scholarly journals Tu1707 – Patient Reported Measures of Health Status Overestimate Differences in Quality of Life in Pediatric Crohn's Disease

2019 ◽  
Vol 156 (6) ◽  
pp. S-1093
Author(s):  
Jacob A. Kurowski ◽  
Keyonna Smith ◽  
Janine Bauman ◽  
Xinge Ji ◽  
David Sugano ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Crohn’S Disease ◽  
Health Status ◽  
Crohn's Disease ◽  
Patient Reported ◽  
Patient Reported Measures

scholarly journals P639 Epidemiology and patient burden of rectovaginal and anovaginal fistulas in patients with Crohn’s disease: A systematic review

2021 ◽  
Vol 15 (Supplement_1) ◽  
pp. S573-S574
Author(s):  
K Iglay ◽  
D Bennett ◽  
M Kappelman ◽  
S Thai ◽  
M Aldridge ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Crohn’S Disease ◽  
Crohn's Disease ◽  
Observational Studies ◽  
Risk Of Bias ◽  
Recurrence Rates ◽  
Eligibility Criteria ◽  
Patient Reported ◽  
Related Quality

Abstract Background Rectovaginal fistulas (RVF) and anovaginal fistulas (AVF) in Crohn’s disease (CD) are rare, debilitating conditions that present substantial disease and treatment burdens for women. In this systematic literature review (SLR), articles relating to the epidemiology and burden of CD-related RVF and AVF were assessed in order to summarize evidence from observational studies and highlight knowledge gaps. Methods Articles published in the past 10 years in PubMed and Embase that provide data on incidence, prevalence and insight into the patient experience and disease burden of CD-related RVF and AVF (PROSPERO registration number CRD42020177732) were identified. Two trained reviewers used pre-specified eligibility criteria to identify studies for inclusion and evaluate risk of bias using the Risk Of Bias In Non-randomized Studies of Interventions (ROBINS-I) tool for observational studies. Data were extracted for a range of variables, including study type and design, population, outcomes and limitations. Results Of the 582 records identified, 316 full-text articles were assessed, and 16 studies that met a priori eligibility criteria were included (Figure). Three epidemiology studies were identified, with one study estimating the prevalence of RVF to be 2.3% in women with CD. No studies relating to the incidence or prevalence of AVF were identified. Seven of 12 treatment-pattern studies reported that patients had or required additional procedures before and/or after the intervention of interest, demonstrating substantial treatment burden. Of the nine studies that reported healing/success across multiple surgical types, rates ranged from 14.4% to 81.0%. In the seven studies that assessed clinical outcomes, healing rates were in the range 50–75%, with varying estimates dependent on population and intervention. Two studies reported recurrence rates of 13.3–55.8% across multiple surgical interventions. Patient-reported outcomes obtained using standardized measures were reported in only one of the 16 studies and were limited to overall health related quality of life, faecal incontinence-related quality of life and female sexual function index. None of the 16 studies included reported healthcare-resource utilization in this patient population. Conclusion This SLR shows the high disease and treatment burdens of RVF and AVF in patients with CD and identifies multiple evidence gaps in this field. The published literature lacks robust, generalizable data and demonstrates a compelling need for substantial novel research into these rare and debilitating sequelae of CD. Sponsor: Takeda Pharmaceuticals USA, Inc.

scholarly journals P814 Incidence and significance of fatigue in patients with IBD

2020 ◽  
Vol 14 (Supplement_1) ◽  
pp. S634-S635
Author(s):  
G Kokkotis ◽  
D Bekiari ◽  
M Bletsa ◽  
M Gizis ◽  
N Perlepe ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Crohn’S Disease ◽  
Crohn's Disease ◽  
Biological Therapy ◽  
Clinical Laboratory ◽  
Poor Quality ◽  
Self Assessment ◽  
Patient Reported ◽  
Group B

Abstract Background Fatigue is common in IBD patients, even in clinical remission and adversely affects the quality of life. For this reason, it has been suggested to use fatigue questionnaires as PROS (patient reported outcomes). We aimed to study the degree of fatigue in IBD patients and identify factors that are positively or negatively related to its presence. Methods Patients with IBD (men: 51.6%, Crohn’s Disease: 65.2%, age: 36.7 years median, 18.1–72 yrs range), with a regular f-up in our Department completed the Fatigue Severity Scale, IBD Fatigue self assessment 1 & 2, short IBDQ and Short Health Scale upon consensus. Two groups of patients were studied: Group A, patients attended the IBD outpatient clinic (121 patients / 144 questionnaires) and Group B, patients attended the infusion centre for biological therapy (55 patients / 414 questionnaires). The SPSS-23 statistical programme was used to identify correlations between fatigue and various clinical-laboratory parameters of patients. Results Problematic fatigue (FSS> 36) was reported by 46.5% of patients. No difference was observed between Crohn’s disease and Ulcerative Colitis or between the two groups of patients. There were statistically significant correlations between fatigue and disease activity (R = 0.428, P <0.001) and HGB (R = −0.177, p < 0.001). Fatigue was significantly associated with quality of life based on the short IBDQ and SHS questionnaires (R = −0.655, p < 0.001 and R = 0.485, p < 0.001 respectively). There was also a statistically significant relationship of both fatigue and quality of life with parameters such as female sex (p < 0.01), arthralgia (p < 0.05) and biological agent treatment (p < 0.05), while quality of life was statistically significant related with the disease type (P =0.01) too. Sequential measurements showed that the quality of life and fatigue rate were consistently maintained in patients with remission under biological therapy. Conclusion In the group of IBD patients we studied, a significant correlation with various clinical characteristics was observed. The presence of fatigue is a factor associated with poor quality of life for patients.

scholarly journals Responsiveness of the Patient-reported Outcomes Measurement Information System (PROMIS) Pediatric Measures to Changes in Disease Status and Quality of Life Among Children and Adolescents With Crohn’s Disease

2020 ◽  
Author(s):  
Erica J Brenner ◽  
Millie D Long ◽  
Courtney M Mann ◽  
Wenli Chen ◽  
Camila Reyes ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Crohn’S Disease ◽  
Crohn's Disease ◽  
Disease Activity ◽  
Peer Relationships ◽  
Disease Status ◽  
Social Health ◽  
Patient Reported ◽  
The Impact

Abstract Background PROMIS Pediatric domains provide self-reported measures of physical, emotional, and social health in children with chronic conditions. We evaluated the responsiveness of the PROMIS Pediatric measures to changes in disease activity and disease-specific, health-related quality of life (HRQOL) in children with Crohn’s disease (CD). Methods IBD Partners Kids & Teens is an internet-based cohort of children with inflammatory bowel disease (IBD). Participants age 9 to 17 report symptoms related to disease activity (short Crohn’s Disease Activity Index [sCDAI]), the IMPACT-III HRQOL measure, and 5 PROMIS Pediatric domains. We conducted longitudinal analyses using mixed linear models to examine the extent to which PROMIS Pediatric measures respond to changes in sCDAI and IMPACT-III. Results Our study sample included 544 participants with CD (mean age 13 years, 44% female). All PROMIS Pediatric domains responded to changes in sCDAI, indicating improved physical, emotional, and social health, corresponding to improved disease activity and the converse (P < 0.001). Observed effect estimates ranged from 1.8 for peer relationships to 6.8 for fatigue. Of 246 participants with 2 or more completed reports, disease activity was stable in 527, worse in 72, and improved in 67. Changes in PROMIS Pediatric scores were associated with changes in IMPACT-III (r = −0.43 for anxiety, r = −0.45 for depressive symptoms, r = −0.43 for pain interference, r = −0.59 for fatigue, and r = 0.23 for peer relationships). Conclusions This study provides evidence for the longitudinal responsiveness of the PROMIS Pediatric measures to change in disease status and HRQOL in pediatric CD patients.

scholarly journals Effect of Originator Infliximab Treatment on Disease-Related Hospitalizations, Work Productivity and Activity Impairment, and Health Resource Utilization in Patients with Crohn’s Disease in a Real-Life Setting: Results of a Prospective Multicenter Study in Germany

2020 ◽  
pp. 1-13
Author(s):  
Niels Teich ◽  
Michael Bläker ◽  
Frank Holtkamp-Endemann ◽  
Eric Jörgensen ◽  
Andreas Stallmach ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Crohn’S Disease ◽  
Crohn's Disease ◽  
Multicenter Study ◽  
Work Productivity ◽  
Infliximab Treatment ◽  
Prospective Multicenter Study ◽  
Hospitalization Rates ◽  
The Mean

<b><i>Introduction:</i></b> Infliximab (IFX) therapy is efficacious for inducing and maintaining symptomatic remission in patients with Crohn’s disease (CD), but whether this benefit results in reduced hospitalization rates and therefore may improve patients’ quality of life in an economically sensible way is conflicting so far. <b><i>Methods:</i></b> We conducted a noninterventional, multicenter, open-label, prospective study to evaluate the effect of originator IFX treatment on patient-reported outcomes and disease-related hospitalizations in adult CD patients in Germany treated for the first time with IFX according to label. <b><i>Results:</i></b> Two hundred and ninety-four patients were included in the study. We observed a statistically significant reduction in the number of CD-related hospitalizations from the year before baseline (mean 1.00 per patient, SD ± 0.93) to the mean value of the 1st (0.62, SD ± 0.95) and 2nd year (0.32, SD ± 0.75) of the observation period (<i>p</i> &#x3c; 0.0001). After 3 months of IFX therapy, work productivity and activity increased by an average of 12.6 and 17.1%, respectively. Patient’s clinical outcome was markedly improved as the total CD activity index (CDAI) sum score continuously decreased from baseline to month 24 and the mean score of the total inflammatory bowel disease questionnaire (IBDQ) changed substantially from 141 at baseline to 172 after 24 months of IFX treatment. Additionally, the number of work incapacity days declined. Recently, no new safety issues of IFX have been identified. <b><i>Conclusion:</i></b> In this large, prospective, multicenter study on disease-related hospitalization rates, work productivity, capacity for daily activities, and HRQoL in patients with CD, IFX significantly reduces their hospitalization rates and improves work productivity, daily activity, and quality of life over 24 months.

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