory results” (31% vs. 47%), and “used social media to connect with other patients or learn about UC” (24% vs. 39%).

Table 3 Timing of reliance on alternative support systems before, during, and after the COVID-19 pandemic for management of UC

In total, 25% of patients reported they had never set goals for managing their UC with their doctor and did not plan to do so (Table 3). The proportions of patients who had ever set goals declined from 48% before the pandemic to 46% during it, and 40% planned to do so after the pandemic. Over half of patients globally had never relied on and did not plan to rely on a patient support group (59%) or advocacy group for information (54%; Table 3). Nearly two-thirds of patients (62%) agreed that they had become better at tracking their symptoms during the pandemic, and this was directionally consistent with the reported use of symptom tracking or disease management applications, which increased from 23% pre-pandemic to 31% during the pandemic (Table 3).

Overall, the survey respondents showed a reluctance to make changes to their treatment plan; 53% of patients agreed with the statement, “I was hesitant to make changes to my UC treatment plan during the COVID-19 pandemic.” Certain patients were more likely to agree with this statement, including those aged 18–49 years versus ≥ 50 years, those who had ever experienced challenges accessing the health care needed versus those who had not, and those who reported more flares during the pandemic than in 2019 versus those who reported the same or less number of flares (see Fig. S2b in the electronic Supplementary Material).

During the COVID-19 pandemic, 36% of respondents taking prescription medications discussed and made changes to their treatment plan (specifically in terms of the prescription medication for their UC) with their doctor, and a similar proportion (35%) discussed but did not make changes to their plan. Changes to treatment plans were more common in patients aged 18–49 years versus ≥ 50 years, those who had ever experienced challenges accessing the health care needed versus those who had, and those who reported more flares during the pandemic than in 2019 versus those who reported the same or less number of flares (see Fig. S2c in the electronic Supplementary Material).

Health Care Access During the COVID-19 Pandemic

Overall, patients’ satisfaction with their ability to access the health care needed during the COVID-19 pandemic was high, with 79% reporting that they were very/somewhat satisfied (Fig. 3a). During the pandemic, 55% of patients attended virtual appointments with their doctor (e.g., via telephone or video chat). The mean (SD) numbers of in-person, virtual-telephone, and virtual-video appointments with a doctor for UC during the pandemic were 3.8 (5.7), 1.6 (3.1), and 2.0 (3.3), respectively. Globally, 26% of patients reported that they had ever experienced difficulties getting an appointment with their UC specialist and, of these, 74% reported that this challenge grew worse during the pandemic (see Fig. S3 in the electronic Supplementary Material). Other challenges associated with access to health care that worsened during the COVID-19 pandemic among those who had ever experienced each challenge included difficulty getting time off work to go to medical appointments (47% said this challenge grew worse), lack of conveniently located medical care (51% said this challenge grew worse), and financial difficulties in paying for care (71% of patients said this challenge grew worse; see Fig. S3 in the electronic Supplementary Material, which demonstrates the challenges encountered). Those patients who had ever experienced challenges accessing the health care needed reported having more virtual appointments since the start of the pandemic, compared with patients who had never had access challenges, either by video (mean number of appointments 2.7 vs. 0.9, respectively) or by telephone (mean number of appointments 2.2 vs. 0.8, respectively).

Fig. 3

Proportion of patients reporting satisfaction with a ability to access the health care needed during the COVID-19 pandemica, b aspects of in-person and virtual appointments during the COVID-19 pandemicb, and c the technology platform used to access virtual appointments during the COVID-19 pandemicb. Percentages may not sum to 100% due to weighting and/or computer rounding. COVID-19 coronavirus disease 2019, UC ulcerative colitis. aQuestion: “How satisfied have you been with your ability to access the health care you need during the COVID-19 pandemic?” bQuestion: “Thinking about your last in-person/virtual appointment during the COVID-19 pandemic with the doctor that you see for your UC, how satisfied were you with each of the following?” (By virtual appointments, we mean the process of providing health care from a distance [as opposed to in-person] through technology [e.g., telephone or video chat])

Health Care Experience of Patients During the COVID-19 Pandemic

Patients were equally satisfied with the overall quality of care they received, regardless of whether the appointment was in-person or virtual (81% of patients being very satisfied/satisfied with both in-person or virtual appointments; Fig. 3b). Additionally, both in-person and virtual appointments were associated with high levels of patient satisfaction (> 75% of patients being very satisfied/satisfied in terms of ability to be open with their doctor about their experiences, discussion of disease management goals, discussion of symptoms and flares, and quality of communication; Fig. 3b). Patients reported lower levels of satisfaction with in-person versus virtual appointments in terms of the length of the appointment (73% vs. 80% were very satisfied/satisfied, respectively) and ease of scheduling the appointment (69% vs. 76% were very satisfied/satisfied, respectively; Fig. 3b). Patients reported higher satisfaction with in-person versus virtual appointments for their doctor’s ability to physically assess their symptoms (78% vs. 66% for in-person vs. virtual appointments, respectively). In addition, most patients (83%) were very satisfied/satisfied with the technology platform they used to access their virtual appointments (Fig. 3c).

Patient Preferences for Provision of Health Care During the COVID-19 Pandemic

Overall, patients reported that they strongly or slightly preferred in-person versus virtual appointments for most interactions with their doctor, including when meeting a new doctor for the first time (68% vs. 17%, respectively), during a disease flare (55% vs. 25%, respectively), and for regular check-ups with the doctor managing their UC (52% vs. 29%, respectively; Fig. 4). In contrast, 41% of respondents agreed that they strongly or slightly preferred virtual appointments when they needed to refill their prescriptions, compared with 21% who reported that they strongly or slightly preferred in-person appointments. Patient subgroups more likely to state a preference for virtual appointments for every appointment type were patients aged 18–49 years versus ≥ 50 years, those residing in inner city, urban, or suburban areas versus those residing in small town/rural areas, and those who had ever experienced challenges accessing the health care needed versus those who have never had access issues (see Fig. S4 in the electronic Supplementary Material).

Fig. 4

Patient preferences for appointment types (in-person vs. virtual) during the COVID-19 pandemic. Percentages may not sum to 100% due to weighting and/or computer rounding. COVID-19 coronavirus disease 2019, UC ulcerative colitis. Question: “Which type of appointment with the doctor you see for your UC would you prefer for each of the following circumstances?”