Liselot Willemijn Van Erp

Background and Aims: The patient segmentation model based on disease acceptance and perceived control may guide personalized care in inflammatory bowel disease (IBD). We aimed to investigate the external validity of the segmentation model and its consistency over time. Methods: This is a multicenter longitudinal cohort study of adult IBD patients with questionnaires on disease acceptance and perceived control (6-items, 7-point Likert scale) and health-related quality of life (HRQoL) (Short IBD questionnaire, range 10-70). Segments were created based on mean scores (cut-off>5): (I) high acceptance, high control; (II) high acceptance, low control; (III) low acceptance, high control and; (IV) low acceptance, low control. Results: The external validation cohort included 921 IBD patients. The acceptance and control scale were unidimensional and internally consistent. Segments differed significantly in gender, disease duration, IBD medication and clinical disease activity. High acceptance and/or high control were significantly associated with a higher HRQoL compared with low acceptance and low control (i.e., segment IV) (Beta (95%CI) segment I=11.7 (10.4-13.1), segment II=9.3 (7.7-10.9) and segment III=3.8 (1.6-6.0), p≤0.001). The follow-up cohort included 783 patients: 58% remained in the same segment while 42% differed in segment over time. Changes in segment were positively correlated with changes in HRQoL over time (Spearman rho 0.38, p<0.001). Conclusions: The patient segmentation model based on disease acceptance and perceived control was externally valid and showed consistency over time. The different segments were independently associated with HRQoL. Future interventions should aim to personalize care based on segments and improve disease acceptance and perceived control of IBD patients.

Newly diagnosed IBD patients need to deal with the physical and emotional impact of IBD. We aimed to evaluate care for recently diagnosed IBD patients from the patient perspective and assess themes for improvement. A mixed-method study with adult IBD patients 4-15 months after diagnosis was performed. First, relevant themes were identified through semi-structured interviews until data saturation. Next, a questionnaire assessing satisfaction with care (SATI-Q) was developed and validated with 15-items divided in two domains: medical care and information and psychosocial care. Higher scores indicate higher patient satisfaction (0–100). We interviewed 20 patients. Next, 84/107 patients completed the SATI-Q: 51% female, age 37 years [IQR 25–58], 36% Crohn’s disease, disease duration 9 months [IQR 6–12] and 74% in clinical remission. Median SATI-Q score was 82 [IQR 72–92]. Patients were more satisfied with medical care than with information and psychosocial care (score 92 [IQR 81–98] vs. 74 [IQR 60–90], p<0.001). Patients were least satisfied with the attention given to IBD-related emotions and information on IBD-medication, diet and future perspectives (77%, 76%, 57% and 54% of patients satisfied). Patients (81%) preferred spoken information. Only 26-27% preferred brochures and websites. In this study, the SATI-Q questionnaire was developed and validated to assess patient satisfaction with care in early IBD. Our findings suggest that psychosocial care and information on IBD medication, diet influence and future perspectives for recently diagnosed IBD patients require improvement.

Monitoring of IBD patients on intravenous biologic treatment is recommended but time-consuming for patients and nurses. We developed a mobile application (app) to promote self-management and studied its feasibility in clinical practice. Adult IBD patients treated with intravenous infliximab or vedolizumab used the app over four biologic treatments. The app includes information modules and an interactive timeline with notifications of blood tests and health checks before treatment. In total, 55 patients participated of whom 71% had Crohn’s disease and 85% used infliximab. Compliance with health checks and blood tests was 67% before the first biologic treatment and 70, 87, and 80% before the second, third, and fourth treatment, respectively. The median number of times the app was used per treatment varied from 6 to 8 times (≥4 considered sufficient). Patients were satisfied with the app [median VAS score 8 (IQR 7–9)] and remained equally satisfied with IBD care [score 8 (IQR 8–9) before and after app use]. Nurses contacted all patients by telephone before the first biologic treatment, as previous standard care. Before the second, third, and fourth treatment only 47, 35, and 49% of patients were contacted. The majority (92%) wanted to continue using the app after the study. Monitoring of IBD patients treated with intravenous biologics using an app is feasible. We saw high compliance, sufficient app use, and high patient satisfaction. Moreover, health-care utilization was reduced and almost all patients preferred using the app over previous standard care (ClinicalTrials.gov NCT04254614).

Segmentation of patients based on psychological determinants of subjective health may allow new ways to personalized care. The cross-disease segmentation model developed by Bloem & Stalpers discriminates patients based on disease acceptance and perceived control. We aimed to validate the segmentation model, compare segments and evaluate whether segments independently correlate with quality of life in IBD. A cross-sectional study of adult IBD patients was performed with questionnaires on quality of life (32-item IBDQ), acceptance and perceived control (6-items with 7-point Likert scale). Four segments were formed (cut-off>5): (I) high acceptance, high control; (II) high acceptance, low control (III); low acceptance, high control and; (IV) low acceptance, low control. We included 686 patients. The acceptance and perceived control scale were unidimensional structured and internally consistent. Segments differed significantly in age, smoking behaviour, diagnosis, disease duration, extra-intestinal manifestations, IBD-medication, clinical disease activity and quality of life. High acceptance (ß .25, p2 20%, p<0.001). The segmentation model based on disease acceptance and perceived control is valid in IBD patients and discriminates different segments that correlate independently with quality of life. This may open new strategies for patient care.

PNAd and MAdCAM-1 addressins on venules are of importance in T-cell homing and potential therapeutic targets in ulcerative colitis (UC). Normally, PNAd⁺ high endothelial venules (HEVs) are only present in lymphoid organs, whereas small numbers of MAdCAM-1⁺ venules can be seen in non-lymphoid tissue. We aimed to study their presence in the intestinal mucosa of UC patients at diagnosis and during follow-up, and their correlation with disease activity. Colonic biopsy specimens of 378 UC patients were analyzed by immunohistochemistry for CD3, CD20, ERG, MECA-79 (PNAd) and MECA-376 (MAdCAM-1) and compared to healthy controls (HC). The proportion of PNAd⁺HEVs in UC at diagnosis was 4.9% (IQR 2.0%–8.3%), while none were detected in HC. During follow-up, PNAd⁺HEVs completely disappeared in remission (n = 93), whereas the proportion in active disease was similar to baseline (n = 285, p = 0.39). The proportion of MAdCAM-1⁺venules in UC at baseline was 5.8% (IQR 2.6–10.0). During follow-up, the proportion in remission was comparable to diagnosis, but upregulated (7.5% (IQR 4.4–10.9), p = 0.001) in active disease. In conclusion, PNAd⁺HEVs appear in UC during active inflammation which could thus serve as a marker for disease activity, whereas MAdCAM-1⁺venules remain present after inflammation is resolved and increase after subsequent flares, reflecting chronicity and potentially serving as a therapeutic target.

Background and Aims Fatigue significantly impacts the quality of life of patients with inflammatory bowel disease (IBD). This study aimed to assess the effect of a personalized, intensive exercise program on fatigue, health-related quality of life (HRQoL), and cardiorespiratory fitness in patients with quiescent IBD and severe fatigue. Methods A pilot study was performed including IBD patients in remission with severe fatigue. The 12-week exercise program consisted of three times per week 1-h sessions, including aerobic- and progressive-resistance training at personalized intensity based on a cardiopulmonary exercise test (CPET) and one-repetition maximum. CPET was repeated after 12 weeks. Fatigue and HRQoL were assessed using the checklist individual strength and 32-item IBD questionnaire. Results Twenty-five IBD patients with mean age of 45 (± 2.6) years were included of which 22 (88%) completed the exercise program. Fatigue significantly improved from 105 (± 17) points on the checklist individual strength before, to 66 (± 20) after completion of exercise program (p < 0.001). Patients’ HRQoL significantly improved from 156 (± 21) to 176 (± 19) (p < 0.001). When looking at the subdomains of HRQoL, significant improvement was seen in emotional (58 ± 12 vs. 69 ± 9.1, p = 0.003), systemic (19 ± 3.9 vs. 24 ± 4.7, p < 0.001), and social function (25 ± 5.4 vs. 30 ± 3.9, p < 0.001). Bowel symptoms did not change (53 ± 7.7 vs. 55 ± 7.3, p = 0.208). Repeat CPET showed a significant improvement in maximum power patients were able to deliver (2.4 ± 0.5 vs. 2.7 ± 0.5 W/kg, p = 0.002). Conclusions A personalized, intensive exercise program can lead to significant improvement of fatigue, HRQoL, and cardiorespiratory fitness in patients with quiescent IBD and severe fatigue.

Background & Aims: Primary sclerosing cholangitis (PSC) is associated with an increased risk of gallbladder cancer (GBC). Gallbladder polyps potentially harbour malignancy and thus international guidelines recommend prophylactic cholecystectomy for gallbladder polyps of any size in patients with PSC. To best inform patient care we sought to quantify the malignant risk of gallbladder polyps in patients with PSC.Methods: A retrospective cohort study of patients followed in secondary and tertiary care settings in two large PSC clinics in North America was performed.Results: In total, 453 patients were included with a median (IQR) follow‐up time of 7.7 (4.1‐12) years. A gallbladder polyp was radiographically detected in 16% (n = 71) with median size (range) of 4 (2‐18) mm. In this group, post‐cholecystectomy histology (n = 17) reported benign or no polyp in 77% (n = 13), dysplasia in 5.9% (n = 1) and malignancy in 18% (n = 3). The GBC rate was 8.8 (95% CI 1.8‐25.7) per 1000 person‐years in patients with a radiographically detected gallbladder polyp. GBC was associated with polyps >10 mm, interval growth or mass‐like lesions on pre‐operative imaging. In patients who did not have cholecystectomy (n = 50), the polyp was only transiently seen in 80% (n = 40), remained stable or decreased in size in 10% (n = 5) and increased in size in 6% (n = 3). The majority of gallbladder polyps did not show significant growth over time (0.041 mm/year [95% CI −0.017 to 0.249]).Conclusions: Most gallbladder polyps in patients with PSC are benign. Short‐term surveillance imaging may be considered prior to recommending immediate cholecystectomy in patients with PSC without high‐risk imaging features.