Introduction

As a chronic disease, patients’ perspectives of the quality of care (QoC) provided are increasingly recognized as an essential aspect of inflammatory bowel disease (IBD) management and an essential standard for units that manage patients with IBD¹.

Aims & Methods

Aims:
- Primary: Translation and validation of the Portuguese version of the IQCARO-QoC decalogue².
- Secondary: identify factors associated with a perception of better QoC.
Methods: A unicentric cross-sectional study was conducted in an IBD unit in a non-tertiary hospital. All consecutively evaluated IBD patients in the outpatient setting between january and december 2023 were included. Demographic and disease characteristics were collected.
The original version of IQCARO-QoC decalogue was translated and adapted into Portuguese (independent forward and back-translation).
Validity was assessed through correlation between IQCARO-QoC and visual analogue scale (VAS). Fiability was assessed through internal consistency, test-retest and intraclass correlation. Test–retest (4-week repeat) was used for measuring reliability.
Factors associated with QoC were analyzed.

Results

A total of 114 patients were included (51% female; mean age: 44±15years), of whom 63% had Crohn’s disease. 69% of patients were receiving biological therapy. Among the patients, 24% were solely in clinical remission and 48% in both clinical and endoscopic remission. 31 patients (27%) perceived their disease to be in remission.
The mean IQCARO score was 9.3±1.9. Construct validity analyses demonstrated moderate-to-strong correlations between the IQCARO-QoC and VAS. The IQCARO-QoC exhibited high internal consistency (Cronbach’s α = 0.703) and intraclass correlation (intraclass correlation coefficient = 0.622).
In univariate analysis, concerning patients' self-assessment of disease activity, those who considered their disease to be in remission reported higher IQCARO scores (p=0.02). Individuals with higher educational levels tended to perceive higher QoC (p=0.037). Disease duration, previous surgeries, hospitalizations, and number of outpatient appointments did not exhibit a statistically significant impact on QoC perception. Regarding quality of life, as assessed by the SIBDQ³ with a mean score of 50.7±12.1, a statistically significant positive correlation was observed between QoC and the SIBDQ (r=0.276, p=0.004).
Multivariate analysis revealed that education significantly influenced the perception of QoC provided (β = -0.284 [-1.490; -0.340], p=0.002).

Conclusion

The Portuguese version of the IQCARO-QoC is a simple, valid, and reliable tool for assessing the QoC perception among patients with IBD in clinical practice. Furthermore, these observational data suggest an association between patients' perspectives of QoC and their evaluations of disease activity and quality of life. In our cohort, education emerged as an independent predictor influencing the perception of QoC received.

References

1 - Fiorino G, et al. Quality of Care Standards in IBD: a ECCO Position Paper. J Crohns Colitis. 2020 Sep 7; 14(8):1037-1048.
2 - Calvet X, Saldaña R, Carpio D, Mínguez M, Vera I, Juliá B, Marín L, Casellas F. Improving Quality of Care in Inflammatory Bowel Disease Through Patients' Eyes: IQCARO Project. Inflamm Bowel Dis. 2020 Apr 11;26(5):782-791.
3 - Roseira J, Sousa HT, Marreiros A, Contente LF, Magro F. Short Inflammatory Bowel Disease Questionnaire: translation and validation to the Portuguese language. Health Qual Life Outcomes. 2021 Feb 18;19(1):59.

Introduction

​​​​​As a chronic disease, patients’ perspectives on their disease status and quality of life is an essential part of inflammatory bowel disease (IBD) management¹. Patient-reported outcomes should be the standard of measure for signs and symptoms evaluation².

Aims & Methods

We aimed to evaluate the correlation between patients’ self-assessment of disease activity, activity scores and the physician’s global assessment.
A unicentric cross-sectional study was conducted. The Short Inflammatory Bowel Disease Questionnaire (SIBDQ)³ was administered to consecutively evaluated IBD patients in the outpatient setting. Additionally, a pilot questionnaire addressing perceived disease activity was completed by both patients and their attending physician.
Disease activity was categorized as remission, mild, moderate, or severe. Remission was defined as Harvey Bradshaw Index (HBI) ≤ 4 for Crohn's disease or Mayo Clinic Subscore (MCS) ≤ 2 for ulcerative colitis.
Spearman’s rank correlation coefficient was used to assess correlations between patient-reported disease activity, physician global assessment, disease activity scores, and quality of life.

Results

A total of 105 patients were included (female: 52%; mean age: 44±15 years), of whom 68% had Crohn's disease. 71% percent of patients were receiving advanced therapy (table 1).
A quarter of the patients (27%, n=28) perceived their disease to be in remission, of whom 56% were indeed in deep remission and 19% in endoscopic remission (table 1). A statistically significant positive correlation was observed between patient self-assessment and HBI scores (mean=2.5±6.5 points, r=0.400, p=0.001) and MCS scores (mean=3.4±4.0 points, r=0.574, p<0.001).
Among patients who did not consider themselves in remission, 42% rated the activity of their disease as mild, 23% as moderate, and 9% as severe. The attending physician assessed 26% with mild disease, 22% with moderate disease, and 18% with severe disease (table 1). There was a statistically significant positive correlation between patient and physician assessments (r=0.374; p<0.001).
The mean SIBDQ score was 50.7 ± 12.1 points (table 1), and a statistically significant negative correlation was found between patient self-assessment of disease activity and the SIBDQ (r=-0.417, p<0.001).

Conclusion

These observational data suggest a weak correlation between patient-reported disease activity and the physician’s global assessment. Divergent perceptions of disease activity between patients and physicians may compromise patient-engagement. Furthermore, the moderate correlation observed with overall quality of life supports the importance of alignment patients and physicians to improve the quality of care provided.

References

1 - Fiorino G et al. Quality of Care Standards in Inflammatory Bowel Diseases: a European Crohn's and Colitis Organisation [ECCO] Position Paper. J Crohns Colitis. 2020 Sep 7;14(8):1037-1048. doi: 10.1093/ecco-jcc/jjaa023.
2 - Turner D et al. International Organization for the Study of IBD. STRIDE-II: An Update on the Selecting Therapeutic Targets in Inflammatory Bowel Disease (STRIDE) Initiative of the International Organization for the Study of IBD (IOIBD): Determining Therapeutic Goals for Treat-to-Target strategies in IBD. Gastroenterology. 2021 Apr;160(5):1570-1583. doi: 10.1053/j.gastro.2020.12.031.
3 - Roseira J et al. Short Inflammatory Bowel Disease Questionnaire: translation and validation to the Portuguese language. Health Qual Life Outcomes. 2021 Feb 18;19(1):59. doi: 10.1186/s12955-021-01698-9.

Introduction

Therapeutic goals in inflammatory bowel diseases (IBD) have undergone considerable change in recent years, with a shift of focus from simply achieving clinical remission. Patient-related outcomes (PROs) have also become increasingly important as adjunctive tools in assessing the efficacy of medical therapy from the patients’ standpoint. Health-related quality of life (HRQoL) questionnaires, correlate well with disease activity and can detect meaningful clinical changes in IBD patients who either suffer a relapse of disease or achieve remission [1,2].

Aims & Methods

We aimed to assess the utility of SIBDQ in the long-term follow-up of IBD patients compared to the conventionally used markers such as clinical indices, CRP levels and endoscopic activity scores. Patients were scheduled for evaluation every 12 months, but additional evaluations were performed as required in case of worsening clinical condition. The main data collected at each study visit included clinical aspects (disease activity, on-going medication, quality of life assessement-The Short Inflammatory Bowel Disease Questionnaire), endoscopic and histological findings.

Results

In a prospective setting, 176 patients were included in the study (65 Crohn’s and 111 UC patients) , with a mean follow-up time of 16 months and 1.3 study visits per patient. Clinical activity was associated with significantly lower SIBDQ (median 4.3 vs 5.7 in those without clinical activity, p<0.001 mann whitney u) and increased inflammatory burden ( median CRP levels 1,99 mg/L vs. 7.2mg/L, p<0.001 mann whitney u). SIBDQ scores were also significantly higher in patients showing mucosal healing compared to those with active ongoing inflammation (5.8 vs 4.9, p<0.001 MWU), while inflammatory burden was also significantly different between patients with and without ongoing mucosal activity (1.6 mg/L vs 4.2 mg/L, p< 0.001 MWU). SIBDQ significantly improved over time, with a median of 4.7, 5.4 and 5.8 at visits 1, 2 and 3 respectively (p<0.001 MWU), which was also consistent with a decrease in the overall inflammatory burden in the cohort (median CRP levels of 4.2, 3.4 and 2.5 mg/L respectively).

Conclusion

Clinical activity is associated with significantly lower quality of life and increased inflammatory burden. QoL scores are significantly higher in patients showing mucosal healing compared to those with active ongoing inflammation.

References

[1] Jowett SL, Seal CJ, Barton JR, Welfare MR. The short inflammatory bowel disease questionnaire is reliable and responsive to clinically important change in ulcerative colitis. Am J Gastroenterol. 2001 Oct;96(10):2921-8.
[2] Irvine EJ^​, Zhou Q, Thompson AK.The Short Inflammatory Bowel Disease Questionnaire: a quality of life instrument for community physicians managing inflammatory bowel disease. CCRPT Investigators. Canadian Crohn's Relapse Prevention Trial. Am J Gastroenterol. 1996 Aug;91(8):1571-8.

Introduction

Fatigue is a common but rarely diagnosed symptom in patients with inflammatory bowel disease (IBD). The IBD-specific fatigue questionnaire Inflammatory Bowel Disease Fatigue (IBD-F) was validated in German in 2022. It assesses the severity and frequency of fatigue (Section 1) as well as its impact on daily life (Section 2). The Functional Assessment of Chronic Illness Therapy–Fatigue (FACIT-F) also measures the impact of fatigue on daily life. While the FACIT-F has been validated in English for IBD, it has not yet been validated in German, although it is frequently used in IBD studies.

Aims & Methods

This study compared the IBD-F and FACIT-F in a German-speaking IBD cohort. IBD patients and a healthy control group (HC) completed both the IBD-F and FACIT-F questionnaires. Disease activity in IBD patients was assessed using the partial Mayo Score (pMS for ulcerative colitis; UC) or the Harvey Bradshaw Severity Index (HBSI for Crohn’s disease; CD). Internal consistency was calculated using Cronbach’s α. To assess acceptance, the number of fully completed questionnaires was analyzed. Spearman correlation was used to compare IBD-F and FACIT-F scores in both IBD patients and healthy controls.

Results

A total of 382 IBD patients (CD n = 240; 98 male; age 43.1 ± 13.9; UC n = 142; 72 male; age 43.2 ± 12.6) and 130 healthy controls (HC; 61 male; age 40.2 ± 16.5) participated. 75% (286/382) of the patients reported fatigue in IBD-F Section 1 and were included in further analyses.
Internal consistency was rated as excellent for IBD-F Section 1 (α = 0.930), Section 2 (α = 0.979), and FACIT-F (α = 0.936), as indicated by Cronbach’s alpha. Acceptance decreased with increasing number of items (IBD-F Section 1 94.4%; Section 2 80.1%; FACIT-F 90.9%). A significant negative correlation was observed between the FACIT-F and IBD-F Section 1 in both the IBD group (r_s = -0.751, p < 0.01) and controls (r_s = -0.361, p < 0.01), as well as between the FACIT-F and IBD-F Section 2 (IBD: r_s = -0.862, p < 0.01; HC: r_s = -0.463, p < 0.01).
Patients in remission (59% (168/286)) reported lower fatigue scores in IBD-F Section 1 and 2 and FACIT-F than patients with active disease (36% (104/286)), but higher fatigue scores than HC. HC showed higher fatigue scores in the FACIT-F than in the IBD-F (see Table 1).

Conclusion

Both the IBD-F and FACIT-F are effective tools for assessing fatigue in IBD patients. The IBD-F, however, appears to better distinguish healthy individuals without fatigue.

Introduction

Intestinal Ultrasound (IUS) is an accurate, non-invasive technique to monitor disease activity and guide treatment decisions in inflammatory bowel disease (IBD). It has gained popularity as a point-of-care (POC) modality due to its tolerability and ease-of-use and reproducibility of results.

Aims & Methods

This study aims to assess the impact of POC IUS in daily clinical management of IBD. We conducted a single-centre retrospective cohort study of IBD patients who were evaluated with POC IUS between September 2022 and March 2023. Ultrasound data were retrieved including ultrasound reports, static images. and cine loop with doppler activity. Clinical data were retrieved from the electronic medical record. Descriptive statistics were used to evaluate characteristics of the study population. Chi-squared tests and logistic regression were used for categorical outcomes.

Results

A total of 210 IUS examinations were included in patients with Crohn’s disease (n=118, 56%), ulcerative colitis (n=90, 43%) and IBD-unclassified (n=2, 1%). The median age was 35.6years and the median disease duration was 7.0years. Fifty percent of IUS (n=105) was performed on asymptomatic patients as part of routine care; twenty-five percent (n=53) was for symptomatic patients; and twenty-three percent (n=49) was a follow-up imaging to assess response to a change in therapy. A change in management following IUS was recorded in 117 cases (55.7%).
For routine examinations (n=105), 22.9% (n=24) were abnormal, seven (7%) were referred for urgent endoscopy, thirty-five cases (33.3%) changed therapy, twenty (19%) initiated new therapy and four (4%) optimised existing therapy. Among symptomatic patients who underwent IUS (n=53), a change of medication was documented in 89% (n=47), endoscopy performed after examinations in 15% (n=8), 23% (n=12) were prescribed laxatives and 2% (n=1) were admitted to hospital.
Abnormal IUS and change in medication following IUS was higher in symptomatic than asymptomatic patients (54.7% vs 23.1%, p<0.001 and 54.7% vs 12.0%, p<0.001, respectively). Faecal calprotectin (n=105) (p=0.03) and magnetic resonance imaging (n=8) (p=0.06) results within a month prior to IUS were directly correlated with bowel wall thickness >3mm on IUS. Nineteen endoscopies were done within 1 month after examinations, which was also positively correlated with IUS result (p=0.01).

Conclusion

Our real-world study showed that POC IUS plays a role in ‘treat-to-target’ strategy in patient-management decisions, especially among symptomatic patients, allowing rapid treatment decisions. In addition to other objective markers of disease, including faecal calprotectin, POC IUS has the potential to reduce the need for more invasive endoscopic assessment of disease activity.

Disclosure

None

Introduction

It has long been hypothesised and increasingly proven that stress (both acute and chronic) can have a significant impact on inflammatory bowel disease (IBD) patient's condition in terms of relapses and worsening disease.1 It is also understood that patients with IBD are at a higher risk of developing depressive disorders than the healthy population. 2 As such ongoing work into the bidirectional gut brain axis and its association with the inflammatory response in the gut is important in understanding how reduction in stress can assist in managing IBD. 3

Aims & Methods

Our study aim was to assess the impact of stress on our IBD patients’ self-reported symptoms, to understand how our IBD patients' managed their stress levels and to assess how their inflammatory bowel disease affects their quality of life.
101 IBD patients attending University Lewisham Hospital completed an anonymous structured paper questionnaire between December 2023 and January 2024. Data was analysed for age, gender, IBD subtype and medications, the impact of stress on their condition, their methods of stress reduction as well as the impact of IBD on their social, work and sexual life.

Results

101 patients completed the survey. 55% were female and the median age was 42 years (IQR 30-58). 45% had ulcerative colitis (UC), 48% had Crohn’s disease (CD) and 8% had IBD-unspecified (IBD-U). 5.6% of patients were not on treatment, 29.7% on mesalazine, 10.9% on azathioprine and 75% were on a biologic therapy.
Of the 101 patients surveyed 76.2% (77/101) felt that stress triggers flares in their condition. 26.7% (27/101) felt that stress directly led to their IBD developing, while 23.8% (24/101) felt it was a contributing factor. 40.6% (41/101)felt that controlling stress was more important than their medications. 62.4% (63/101) employed methods of stress reduction.
The most common methods were: exercise/sports/yoga (41.5%). walking (30.7%), reading (26.7%), socialising (22.8%), alcohol (10.9%) smoking (5.9%) and recreational drugs (3.0%).
32.7% (33/101) felt their condition made them exhausted all of the time. 63.4% (64/101) reported avoiding social events due to their IBD. 48.5% (49/101) reported their condition affected their sex life. 25.6% (26/101) felt their relationship with their partner was affected because of their condition.
Over half of patients surveyed (57.4%, 58/101) felt that their condition affected their mental health, but only 24.8% (25/101) felt they had received sufficient NHS mental health support.
19.8% (20/101) of patients felt their condition had stopped them from getting promoted at work, and 47.5% (48/101) attended work whilst in a disease flare for fear of losing their job. 14.9% (15/101) reported feeling discriminated against because of their condition.

Conclusion

Over three quarters of IBD patients surveyed felt that stress is a significant trigger for flares, however surprisingly over a quarter of IBD patients perceive stress as a direct factor for their disease developing. IBD significantly impacts patients social, work, and sexual life with a significant impact seen on mental health. This survey found that although a good proportion of patients used commonly perceived healthy methods of stress reduction, almost 20% of patients relied on unhealthy methods (smoking, alcohol/recreational drugs). This data presents a clear argument for a holistic approach to IBD patient care and integrating psychological support within an IBD service. Further work should follow on the relationship between patient perceived stress levels and disease outcomes and failed treatments.

References

1) Mikocka-Walus A, Pittet V, Rossel JB, von Känel R; Swiss IBD Cohort Study Group. Symptoms of Depression and Anxiety Are Independently Associated With Clinical Recurrence of Inflammatory Bowel Disease. Clin Gastroenterol Hepatol. 2016 Jun;14(6):829-835
2) Sun Y, Li L, Xie R, Wang B, Jiang K, Cao H. Stress Triggers Flare of Inflammatory Bowel Disease in Children and Adults. Front Pediatr. 2019 Oct 24;7:432.
3) Ge L, Liu S, Li S, Yang J, Hu G, Xu C, Song W. Psychological stress in inflammatory bowel disease: Psychoneuroimmunological insights into bidirectional gut-brain communications. Front Immunol. 2022 Oct 6;13:1016578

Disclosure

Nothi

Introduction

Disease-specific knowledge plays a central role in chronic disease management. In patients with inflammatory bowel disease (IBD), limited knowledge is linked to poorer perceived health and increased discomfort (1).

Aims & Methods

This study assessed disease-specific knowledge among adult patients with IBD at a tertiary center and defined existing knowledge gaps. Factors associated with higher or lower levels of knowledge were explored.
The retrospective cohort study included 392 IBD patients who completed a comprehensive questionnaire between March 2020 and April 2021 (2). Questionnaire responses were analyzed alongside clinical records to quantify disease-specific knowledge. A scoring system was developed to quantify disease-specific knowledge (0–8 points), based on correct diagnosis, Montreal classification, complications, and current therapies. Scores were categorized as low (0–5) or high (6–8) knowledge levels. Associations between knowledge levels and disease-related, sociodemographic, and psychosocial factors were analyzed using logistic regression analysis.

Results

While most patients correctly identified their diagnosis (kappa: 0.863, CI: 0.816–0.905, p < 0.001) and advanced treatment (e.g. infliximab: kappa: 0.959, CI: 0.925–0.983, p < 0.001), knowledge gaps were observed regarding disease location (e.g. isolated proctitis in ulcerative colitis: kappa: 0.101, CI: –0.051–0.341, p = 0.128), complications, comorbidities, and certain other medications. In the univariate analysis a higher knowledge level was found in patients with Crohn’s disease, younger age at diagnosis, in patients with no disease activity, and treatment with biologics, in those receiving disability pension and in patients with a high Perceived Stress Questionnaire (PSQ) score for worries (table). A younger age at diagnosis (p = 0.028) and having Crohn’s disease (p < 0.001) were independently associated with higher knowledge levels whereas active disease was associated with lower disease-specific knowledge.
Table:
Univariate logistic regression analysis for items significantly associated with higher knowledge levels

Conclusion

Significant disease-specific knowledge gaps were identified, particularly concerning disease location, complications, and comorbidities. Targeted patient education should focus on addressing these specific deficits in susceptible groups.

References

1. Tormey LK, Reich J, Chen YS, Singh A, Lipkin-Moore Z, Yu A, et al. Limited Health Literacy Is Associated With Worse Patient-Reported Outcomes in Inflammatory Bowel Disease. Inflamm Bowel Dis. 2019;25:204–12.
2. Koletzko L, Klucker E, Le Thi TG, Breiteneicher S, Rubio-Acero R, Neuhaus L, et al. Following Pediatric and Adult IBD Patients through the COVID-19 Pandemic: Changes in Psychosocial Burden and Perception of Infection Risk and Harm over Time. J Clin Med. 2021;10:4124.