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.

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 Responsiveness of Patient-Reported Outcome Measurement Information System (PROMIS) pain domains and disease-specific patient-reported outcome measures in children and adults with sickle cell disease

Hematology ◽  
2017 ◽  
Vol 2017 (1) ◽  
pp. 542-545 ◽  
Author(s):  
Susanna Curtis ◽  
Amanda M. Brandow
Keyword(s):  
Information System ◽  
Hospital Admissions ◽  
Outcome Measurement ◽  
Patient Reported Outcome ◽  
Clinic Visit ◽  
Measurement Information ◽  
The Past ◽  
Patient Reported ◽  
Measurement Information System

Abstract Case 1: A 33-year-old man with hemoglobin SS (homozygous hemoglobin S) disease presents for his regular clinic visit. He had 6 hospital admissions for pain over the past year. He also has avascular necrosis of the right hip. He takes daily hydroxyurea with hematologic changes indicative of compliance. He also takes morphine sustained release twice daily and morphine immediate release every 6 hours as needed for pain. He feels that more optimal pain control at home would help him reduce his number of hospital admissions in the upcoming year and improve his daily functioning at home. His hematologist decides to use Patient-Reported Outcome Measurement Information System (PROMIS) and Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-ME) to follow changes in the patient’s pain. Case 2: An 11-year-old girl with hemoglobin SS disease presents with her mother for her regular clinic visit. She had 2 admissions for pain over the past year. Her mother is concerned because she has been participating less in activities she previously enjoyed and missing classes to go to the school nurse because of pain. She is currently taking hydroxyurea and uses ibuprofen for pain. Her doctor prescribes morphine for home use but wants a way to measure if it is effective in improving her pain. Thus, her physician decides to use PROMIS and the Pediatric Quality of Life Inventory SCD (PedsQL SCD) module to determine the effectiveness of her pain control.

P041 DEVELOPMENT OF PROMIS PEDIATRIC PATIENT-REPORTED OUTCOME SHORT FORMS FOR FATIGUE AND PAIN INTERFERENCE IN CHILDREN WITH CROHN’S DISEASE

2020 ◽  
Vol 26 (Supplement_1) ◽  
pp. S62-S62
Author(s):  
Julia Schuchard ◽  
Michael Kappelman ◽  
Andrew Grossman ◽  
Jennifer Clegg ◽  
Christopher Forrest
Keyword(s):  
Crohn’S Disease ◽  
Crohn's Disease ◽  
Lived Experiences ◽  
Patient Reported Outcome ◽  
Pain Interference ◽  
Measurement Information ◽  
Cognitive Interviews ◽  
Structured Interviews ◽  
Short Forms ◽  
Patient Reported

Abstract Introduction There is a need for reliable, valid patient-reported outcome (PRO) measures to assess the health and quality of life in pediatric Crohn’s disease (PCD). The development of PROs for this population may be facilitated by using Patient-Reported Outcomes Measurement Information System (PROMIS) item banks, which were developed using rigorous psychometric methods. We aimed to develop disease-specific PROMIS short forms by conducting qualitative research to identify the items that are most relevant to children with PCD. Methods Participants in an initial card sorting study included 42 children with CD (ages 8–17), 70 parents of children with CD, and 26 clinicians with expertise in CD. Using an online program, participants rated the importance of PROMIS items for pediatric CD patients. This exercise indicated that children, parents, and clinicians endorse Fatigue and Pain Interference items as important for PCD. In a separate study, trained research coordinators conducted one-on-one semi-structured interviews with 37 children with CD to further explore their experiences with fatigue and pain. Research coordinators also conducted one-on-one cognitive interviews with 14 children with CD. Each participant completed a questionnaire and then was interviewed about the reasoning for their answers. All interviews were transcribed and coded for meaning units, defined as conceptually distinct statements in the words of the participant. Results In semi-structured interviews, highly reported facets of fatigue and its impact included feelings of tiredness, friendships, and sports/exercise. Highly reported facets of pain and its impact included feelings of hurt, friendships, family, attention, and sports/exercise. Participants’ responses revealed the same breadth and types of lived experiences of fatigue and pain as children from the development samples drawn from the general population. Ratings of children’s reasoning and logic in cognitive interviews showed strong understanding of PROMIS items. Final item selection for the PCD-specific PROMIS short forms involved consideration of the concepts that participants identified as important, item understandability, psychometric evaluation of precision and coverage, and balance across different facets of each domain. Conclusions Results support the content validity and comprehensibility of PROMIS Pediatric Fatigue and Pain Interference measures in PCD. This work contributed to the development of 8-item short forms that are tailored to assess the lived experiences of fatigue and pain interference in PCD.

scholarly journals Correlation of Patient-Reported Outcome (PRO-2) with Endoscopic and Histological Features in Ulcerative Colitis and Crohn’s Disease Patients

2020 ◽  
Vol 2020 ◽  
pp. 1-6
Author(s):  
Sanja Dragasevic ◽  
Aleksandra Sokic-Milutinovic ◽  
Milica Stojkovic Lalosevic ◽  
Tamara Milovanovic ◽  
Srdjan Djuranovic ◽  
...  
Keyword(s):  
Ulcerative Colitis ◽  
Inflammatory Bowel Disease ◽  
Crohn’S Disease ◽  
Crohn's Disease ◽  
Disease Activity ◽  
Bowel Disease ◽  
Scoring System ◽  
Patient Reported Outcome ◽  
Patient Reported ◽  
Inflammatory Bowel

Background and Objectives. Determination of inflammatory bowel disease activity determines further therapeutic approach and follow-up. The aim of our study was to investigate correlation between patients’ reported symptoms and endoscopic and histological disease activity. Methods. A cross-sectional study was conducted in consecutive newly diagnosed patients with inflammatory bowel disease in a tertiary care referral center. The initial evaluation included patient-reported outcome for stool frequency subscore and rectal bleeding. Endoscopic activity was determined using the Mayo scoring system for ulcerative colitis and the Simple Endoscopic Score for Crohn’s disease. Histopathological activity was assessed using a validated numeric scoring system. Results. We included 159 patients (63 Crohn’s disease with colonic involvement and 96 with ulcerative colitis). We found significant correlation between the Mayo endoscopic subscoring system and histology activity in ulcerative colitis, while no correlation was found in patients with Crohn’s disease. Patient-reported outcome showed inverse correlation with endoscopic and histological activity in Crohn’s disease (rs=−0.67; rs=−0.72), while positive correlation was found in ulcerative colitis (rs=0.84; rs=0.75). Interpretation and Conclusions. Patient-reported outcome is a practical and noninvasive tool for assessment of disease activity in ulcerative colitis patients but not in Crohn’s disease.

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