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PROMIS® pediatric self-report scales distinguish subgroups of children within and across six common pediatric chronic health conditions

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Abstract

Purpose

To conduct a comparative analysis of eight pediatric self-report scales for ages 8–17 years from the National Institutes of Health (NIH) Patient Reported Outcomes Measurement Information System (PROMIS®) in six pediatric chronic health conditions, using indicators of disease severity.

Methods

Pediatric patients (N = 1454) with asthma, cancer, chronic kidney disease, obesity, rheumatic disease, and sickle cell disease completed items from the PROMIS pediatric mobility, upper extremity functioning, depressive symptoms, anxiety, anger, peer relationships, pain interference, and fatigue self-report scales. Comparisons within the six pediatric chronic health conditions were conducted by examining differences in groups based on the disease severity using markers of severity that were specific to characteristics of each disease. A comparison was also made across diseases between children who had been recently hospitalized and those who had not.

Results

In general, there were differences in self-reported health outcomes within each chronic health condition, with patients who had higher disease severity showing worse outcomes. Across health conditions, when children with recent hospitalizations were compared with those who had not been hospitalized in the past 6 months, we found significant differences in the expected directions for all PROMIS domains, except anger.

Conclusions

PROMIS measures discriminate between different clinically meaningful subgroups within several chronic illnesses. Further research is needed to determine the responsiveness of the PROMIS pediatric scales to change over time.

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Abbreviations

PROMIS® :

Patient Reported Outcomes Measurement Information System

NIH:

National Institutes of Health

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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, Ph.D., U54AR057951, U01AR052177; Northwestern University, PI: Richard C. Gershon, Ph.D., U54AR057943; American Institutes for Research, PI: Susan (San) D. Keller, Ph.D., U54AR057926; State University of New York, Stony Brook, PIs: Joan E. Broderick, Ph.D. and Arthur A. Stone, Ph.D., U01AR057948, U01AR052170; University of Washington, Seattle, PIs: Heidi M. Crane, MD, MPH, Paul K. Crane, MD, MPH, and Donald L. Patrick, Ph.D., U01AR057954; University of Washington, Seattle, PI: Dagmar Amtmann, Ph.D., U01AR052171; University of North Carolina, Chapel Hill, PI: Harry A. Guess, MD, Ph.D. (deceased), Darren A. DeWalt, MD, MPH, U01AR052181; Children’s Hospital of Philadelphia, PI: Christopher B. Forrest, MD, Ph.D., U01AR057956; Stanford University, PI: James F. Fries, MD, U01AR052158; Boston University, PIs: Alan Jette, PT, Ph.D., Stephen M. Haley, Ph.D. (deceased), and David Scott Tulsky, Ph.D. (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, Ph.D., U01AR052155; Georgetown University, PIs: Carol. M. Moinpour, Ph.D. (Fred Hutchinson Cancer Research Center, Seattle) and Arnold L. Potosky, Ph.D., 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, Ph.D., U01AR052186). NIH Science Officers on this project have included Deborah Ader, Ph.D., Vanessa Ameen, MD (deceased), Susan Czajkowski, Ph.D., Basil Eldadah, MD, Ph.D., Lawrence Fine, MD, Dr PH, Lawrence Fox, MD, Ph.D., Lynne Haverkos, MD, MPH, Thomas Hilton, Ph.D., Laura Lee Johnson, Ph.D., Michael Kozak, Ph.D., Peter Lyster, Ph.D., Donald Mattison, MD, Claudia Moy, Ph.D., Louis Quatrano, Ph.D., Bryce Reeve, Ph.D., William Riley, Ph.D., Peter Scheidt, MD, Ashley Wilder Smith, Ph.D., MPH, Susana Serrate-Sztein, MD, William Phillip Tonkins, DrPH, Ellen Werner, Ph.D., Tisha Wiley, Ph.D., and James Witter, MD, Ph.D.. The contents of this article use 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.

Conflict of interest

Dr. DeWalt was an unpaid member of the Board of Directors for the PROMIS Health Organization during the conduct of this study. The remaining authors have no financial relationships or conflicts of interest relevant to this study to disclose.

Author information

Authors and Affiliations

  1. Division of General Medicine and Clinical Epidemiology, Cecil G. Sheps Center for Health Services Research, University of North Carolina at Chapel Hill, 5041 Old Clinic Building, CB 7110, Chapel Hill, NC, 27599, USA

    Darren A. DeWalt

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

    Heather E. Gross

  3. Department of Pediatrics and Communicable Diseases, C.S. Mott Children’s Hospital, University of Michigan, Ann Arbor, MI, USA

    Debbie S. Gipson & David T. Selewski

  4. Division of Rheumatology, Department of Pediatrics, Cincinnati Children’s Hospital Medical Center, Cincinnati, OH, USA

    Esi Morgan DeWitt

  5. Department of Pediatrics, Emory University, Atlanta, GA, USA

    Carlton D. Dampier

  6. AFLAC Cancer and Blood Disorders Center, Children’s Healthcare of Atlanta, Atlanta, GA, USA

    Carlton D. Dampier

  7. Children’s National Medical Center, George Washington University, Washington, DC, USA

    Pamela S. Hinds

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

    I-Chan Huang

  9. Department of Psychology, University of North Carolina at Chapel Hill, Chapel Hill, NC, USA

    David Thissen

  10. Department of Pediatrics, College of Medicine, Texas A&M University, College Station, TX, USA

    James W. Varni

  11. Department of Landscape Architecture and Urban Planning, College of Architecture, Texas A&M University, College Station, TX, USA

    James W. Varni

Authors
  1. Darren A. DeWalt
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  2. Heather E. Gross
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  3. Debbie S. Gipson
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  4. David T. Selewski
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  5. Esi Morgan DeWitt
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  6. Carlton D. Dampier
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  7. Pamela S. Hinds
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  8. I-Chan Huang
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  9. David Thissen
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  10. James W. Varni
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Corresponding author

Correspondence to Darren A. DeWalt.

Appendix

Appendix

See Table 5.

Table 5 Sampling plan for cancer, kidney disease, obesity, rheumatic disease, and sickle cell disease
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DeWalt, D.A., Gross, H.E., Gipson, D.S. et al. PROMIS® pediatric self-report scales distinguish subgroups of children within and across six common pediatric chronic health conditions. Qual Life Res 24, 2195–2208 (2015). https://doi.org/10.1007/s11136-015-0953-3

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