Skip to main content
SpringerLink
Log in

An examination of the PROMIS® pediatric instruments to assess mobility in children with cerebral palsy

  • Published:
Quality of Life Research Aims and scope Submit manuscript

Abstract

Purpose

The Patient-Reported Outcomes Measurement Information System (PROMIS®) provides adult and pediatric self-report measures of health-related quality of life designed for use across medical conditions and the general population. The purpose of this study was to examine the feasibility and validity of the PROMIS® Pediatric Short Form and computer-adaptive test (CAT) mobility measures in children with cerebral palsy (CP).

Methods

Eighty-two children with CP completed self-report (PROMIS® Mobility Short Form, PROMIS® Mobility CAT, Pediatric Quality of Life Inventory™) and performance-based assessments of mobility (Timed Up and Go, Gross Motor Function Measure). Parents provided three proxy reports of child mobility (Pediatric Outcomes Data Collection Instrument, Functional Assessment Questionnaire, Shriners Hospitals for Children CP-CAT). Validity of PROMIS® instruments was examined through correlations with other measures and “known groups” analyses determined by Gross Motor Function Classification System (GMFCS).

Results

On average, the PROMIS® CAT required less than seven items and 2 minutes to administer. Both PROMIS® measures showed moderate to high correlations with child- and parent-proxy report of child mobility; correlations with performance-based measure were small for the PROMIS® Short Form and non-significant for the PROMIS® CAT. All measures except for the PROMIS® CAT were able to distinguish between GMFCS categories.

Conclusions

Results support the convergent and discriminant validity of the pediatric PROMIS® Mobility Short Form in children with CP. The PROMIS® Mobility CAT correlates well with child report and parent report of mobility but not with performance-based measures and does not differentiate between known mobility groups.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Log in via an institution

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Institutional subscriptions

Fig. 1

Similar content being viewed by others

References

  1. Newacheck, P. W., Strickland, B., Shonkoff, J. P., Perrin, J. M., McPherson, M., McManus, M., et al. (1998). An epidemiologic profile of children with special health care needs. Pediatrics, 102(1 Pt 1), 117–123.

    Article  PubMed  CAS  Google Scholar 

  2. Services, U. D. o. H. a. H. (1996). National Health Interview Survey: Appendix III, questionnaires and flashcards (pp. 141–163). USA: National Center for Health Statistics.

    Google Scholar 

  3. Bhushan, V., Paneth, N., & Kiely, J. L. (1993). Impact of improved survival of very low birth weight infants on recent secular trends in the prevalence of cerebral palsy. Pediatrics, 91(6), 1094–1100.

    PubMed  CAS  Google Scholar 

  4. Health, N. I. o. (2012). www.clinicaltrials.gov. from www.clinicaltrials.gov.

  5. Sanders, J. O., McConnell, S. L., King, R., Lanford, A., Montpetit, K., Gates, P., et al. (2006). A prospective evaluation of the WeeFIM in patients with cerebral palsy undergoing orthopaedic surgery. Journal of Pediatric Orthopedics, 26(4), 542–546.

    Article  PubMed  Google Scholar 

  6. Cuomo, A. V., Gamradt, S. C., Kim, C. O., Pirpiris, M., Gates, P. E., McCarthy, J. J., et al. (2007). Health-related quality of life outcomes improve after multilevel surgery in ambulatory children with cerebral palsy. Journal of Pediatric Orthopedics, 27(6), 653–657.

    Article  PubMed  Google Scholar 

  7. Rebok, G., Riley, A., Forrest, C., Starfield, B., Green, B., Robertson, J., et al. (2001). Elementary school-aged children’s reports of their health: A cognitive interviewing study. Quality of Life Research, 10(1), 59–70.

    Article  PubMed  CAS  Google Scholar 

  8. Mulcahey, M. J., Chafetz, R. S., Santangelo, A. M., Costello, K., Merenda, L. A., Calhoun, C., et al. (2011). Cognitive testing of the spinal appearance questionnaire with typically developing youth and youth with idiopathic scoliosis. Journal of Pediatric Orthopedics, 31(6), 661–667.

    Article  PubMed  Google Scholar 

  9. 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.

    Article  PubMed  Google Scholar 

  10. Cella, D., Yount, S., Rothrock, N., Gershon, R., Cook, K., Reeve, B., et al. (2007). The Patient-Reported Outcomes Measurement Information System (PROMIS): Progress of an NIH Roadmap cooperative group during its first two years. Medical Care, 45(5 Suppl 1), S3–S11.

    Article  PubMed  Google Scholar 

  11. Irwin, D. E., Gross, H. E., Stucky, B. D., Thissen, D., Morgan Dewitt, E., Lai, J. S., et al. (2012). Development of six PROMIS pediatrics proxy-report item banks. Health Qual Life Outcomes, 10(1), 22.

    Article  PubMed  Google Scholar 

  12. Irwin, D. E., Stucky, B., Langer, M. M., Thissen, D., Dewitt, E. M., Lai, J. S., et al. (2010). An item response analysis of the pediatric PROMIS anxiety and depressive symptoms scales. Quality of Life Research, 19(4), 595–607.

    Article  PubMed  Google Scholar 

  13. Irwin, D. E., Stucky, B. D., Langer, M. M., Thissen, D., Dewitt, E. M., Lai, J. S., Yeatts, K. B., Varni, J. W., & Dewalt, D. A. (2011). PROMIS Pediatric Anger Scale: An item response theory analysis. Quality of Life Research, 21(4), 697–706.

  14. Varni, J. W., Burwinkle, T. M., Berrin, S. J., Sherman, S. A., Artavia, K., Malcarne, V. L., et al. (2006). The PedsQL in pediatric cerebral palsy: Reliability, validity, and sensitivity of the Generic Core Scales and Cerebral Palsy Module. Developmental Medicine and Child Neurology, 48(6), 442–449.

    Article  PubMed  Google Scholar 

  15. 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.

    Article  PubMed  Google Scholar 

  16. Magasi, S., Ryan, G., Revicki, D., Lenderking, W., Hays, R. D., Brod, M., et al. (2012). Content validity of patient-reported outcome measures: Perspectives from a PROMIS meeting. Quality of Life Research, 21(5), 739–746.

    Article  PubMed  Google Scholar 

  17. 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.

    Article  PubMed  Google Scholar 

  18. Hinds, P. S., Nuss, S. L., Ruccione, K. S., Withycombe, J. S., Jacobs, S., Deluca, H., et al. (2013). PROMIS pediatric measures in pediatric oncology: Valid and clinically feasible indicators of patient-reported outcomes. Pediatric Blood & Cancer, 60(3), 402–408.

    Article  Google Scholar 

  19. Varni, J. W., Seid, M., & Kurtin, P. S. (2001). PedsQL 4.0: Reliability and validity of the Pediatric Quality of Life Inventory version 4.0 generic core scales in healthy and patient populations. Medical Care, 39(8), 800–812.

    Article  PubMed  CAS  Google Scholar 

  20. Tucker, C. A., Haley, S. M., Dumas, H. M., Fragala-Pinkham, M. A., Watson, K., Gorton, G. E., et al. (2008). Physical function for children and youth with cerebral palsy: Item bank development for computer adaptive testing. Journal of Pediatric Rehabilitation Medicine, 1(3), 245–253.

    PubMed  Google Scholar 

  21. Novacheck, T. F., Stout, J. L., & Tervo, R. (2000). Reliability and validity of the Gillette Functional Assessment Questionnaire as an outcome measure in children with walking disabilities. Journal of Pediatric Orthopedics, 20(1), 75–81.

    PubMed  CAS  Google Scholar 

  22. Daltroy, L. H., Liang, M. H., Fossel, A. H., & Goldberg, M. J. (1998). The POSNA pediatric musculoskeletal functional health questionnaire: Report on reliability, validity, and sensitivity to change. Pediatric Outcomes Instrument Development Group. Pediatric Orthopaedic Society of North America. Journal of Pediatric Orthopedics, 18(5), 561–571.

    PubMed  CAS  Google Scholar 

  23. Dumas, H. M., Watson, K., Fragala-Pinkham, M. A., Haley, S. M., Bilodeau, N., Montpetit, K., et al. (2008). Using cognitive interviewing for test items to assess physical function in children with cerebral palsy. Pediatric Physical Therapy, 20(4), 356–362.

    Article  PubMed  Google Scholar 

  24. Haley, S. M., Chafetz, R. S., Tian, F., Montpetit, K., Watson, K., Gorton, G., et al. (2010). Validity and reliability of physical functioning computer-adaptive tests for children with cerebral palsy. Journal of Pediatric Orthopedics, 30(1), 71–75.

    Article  PubMed  Google Scholar 

  25. Haley, S. M., Ni, P., Dumas, H. M., Fragala-Pinkham, M. A., Hambleton, R. K., Montpetit, K., et al. (2009). Measuring global physical health in children with cerebral palsy: Illustration of a multidimensional bi-factor model and computerized adaptive testing. Quality of Life Research, 18(3), 359–370.

    Article  PubMed  Google Scholar 

  26. Podsiadlo, D., & Richardson, S. (1991). The timed “Up & Go”: a test of basic functional mobility for frail elderly persons. Journal of the American Geriatrics Society, 39(2), 142–148.

    PubMed  CAS  Google Scholar 

  27. Russell, D. J., Rosenbaum, P. L., Avery, L. M., & Lane, M. (2002). Gross motor function measure (GMFM-66 & GMFM-88) user’s manual. London: Mac Keith Press.

    Google Scholar 

  28. Williams, E. N., Carroll, S. G., Reddihough, D. S., Phillips, B. A., & Galea, M. P. (2005). Investigation of the timed ‘up & go’ test in children. Developmental Medicine and Child Neurology, 47(8), 518–524.

    Article  PubMed  Google Scholar 

  29. Russell, D. J., Avery, L. M., Rosenbaum, P. L., Raina, P. S., Walter, S. D., & Palisano, R. J. (2000). Improved scaling of the gross motor function measure for children with cerebral palsy: Evidence of reliability and validity. Physical Therapy, 80(9), 873–885.

    PubMed  CAS  Google Scholar 

  30. Palisano, R., Rosenbaum, P., Bartlett, D. J., & Livingston, M. (2007). GMFCS—E&R: Gross motor function classification system expanded and revised. Retrieved February 15, 2013, from http://motorgrowth.canchild.ca/en/GMFCS/resources/GMFCS-ER.pdf.

  31. Palisano, R., Rosenbaum, P., Walter, S., Russell, D., Wood, E., & Galuppi, B. (1997). Development and reliability of a system to classify gross motor function in children with cerebral palsy. Developmental Medicine and Child Neurology, 39(4), 214–223.

    PubMed  CAS  Google Scholar 

  32. Palisano, R. J., Rosenbaum, P., Bartlett, D., & Livingston, M. H. (2008). Content validity of the expanded and revised gross motor function classification system. Developmental Medicine and Child Neurology, 50(10), 744–750.

    Article  PubMed  Google Scholar 

  33. Bodkin, A. W., Robinson, C., & Perales, F. P. (2003). Reliability and validity of the gross motor function classification system for cerebral palsy. Pediatric Physical Therapy, 15(4), 247–252.

    Article  PubMed  Google Scholar 

  34. Wood, E., & Rosenbaum, P. (2000). The gross motor function classification system for cerebral palsy: A study of reliability and stability over time. Developmental Medicine and Child Neurology, 42(5), 292–296.

    Article  PubMed  CAS  Google Scholar 

  35. Palisano, R. J., Hanna, S. E., Rosenbaum, P. L., Russell, D. J., Walter, S. D., Wood, E. P., et al. (2000). Validation of a model of gross motor function for children with cerebral palsy. Physical Therapy, 80(10), 974–985.

    PubMed  CAS  Google Scholar 

  36. Cronbach, L. J. (1951). Coefficient alpha and the internal structure of tests. Psychometrika, 16(3), 297–334.

    Article  Google Scholar 

  37. Kennedy, J., Brown, T., & Chien, C. W. (2012). Motor skill assessment of children: Is there an association between performance-based, child-report, and parent-report measures of children’s motor skills? Physical & Occupational Therapy in Pediatrics, 32(2), 196–209.

    Article  Google Scholar 

  38. Theunissen, N. C., Vogels, T. G., Koopman, H. M., Verrips, G. H., Zwinderman, K. A., Verloove-Vanhorick, S. P., et al. (1998). The proxy problem: child report versus parent report in health-related quality of life research. Quality of Life Research, 7(5), 387–397.

    Article  PubMed  CAS  Google Scholar 

  39. Davis, E., Nicolas, C., Waters, E., Cook, K., Gibbs, L., Gosch, A., et al. (2007). Parent-proxy and child self-reported health-related quality of life: Using qualitative methods to explain the discordance. Quality of Life Research, 16(5), 863–871.

    Article  PubMed  Google Scholar 

  40. Sheffler, L. C., Hanley, C., Bagley, A., Molitor, F., & James, M. A. (2009). Comparison of self-reports and parent proxy-reports of function and quality of life of children with below-the-elbow deficiency. Journal of Bone and Joint Surgery. American Volume, 91(12), 2852–2859.

    Article  Google Scholar 

  41. Brown, T. (2012). Are performance-based and self-report measures of children’s motor skill abilities linked? Occupational Therapy in Health Care, 26(4), 283–305.

    Article  PubMed  Google Scholar 

  42. Drennan, J. (2003). Cognitive interviewing: verbal data in the design and pretesting of questionnaires. Journal of Advanced Nursing, 42(1), 57–63.

    Article  PubMed  Google Scholar 

  43. Mulcahey, M. J., Calhoun, C., Riley, A., & Haley, S. M. (2009). Children’s reports of activity and participation after sustaining a spinal cord injury: A cognitive interviewing study. Developmental Neurorehabilitation, 12(4), 191–200.

    Article  PubMed  CAS  Google Scholar 

  44. Khanna, D., Maranian, P., Rothrock, N., Cella, D., Gershon, R., Khanna, P. P., et al. (2012). Feasibility and construct validity of PROMIS and “legacy” instruments in an academic scleroderma clinic. Value Health, 15(1), 128–134.

    Article  PubMed  Google Scholar 

Download references

Acknowledgments

The Patient-Reported Outcomes Measurement Information System (PROMIS®) is an NIH Roadmap initiative to develop a computerized system measuring PROs in respondents with a wide range of chronic diseases and demographic characteristics. PROMIS® II was funded by cooperative agreements with a Statistical Center (Northwestern University, PI: David Cella, PhD, 1U54AR057951), a Technology Center (Northwestern University, PI: Richard C. Gershon, PhD, 1U54AR057943), a Network Center (American Institutes for Research, PI: Susan (San) D. Keller, PhD, 1U54AR057926) and thirteen Primary Research Sites which may include more than one institution (State University of New York, Stony Brook, PIs: Joan E. Broderick, PhD and Arthur A. Stone, PhD, 1U01AR057948; University of Washington, Seattle, PIs: Heidi M. Crane, MD, MPH, Paul K. Crane, MD, MPH, and Donald L. Patrick, PhD, 1U01AR057954; University of Washington, Seattle, PIs: Dagmar Amtmann, PhD and Karon Cook, PhD, 1U01AR052171; University of North Carolina, Chapel Hill, PI: Darren A. DeWalt, MD, MPH, 2U01AR052181; Children’s Hospital of Philadelphia, PI: Christopher B. Forrest, MD, PhD, 1U01AR057956; Stanford University, PI: James F. Fries, MD, 2U01AR052158; Boston University, PIs: Alan Jette, PhD and David Scott Tulsky, PhD (University of Michigan, Ann Arbor), 1U01AR057929; University of California, Los Angeles, PIs: Dinesh Khanna, MD and Brennan Spiegel, MD, MSHS, 1U01AR057936; University of Pittsburgh, PI: Paul A. Pilkonis, PhD, 2U01AR052155; 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, 1U01AR057940; University of Maryland, Baltimore, PI: Lisa M. Shulman, MD, 1U01AR057967; and Duke University, PI: Kevin P. Weinfurt, PhD, 2U01AR052186). NIH Science Officers on this project have included Deborah Ader, PhD, Vanessa Ameen, MD, 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, Ashley Wilder Smith, PhD, MPH, Susana Serrate-Sztein,MD, Ellen Werner, PhD and James Witter, MD, PhD. This manuscript was reviewed by PROMIS® reviewers before submission for external peer review. See the Web site at www.nihpromis.org for additional information on the PROMIS initiative. The content of this manuscript is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health. Partial funding for this study was also provided by the Shriners Hospitals for Children Grant# 79120 (Mulcahey, PI). The Shriners Hospital for Children Philadelphia, Chicago, Montreal, Houston, Greenville and Portland Hospitals are acknowledged for their support in data collection.

Author information

Authors and Affiliations

  1. Department of Physical Medicine and Rehabilitation, University of Michigan, 325 E. Eisenhower Parkway, Suite 300, Ann Arbor, MI, USA

    Anna L. Kratz

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

    Mary D. Slavin, Alan M. Jette & Stephen M. Haley

  3. Jefferson School of Health Professions, Thomas Jefferson University, Philadelphia, PA, USA

    M. J. Mulcahey

  4. Department of Physical Medicine and Rehabilitation, The Center for Rehabilitation Outcomes and Assessment Research, University of Michigan, Ann Arbor, MI, USA

    David S. Tulsky

Authors
  1. Anna L. Kratz
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Mary D. Slavin
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. M. J. Mulcahey
    View author publications

    You can also search for this author in PubMed Google Scholar

  4. Alan M. Jette
    View author publications

    You can also search for this author in PubMed Google Scholar

  5. David S. Tulsky
    View author publications

    You can also search for this author in PubMed Google Scholar

  6. Stephen M. Haley
    View author publications

    You can also search for this author in PubMed Google Scholar

Corresponding author

Correspondence to Anna L. Kratz.

Additional information

Stephen M. Haley: Deceased.

Rights and permissions

Reprints and permissions

About this article

Cite this article

Kratz, A.L., Slavin, M.D., Mulcahey, M.J. et al. An examination of the PROMIS® pediatric instruments to assess mobility in children with cerebral palsy. Qual Life Res 22, 2865–2876 (2013). https://doi.org/10.1007/s11136-013-0397-6

Download citation

  • Accepted:

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s11136-013-0397-6

Keywords

Search

Navigation