Gaining the Patient Reported Outcomes Measurement Information System (PROMIS) perspective in chronic kidney disease: a Midwest Pediatric Nephrology Consortium study
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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.
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.
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).
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.
KeywordsPatient reported outcomes Quality of life Transplant End stage kidney disease Chronic kidney disease Pediatrics Children
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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