Patterns of care for inflammatory bowel disease in China during the COVID-19 pandemic

More than 2·7 million individuals worldwide have been infected with severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) and 187 000 have died from the resulting coronavirus disease 2019 (COVID-19) as of April 25, 2020.¹ Despite the common use of immunosuppressive medications, it appears that patients with inflammatory bowel disease (IBD) have a similar risk for COVID-19 to the general population.² The management of IBD during and after the pandemic is challenging. The main concerns from a clinician's perspective are the risk for COVID-19 in patients with IBD (especially in those taking immunosuppressive medications or with malnutrition), timely follow-up and monitoring of disease, choice of and change in medical and surgical therapy, feasibility and availability of endoscopic assessment, and protection of health-care providers against SARS-CoV-2 infection.3, 4, 5, 6, 7 Additional concerns have been raised from the patients' perspective, including medical, psychosocial, and financial factors. Therefore, we did a survey involving patients with IBD to analyse their feedback on their care during the early and late phases of the COVID-19 outbreak in China. The anonymous questionnaire was designed by clinicians, registered nurses, and patient representatives and was posted on the China Crohn's and Colitis Foundation's patient portal.

2277 participants completed the survey. 880 (39%) were women and 1397 (61%) men; 1639 (72%) had Crohn's disease and 555 (24%) had ulcerative colitis. 111 (5%) respondents were from Hubei province. Of the 2277 respondents, 1134 (50%) were employed full or part time. Most (934 [82%] of 1134) had to work at home during the pandemic and 443 (39%) reported reduced income (appendix).

More than 50% of the respondents reported some degree of mood changes, with the peak of the frequency of moderate-to-severe psychological change in the middle of the outbreak in China—ie, mid-February, 2020. Many (1331 [58%] of 2277) respondents were worried about the risk for SARS-CoV-2 infection for themselves and their family and more than half (1184 [52%]) were concerned about the difficulty in seeing physicians (appendix).

Almost three-quarters of patients (1691 [74%]) reported that their disease state was stable during the initial outbreak (from January to March, 2020) and 1842 (81%) reported that their disease remained stable in the later phase (ie, mid-April, 2020). 137 (6%) patients were admitted for IBD flares and 23 (1%) had surgery. 639 (28%) patients used telemedicine—of whom 487 (76%) sought help from IBD health-care providers online—and 847 (37%) of 2277 patients had face-to-face visits. Most patients (1744 [77%]) did not change IBD medications during the outbreak. Of the 533 patients with a change in medications, the main reasons for the change were recommendations from treating physicians (157 [30%]), being unable to receive intravenous infusions (151 [28%]), and the availability of physicians or facilities (148 [28%]). Most respondents (1606 [71%] of 2277) were still able to obtain oral medications online (1125 [49%]) or from hospital pharmacies as before (481 [21%]). By mid-April, 2020, most (1628 [71%]) were able to obtain oral medicines from their hospital pharmacies as before (appendix).

The COVID-19 pandemic has posed challenges to every aspect of respondents' lives. Measures to curtail the virus, such as shelter-in-place, government mandates for postponing elective procedures, restriction of transportation, and the reassignment of gastroenterologists or IBD health-care providers, can interfere with routine or emergent care. Most patients with IBD experienced stable disease during the early and current phases of the outbreak and those individuals did not have to change their medications. Our survey data suggest that the impact of the COVID-19 outbreak on medical management of IBD was largely related to logistics. Restructuring IBD care, such as personnel reassignment, infusion service availability, drug delivery, and telemedicine, have been proposed as being important for IBD management during such a pandemic.⁸ Our survey shows that a quarter of patients sought care via telemedicine with their IBD physicians. There was also increased use of online delivery of oral medications.

Mental health issues have been reported by both patients and health-care providers during the outbreak.9, 10 Mental health issues are particularly important in patients with diseases of long duration, such as IBD. Our survey suggests that although patients' moods were affected by concerns about psychosocial and economic issues, their disease course was not affected. Respondents were concerned about the risk of infection and worried about access to health care. More than 50% of respondents had mood changes and their mood changes appeared to improve as the pandemic trend was flattening. More than 80% of employed respondents had to work from home and 40% of the respondents reported a reduced income. The financial impact can be long lasting, which could affect the affordability of and adherence to medical care. This could eventually alter disease outcomes.

The results from this large survey suggest that the COVID-19 pandemic affects patients with IBD medically, psychosocially, and financially. Most respondents' disease remained stable. Respondents using maintenance therapy and those requiring medication adjustments because of disease flares often met logistical challenges. The availability of telemedicine and online drug delivery services might have eased some of the burden. Psychosocial and economic effects of the pandemic on IBD care are common. The long-lasting effects will need to be studied over time.