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Linkage between the PROMIS® pediatric and adult emotional distress measures

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Abstract

Purpose

Research studies that measure health-related quality of life (HRQOL) in both children and adults and longitudinal studies that follow children into adulthood need measures that can be compared across these age groups. This study links the PROMIS pediatric and adult emotional distress measures using data from participants with diverse health conditions and disabilities.

Methods

Analyses were conducted and compared in two separate samples to confirm the stability of results. One sample (n = 874) included individuals aged 14–20 years with special health care needs and who require health services. The other sample (n = 641) included individuals aged 14–25 years who have a physical or cognitive disability. Participants completed both PROMIS pediatric and adult measures. Item response theory-based scores were linked using the linear approximation to calibrated projection.

Results

The estimated latent-variable correlation between pediatric and adult PROMIS measures ranged from 0.87 to 0.94. Regression coefficients β 0 (intercept) and β 1 (slope), and mean squared error are provided to transform scores from the pediatric to the adult measures, and vice versa.

Conclusions

This study used a relatively new linking method, calibrated projection, to link PROMIS pediatric and adult measure scores, thus expanding the use of PROMIS measures to research that includes both populations.

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Acknowledgments

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, Bryce B. Reeve, PhD, 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 B. 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.

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Authors and Affiliations

  1. Department of Health Policy and Management, Gillings School of Global Public Health, University of North Carolina at Chapel Hill, 1101-D McGavran-Greenberg Hall, 135 Dauer Drive, CB 7411, Chapel Hill, NC, 27599-7411, USA

    Bryce B. Reeve

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

    Bryce B. Reeve & Heather E. Gross

  3. Department of Psychology and Neuroscience, University of North Carolina at Chapel Hill, Chapel Hill, NC, USA

    David Thissen, Brooke Magnus & Hally Quinn

  4. Division of General Medicine and Clinical Epidemiology, Cecil G. Sheps Center for Health Services Research, University of North Carolina at Chapel Hill, Chapel Hill, NC, USA

    Darren A. DeWalt

  5. Department of Health Outcomes and Policy, College of Medicine, University of Florida, Gainesville, FL, USA

    I-Chan Huang

  6. Department of Epidemiology and Cancer Control, St. Jude Children’s Research Hospital, Memphis, TN, USA

    I-Chan Huang

  7. School of Social Sciences, Humanities, and Arts University of California, Merced, USA

    Yang Liu

  8. Center for Assessment Research and Translation, Department of Physical Therapy, College of Health Sciences, University of Delaware, Newark, DE, USA

    Pamela A. Kisala & David S. Tulsky

  9. Health and Disability Research Institute, Boston University School of Public Health, Boston, MA, USA

    Pengsheng Ni, Stephen Haley, Mary Slavin & Alan Jette

  10. Department of Occupational Therapy, School of Health Professions, Thomas Jefferson University, Philadelphia, PA, USA

    M. J. Mulcahey

  11. Craig Hospital, Englewood, CO, USA

    Susie Charlifue

  12. Wayne State University School of Medicine, Detroit, MI, USA

    Robin A. Hanks

Authors
  1. Bryce B. Reeve
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  2. David Thissen
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  3. Darren A. DeWalt
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  4. I-Chan Huang
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  5. Yang Liu
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  6. Brooke Magnus
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  9. Pamela A. Kisala
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  10. Pengsheng Ni
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  17. David S. Tulsky
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Corresponding author

Correspondence to Bryce B. Reeve.

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Conflict of interest

Drs. DeWalt and Tulsky were unpaid members of the Board of Directors for the PROMIS Health Organization (PHO) during the conduct of this study. Drs. Reeve and Tulsky were unpaid members of the Board of Directors for the PHO during the preparation of this manuscript. The remaining authors have no financial relationships or conflicts of interest relevant to this study to disclose.

Informed consent

Informed consent was obtained from all individual participants included in the study.

Research involving human participants

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 Helsinki declaration and its later amendments or comparable ethical standards.

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Reeve, B.B., Thissen, D., DeWalt, D.A. et al. Linkage between the PROMIS® pediatric and adult emotional distress measures. Qual Life Res 25, 823–833 (2016). https://doi.org/10.1007/s11136-015-1143-z

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