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Known-groups validity of the Patient-Reported Outcomes Measurement Information System (PROMIS®) in adolescents and young adults with special healthcare needs

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Abstract

Purpose

To examine known-groups validity of the Patient-Reported Outcomes Measurement Information System (PROMIS®) Short Forms (SFs) for adolescents and young adults with special healthcare needs (SHCN) using data collected from the PROMIS Linking Study.

Methods

In total, 292 adolescents aged 14–17.9 years and 300 young adults aged 18–20 years with SHCN from the PROMIS Linking Study were used for analyses. Presence of SHCN was classified into three categories (medication use, service use, and functional limitations). HRQoL was measured with the PROMIS Pediatric and Adult SFs. Differences in health-related quality of life (HRQoL) domain scores between SHCN sample and the norms of the PROMIS pediatric and adult calibration samples, respectively, were compared using t tests. Associations of HRQoL scores with the presence of individual SHCN categories were tested using linear regression.

Results

All HRQoL domain scores for the SHCN samples were significantly worse than the respective calibration samples. Adolescents and young adults with SHCN-related service use and functional limitations reported worse HRQoL than those without service use and functional limitations (p’s < 0.01).

Conclusions

PROMIS Pediatric and Adult SFs possess satisfactory known-groups validity related to SHCN status.

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Acknowledgements

PROMIS® was funded with cooperative agreements from the National Institutes of Health (NIH) Common Fund Initiative (Northwestern University, PI: David Cella, PhD, U54AR057951, U01AR052177; Northwestern University, PI: Richard C. Gershon, PhD, U54AR057943; American Institutes for Research, PI: Susan (San) D. Keller, PhD, U54AR057926; State University of New York, Stony Brook, PIs: Joan E. Broderick, PhD, and Arthur A. Stone, PhD, U01AR057948, U01AR052170; University of Washington, Seattle, PIs: Heidi M. Crane, MD, MPH, Paul K. Crane, MD, MPH, and Donald L. Patrick, PhD, U01AR057954; University of Washington, Seattle, PI: Dagmar Amtmann, PhD, U01AR052171; University of North Carolina, Chapel Hill, PI: Harry A. Guess, MD, PhD (deceased), Darren A. DeWalt, MD, MPH, U01AR052181; Children’s Hospital of Philadelphia, PI: Christopher B. Forrest, MD, PhD, U01AR057956; Stanford University, PI: James F. Fries, MD, U01AR052158; Boston University, PIs: Alan Jette, PT, PhD, Stephen M. Haley, PhD (deceased), and David Scott Tulsky, PhD (University of Michigan, Ann Arbor), U01AR057929; University of California, Los Angeles, PIs: Dinesh Khanna, MD (University of Michigan, Ann Arbor) and Brennan Spiegel, MD, MSHS, U01AR057936; University of Pittsburgh, PI: Paul A. Pilkonis, PhD, U01AR052155; Georgetown University, PIs: Carol. M. Moinpour, PhD (Fred Hutchinson Cancer Research Center, Seattle), and Arnold L. Potosky, PhD, U01AR057971; Children’s Hospital Medical Center, Cincinnati, PI: Esi M. Morgan DeWitt, MD, MSCE, U01AR057940; University of Maryland, Baltimore, PI: Lisa M. Shulman, MD, U01AR057967; and Duke University, PI: Kevin P. Weinfurt, PhD, U01AR052186). NIH Science Officers on this project have included Deborah Ader, PhD, Vanessa Ameen, MD (deceased), Susan Czajkowski, PhD, Basil Eldadah, MD, PhD, Lawrence Fine, MD, DrPH, Lawrence Fox, MD, PhD, Lynne Haverkos, MD, MPH, Thomas Hilton, PhD, Laura Lee Johnson, PhD, Michael Kozak, PhD, Peter Lyster, PhD, Donald Mattison, MD, Claudia Moy, PhD, Louis Quatrano, PhD, Bryce Reeve, PhD, William Riley, PhD, Peter Scheidt, MD, Ashley Wilder Smith, PhD, MPH, Susana Serrate-Sztein, MD, William Phillip Tonkins, DrPH, Ellen Werner, PhD, Tisha Wiley, PhD, and James Witter, MD, PhD. The contents of this article uses data developed under PROMIS. These contents do not necessarily represent an endorsement by the US Federal Government or PROMIS. See www.nihpromis.org for additional information on the PROMIS® initiative.

Funding sources

National Institutes of Health U01 AR052181 (Howell, Gross, Reeve, DeWalt, Huang) and American Lebanese Syrian Associated Charities (Howell, Huang).

Author information

Authors and Affiliations

  1. Department of Epidemiology and Cancer Control, MS 735, St. Jude Children’s Research Hospital, 262 Danny Thomas Place, Memphis, TN, 38105, USA

    Carrie R. Howell & I-Chan Huang

  2. Cecil G. Sheps Center for Health Services Research, University of North Carolina at Chapel Hill, Chapel Hill, NC, USA

    Heather E. Gross, Bryce B. Reeve & Darren A. DeWalt

  3. Department of Health Policy and Management, Gillings School of Global Public Health, University of North Carolina at Chapel Hill, Chapel Hill, NC, USA

    Bryce B. Reeve

  4. Department of Medicine, School of Medicine, University of North Carolina at Chapel Hill, Chapel Hill, NC, USA

    Darren A. DeWalt

Authors
  1. Carrie R. Howell
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  2. Heather E. Gross
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  3. Bryce B. Reeve
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  4. Darren A. DeWalt
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  5. I-Chan Huang
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Correspondence to I-Chan Huang.

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No conflict of interest to all co-authors.

Ethical approval

All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Declaration of Helsinki and its later amendments or comparable ethical standards. The University of Florida Institution Review Board approved the study protocol. Informed consent was obtained from all individual participants included in the study.

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Howell, C.R., Gross, H.E., Reeve, B.B. et al. Known-groups validity of the Patient-Reported Outcomes Measurement Information System (PROMIS®) in adolescents and young adults with special healthcare needs. Qual Life Res 25, 1815–1823 (2016). https://doi.org/10.1007/s11136-016-1237-2

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