Top

Quality of Life Research

Gepubliceerd in:

01-07-2016 | Brief Communication

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

Auteurs: Carrie R. Howell, Heather E. Gross, Bryce B. Reeve, Darren A. DeWalt, I-Chan Huang

Gepubliceerd in: Quality of Life Research | Uitgave 7/2016

Abstract

Purpose

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.

Methods

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.

Results

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).

Conclusions

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

vorige artikel The PROMIS FatigueFM Profile: a self-report measure of fatigue for use in fibromyalgia

volgende artikel Translation, validity and reliability of the British Sign Language (BSL) version of the EQ-5D-5L

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.CrossRefPubMed

Scal, P., & Ireland, M. (2005). Addressing transition to adult health care for adolescents with special health care needs. Pediatrics, 115(6), 1607–1612.CrossRefPubMed

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.CrossRefPubMed

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.CrossRefPubMedPubMedCentral

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.CrossRef

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.CrossRefPubMedPubMedCentral

Ader, D. N. (2007). Developing the Patient-Reported Outcomes Measurement Information System (PROMIS). Medical Care, 45(5), S1–S2.CrossRef

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.

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.CrossRefPubMedPubMedCentral

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.CrossRefPubMedPubMedCentral

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.CrossRefPubMedPubMedCentral

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.CrossRefPubMed

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.PubMedCentral

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.CrossRefPubMed

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.CrossRefPubMed

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.CrossRef

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.CrossRef

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.CrossRefPubMedPubMedCentral

19.

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.CrossRef

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.CrossRefPubMedPubMedCentral

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.CrossRefPubMedPubMedCentral

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.CrossRefPubMedPubMedCentral

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.CrossRefPubMed

25.

Crain, W. (2010). Theories of development: Concepts and applications (6th ed.). Oxfordshire: Psychology Press.

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.CrossRefPubMed

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.CrossRefPubMed

Titel: Known-groups validity of the Patient-Reported Outcomes Measurement Information System (PROMIS®) in adolescents and young adults with special healthcare needs
Auteurs: Carrie R. Howell
Heather E. Gross
Bryce B. Reeve
Darren A. DeWalt
I-Chan Huang
Publicatiedatum: 01-07-2016
Uitgeverij: Springer International Publishing
Gepubliceerd in: Quality of Life Research / Uitgave 7/2016
Print ISSN: 0962-9343
Elektronisch ISSN: 1573-2649
DOI: https://doi.org/10.1007/s11136-016-1237-2

Bohn Stafleu van Loghum

Deel dit onderdeel of sectie (kopieer de link)

Abstract

Purpose

Methods

Results

Conclusions

Log in om toegang te krijgen

Andere artikelen Uitgave 7/2016

Translation, validity and reliability of the British Sign Language (BSL) version of the EQ-5D-5L

Demographics, social position, dental status and oral health-related quality of life in community-dwelling older adults

The current practice of handling and reporting missing outcome data in eight widely used PROMs in RCT publications: a review of the current literature

Discrepancies between the Dermatology Life Quality Index and utility scores

Prognostic value of health-related quality of life in patients with metastatic pancreatic adenocarcinoma: a random forest methodology

Determinants of time trade-off valuations for EQ-5D-5L health states: data from the Canadian EQ-5D-5L valuation study