Patient Demographics and Clinical Characteristics at Study Inclusion

A total of 706 patients with IBD (CD, n = 353; UC, n = 353) completed the survey, including 102 from Argentina, 200 from Australia, 200 from Brazil, 102 from Saudi Arabia and 102 from Taiwan (Fig. S2; Table 1). In patients with CD and UC, respectively, mean ± SD ages were 36.8 ± 9.9 and 37.7 ± 10.2 years; 47.9% and 47.6% were female; and mean ± SD disease durations were 4.5 ± 6.0 and 4.6 ± 6.7 years. Most patients CD and UC lived between 10 and 50 km (45.3% and 49.6%) or < 10 km (34.8% and 34.6%) from their place of care, respectively, with a smaller percentage living > 100 km away (2.3% and 2.0%). The most common healthcare settings to receive treatment for patients with CD and UC were IBD centres (92.6% and 92.9%), general hospitals (40.5% and 39.1%) and local hospitals (27.5% and 24.4%). Most patients with CD and UC were either publicly (49.6% and 49.0%) or privately (62.9% and 60.9%) insured. Furthermore, 17.8% of patients with CD and 13.9% with UC reported having undergone post-surgical procedures, such as pouch creation or stoma (Table 1).

Table 1 Patient demographics and clinical characteristics at study inclusion

The most common current treatments for patients with CD and UC, respectively, were corticosteroids (74.2% and 74.8%), advanced therapies plus immunomodulators (46.7% and 42.2%) and aminosalicylates (39.1% and 49.6%). Among patients with CD, 36.3% were treatment-naïve to advanced therapies, while 58.1% were previously exposed. Among patients with UC, 36.5% were treatment-naïve to advanced therapies, while 56.1% were previously exposed. A total of 51.3% of patients with CD and 55.5% of those with UC had been receiving treatment for ≥ 1 year. Overall, 2.3% and 2.8% of patients with CD and UC, respectively, were currently receiving only advanced therapies, whereas 9.3% and 5.9%, respectively, were receiving only immunomodulators (Table 1).

Overall, in the past > 1 week, the mean ± SD self-reported symptom severity was graded at 6.3 ± 1.9 for patients with CD and 6.0 ± 2.1 for patients with UC (0, no symptoms; 10, very severe symptoms; Table 1). Around the survey completion time, only a small proportion of patients reported their general well-being as excellent (CD 5.9%; UC 8.5%), with most patients evaluating their well-being as good/fair (CD 78.8%; UC 72.8%). For both conditions, less than one in five patients evaluated their general well-being levels as poor/very poor (CD 15.3%; UC 18.7%; Table 1). Among the CD population, 43.0% of advanced therapy-naïve patients reported good well-being, compared with 33.7% of patients exposed to advanced therapies (Fig. S3). An opposite trend was observed in the UC population (Fig. S3). Patients with CD (35.4%) and those with UC (36.8%) ranked ‘side effects’ as the most common reason for switching treatments (Table 1).

Primary Outcome Analysis: Patient Preferences for Advanced Treatment Attributes

For patients with CD, the rate of long-term remission on maintenance therapy (LTREM) was the most important attribute for treatment choice (32.5%), followed by rate of 1-year remission (REM; 25.7%), RoA (24.6%) and risk of serious adverse events (SAEs; 11.5%) and mild adverse events (AEs; 5.8%; Fig. 1a). For patients with UC, rate of corticosteroid-free remission after 1-year (CREM) was the most important attribute (30.8%), followed by RoA (27.4%), rate of mucosal healing after 1 year (MH; 16.1%), rate of LTREM (14.9%) and risk of SAEs (10.0%) and mild AEs (0.8%; Fig. 1b). The country-wise representation of patient preferences for advanced treatment attributes is also shown in Fig. 1.

Fig. 1

Primary outcome analysis: patient preferences for treatment attributes. a CD, b UC. There was sufficient power to estimate partworth utilities with accurate precision for Australia and Brazil. For the remaining countries, attribute importance was calculated at a lower model estimation accuracy. As a result of rounding, percentages may not sum to 100%. AE, adverse event; CD, Crohn’s disease; MT, maintenance therapy; RoA, route of administration; SAE, serious adverse event; UC, ulcerative colitis

Patient Preferences for RoAs

Figure 2 shows patient preferences for RoAs including country-wise preferences. Compared with IV administration every 4–8 weeks, patients with CD preferred SC administration every 1–2 weeks (OR 1.41, 95% confidence interval [CI] 1.27–1.56, p < 0.001) or every 4–12 weeks (OR 1.22, 95% CI 1.08–1.39, p = 0.002) (Fig. 2a). Compared with IV administration every 4–8 weeks, patients with UC preferred SC administration every 1–2 weeks (OR 1.20, 95% CI 1.07–1.35, p = 0.002) or every 4–12 weeks (OR 1.30, 95% CI 1.14–1.48, p < 0.001) or oral RoA (OR 1.41, 95% CI 1.25–1.59, p < 0.001; Fig. 2b).

Fig. 2

Patient preferences for RoA of MT. a CD, b UC. This study was not designed for statistical hypothesis testing. Therefore, p values and 95% CIs are for descriptive purposes only and should be interpreted with caution. CD, Crohn’s disease; CI, confidence interval; IV, intravenous; MT, maintenance therapy; OR, odds ratio; RoA, route of administration; SC, subcutaneous; UC, ulcerative colitis

Patient Preferences for Levels of Advanced Treatment Attributes

When asked to choose between levels of treatment attributes, patients with CD preferred a higher REM (51% vs 7%: OR 1.43, 95% CI 1.27–1.60, p < 0.001; 32% vs 7%: OR 1.13, 95% CI 1.01–1.26, p = 0.030) and lower occurrence of SAEs (25% vs 9%: OR 0.85, 95% CI 0.78–0.93, p < 0.001) (Fig. 3a). Moreover, patients with UC preferred a higher CREM (45% vs 6%: OR 1.47, 95% CI 1.34–1.61, p < 0.001; 14% vs 6%: OR 1.20, 95% CI 1.08–1.34, p = 0.001), higher rate of LTREM (95% vs 72%: OR 1.20, 95% CI 1.09–1.33, p < 0.001; 85% vs 72%: OR 1.08, 95% CI 0.98–1.19, p = 0.133), higher probability of MH (31% vs 13%: OR 1.20, 95% CI 1.09–1.32, p < 0.001; 55% vs 13%: OR 1.22, 95% CI 1.11–1.34, p < 0.001) and lower incidence of SAEs (23% vs 5%: OR 0.88, 95% CI 0.82–0.94, p < 0.001) (Fig. 3b).

Fig. 3

Patient preferences for treatment attribute levels. a CD, b UC. This study was not designed for statistical hypothesis testing; therefore, p values and 95% CIs should be interpreted with caution. Attribute reference levels for CD: AEs 59%, LTREM 69%, REM 7% and RoA IV 4–8 weeks and SAE 9%. Attribute reference levels for UC: AE 49%, CREM 6%, LTREM 72%, MH 13%; RoA IV 4–8 weeks and SAE 5%. AE, adverse event; CREM, Corticosteroid-free remission after 1 year; LTREM, long-term remission on maintenance therapy; MH, healing of the lining of the bowel (intestinal mucosa) after 1 year; OR, odds ratio; REM, 1-year remission; RoA, route of administration; SAE, serious adverse event; SC (1/2), subcutaneous 1–2 weeks vs intravenous 4–8 weeks; SC (4/12) subcutaneous 4–12 weeks vs intravenous 4–8 weeks; Tab, tablet vs intravenous 4–8 weeks

Subgroup Analysis: Attribute Preferences Based on Exposure to Advanced Therapies

For advanced therapy-naïve patients with CD, RoA (28.5%) was the most preferred treatment attribute followed by the rates of LTREM (27.4%) and REM (22.3%; Fig. 4a) while for patients with CD who were exposed to advanced therapies, the most preferred treatment attribute was LTREM (37.5%) followed by rate of REM (28.1%) and RoA (19.8%; Fig. 4a).

Fig. 4

Subgroup analysis of patient preferences for treatment attributes based on exposure to advanced therapies. a CD, b UC. As a result of rounding, percentages may not sum to 100%. AE, adverse event; CD, Crohn’s disease; MT, maintenance therapy; RoA, route of administration; UC, ulcerative colitis

Most advanced therapy-naïve patients with UC preferred RoA (26.8%) followed by rate of CREM (23.3%) and rate of LTREM (16.0%; Fig. 4b), while most patients with UC who were exposed to advanced therapies ranked rate of CREM (33.6%) as the most important attribute followed by RoA (21.4%) and rate of MH (15.8%; Fig. 4b).

Timing Preferences for Starting Advanced Therapy

Figure 5 shows timing preferences for starting advanced therapy including country-wise representation. Overall, approximately half of the patients (CD 49.3%; UC 50.5%) exposed to advanced therapy indicated that they would have preferred to start advanced therapy earlier.

Fig. 5

Patient preferences for timing of initiation of advanced therapy. a CD, b UC. aNone of the patients with CD in Saudi Arabia had experience of using advanced therapies. bIn the CD cohort, one patient in Argentina was reclassified as ‘exposed to advanced therapy’ during the post-collection QC phase, based on their open-field answers to Q26 and Q27. However, because they did not select an advanced therapy option during data collection, Q29 was not displayed to them. Therefore, Q29 has one missing value in the Argentina and all country groups, equating to 2.0% and 0.3%, respectively. CD, Crohn’s disease; QC, quality control; UC, ulcerative colitis

Symptom Impact on QoL

Patients with CD ranked abdominal pain (median [interquartile range (IQR)] 2.0 [1.0, 3.0]) as the symptom most impacting their QoL followed by bowel urgency (3.0 [2.0, 4.0]), stool frequency (3.0 [2.0, 5.0]), fatigue (3.0 [2.0, 5.0]), flatulence (3.0 [2.0, 6.0]) and rectal bleeding (3.0 [2.0, 6.2]; Fig. S4A). Patients with UC ranked abdominal pain (median [IQR] 2.0 [1.0, 3.0]) and bowel urgency (2.0 [2.0, 4.0]) as the symptoms most impacting their QoL, followed by stool frequency and rectal bleeding (both 3.0 [2.0, 5.0]) and fatigue (3.0 [2.0, 6.0]; Fig. S4B).

Aspects of Daily Life Most Impacted by Disease

Patients with CD ranked general well-being (median [IQR] 3.0 [2.0, 4.0]) and work/school productivity, energy status, daily activities and emotional well-being (all 3.0 [2.0, 5.0]) as the aspects of daily life most impacted by the disease (Fig. S5A). Patients with UC ranked emotional well-being (median [IQR] 2.0 [2.0, 4.0]) as the aspect of daily life most impacted by the disease, followed by general well-being, social activities, energy status and daily activities (all 3.0 [2.0, 5.0]; Fig. S5B).

Aspects of Daily Life Patients Most Wanted to Improve Through Treatment

Patients with CD ranked general well-being (median [IQR] 2.0 [1.0, 4.0]) and patients with UC ranked emotional well-being (median [IQR] 3.0 [2.0, 4.0]) as the aspects of daily life they most wanted to improve through treatment (Table 2).

Table 2 Ranking of the aspects of daily life that patients wanted to improve through treatmentPatient’s Perception of Physician’s Treatment Goals

Most patients with CD and UC perceived that their physicians’ treatment goals were symptom improvement (both CD and UC 79.9%), followed by improvement in QoL (CD 70.3%; UC 71.7%), prevention of complications (CD 53.5%; UC 51.3%) and prevention of disease progression (CD 52.1%; UC 51.6%; Fig. S6A).

Discussion of Medication Choices with Caregivers

A caregiver was defined as a family member or paid helper who regularly helped the patient to live their life. Overall, 74.8% and 74.5% of patients with CD and UC, respectively, indicated that they had regular discussions with their caregivers, whereas 15.0% and 11.9%, respectively, responded that they did not have regular discussions with their caregivers but that they would like to (Fig. S6B).