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Development of six PROMIS pediatrics proxy-report item banks

Debra E Irwin1, Heather E Gross, Brian D Stucky

  • 1Department of Epidemiology, University of North Carolina at Chapel Hill, NC 27599, USA. dirwin@email.unc.edu

Health and Quality of Life Outcomes
|February 24, 2012
PubMed

Insights

This study developed patient-reported outcome (PRO) measures for children unable to self-report. The new PROMIS pediatric proxy-report item banks provide reliable data for children with chronic illnesses.

Area of Science:

  • Pediatric Health Outcomes Research
  • Psychometrics
  • Clinical Assessment

Background:

  • Pediatric self-report is the standard for patient-reported outcomes (PRO).
  • Proxy-reports are necessary when children cannot self-report due to age, cognitive impairment, or illness.
  • Development of the Patient Reported Outcomes Measurement Information System (PROMIS) pediatric proxy-report item banks is crucial for comprehensive child health assessment.

Purpose of the Study:

  • To describe the development of PROMIS pediatric proxy-report item banks.
  • To generate item parameters for proxy-reports across key pediatric domains.
  • To ensure reliable PRO data collection for children unable to self-report.

Main Methods:

  • PROMIS pediatric self-report items were adapted into proxy-report items.
  • Cognitive interviews with 25 caregivers assessed item clarity and usability.
  • A large-scale survey (n=1548 dyads, n=432 for younger children) collected data from caregivers and children (ages 8-17).

Main Results:

  • Proxy-report items were generally well-understood, though some items posed challenges for proxy respondents.
  • The study sample comprised diverse caregivers (85% female, 64% Caucasian) of children with chronic conditions, primarily asthma.
  • PROMIS proxy sample performance was comparable or superior to normative samples on other validated instruments.

Conclusions:

  • The PROMIS pediatric proxy-report item banks were developed using data from a diverse caregiver population.
  • Item banks cover critical domains: physical function, emotional distress, social peer relationships, fatigue, pain interference, and asthma impact.
  • These banks provide essential tools for measuring pediatric patient-reported outcomes when proxy-reporting is required.
Abstract

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