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Gaining the Patient Reported Outcomes Measurement Information System (PROMIS) perspective in chronic kidney disease: a Midwest Pediatric Nephrology Consortium study
Authors:David T. Selewski  Susan F. Massengill  Jonathan P. Troost  Larysa Wickman  Kassandra L. Messer  Emily Herreshoff  Corinna Bowers  Maria E. Ferris  John D. Mahan  Larry A. Greenbaum  Jackie MacHardy  Gaurav Kapur  Deepa H. Chand  Jens Goebel  Gina Marie Barletta  Denis Geary  David B. Kershaw  Cynthia G. Pan  Rasheed Gbadegesin  Guillermo Hidalgo  Jerome C. Lane  Jeffrey D. Leiser  Peter X. Song  David Thissen  Yang Liu  Heather E. Gross  Darren A. DeWalt  Debbie S. Gipson
Affiliation:1. Division of Nephrology, Department of Pediatrics and Communicable Diseases, C.S. Mott Children’s Hospital, University of Michigan, 1500 E Medical Center Drive, SPC5297, Ann Arbor, MI, 48109-5297, USA
2. Division of Pediatric Nephrology, Levine Children’s Hospital, Charlotte, NC, USA
3. Department of Biostatistics, School of Public Health, University of Michigan, Ann Arbor, MI, USA
4. Nationwide Children’s Hospital, The Ohio State University, College of Medicine, Columbus, OH, USA
5. Pediatric Nephrology, UNC Kidney Center, The University of North Carolina at Chapel Hill, Chapel Hill, NC, USA
6. Emory University and Children’s Healthcare of Atlanta, Atlanta, GA, USA
7. University of North Carolina, Chapel Hill, NC, USA
8. Pediatric Nephrology and Hypertension Division, Children’s Hospital of Michigan, Detroit, MI, USA
9. Rush Children’s Hospital, Chicago, IL, USA
10. Division of Nephrology and Hypertension, Cincinnati Children’s Hospital, Cincinnati, OH, USA
11. Phoenix Children’s Hospital, Phoenix, AZ, USA
12. Division of Nephrology, The Hospital for Sick Children, Toronto, ON, USA
13. Medical College of Wisconsin, Milwaukee, WI, USA
14. Department of Pediatrics and Center for Human Genetics, Duke University Medical Center, Durham, NC, USA
15. East Carolina University, Greenville, NC, USA
16. Feinberg School of Medicine, Northwestern University and Children’s Memorial Hospital, Chicago, IL, USA
17. Section of Pediatric Nephrology and Hypertension, J.W. Riley Hospital for Children, Indiana University, Indianapolis, IN, USA
18. Department of Psychology, The University of North Carolina at Chapel Hill, Chapel Hill, NC, USA
19. Cecil G. Sheps Center for Health Services Research, Division of General Internal Medicine, University of North Carolina, Chapel Hill, NC, USA
Abstract:

Background and objectives

Chronic kidney disease is a persistent chronic health condition commonly seen in pediatric nephrology programs. Our study aims to evaluate the sensitivity of the Patient Reported Outcomes Measurement Information System (PROMIS) pediatric instrument to indicators of disease severity and activity in pediatric chronic kidney disease.

Methods

This cross sectional study included 233 children 8–17 years old, with chronic kidney disease from 16 participating institutions in North America. Disease activity indicators, including hospitalization in the previous 6 months, edema, and number of medications consumed daily, as well as disease severity indicators of kidney function and coexisting medical conditions were captured. PROMIS domains, including depression, anxiety, social-peer relationships, pain interference, fatigue, mobility, and upper extremity function, were administered via web-based questionnaires. Absolute effect sizes (AES) were generated to demonstrate the impact of disease on domain scores. Four children were excluded because of missing glomerular filtration rate (GFR) estimations.

Results

Of the 229 children included in the final analysis, 221 completed the entire PROMIS questionnaire. Unadjusted PROMIS domains were responsive to chronic kidney disease activity indicators and number of coexisting conditions. PROMIS domain scores were worse in the presence of recent hospitalizations (depression AES 0.33, anxiety AES 0.42, pain interference AES 0.46, fatigue AES 0.50, mobility AES 0.49), edema (depression AES 0.50, anxiety AES 0.60, pain interference AES 0.77, mobility AES 0.54) and coexisting medical conditions (social peer-relationships AES 0.66, fatigue AES 0.83, mobility AES 0.60, upper extremity function AES 0.48).

Conclusions

The PROMIS pediatric domains of depression, anxiety, social-peer relationships, pain interference, and mobility were sensitive to the clinical status of children with chronic kidney disease in this multi-center cross sectional study. We demonstrated that a number of important clinical characteristics including recent history of hospitalization and edema, affected patient perceptions of depression, anxiety, pain interference, fatigue and mobility. The PROMIS instruments provide a potentially valuable tool to study the impact of chronic kidney disease. Additional studies will be required to assess responsiveness in PROMIS score with changes in disease status over time.
Keywords:
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