title: Gaining the Patient Reported Outcomes Measurement Information System (PROMIS) perspective in chronic kidney disease: a Midwest Pediatric Nephrology Consortium study.
abstract: OBJECTIVE
  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.
authors.affiliation: 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, dselewsk@med.umich.edu.
authors.forename: David T
authors.initials: DT
authors.lastname: Selewski
authors.forename: Susan F
authors.initials: SF
authors.lastname: Massengill
authors.forename: Jonathan P
authors.initials: JP
authors.lastname: Troost
authors.forename: Larysa
authors.initials: L
authors.lastname: Wickman
authors.forename: Kassandra L
authors.initials: KL
authors.lastname: Messer
authors.forename: Emily
authors.initials: E
authors.lastname: Herreshoff
authors.forename: Corinna
authors.initials: C
authors.lastname: Bowers
authors.forename: Maria E
authors.initials: ME
authors.lastname: Ferris
authors.forename: John D
authors.initials: JD
authors.lastname: Mahan
authors.forename: Larry A
authors.initials: LA
authors.lastname: Greenbaum
authors.forename: Jackie
authors.initials: J
authors.lastname: MacHardy
authors.forename: Gaurav
authors.initials: G
authors.lastname: Kapur
authors.forename: Deepa H
authors.initials: DH
authors.lastname: Chand
authors.forename: Jens
authors.initials: J
authors.lastname: Goebel
authors.forename: Gina Marie
authors.initials: GM
authors.lastname: Barletta
authors.forename: Denis
authors.initials: D
authors.lastname: Geary
authors.forename: David B
authors.initials: DB
authors.lastname: Kershaw
authors.forename: Cynthia G
authors.initials: CG
authors.lastname: Pan
authors.forename: Rasheed
authors.initials: R
authors.lastname: Gbadegesin
authors.forename: Guillermo
authors.initials: G
authors.lastname: Hidalgo
authors.forename: Jerome C
authors.initials: JC
authors.lastname: Lane
authors.forename: Jeffrey D
authors.initials: JD
authors.lastname: Leiser
authors.forename: Peter X
authors.initials: PX
authors.lastname: Song
authors.forename: David
authors.initials: D
authors.lastname: Thissen
authors.forename: Yang
authors.initials: Y
authors.lastname: Liu
authors.forename: Heather E
authors.initials: HE
authors.lastname: Gross
authors.forename: Darren A
authors.initials: DA
authors.lastname: DeWalt
authors.forename: Debbie S
authors.initials: DS
authors.lastname: Gipson
mesh_terms: D000293:Adolescent; D002648:Child; D003430:Cross-Sectional Studies; D005260:Female; D006801:Humans; D008297:Male; D009398:Nephrology / Q000379:methods; D063868:Patient Outcome Assessment; D011788:Quality of Life; D051436:Renal Insufficiency, Chronic / Q000150:complications* / Q000523:psychology; D057566:Self Report; D012720:Severity of Illness Index; D011795:Surveys and Questionnaires