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Pediatric Nephrology

, Volume 29, Issue 12, pp 2347–2356 | Cite as

Gaining the Patient Reported Outcomes Measurement Information System (PROMIS) perspective in chronic kidney disease: a Midwest Pediatric Nephrology Consortium study

  • David T. SelewskiEmail author
  • 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
Original Article

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

Patient reported outcomes Quality of life Transplant End stage kidney disease Chronic kidney disease Pediatrics Children 

Notes

Acknowledgements

The investigators are indebted to the children and families who graciously participated in this study.

The Patient-Reported Outcomes Measurement Information System (PROMIS) is an NIH Roadmap initiative to develop a computerized system measuring PROs in respondents with a wide range of chronic diseases and demographic characteristics.

PROMIS II was funded by cooperative agreements with a Statistical Center (Northwestern University, PI: David Cella, Ph.D., 1U54AR057951), a Technology Center (Northwestern University, PI: Richard C. Gershon, Ph.D., 1U54AR057943), a Network Center (American Institutes for Research, PI: Susan (San) D. Keller, Ph.D., 1U54AR057926) and 13 Primary Research Sites, which may include more than one institution (State University of New York, Stony Brook, PIs: Joan E. Broderick, Ph.D. and Arthur A. Stone, Ph.D., 1U01AR057948; University of Washington, Seattle, PIs: Heidi M. Crane, M.D., M.P.H., Paul K. Crane, M.D., M.P.H., and Donald L. Patrick, Ph.D., 1U01AR057954; University of Washington, Seattle, PIs: Dagmar Amtmann, Ph.D. and Karon Cook, Ph.D., 1U01AR052171; University of North Carolina, Chapel Hill, PI: Darren A. DeWalt, M.D., M.P.H., 2U01AR052181; Children’s Hospital of Philadelphia, PI: Christopher B. Forrest, M.D., Ph.D., 1U01AR057956; Stanford University, PI: James F. Fries, M.D., 2U01AR052158; Boston University, PIs: Stephen M. Haley, Ph.D. and David Scott Tulsky, Ph.D. (University of Michigan, Ann Arbor), 1U01AR057929; University of California, Los Angeles, PIs: Dinesh Khanna, M.D. and Brennan Spiegel, M.D., M.S.H.S., 1U01AR057936; University of Pittsburgh, PI: Paul A. Pilkonis, Ph.D., 2U01AR052155; Georgetown University, PIs: Carol. M. Moinpour, Ph.D. (Fred Hutchinson Cancer Research Center, Seattle) and Arnold L. Potosky, Ph.D., U01AR057971; Children’s Hospital Medical Center, Cincinnati, PI: Esi M. Morgan DeWitt, M.D., M.S.C.E., 1U01AR057940; University of Maryland, Baltimore, PI: Lisa M. Shulman, M.D., 1U01AR057967; and Duke University, PI: Kevin P. Weinfurt, PhD, 2U01AR052186). NIH Science Officers on this project have included Deborah Ader, Ph.D., Vanessa Ameen, M.D., Susan Czajkowski, Ph.D., Basil Eldadah, M.D., Ph.D., Lawrence Fine, M.D., Dr.P.H., Lawrence Fox, M.D., Ph.D., Lynne Haverkos, M.D., M.P.H., Thomas Hilton, Ph.D., Laura Lee Johnson, Ph.D., Michael Kozak, Ph.D., Peter Lyster, Ph.D., Donald Mattison, M.D., Claudia Moy, Ph.D., Louis Quatrano, Ph.D., Bryce Reeve, Ph.D., William Riley, Ph.D., Ashley Wilder Smith, Ph.D., M.P.H., Susana Serrate-Sztein, M.D., Ellen Werner, Ph.D. and James Witter, M.D., Ph.D. This manuscript was reviewed by PROMIS reviewers before submission for external peer review.

Conflicts of interest

The authors have no financial relationships or conflicts of interest relevant to this article to disclose.

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Copyright information

© IPNA 2014

Authors and Affiliations

  • David T. Selewski
    • 1
    Email author
  • Susan F. Massengill
    • 2
  • Jonathan P. Troost
    • 1
  • Larysa Wickman
    • 1
  • Kassandra L. Messer
    • 3
  • Emily Herreshoff
    • 1
  • Corinna Bowers
    • 4
  • Maria E. Ferris
    • 5
  • John D. Mahan
    • 4
  • Larry A. Greenbaum
    • 6
  • Jackie MacHardy
    • 7
  • Gaurav Kapur
    • 8
  • Deepa H. Chand
    • 9
  • Jens Goebel
    • 10
  • Gina Marie Barletta
    • 11
  • Denis Geary
    • 12
  • David B. Kershaw
    • 1
  • Cynthia G. Pan
    • 13
  • Rasheed Gbadegesin
    • 14
  • Guillermo Hidalgo
    • 15
  • Jerome C. Lane
    • 16
  • Jeffrey D. Leiser
    • 17
  • Peter X. Song
    • 3
  • David Thissen
    • 18
  • Yang Liu
    • 18
  • Heather E. Gross
    • 7
  • Darren A. DeWalt
    • 19
  • Debbie S. Gipson
    • 1
  1. 1.Division of Nephrology, Department of Pediatrics and Communicable Diseases, C.S. Mott Children’s HospitalUniversity of MichiganAnn ArborUSA
  2. 2.Division of Pediatric NephrologyLevine Children’s HospitalCharlotteUSA
  3. 3.Department of Biostatistics, School of Public HealthUniversity of MichiganAnn ArborUSA
  4. 4.Nationwide Children’s HospitalThe Ohio State University, College of MedicineColumbusUSA
  5. 5.Pediatric Nephrology, UNC Kidney CenterThe University of North Carolina at Chapel HillChapel HillUSA
  6. 6.Emory University and Children’s Healthcare of AtlantaAtlantaUSA
  7. 7.University of North CarolinaChapel HillUSA
  8. 8.Pediatric Nephrology and Hypertension DivisionChildren’s Hospital of MichiganDetroitUSA
  9. 9.Rush Children’s HospitalChicagoUSA
  10. 10.Division of Nephrology and HypertensionCincinnati Children’s HospitalCincinnatiUSA
  11. 11.Phoenix Children’s HospitalPhoenixUSA
  12. 12.Division of NephrologyThe Hospital for Sick ChildrenTorontoUSA
  13. 13.Medical College of WisconsinMilwaukeeUSA
  14. 14.Department of Pediatrics and Center for Human GeneticsDuke University Medical CenterDurhamUSA
  15. 15.East Carolina UniversityGreenvilleUSA
  16. 16.Feinberg School of MedicineNorthwestern University and Children’s Memorial HospitalChicagoUSA
  17. 17.Section of Pediatric Nephrology and Hypertension, J.W. Riley Hospital for ChildrenIndiana UniversityIndianapolisUSA
  18. 18.Department of PsychologyThe University of North Carolina at Chapel HillChapel HillUSA
  19. 19.Cecil G. Sheps Center for Health Services Research, Division of General Internal MedicineUniversity of North CarolinaChapel HillUSA

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