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.

P049 RESPONSIVENESS OF THE PATIENT-REPORTED OUTCOME MEASUREMENT INFORMATION SYSTEM (PROMIS) TO CHANGES IN DISEASE STATUS AND QUALITY OF LIFE AMONG PEDIATRIC PATIENTS WITH CROHN’S DISEASE

2020 ◽  
Vol 26 (Supplement_1) ◽  
pp. S66-S66
Author(s):  
Erica Brenner ◽  
Millie Long ◽  
Courtney Mann ◽  
Wenli Chen ◽  
Camila Reyes ◽  
...  
Keyword(s):  
Crohn’S Disease ◽  
Crohn's Disease ◽  
Disease Activity ◽  
Peer Relationships ◽  
Outcome Measurement ◽  
Disease Status ◽  
Patient Reported Outcome ◽  
Measurement Information ◽  
Patient Reported

Abstract Background Patient Reported Outcome Measurement Information System (PROMIS) provides valid, self-reported measures of physical, emotional, and social health that can inform research and clinical care in children with chronic conditions. Prior research in pediatric Crohn’s disease (CD) has demonstrated robust correlations between PROMIS and disease activity. However, responsiveness, defined as sensitivity to clinical change, has not been yet been thoroughly evaluated. Aims We sought to evaluate the responsiveness of the PROMIS Pediatric measures relative to changes in 1) disease activity and 2) disease-specific health-related quality of life (HRQOL). Methods IBD Partners Kids & Teens is an internet-based cohort of children with 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 PROMIS domains of Anxiety, Depression, Pain Interference, Fatigue, and Peer Relationships. We conducted longitudinal analyses using mixed linear models to examine the extent to which PROMIS measures were responsive to changes in SCDAI and IMPACT III, adjusting for time and taking into account the clustering of individual participants. A change threshold of 70 points in SCDAI was used as a minimally important difference (MID). We also graphically depicted changes in PROMIS domains corresponding to improved, stable, or worsened disease activity and evaluated changes in PROMIS versus changes in IMPACT III using Pearson’s correlation. Results Our study sample included 544 participants with CD (mean age 13 years, 44% female) from 44 states. All PROMIS domains were responsive to changes in SCDAI, indicating improved physical, emotional, and social health corresponding to improved disease activity (Table 1, p< 0.001). Observed effect estimates ranged from 1.9 for Peer Relationships to 6.9 for Fatigue, in line with estimates of MID in both adult IBD and other pediatric chronic conditions. Of 246 participants with 2 or more completed reports (689 pairs of consecutive reports), disease activity was stable in 527, worse in 72, and improved in 67. Figure 1 demonstrates changes in PROMIS scores as a function of change in disease activity. Changes in PROMIS scores were also strongly associated with changes in IMPACT 35 scores (R=-0.5 for Anxiety, R=-0.5 for Depression, R=-0.6 for Pain Interference, R= -0.7 for Fatigue, and R=0.35 for Peer Relationships). Conclusion This study provides evidence for the longitudinal responsiveness of the PROMIS Pediatric measures to change in disease status and HRQOL in pediatric CD patients. The results support use of the PROMIS Pediatric measures in clinical outcomes research.

The Impact of Cholecystectomy on Long-Term Disease Outcomes and Quality of Life in Patients with Crohn’s Disease

2020 ◽  
Author(s):  
Filippos Koutroumpakis ◽  
Maham Lodhi ◽  
Maaz Ahsan ◽  
Claudia Ramos Rivers ◽  
Marc Schwartz ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Crohn’S Disease ◽  
Crohn's Disease ◽  
Disease Activity ◽  
Hospital Admissions ◽  
Tertiary Center ◽  
Prospective Longitudinal ◽  
The Impact

Abstract Background Cholecystectomy (CCY) is one of the most frequently performed abdominal surgeries. However, the impact of CCY in clinical settings with altered gastrointestinal physiology and anatomy, such as Crohn’s disease (CD), has not been fully characterized. We sought to investigate clinical outcomes, disease severity, and quality of life of CD patients after CCY. Methods We utilized a prospective, longitudinal registry of consented CD patients followed at a tertiary center. Crohn’s disease patients that had or had not undergone CCY formed the 2 study groups. The absence or presence of gallbladder was confirmed with abdominal CT scans obtained during routine care. Multiyear clinical, biochemical, and histologic data were collected and analyzed. Results Among 834 CD patients, 151 (18%) had undergone CCY. History of CCY was associated with higher disease activity (median Harvey-Bradshaw index; P < 0.001), more years with anemia (P = 0.048), lower albumin (P = 0.001), worse quality of life (mean Short Inflammatory Bowel Disease Questionnaire; P < 0.001), chronic abdominal pain (P < 0.001), higher risk for incident colonic dysplasia (P = 0.011), higher rates of annual hospital admissions (P = 0.004), and opioid use (P < 0.001). In multivariate analysis, CCY remained associated with higher disease activity (P < 0.001), lower albumin (P = 0.008), lower quality of life (P < 0.001), and more hospital admissions (P = 0.008), whereas CD patients with diseased ileum had higher risk for colonic dysplasia (P = 0.031). Conclusions CCY in CD patients was associated with multiple markers of disease activity and worse quality of life during multiyear follow up. This data suggests that CCY in CD patients may adversely impact the long-term clinical course.

S1209 Does Self-Reported Quality of Life Correlate with Disease Activity in All Crohn's Disease Patients?

2008 ◽  
Vol 134 (4) ◽  
pp. A-201-A-202
Author(s):  
Mazen Issa ◽  
Ashwin N. Ananthakrishnan ◽  
Dawn B. Beaulieu ◽  
Mark Mulcaire-Jones ◽  
Joshua F. Knox ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Crohn’S Disease ◽  
Crohn's Disease ◽  
Disease Activity

Prospective assessment of Cleveland Global Quality of Life (CGQL) as a novel marker of quality of life and disease activity in Crohn'S disease

2003 ◽  
Vol 98 (8) ◽  
pp. 1783-1789 ◽  
Author(s):  
Ravi P. Kiran ◽  
Conor P. Delaney ◽  
Anthony J. Senagore ◽  
Bridget O'Brien-Ermlich ◽  
Edward Mascha ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Crohn’S Disease ◽  
Crohn's Disease ◽  
Disease Activity ◽  
Global Quality ◽  
Global Quality Of Life ◽  
Prospective Assessment

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.

Quality of life and disease activity in patients with crohn’s disease

2018 ◽  
Vol 37 ◽  
pp. S98
Author(s):  
I. Cioffi ◽  
N. Imperatore ◽  
O. Di Vincenzo ◽  
A. Testa ◽  
R. Sammarco ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Crohn’S Disease ◽  
Crohn's Disease ◽  
Disease Activity

scholarly journals Impact of skin, musculoskeletal and psychosocial aspects on quality of life in psoriatic arthritis patients: A cross-sectional study of outpatient clinic patients in the biologic treatment era

RMD Open ◽  
2020 ◽  
Vol 6 (1) ◽  
pp. e001223 ◽  
Author(s):  
Glenn Haugeberg ◽  
Brigitte Michelsen ◽  
Arthur Kavanaugh
Keyword(s):  
Quality Of Life ◽  
Psoriatic Arthritis ◽  
Disease Activity ◽  
Outpatient Clinic ◽  
Negative Impact ◽  
Psychosocial Burden ◽  
Biologic Treatment ◽  
Patient Reported ◽  
The Impact

BackgroundIn psoriatic arthritis (PsA), both psoriasis and musculoskeletal manifestations may impair Health-Related Quality of Life (HRQoL). Our objective was to explore the impact of the various disease manifestations and disease consequences, including psychosocial factors, on HRQoL in PsA patients treated in the biologic treatment era.MethodsData collection in the 131 outpatient clinic PsA patients assessed included demographics, disease activity measures for both skin and musculoskeletal involvement and patient-reported outcome (PRO) measures, treatment and psychosocial burden. The skin dimension of quality of life was assessed by the Dermatology Life Quality Index (DLQI) and the overall HRQoL by the 15-Dimensional (15D) Questionnaire.ResultsThe mean age was 51.9 years, PsA disease duration 8.6 years, 50.4% were men, 56.9% were employed/working and 47.7% had ≥1 comorbidities. Prevalence of monotherapy with conventional synthetic disease-modifying antirheumatic drugs (csDMARDs) was 36.6% and with biologic DMARDs 12.2% and combination of both 22.9%. Mean DLQI was 3.3 and 15D 0.84. In adjusted analysis, not employed/working, higher scores for fatigue, sleep disturbances, anxiety and depression, Modified Health Assessment Questionnaire and presence of comorbidities were independently associated with impaired HRQoL (lower 15D scores), whereas Psoriasis Area Severity Index (PASI) and DLQI were not. Younger age and higher Psoriatic Arthritis Disease Activity Score and PASI scores were independently associated with impaired skin quality of life (higher DLQI score).ConclusionOur study highlights the negative impact the psychosocial burden, impaired physical function and comorbidities has on reduced HRQoL in PsA outpatients. Thus, to further improve HRQoL in PsA patients, not only physical concerns but also psychological concerns need to be addressed.

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
Sign in / Sign up

Export Citation Format

Share Document