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

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Abstract

Purpose

To develop the PROMIS Pediatric Stigma (PPS) and Skin (PPS-Skin) by constructing a common metric for measuring stigma in children with various conditions, while capturing the unique features of each condition.

Methods

Data from 860 children, ages 8–17, with a diagnosis of epilepsy, pNF (neurofibromatosis type 1 associated neurofibroma plexform), MD (muscular dystrophy), cancer, or skin conditions recruited from three projects were analyzed. Children with epilepsy, pNF and MD (sample-1) completed the original 18-item Neuro-QoL Stigma, while children with cancer and skin conditions (e.g., atopic dermatitis, psoriasis, and genetic skin disorders; sample-2) completed a 16-item version and 6 additional skin related items. Exploratory factor analysis (EFA) and confirmatory analysis (CFA) were used to evaluate unidimensionality of 24 stigma items. Differential item functioning (DIF) was used to evaluate measurement equivalence on group, gender, age, and conditions. Item response theory model (IRT) was used to construct the final measure.

Results

Sufficient unidimensionality was supported by both EFA and CFA. No items showed significant DIF indicating stable measurement properties across groups of comparison. All items fit the IRT model and were able to be calibrated together to form the PPS which consists of 18 core items. The PPS-Skin (18 cores items + 6 skin items) was developed by calibrating 6 skin items onto the common metric as the PPS.

Conclusions

We used IRT techniques to successfully develop the PPS and the PPS-Skin, which share a common metric and account for unique and common concerns related to chronic conditions.

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Funding

This work was supported by National Institutes of Health (NIAMS U19 069526; MPIs: Jin-Shei Lai and Amy Paller); National Institute of Neurological Disorders and Stroke (HHSN265200423601C; PI: David Cella); and an Agreement to Dr. Jin-Shei Lai from the Johns Hopkins University School of Medicine and the Neurofibromatosis Therapeutic Acceleration Program (NTAP). Its contents are solely the responsibility of the authors and do not necessarily represent the official views of the Johns Hopkins University School of Medicine. The study sponsor provided consultation regarding study design and assistance with recruitment for data collection. The study sponsor was not involved in the analysis/interpretation of data, the writing of the report, or the decision to submit the manuscript for publication.

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Authors and Affiliations

  1. Departments of Medical Social Sciences, Northwestern University Feinberg School of Medicine, Chicago, IL, USA

    Jin-Shei Lai, Cindy Nowinski, Vitali Ustsinovich, David Cella & Maxwell Mansolf

  2. Departments of Pediatrics, Northwestern University Feinberg School of Medicine, Chicago, IL, USA

    Jin-Shei Lai, Sarah Chamlin & Amy S. Paller

  3. Departments of Dermatology, Northwestern University Feinberg School of Medicine, Chicago, IL, USA

    Stephanie M. Rangel, Shalini Thareja Batra, Kelly Mueller & Amy S. Paller

  4. Division of Dermatology, Ann and Robert H. Lurie Children’s Hospital of Chicago, Chicago, IL, USA

    Sarah Chamlin

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  1. Jin-Shei Lai
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Contributions

Conceptualization/Design: JSL, ASP, SC, CN, DC. Funding acquisition: JSL, ASP. Data Curation: JSL, ASP, SMR, KM, STB, VU. Data Analysis: JSL, ASP, DC, MM. Drafting the initial manuscript: JSL. Review/editing the manuscript: ASP, DC, CN, SMR, STB, KM, VU, DC, MM.

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Correspondence to Jin-Shei Lai.

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Lai, JS., Nowinski, C., Rangel, S.M. et al. Development of the PROMIS pediatric stigma and extension to the PROMIS pediatric stigma: skin item banks. Qual Life Res 33, 865–873 (2024). https://doi.org/10.1007/s11136-023-03574-z

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