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Development of the PROMIS pediatric stigma and extension to the PROMIS pediatric stigma: skin item banks

Jin-Shei Lai1,2, Cindy Nowinski3, Stephanie M Rangel4

  • 1Departments of Medical Social Sciences, Northwestern University Feinberg School of Medicine, Chicago, IL, USA. Js-lai@northwestern.edu.

Quality of Life Research : an International Journal of Quality of Life Aspects of Treatment, Care and Rehabilitation
|January 3, 2024
PubMed

Insights

Researchers developed the PROMIS Pediatric Stigma (PPS) and PPS-Skin measures using item response theory. These tools provide a common metric to assess stigma in children with chronic conditions, including unique skin-related concerns.

Area of Science:

  • Psychometrics
  • Pediatric Health
  • Chronic Disease Management

Background:

  • Stigma significantly impacts children with chronic conditions.
  • Existing measures may not capture the nuances of stigma across diverse pediatric illnesses.
  • A unified metric is needed to assess stigma comprehensively in children.

Purpose of the Study:

  • To develop the PROMIS Pediatric Stigma (PPS) and PPS-Skin measures.
  • To create a common metric for measuring stigma in children with epilepsy, neurofibromatosis, muscular dystrophy, cancer, and skin conditions.
  • To capture both common and condition-specific stigma experiences.

Main Methods:

  • Item response theory (IRT) was used to construct the measures.
  • Data from 860 children (ages 8-17) with various chronic conditions were analyzed.
  • Exploratory and confirmatory factor analysis (EFA/CFA) and differential item functioning (DIF) were employed.

Main Results:

  • The PROMIS Pediatric Stigma (PPS) measure, comprising 18 core items, demonstrated sufficient unidimensionality.
  • No significant differential item functioning was observed, indicating stable measurement properties.
  • The PPS-Skin measure was developed by adding 6 skin-specific items to the common PPS metric.

Conclusions:

  • IRT techniques successfully yielded the PPS and PPS-Skin measures.
  • These measures provide a common metric for assessing stigma in children with chronic conditions.
  • The PPS and PPS-Skin account for both shared and unique aspects of stigma related to pediatric chronic illnesses.
Abstract

Keywords:
ChildDermatologyHealth-related quality of lifePROMISSelf-reportStigma

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