Quality of Life Research

, Volume 19, Issue 4, pp 585–594 | Cite as

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



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


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).


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.


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.


PROMIS HRQOL PRO Scale development Surveys Pediatrics 



Patient-Reported Outcomes Measurement Information System


Institutional Review Board


University of North Carolina


The Children’s Hospital at Scott and White in Texas


North Carolina


Pediatric Quality of Life Inventory™


Health-related quality of life


Patient-reported outcomes


Attention-deficit disorder/attention-deficit hyperactivity disorder


Gastrointestinal disease


Cardiac disease


End-stage renal disease


Psychological disease


Rheumatologic disease


Cerebral palsy



We would like to acknowledge the contribution of Harry A. Guess, MD, PhD, to the conceptualization and operationalization of this research prior to his death. This work was funded by the National Institutes of Health through the NIH Roadmap for Medical Research, Grant 1U01AR052181-01. Information on the Patient-Reported Outcomes Measurement Information System (PROMIS) can be found at and


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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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