Quality of Life Research

, Volume 25, Issue 7, pp 1815–1823 | Cite as

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

  • Carrie R. Howell
  • Heather E. Gross
  • Bryce B. Reeve
  • Darren A. DeWalt
  • I-Chan Huang
Brief Communication



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.


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.


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).


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


Adolescents Health-related quality of life Patient-Reported Outcomes Measurement Information System (PROMIS®Special healthcare needs Young adults 



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 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).

Compliance with ethical standards

Conflict of interest

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.


  1. 1.
    van Dyck, P. C., Kogan, M. D., McPherson, M. G., Weissman, G. R., & Newacheck, P. W. (2004). Prevalence and characteristics of children with special health care needs. Archives of Pediatrics and Adolescent Medicine, 158(9), 884–890.CrossRefPubMedGoogle Scholar
  2. 2.
    Scal, P., & Ireland, M. (2005). Addressing transition to adult health care for adolescents with special health care needs. Pediatrics, 115(6), 1607–1612.CrossRefPubMedGoogle Scholar
  3. 3.
    McPherson, M., Arango, P., Fox, H., Lauver, C., McManus, M., Newacheck, P. W., et al. (1998). A new definition of children with special health care needs. Pediatrics, 102(1 Pt 1), 137–140.CrossRefPubMedGoogle Scholar
  4. 4.
    Eiser, C., & Morse, R. (2001). A review of measures of quality of life for children with chronic illness. Archives of Disease in Childhood, 84(3), 205–211.CrossRefPubMedPubMedCentralGoogle Scholar
  5. 5.
    Seid, M., Yu, H., Lotstein, D., & Varni, J. W. (2005). Using health-related quality of life to predict and manage pediatric healthcare. Expert Review of Pharmacoeconomics & Outcomes Research, 5(4), 489–498.CrossRefGoogle Scholar
  6. 6.
    Varni, J. W., Burwinkle, T. M., & Lane, M. M. (2005). Health-related quality of life measurement in pediatric clinical practice: An appraisal and precept for future research and application. Health and Quality of Life Outcomes, 3, 34.CrossRefPubMedPubMedCentralGoogle Scholar
  7. 7.
    Ader, D. N. (2007). Developing the Patient-Reported Outcomes Measurement Information System (PROMIS). Medical Care, 45(5), S1–S2.CrossRefGoogle Scholar
  8. 8.
    Fayers, P. M., & Machin, D. (Eds.). (2007). Scores and measurements: Validity, reliability, sensitivity. In Quality of Life: The assessment, analysis and interpretation of patient-reported outcomes (2nd ed., pp. 77–108). West Sussex: Wiley.Google Scholar
  9. 9.
    Irwin, D. E., Stucky, B. D., Thissen, D., Dewitt, E. M., Lai, J. S., Yeatts, K., et al. (2010). Sampling plan and patient characteristics of the PROMIS pediatrics large-scale survey. Quality of Life Research, 19(4), 585–594.CrossRefPubMedPubMedCentralGoogle Scholar
  10. 10.
    Liu, H., Cella, D., Gershon, R., Shen, J., Morales, L. S., Riley, W., & Hays, R. D. (2010). Representativeness of the Patient-Reported Outcomes Measurement Information System Internet panel. Journal of Clinical Epidemiology, 63(11), 1169–1178.CrossRefPubMedPubMedCentralGoogle Scholar
  11. 11.
    Cella, D., Riley, W., Stone, A., Rothrock, N., Reeve, B., Yount, S., et al. (2010). The Patient-Reported Outcomes Measurement Information System (PROMIS) developed and tested its first wave of adult self-reported health outcome item banks: 2005–2008. Journal of Clinical Epidemiology, 63(11), 1179–1194.CrossRefPubMedPubMedCentralGoogle Scholar
  12. 12.
    Bethell, C. D., Read, D., Stein, R. E., Blumberg, S. J., Wells, N., & Newacheck, P. W. (2002). Identifying children with special health care needs: Development and evaluation of a short screening instrument. Ambulatory Pediatrics, 2(1), 38–48.CrossRefPubMedGoogle Scholar
  13. 13.
    Reeve, B., Thissen, D., DeWalt, D., Huang, I. C., Liu, Y., Magnus, B., et al. (2015). Linkage between the PROMIS® pediatric and adult emotional distress measures. Quality of Life Research. doi: 10.1007/s11136-015-1143-z.PubMedCentralGoogle Scholar
  14. 14.
    Mulvihill, B. A., Altarac, M., Swaminathan, S., Kirby, R. S., Kulczycki, A., & Ellis, D. E. (2007). Does access to a medical home differ according to child and family characteristics, including special-health-care-needs status, among children in Alabama? Pediatrics, 119(Supplement 1), S107–S113.CrossRefPubMedGoogle Scholar
  15. 15.
    Schmidt, S., Thyen, U., Petersen, C., & Bullinger, M. (2004). The performance of the screener to identify children with special health care needs in a European sample of children with chronic conditions. European Journal of Pediatrics, 163(9), 517–523.CrossRefPubMedGoogle Scholar
  16. 16.
    Carle, A. C., Blumberg, S. J., & Poblenz, C. (2011). Internal psychometric properties of the children with special health care needs screener. Academic Pediatric, 11(2), 128–135.CrossRefGoogle Scholar
  17. 17.
    Bethell, C. D., Blumberg, S. J., Stein, R. E., Strickland, B., Robertson, J., & Newacheck, P. W. (2015). Taking stock of the CSHCN screener: A review of common questions and current reflections. Academic Pediatric, 15(2), 165–176.CrossRefGoogle Scholar
  18. 18.
    DeWitt, E. M., Stucky, B. D., Thissen, D., Irwin, D. E., Langer, M., Varni, J. W., et al. (2011). Construction of the eight-item patient-reported outcomes measurement information system pediatric physical function scales: Built using item response theory. Journal of Clinical Epidemiology, 64(7), 794–804.CrossRefPubMedPubMedCentralGoogle Scholar
  19. 19.
    Cella, D., Riley, W., Stone, A., Rothrock, N., Reeve, B., Yount, S., et al. (2010). The Patient-Reported Outcomes Measurement Information System (PROMIS) developed and tested its first wave of adult self-reported health outcome item banks: 2005–2008. Journal of Clinical Epidemiology, 63(11), 1179–1194.CrossRefPubMedPubMedCentralGoogle Scholar
  20. 20.
    Canty-Mitchell, J., Austin, J. K., Perkins, S. M., Qi, R. A., & Swigonski, N. (2005). Health-related quality of life in publicly insured children with special health care needs. Child Health Care, 34(1), 1–18.CrossRefGoogle Scholar
  21. 21.
    Gandhi, P. K., Thompson, L. A., Tuli, S. Y., Revicki, D. A., Shenkman, E., & Huang, I. C. (2014). Developing item banks for measuring pediatric generic health-related quality of life: An application of the international classification of functioning, disability and health for children and youth and item response theory. PLoS One, 9(9), e107771.CrossRefPubMedPubMedCentralGoogle Scholar
  22. 22.
    Huang, I. C., Thompson, L. A., Chi, Y. Y., Knapp, C. A., Revicki, D. A., Seid, M., & Shenkman, E. A. (2009). The linkage between pediatric quality of life and health conditions: Establishing clinically meaningful cutoff scores for the PedsQL. Value Health, 12(5), 773–781.CrossRefPubMedPubMedCentralGoogle Scholar
  23. 23.
    Hahn, E. A., DeWalt, D. A., Bode, R. K., Garcia, S. F., DeVellis, R. F., Correia, H., et al. (2014). New English and Spanish social health measures will facilitate evaluating health determinants. Health Psychology, 33(5), 490–499.CrossRefPubMedPubMedCentralGoogle Scholar
  24. 24.
    Stam, H., Hartman, E. E., Deurloo, J. A., Groothoff, J., & Grootenhuis, M. A. (2006). Young adult patients with a history of pediatric disease: Impact on course of life and transition into adulthood. Journal of Adolescent Health, 39(1), 4–13.CrossRefPubMedGoogle Scholar
  25. 25.
    Crain, W. (2010). Theories of development: Concepts and applications (6th ed.). Oxfordshire: Psychology Press.Google Scholar
  26. 26.
    Kennedy, J., Roll, J. M., Schraudner, T., Murphy, S., & McPherson, S. (2014). Prevalence of persistent pain in the U.S. adult population: New data from the 2010 national health interview survey. The Journal of Pain, 15(10), 979–984.CrossRefPubMedGoogle Scholar
  27. 27.
    King, S., Chambers, C. T., Huguet, A., MacNevin, R. C., McGrath, P. J., Parker, L., & MacDonald, A. J. (2011). The epidemiology of chronic pain in children and adolescents revisited: A systematic review. Pain, 152(12), 2729–2738.CrossRefPubMedGoogle Scholar

Copyright information

© Springer International Publishing Switzerland 2016

Authors and Affiliations

  • Carrie R. Howell
    • 1
  • Heather E. Gross
    • 2
  • Bryce B. Reeve
    • 2
    • 3
  • Darren A. DeWalt
    • 2
    • 4
  • I-Chan Huang
    • 1
  1. 1.Department of Epidemiology and Cancer Control, MS 735St. Jude Children’s Research HospitalMemphisUSA
  2. 2.Cecil G. Sheps Center for Health Services ResearchUniversity of North Carolina at Chapel HillChapel HillUSA
  3. 3.Department of Health Policy and Management, Gillings School of Global Public HealthUniversity of North Carolina at Chapel HillChapel HillUSA
  4. 4.Department of Medicine, School of MedicineUniversity of North Carolina at Chapel HillChapel HillUSA

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