Quality of Life Research

, Volume 19, Issue 4, pp 585–594

Sampling plan and patient characteristics of the PROMIS pediatrics large-scale survey

  • Debra E. Irwin
  • Brian D. Stucky
  • David Thissen
  • Esi Morgan DeWitt
  • Jin Shei Lai
  • Karin Yeatts
  • James W. Varni
  • Darren A. DeWalt
Article

Abstract

Purpose

This paper describes a large-scale administration of the Patient-Reported Outcomes Measurement Information System (PROMIS) pediatric items to evaluate measurement characteristics.

Methods

Each child completed one of seven test forms containing items from a pool of 293 PROMIS items and four legacy scales. PROMIS items covered six domains (physical function, emotional distress, social role relationship, fatigue, pain, and asthma).

Results

From January 2007 to May 2008, 4,129 children aged 8–17 were enrolled. The sample was 51% female, 55% aged 8–12, 42% minority race and 17% were Hispanic ethnicity. Approximately, 35% of the children participating in the survey consulted a clinician for a chronic illness diagnosis or treatment within 6 months prior to study enrollment.

Conclusions

The final PROMIS pediatric item banks include physical function (n = 52 items), emotional distress (n = 35 items), social role relationships (n = 15 items), fatigue (n = 34 items), pain (n = 13 items), and asthma (n = 17 items). The initial calibration data were provided by a diverse set of children with varying health states (e.g., children with a variety of common chronic illnesses) and racial/ethnic backgrounds.

Keywords

PROMIS HRQOL PRO Scale development Surveys Pediatrics 

Abbreviations

PROMIS

Patient-Reported Outcomes Measurement Information System

IRB

Institutional Review Board

UNC

University of North Carolina

S&W

The Children’s Hospital at Scott and White in Texas

NC

North Carolina

PedsQL™

Pediatric Quality of Life Inventory™

HRQOL

Health-related quality of life

PRO

Patient-reported outcomes

ADD/ADHD

Attention-deficit disorder/attention-deficit hyperactivity disorder

GI

Gastrointestinal disease

Cardiac

Cardiac disease

ESRD

End-stage renal disease

Psych

Psychological disease

Rheum

Rheumatologic disease

CP

Cerebral palsy

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Copyright information

© Springer Science+Business Media B.V. 2010

Authors and Affiliations

  • Debra E. Irwin
    • 1
  • Brian D. Stucky
    • 2
  • David Thissen
    • 2
  • Esi Morgan DeWitt
    • 3
  • Jin Shei Lai
    • 4
  • Karin Yeatts
    • 1
  • James W. Varni
    • 5
  • Darren A. DeWalt
    • 6
    • 7
  1. 1.Department of EpidemiologyUniversity of North Carolina at Chapel HillChapel HillUSA
  2. 2.Department of PsychologyUniversity of North Carolina at Chapel HillChapel HillUSA
  3. 3.Department of Pediatrics, Division of RheumatologyCincinnati Children’s Hospital and Medical CenterCincinnatiUSA
  4. 4.Department of Medical Social SciencesNorthwestern University Feinberg School of MedicineChicagoUSA
  5. 5.Department of Pediatrics, College of Medicine, Department of Landscape Architecture and Urban Planning, College of ArchitectureTexas A&M UniversityCollege StationUSA
  6. 6.Division of General Medicine and Clinical EpidemiologyUniversity of North Carolina at Chapel HillChapel HillUSA
  7. 7.Cecil G. Sheps Center for Health Services ResearchUniversity of North Carolina at Chapel HillChapel HillUSA

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