We conducted a multicenter cross-sectional survey among patients with moderate-to-severe CD who underwent UST treatment. Twenty-seven hospitals in China participated in this study from October 2020 to February 2021, and patients were enrolled consecutively. Male and female patients enrolled in the study had a diagnosis established by a combination of clinical symptoms, endoscopic examination, pathologic examination, and the absence of alternative diagnoses (Lichtenstein et al., 2018). CD activity was classified based on the Crohn’s disease activity index (Conigliaro et al., 2021). The studies involving human participants were reviewed and approved by the China Ethics Committee of Registering Clinical Trials. The patients/participants provided their written informed consent to participate in this study.

“The Questionnaire in Chinese patients with moderate to severe CD who underwent UST treatment” was done just after the decision of treatment with ustekinumab. It consisted of 46 items, which could be completed by the patients within 10 min. First, the patients were asked 17 questions concerning their demographic information, including the age, body mass index, and the history of alcohol intake. Second, 25 questions about clinical characteristics were asked, including the date of onset, date of diagnosis, history of perianal surgery, and previous medications. Finally, the remaining four questions pertained to the reasons for UST preference, information sources for UST, and shared decision-making perception required answers. The detailed contents of the questionnaire are shown in Supplementary Table S1.

Patients received different doses of UST according to their body weight: 1) week 0: UST intravenous injection of 260 mg when weight was ≤55 kg, 390 mg when weight was >55 kg, but ≤85 kg and 520 mg when weight was >85 kg; 2) week 8: UST subcutaneous injection of 90 mg; and 3) every 12 weeks after week 8: subcutaneous or intravenous injection of the same dose of UST, dependent upon the physicians in different centers.

Continuous variables are presented as mean ± standard deviation or median (quartiles, Q1–Q3), and categorical variables are presented as frequencies and percentages. Different sources of information on UST and strategy for UST drug selection were compared between sexes and ages using the Chi-square test. Student’s t-test or the Wilcoxon signed-rank test was used for continuous variables, while the Chi-square test or Fisher’s exact test was used for categorical variables to compare the characteristics between groups (groups with different preferences toward the frequency of UST administration, different preferences toward modes of UST administration, and different preferences toward impacts of UST treatment on daily life). Variables with a p-value ≤0.1 were selected to fit a multivariate logistic model to explore potentially influential factors that led to different reasons for choosing UST. All tests were two sided, and the results were considered statistically significant at a p-value <0.05. All analyses were conducted using SAS 9.4 (SAS Institute, Cary NC, USA), and the graphs were plotted using R software (version 4.1) (R. R Development Core Team, 2021) with the ggplot2 package. (Wickham, 2016)

A total of 127 patients diagnosed with CD were enrolled, and 73 (57.5%) of them were males. The mean age at survey was 31.0 ± 11.3 years, the mean age at diagnosis was 25.9 ± 9.9 years, and the median interval between onset and diagnosis was 9.4 (1.8–48.2) months. Approximately half of the patients (48.8%) had a university education background, and 59 (46.5%) household income per capita of the patients were less than 5,000 yuan/month. Forty (31.5%) and 61 (48.0%) patients had good and fair health statuses, respectively. L1 (ileal) and B2 (stricturing) were the most common location and disease behavior of CD. Majority of the patients (74.8%) had biologic failure (mainly TNF inhibitors); the most common reason for the latest treatment discontinuation was unresponsiveness to the previous medications. Other demographic and clinical characteristics of the participants are presented in Table 1.

As shown in Figure 1, the participants were mostly from the Zhejiang and Hubei Provinces, followed by the Guangdong and Hunan Provinces. Furthermore, there were participants from Fujian, Jiangxi, Anhui, Guizhou, Qinghai, and Hebei Provinces.

As shown in Table 2, the major information source of UST treatment for CD was from physicians (122, 96.1%), followed by family/friends/ associations of patients (21, 16.5%), internet (13, 10.2%), and books or television (5,3.9%). Except for mere sex differences for source from physicians (100% versus 93.2%; p = 0.0497), no significant difference was observed among other information sources. In addition, a similar pattern was found between different age subgroups at diagnosis when comparing the sources of information.

Table 3 displays the choice strategy for UST among the different sex and age subgroups. Nearly half of the patients (57, 44.9%) reported a shared decision making regarding UST treatment, followed by 49 (38.6%), self-decision with explanations from physicians. No differences were found in the decision-making patterns in terms of sex and age. Considering the pandemic situation (COVID) during the study period, we further analyzed whether there were differences between patients from Hubei Province and other provinces in the aspect of strategy for UST drug choice. As shown in Supplementary Table S2, no significant difference was found in strategies on ustekinumab drug choice between patients from Hubei Province and other provinces.

As shown in Figure 2, UST (98%) was the major candidate option for CD treatment. Other candidate drugs included vedolizumab (21%), adalimumab (20%), IFX (16%), immunosuppressants (11%), and corticosteroids (8%).

To investigate the various reasons for choosing UST as treatment medication among the Chinese population, we designed multiple choice answers not only in terms of efficacy and safety but also in terms of frequency of administration, mode of administration, interference with everyday life, fast to respond, and time of administration, which had been scarcely detected in previous studies. Efficacy (77%) and safety (65%), frequency of administration (39%), mode of administration (intravenous or subcutaneous) (37%), and decreased interference with everyday life (32%) were the most common options for choosing UST. Unusual reasons included “fast to respond” (27%), “time of administration” (19%), “self-care” (13%), and “place of administration” (9%), as shown in Figure 3. In addition, we also analyzed whether there were differences between patients from Hubei Province and other provinces in reasons for UST preference. As shown in Supplementary Table S3, despite a slightly higher rate of frequency of administration observed in patients from Hubei Province (p = 0.007), no significant difference was found in other reasons for UST preference between patients from Hubei Province and other provinces.

Next, we investigated the possible demographic characteristics contributing to the preference for UST with frequency of administration, mode of administration, and interference with everyday life, separately.

In the first subgroup analysis, patients were divided according to different preferences regarding the frequency of UST administration. Table 4 shows that self-rate health was significantly different (p = 0.013) among patients who chose UST for treatment, regardless of the reason for low-frequency administration. Other factors found to be associated with the UST preference, with a low frequency of administration in the univariate analysis, were the age at diagnosis (p = 0.091) and employment status (p = 0.105). In the multivariate analysis, a positive self-rated health status (fair, p = 0.044; good, p = 0.004; and very good, p = 0.007) was a contributing factor for UST preference with a low frequency of administration, as shown in Table 5.

In the second subgroup analysis, patients were divided according to different preferences for the mode of UST administration. History of hormone therapy (p = 0.013), history of biologic agent therapy (p = 0.040), and other reasons for recent drug withdrawal (p = 0.025) showed differences in the univariate analysis. Similar results revealed that self-rate health was a contributing factor for UST preference due to convenient administration both in the univariate analysis (p = 0.010) and multivariate analysis (very good, p = 0.008), as shown in Tables 6 and 7.

When analyzed separately according to different preferences toward the impact of UST administration on everyday life, self-rate health was still significantly different (p = 0.008) between the two groups, regardless of whether they had a low impact on everyday life. Other factors found to be associated with impact preference in the univariate analysis were a history of hormone therapy (p = 0.067) and economic reasons for recent drug withdrawal (p = 0.050) (Table 8). Furthermore, a fitful multivariate logistic model was selected to explore potential factors that were relevant to the impact preference for choosing UST. In line with this, patients with a positive self-rated health status (good, p = 0.020; very good, p = 0.008) were correlated with a higher possibility of UST preference with a low interference in everyday life, as shown in Table 9.