Skip to main content
Top
Gepubliceerd in:

17-11-2020

Using nationally representative percentiles to interpret PROMIS pediatric measures

Auteurs: Adam C. Carle, Katherine B. Bevans, Carole A. Tucker, Christopher B. Forrest

Gepubliceerd in: Quality of Life Research | Uitgave 4/2021

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

Abstract

Purpose

This study’s aim was to use a representative sample of the US pediatric population to estimate percentiles for several PROMIS pediatric measures: Anger, Anxiety, Depressive Symptoms, Family Relationships, Fatigue, Global Health, Life Satisfaction, Meaning and Purpose, Pain Behavior, Pain Interference, Physical Activity, Physical Function Mobility, Physical Function Upper Extremity, Physical Stress Experiences, Positive Affect, Psychological Stress Experiences, Sleep Disturbance, Sleep Impairment, and Peer Relationships.

Methods

We used two separate, nationally representative samples of parents and children aged 5–17 years drawn in different years from the GfK Knowledge Panel, a dual-frame online probability panel.

Results

All measures that were developed using a representative sample had a median at or near the expected value of 50. For the other measures, the 50th percentile was often 10 points or more from 50. Several domains had high floors or low ceilings. No domain’s percentiles completely corresponded to the percentiles associated with a normal distribution with a mean of 50 and standard deviation of 10.

Conclusions

This work allows users to interpret a child’s self-reported quality of life relative to children in the US general population. When attempting to evaluate whether a child falls above or below other children in the US, one should use the values presented in this study. In addition, we recommend that users should focus on whether a child’s score falls into one of a few broad severity groups rather than on specific percentile scores.
Bijlagen
Alleen toegankelijk voor geautoriseerde gebruikers
Literatuur
1.
go back to reference 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.CrossRef 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.CrossRef
2.
go back to reference Reeve, B. B., Hays, R. D., Bjorner, J. B., Cook, K. F., Crane, P. K., Teresi, J. A., et al. (2007). Psychometric evaluation and calibration of health-related quality of life item banks: plans for the Patient-Reported Outcomes Measurement Information System (PROMIS). Medical Care, 45(5 Suppl 1), S22–S31.CrossRef Reeve, B. B., Hays, R. D., Bjorner, J. B., Cook, K. F., Crane, P. K., Teresi, J. A., et al. (2007). Psychometric evaluation and calibration of health-related quality of life item banks: plans for the Patient-Reported Outcomes Measurement Information System (PROMIS). Medical Care, 45(5 Suppl 1), S22–S31.CrossRef
3.
go back to reference Bevans, K. B., Riley, A. W., Landgraf, J. M., Carle, A. C., Teneralli, R. E., Fiese, B. H., et al. (2017). Children’s family experiences: Development of the PROMIS® pediatric family relationships measures. Quality of Life Research, 26(11), 3011–3023.CrossRef Bevans, K. B., Riley, A. W., Landgraf, J. M., Carle, A. C., Teneralli, R. E., Fiese, B. H., et al. (2017). Children’s family experiences: Development of the PROMIS® pediatric family relationships measures. Quality of Life Research, 26(11), 3011–3023.CrossRef
4.
go back to reference Forrest, C., Bevans, K., Pratiwadi, R., Moon, J., Teneralli, R., Minton, J., & Tucker, C. (2014). Development of the PROMIS® pediatric global health (PGH-7) measure. Quality of Life Research, 23(4), 1221–1231.CrossRef Forrest, C., Bevans, K., Pratiwadi, R., Moon, J., Teneralli, R., Minton, J., & Tucker, C. (2014). Development of the PROMIS® pediatric global health (PGH-7) measure. Quality of Life Research, 23(4), 1221–1231.CrossRef
5.
go back to reference Broderick, J., Morgan DeWitt, E., Rothrock, N., Crane, P., & Forrest, C. (2013). Advances in patient reported outcomes: The NIH PROMIS measures. eGEMs (Generating Evidence & Methods to Improve Patient Outcomes), 1(1), 1015.CrossRef Broderick, J., Morgan DeWitt, E., Rothrock, N., Crane, P., & Forrest, C. (2013). Advances in patient reported outcomes: The NIH PROMIS measures. eGEMs (Generating Evidence & Methods to Improve Patient Outcomes), 1(1), 1015.CrossRef
6.
go back to reference Forrest, C. B., Bevans, K. B., Tucker, C., Riley, A. W., Ravens-Sieberer, U., Gardner, W., & Pajer, K. (2012). Commentary: The Patient-Reported Outcome Measurement Information System (PROMIS®) for children and youth: Application to pediatric psychology. Journal of Pediatric Psychology, 37(6), 614–621.CrossRef Forrest, C. B., Bevans, K. B., Tucker, C., Riley, A. W., Ravens-Sieberer, U., Gardner, W., & Pajer, K. (2012). Commentary: The Patient-Reported Outcome Measurement Information System (PROMIS®) for children and youth: Application to pediatric psychology. Journal of Pediatric Psychology, 37(6), 614–621.CrossRef
7.
go back to reference Jacobson, C. J., Kashikar-Zuck, S., Farrell, J. E., Barnett, K., Goldschneider, K., Dampier, C., et al. (2015). Qualitative evaluation of pediatric pain behavior, quality, and intensity item candidates and the PROMIS pain domain framework in children with chronic pain. Journal of Pain, 16(12), 1243–1255.CrossRef Jacobson, C. J., Kashikar-Zuck, S., Farrell, J. E., Barnett, K., Goldschneider, K., Dampier, C., et al. (2015). Qualitative evaluation of pediatric pain behavior, quality, and intensity item candidates and the PROMIS pain domain framework in children with chronic pain. Journal of Pain, 16(12), 1243–1255.CrossRef
8.
go back to reference DeWalt, D. A., Gross, H. E., Gipson, D. S., Selewski, D. T., DeWitt, E. M., Dampier, C. D., et al. (2015). PROMIS® pediatric self-report scales distinguish subgroups of children within and across six common pediatric chronic health conditions. Quality of Life Research, 24(9), 2195–2208.CrossRef DeWalt, D. A., Gross, H. E., Gipson, D. S., Selewski, D. T., DeWitt, E. M., Dampier, C. D., et al. (2015). PROMIS® pediatric self-report scales distinguish subgroups of children within and across six common pediatric chronic health conditions. Quality of Life Research, 24(9), 2195–2208.CrossRef
9.
go back to reference DeWalt, D. A., Thissen, D., Stucky, B. D., Langer, M. M., Morgan DeWitt, E., Irwin, D. E., et al. (2013). PROMIS Pediatric Peer Relationships Scale: Development of a peer relationships item bank as part of social health measurement. Health Psychology, 32(10), 1093.CrossRef DeWalt, D. A., Thissen, D., Stucky, B. D., Langer, M. M., Morgan DeWitt, E., Irwin, D. E., et al. (2013). PROMIS Pediatric Peer Relationships Scale: Development of a peer relationships item bank as part of social health measurement. Health Psychology, 32(10), 1093.CrossRef
10.
go back to reference Varni, J. W., Thissen, D., Stucky, B. D., Liu, Y., Gorder, H., Irwin, D. E., et al. (2012). PROMIS® Parent Proxy Report Scales: An item response theory analysis of the parent proxy report item banks. Quality of Life Research, 21(7), 1223–1240.CrossRef Varni, J. W., Thissen, D., Stucky, B. D., Liu, Y., Gorder, H., Irwin, D. E., et al. (2012). PROMIS® Parent Proxy Report Scales: An item response theory analysis of the parent proxy report item banks. Quality of Life Research, 21(7), 1223–1240.CrossRef
11.
go back to reference Irwin, D. E., Stucky, B. D., Langer, M. M., Thissen, D., DeWitt, E. M., Lai, J.-S., et al. (2012). PROMIS Pediatric Anger Scale: An item response theory analysis. Quality of Life Research, 21(4), 697–706.CrossRef Irwin, D. E., Stucky, B. D., Langer, M. M., Thissen, D., DeWitt, E. M., Lai, J.-S., et al. (2012). PROMIS Pediatric Anger Scale: An item response theory analysis. Quality of Life Research, 21(4), 697–706.CrossRef
12.
go back to reference 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.CrossRef 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.CrossRef
13.
go back to reference Irwin, D. E., Stucky, B. D., Thissen, D., DeWitt, E. M., Lai, J. S., Yeatts, K., et al. (2010a). Sampling plan and patient characteristics of the PROMIS pediatrics large-scale survey. Quality of Life Research, 19(4), 585–594.CrossRef Irwin, D. E., Stucky, B. D., Thissen, D., DeWitt, E. M., Lai, J. S., Yeatts, K., et al. (2010a). Sampling plan and patient characteristics of the PROMIS pediatrics large-scale survey. Quality of Life Research, 19(4), 585–594.CrossRef
14.
go back to reference Varni, J. W., Stucky, B. D., Thissen, D., Dewitt, E. M., Irwin, D. E., Lai, J. S., et al. (2010). PROMIS Pediatric Pain Interference Scale: An item response theory analysis of the pediatric pain item bank. Journal of Pain, 11(11), 1109–1119.CrossRef Varni, J. W., Stucky, B. D., Thissen, D., Dewitt, E. M., Irwin, D. E., Lai, J. S., et al. (2010). PROMIS Pediatric Pain Interference Scale: An item response theory analysis of the pediatric pain item bank. Journal of Pain, 11(11), 1109–1119.CrossRef
15.
go back to reference Morgan, E. M., Mara, C. A., Huang, B., Barnett, K., Carle, A. C., Farrell, J. E., & Cook, K. F. (2017). Establishing clinical meaning and defining important differences for Patient-Reported Outcomes Measurement Information System (PROMIS®) measures in juvenile idiopathic arthritis using standard setting with patients, parents, and providers. Quality of Life Research, 26(3), 565–586.CrossRef Morgan, E. M., Mara, C. A., Huang, B., Barnett, K., Carle, A. C., Farrell, J. E., & Cook, K. F. (2017). Establishing clinical meaning and defining important differences for Patient-Reported Outcomes Measurement Information System (PROMIS®) measures in juvenile idiopathic arthritis using standard setting with patients, parents, and providers. Quality of Life Research, 26(3), 565–586.CrossRef
16.
go back to reference Forrest, C. B., Ravens-Sieberer, U., Devine, J., Becker, B. D., Teneralli, R. E., Moon, J., et al. (2018). Development and evaluation of the PROMIS® pediatric positive affect item bank, child-report and parent-proxy editions. Journal of happiness studies, 19(3), 699–718.CrossRef Forrest, C. B., Ravens-Sieberer, U., Devine, J., Becker, B. D., Teneralli, R. E., Moon, J., et al. (2018). Development and evaluation of the PROMIS® pediatric positive affect item bank, child-report and parent-proxy editions. Journal of happiness studies, 19(3), 699–718.CrossRef
17.
go back to reference Cunningham, N. R., Kashikar-Zuck, S., Mara, C., Goldschneider, K. R., Revicki, D. A., Dampier, C., et al. (2017). Development and validation of the self-reported PROMIS pediatric pain behavior item bank and short form scale. Pain, 158(7), 1323–1331.CrossRef Cunningham, N. R., Kashikar-Zuck, S., Mara, C., Goldschneider, K. R., Revicki, D. A., Dampier, C., et al. (2017). Development and validation of the self-reported PROMIS pediatric pain behavior item bank and short form scale. Pain, 158(7), 1323–1331.CrossRef
18.
go back to reference Carle, A. C., Cella, D., Cai, L., Choi, S. W., Crane, P. K., Curtis, S. M. K., et al. (2011). Advancing PROMIS’s methodology: Results of the Third Patient-Reported Outcomes Measurement Information System (PROMIS®) Psychometric Summit. Expert Review of Pharmacoeconomics & Outcomes Research, 11(6), 677–684.CrossRef Carle, A. C., Cella, D., Cai, L., Choi, S. W., Crane, P. K., Curtis, S. M. K., et al. (2011). Advancing PROMIS’s methodology: Results of the Third Patient-Reported Outcomes Measurement Information System (PROMIS®) Psychometric Summit. Expert Review of Pharmacoeconomics & Outcomes Research, 11(6), 677–684.CrossRef
19.
go back to reference Gerhardt, W. E., Mara, C. A., Kudel, I., Morgan, E. M., Schoettker, P. J., Napora, J., et al. (2018). Systemwide implementation of patient-reported outcomes in routine clinical care at a children’s hospital. The Joint Commission Journal on Quality and Patient Safety, 44(8), 441–453.CrossRef Gerhardt, W. E., Mara, C. A., Kudel, I., Morgan, E. M., Schoettker, P. J., Napora, J., et al. (2018). Systemwide implementation of patient-reported outcomes in routine clinical care at a children’s hospital. The Joint Commission Journal on Quality and Patient Safety, 44(8), 441–453.CrossRef
21.
go back to reference Crawford, J. R., & Garthwaite, P. H. (2009). Percentiles please: The case for expressing neuropsychological test scores and accompanying confidence limits as percentile ranks. The Clinical Neuropsychologist, 23(2), 193–204.CrossRef Crawford, J. R., & Garthwaite, P. H. (2009). Percentiles please: The case for expressing neuropsychological test scores and accompanying confidence limits as percentile ranks. The Clinical Neuropsychologist, 23(2), 193–204.CrossRef
22.
go back to reference Crawford, J. R., Garthwaite, P. H., & Slick, D. J. (2009). On percentile norms in neuropsychology: Proposed reporting standards and methods for quantifying the uncertainty over the percentile ranks of test scores. The Clinical Neuropsychologist, 23(7), 1173–1195.CrossRef Crawford, J. R., Garthwaite, P. H., & Slick, D. J. (2009). On percentile norms in neuropsychology: Proposed reporting standards and methods for quantifying the uncertainty over the percentile ranks of test scores. The Clinical Neuropsychologist, 23(7), 1173–1195.CrossRef
25.
go back to reference Bevans, K. B., Gardner, W., Pajer, K. A., Becker, B., Carle, A., Tucker, C. A., & Forrest, C. B. (2018). Psychometric evaluation of the PROMIS® pediatric psychological and physical stress experiences measures. Journal of Pediatric Psychology, 43(6), 678–692.CrossRef Bevans, K. B., Gardner, W., Pajer, K. A., Becker, B., Carle, A., Tucker, C. A., & Forrest, C. B. (2018). Psychometric evaluation of the PROMIS® pediatric psychological and physical stress experiences measures. Journal of Pediatric Psychology, 43(6), 678–692.CrossRef
26.
go back to reference Forrest, C. B., Devine, J., Bevans, K. B., Becker, B. D., Carle, A. C., Teneralli, R. E., et al. (2018). Development and psychometric evaluation of the PROMIS Pediatric Life Satisfaction item banks, child-report, and parent-proxy editions. Quality of Life Research, 27(1), 217–234.CrossRef Forrest, C. B., Devine, J., Bevans, K. B., Becker, B. D., Carle, A. C., Teneralli, R. E., et al. (2018). Development and psychometric evaluation of the PROMIS Pediatric Life Satisfaction item banks, child-report, and parent-proxy editions. Quality of Life Research, 27(1), 217–234.CrossRef
27.
go back to reference Lai, J.-S., Stucky, B. D., Thissen, D., Varni, J. W., DeWitt, E. M., Irwin, D. E., et al. (2013). Development and psychometric properties of the PROMIS® pediatric fatigue item banks. Quality of Life Research, 22(9), 2417–2427.CrossRef Lai, J.-S., Stucky, B. D., Thissen, D., Varni, J. W., DeWitt, E. M., Irwin, D. E., et al. (2013). Development and psychometric properties of the PROMIS® pediatric fatigue item banks. Quality of Life Research, 22(9), 2417–2427.CrossRef
28.
go back to reference Irwin, D. E., Stucky, B. D., Thissen, D., DeWitt, E. M., Lai, J. S., Yeatts, K., et al. (2010b). Sampling plan and patient characteristics of the PROMIS pediatrics large-scale survey. Quality of Life Research: An International Journal of Quality of Life Aspects of Treatment, Care & Rehabilitation, 19(4), 585–594.CrossRef Irwin, D. E., Stucky, B. D., Thissen, D., DeWitt, E. M., Lai, J. S., Yeatts, K., et al. (2010b). Sampling plan and patient characteristics of the PROMIS pediatrics large-scale survey. Quality of Life Research: An International Journal of Quality of Life Aspects of Treatment, Care & Rehabilitation, 19(4), 585–594.CrossRef
29.
go back to reference 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.CrossRef 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.CrossRef
30.
go back to reference Ravens-Sieberer, U., Devine, J., Bevans, K., Riley, A. W., Moon, J., Salsman, J. M., & Forrest, C. B. (2014). Subjective well-being measures for children were developed within the PROMIS project: Presentation of first results. Journal of Clinical Epidemiology, 67(2), 207–218.CrossRef Ravens-Sieberer, U., Devine, J., Bevans, K., Riley, A. W., Moon, J., Salsman, J. M., & Forrest, C. B. (2014). Subjective well-being measures for children were developed within the PROMIS project: Presentation of first results. Journal of Clinical Epidemiology, 67(2), 207–218.CrossRef
31.
go back to reference Forrest, C. B., Meltzer, L. J., Marcus, C. L., de la Motte, A., Kratchman, A., Buysse, D. J., et al. (2018). Development and validation of the PROMIS Pediatric Sleep Disturbance and Sleep-Related Impairment item banks. Sleep, 41(6), zsyo54.CrossRef Forrest, C. B., Meltzer, L. J., Marcus, C. L., de la Motte, A., Kratchman, A., Buysse, D. J., et al. (2018). Development and validation of the PROMIS Pediatric Sleep Disturbance and Sleep-Related Impairment item banks. Sleep, 41(6), zsyo54.CrossRef
32.
go back to reference Bevans, K. B., Meltzer, L. J., De La Motte, A., Kratchman, A., Viél, D., & Forrest, C. B. (2018). Qualitative development and content validation of the PROMIS pediatric sleep health items. Behavioral Sleep Medicine, 17(5), 657–671.CrossRef Bevans, K. B., Meltzer, L. J., De La Motte, A., Kratchman, A., Viél, D., & Forrest, C. B. (2018). Qualitative development and content validation of the PROMIS pediatric sleep health items. Behavioral Sleep Medicine, 17(5), 657–671.CrossRef
33.
go back to reference Bock, R. D., & Mislevy, R. J. (1982). Adaptive EAP estimation of ability in a microcomputer environment. Applied Psychological Measurement, 6(4), 431–444.CrossRef Bock, R. D., & Mislevy, R. J. (1982). Adaptive EAP estimation of ability in a microcomputer environment. Applied Psychological Measurement, 6(4), 431–444.CrossRef
34.
go back to reference Muthén, L. K., & Muthén, B. O. (1998–2012). Mplus user’s guide (7th ed.). Los Angeles, CA: Muthén & Muthén. Muthén, L. K., & Muthén, B. O. (1998–2012). Mplus user’s guide (7th ed.). Los Angeles, CA: Muthén & Muthén.
35.
go back to reference Samejima, F. (1969). Estimation of latent ability using a response pattern of graded scores. Psychometrika Monograph Supplement, 34(4, Pt. 2), 100. Samejima, F. (1969). Estimation of latent ability using a response pattern of graded scores. Psychometrika Monograph Supplement, 34(4, Pt. 2), 100.
36.
go back to reference Daniels, S. R. J. P. (2009). The use of BMI in the clinical setting. Pediatrics, 124(Supplement 1), S35–S41.CrossRef Daniels, S. R. J. P. (2009). The use of BMI in the clinical setting. Pediatrics, 124(Supplement 1), S35–S41.CrossRef
37.
go back to reference Carle, A. C., Blumberg, S. J., Moore, K. A., & Mbwana, K. (2011). Advanced psychometric methods for developing and evaluating cut-point-based indicators. Child Indicators Research, 4, 101–126.CrossRef Carle, A. C., Blumberg, S. J., Moore, K. A., & Mbwana, K. (2011). Advanced psychometric methods for developing and evaluating cut-point-based indicators. Child Indicators Research, 4, 101–126.CrossRef
Metagegevens
Titel
Using nationally representative percentiles to interpret PROMIS pediatric measures
Auteurs
Adam C. Carle
Katherine B. Bevans
Carole A. Tucker
Christopher B. Forrest
Publicatiedatum
17-11-2020
Uitgeverij
Springer International Publishing
Gepubliceerd in
Quality of Life Research / Uitgave 4/2021
Print ISSN: 0962-9343
Elektronisch ISSN: 1573-2649
DOI
https://doi.org/10.1007/s11136-020-02700-5