scholarly journals HealthPROMISE: Utilization of Patient Reported Outcomes to Measure Quality of Life in Inflammatory Bowel Disease

Iproceedings ◽  
2017 ◽  
Vol 3 (1) ◽  
pp. e28 ◽  
Author(s):  
Ashish Atreja ◽  
Emamuzo Otobo ◽  
Helena Chang ◽  
Laurie Keefer ◽  
Jason Rogers ◽  
...  
2019 ◽  
Vol 1 (3) ◽  
Author(s):  
Anita Chandrasekaran ◽  
Shauna Groven ◽  
James D Lewis ◽  
Susan S Levy ◽  
Caroline Diamant ◽  
...  

Abstract Background Prior studies suggest dietary modification may improve clinical response or remission rates in patients with inflammatory bowel disease (IBD). Our aim was to examine whether an autoimmune protocol diet improves quality of life in patients with active Crohn disease (CD) and ulcerative colitis (UC). Methods We conducted an uncontrolled clinical trial of the autoimmune protocol diet in adult patients with active IBD (Harvey–Bradshaw Index ≥ 5 for CD or partial Mayo score ≥ 3 for UC, and erosions/ulcers on endoscopy and/or elevated fecal calprotectin). The dietary intervention consisted of a 6-week elimination phase, followed by a 5-week maintenance phase. Short Inflammatory Bowel Disease Questionnaire (SIBDQ) was completed at baseline, and weeks 3, 6, 9, and 11. Results The final cohort included 6 UC and 9 CD participants. Mean SIBDQ score improved significantly from baseline (46.5) to weeks 3 (54.0, P = 0.02), 6 (53.3, P = 0.02), 9 (62.0, P = 0.03), and 11 (60.5, P = 0.05). Among participants completing all 5 surveys, mean SIBDQ increased from 46.5 to 61.5 by week 11 (P = 0.03). By week 3, participants experienced significant improvements in bowel movement frequency (36%, P = 0.04), stress (28%, P = 0.01), and ability to perform leisure/sport activities (29%, P = 0.02). Effects were not significantly different between CD and UC participants. Conclusions Dietary modification can improve quality of life as early as week 3 in patients with active IBD. Larger randomized controlled trials are needed to examine dietary interventions in IBD.


2019 ◽  
Vol 114 (4) ◽  
pp. 640-647 ◽  
Author(s):  
Edward L. Barnes ◽  
Michael D. Kappelman ◽  
Millie D. Long ◽  
Donna M. Evon ◽  
Christopher F. Martin ◽  
...  

2021 ◽  
Vol 15 (Supplement_1) ◽  
pp. S394-S395
Author(s):  
K Risager Christensen ◽  
C Steenholdt ◽  
S Buhl ◽  
M Skougaard ◽  
J Brynskov ◽  
...  

Abstract Background Fatigue is a common reported symptom by patients with inflammatory bowel disease (IBD) and often with profound negative impact on quality of life including daily activities. The aim of this study was to encircle clusters of key components associated with fatigue to explore if fatigue is an independent IBD disease manifestation. Methods A cross-sectional study was conducted in patients with IBD receiving biologic therapies at the tertiary IBD Clinic at Herlev Hospital, Denmark, from March to May 2019. Consecutive patients were asked to participate in a questionnaire survey when visiting the clinic. The questionnaire included: FACIT-Fatigue, Harvey-Bradshaw Index/Simple Clinical Colitis Activity Index, short health scale, short IBD Questionnaire, and EQ-5D-5L. Additional disease-related information was retrieved from medical records. Principal component analysis (PCA) was used to identify factors associated with fatigue. Results Three hundred patients with IBD (Crohn’s disease n=190 (62%); ulcerative colitis n=110 (38%), mean age 44 years, SD 14) treated with biologics were included. The median FACIT F-score was 39 for the population, and scores ≤39 were considered moderate-to-severe fatigue. A high proportion of patients had moderate-to-severe fatigue (n=152 (51%)), these patients had significantly higher clinical disease activity (moderate-to-severe, n=56 (37%); remission, n=47 (31%)), compared to those with none-to-mild fatigue (n=148 (49%)) (moderate-to-severe, n=10 (7%); remission, n=105 (71%)) (p<0.005). Initial correlation analysis showed high clinical association between moderate-to-severe fatigue and patient reported outcomes, notably quality of life (rs=0.78), general well-being (rs=0.67), and disease worry (rs=0.52). The PCA subsequently reduced co-variables associated with fatigue into 3 main components, explaining 37% of fatigue (Figure). The first major component, explaining 15% of total fatigue, included ‘chronic disease related factors’, such as long disease duration, increasing age, previous use of biologics and corticosteroids, and previous surgery. The second component contributed to 13% of fatigue and comprised ‘comorbidity factors’, e.g., other chronic diseases, high body mass index (BMI), and self-reported disease activity. The third major component, explaining 11% of fatigue, comprised ‘disease activity and nutrition factors’ such as of high c-reactive protein, low iron, and low BMI. Conclusion Fatigue in IBD is only to a lesser extent driven by disease activity and nutritional deficits, chronicity, and co-morbidity. This indicates that fatigue is an independent disease manifestation in IBD.


2020 ◽  
Vol 2 (2) ◽  
pp. 123-133
Author(s):  
Huyen Thi Thanh Tran ◽  
Shota Saito ◽  
Shinichi Noto ◽  
Kenji Suzuki

Specific financial assistance for people with rare and intractable diseases is part of Japan’s public health system. This survey aimed to clarify the relationship between eligibility for this specific financial assistance and quality of life (QOL) among individuals with inflammatory bowel disease (IBD) in Japan. A nationwide, web-based survey was conducted in Japan among 300 people with IBD. Questionnaire items covered socioeconomic characteristics and QOL, assessed with the five-dimension, five-level EuroQol (EQ-5D-5L). The percentage of respondents who were ineligible for specific financial assistance was 11.0% among those with Crohn’s disease (CD) and 34.0% among those with ulcerative colitis (UC). For those with CD, the median EQ-5D-5L utility weight did not differ significantly between the non-assistance and assistance groups (p = 0.2222). For those with UC, the median EQ-5D-5L utility weight was significantly higher in the non-assistance group than in the assistance group (p = 0.0034). The present study demonstrated that the revision of the law on intractable and rare diseases has not had a negative influence on the QOL of patients with IBD in Japan. Based on our findings, further research on patient-reported outcomes among individuals with IBD may be necessary to inform health policy makers.


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