Skip to main content
Mijn bibliotheek
Shop
Nieuws Boeken Tijdschriften E-learning Web-tv Video Audio
Tips voor Mijn BSL
UITGEBREID ZOEKEN
Inloggen
Top
Quality of Life Research
Gepubliceerd in: Quality of Life Research 10/2013

01-12-2013

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

Auteurs: Anna L. Kratz, Mary D. Slavin, M. J. Mulcahey, Alan M. Jette, David S. Tulsky, Stephen M. Haley

Gepubliceerd in: Quality of Life Research | Uitgave 10/2013

Log in om toegang te krijgen
share
DELEN

Deel dit onderdeel of sectie (kopieer de link)

  • Optie A:
    Klik op de rechtermuisknop op de link en selecteer de optie “linkadres kopiëren”
  • Optie B:
    Deel de link per e-mail
    Link delen
publish
Publiceer nu

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.
vorige artikel Factor analyses of the Hospital Anxiety and Depression Scale: a Bayesian structural equation modeling approach
volgende artikel The development and validation of a health-related quality of life questionnaire for pre-school children with a chronic heart disease
Literatuur
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.PubMedCrossRef
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.
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
4.
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.PubMedCrossRef
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.PubMedCrossRef
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.PubMedCrossRef
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.PubMedCrossRef
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.PubMedCrossRef
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.PubMedCrossRef
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.PubMedCrossRef
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.PubMedCrossRef
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.PubMedCrossRef
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.PubMedCrossRef
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.PubMedCrossRef
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.PubMedCrossRef
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.CrossRef
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.PubMedCrossRef
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
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
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
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.PubMedCrossRef
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.PubMedCrossRef
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.PubMedCrossRef
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
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.
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.PubMedCrossRef
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
30.
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
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.PubMedCrossRef
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.PubMedCrossRef
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.PubMedCrossRef
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
36.
Cronbach, L. J. (1951). Coefficient alpha and the internal structure of tests. Psychometrika, 16(3), 297–334.CrossRef
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.CrossRef
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.PubMedCrossRef
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.PubMedCrossRef
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.CrossRef
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.PubMedCrossRef
42.
Drennan, J. (2003). Cognitive interviewing: verbal data in the design and pretesting of questionnaires. Journal of Advanced Nursing, 42(1), 57–63.PubMedCrossRef
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.PubMedCrossRef
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.PubMedCrossRef
Metagegevens
Titel
An examination of the PROMIS® pediatric instruments to assess mobility in children with cerebral palsy
Auteurs
Anna L. Kratz
Mary D. Slavin
M. J. Mulcahey
Alan M. Jette
David S. Tulsky
Stephen M. Haley
Publicatiedatum
01-12-2013
Uitgeverij
Springer Netherlands
Gepubliceerd in
Quality of Life Research / Uitgave 10/2013
Print ISSN: 0962-9343
Elektronisch ISSN: 1573-2649
DOI
https://doi.org/10.1007/s11136-013-0397-6

Andere artikelen Uitgave 10/2013

Quality of Life Research 10/2013 Naar de uitgave

OriginalPaper

Mindfulness: a systematic review of instruments to measure an emergent patient-reported outcome (PRO)

OriginalPaper

The health-related quality-of-life impact of nocturnal awakenings in the middle-aged and older Finnish population

OriginalPaper

Utility of the PedsQL™ family impact module: assessing the psychometric properties in a community sample

OriginalPaper

Guidelines for secondary analysis in search of response shift

OriginalPaper

Mapping CushingQOL scores to EQ-5D utility values using data from the European Registry on Cushing’s syndrome (ERCUSYN)

Brief Communication

Validation of the Chinese version of the Summated Xerostomia Inventory (SXI)