Skip to main content
main-content
Top

Tip

Swipe om te navigeren naar een ander artikel

Gepubliceerd in: Quality of Life Research 9/2020

14-05-2020

Identifying clinically meaningful severity categories for PROMIS pediatric measures of anxiety, mobility, fatigue, and depressive symptoms in juvenile idiopathic arthritis and childhood-onset systemic lupus erythematosus

Auteurs: C. M. Mann, L. E. Schanberg, M. Wang, E. von Scheven, N. Lucas, A. Hernandez, S. Ringold, B. B. Reeve

Gepubliceerd in: Quality of Life Research | Uitgave 9/2020

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

A key limitation to widespread adoption of patient-reported outcome (PRO) measures is the lack of interpretability of scores. We aim to identify clinical severity thresholds to distinguish categories of no problems, mild, moderate, and severe along the PROMIS® Pediatric T-score metric for measures of anxiety, mobility, fatigue, and depressive symptoms for use in populations with juvenile idiopathic arthritis (JIA) and childhood-onset systemic lupus erythematosus (cSLE).

Methods

We used a modified standard setting methodology from educational testing to identify clinical severity thresholds (clinical cut scores). Using item response theory-based parameters from PROMIS item banks, we developed a series of clinical vignettes that represented different severity or ability levels along the PROMIS Pediatric T-score metric. In stakeholder workshops, participants worked individually and together to reach consensus on clinical cut scores. Median cut-score placements were taken when consensus was not reached. Focus groups were recorded and qualitative analysis was conducted to identify decision-making processes.

Results

Nine adolescents (age 13–17 years) with JIA (33% female) and their caregivers, five adolescents (age 14–16 years) with cSLE (100% female) and their caregivers, and 12 pediatric rheumatologists (75% female) participated in bookmarking workshops. Placement of thresholds for bookmarks was highly similar across stakeholder groups (differences from 0 to 5 points on the PROMIS t-score metric) for all but one bookmark placement.

Conclusion

This study resulted in clinical thresholds for severity categories for PROMIS Pediatric measures of anxiety, mobility, fatigue, and depressive symptoms, providing greater interpretability of scores in JIA and cSLE populations.
Bijlagen
Alleen toegankelijk voor geautoriseerde gebruikers
Literatuur
6.
go back to reference Gutierrez-Suarez, R., Pistorio, A., Cespedes Cruz, A., Norambuena, X., Flato, B., Rumba, I., et al. (2007). Health-related quality of life of patients with juvenile idiopathic arthritis coming from 3 different geographic areas. The PRINTO multinational quality of life cohort study. Rheumatology (Oxford), 46(2), 314–320. https://​doi.​org/​10.​1093/​rheumatology/​kel218. CrossRef Gutierrez-Suarez, R., Pistorio, A., Cespedes Cruz, A., Norambuena, X., Flato, B., Rumba, I., et al. (2007). Health-related quality of life of patients with juvenile idiopathic arthritis coming from 3 different geographic areas. The PRINTO multinational quality of life cohort study. Rheumatology (Oxford), 46(2), 314–320. https://​doi.​org/​10.​1093/​rheumatology/​kel218. CrossRef
8.
go back to reference Haverman, L., Grootenhuis, M. A., van den Berg, J. M., van Veenendaal, M., Dolman, K. M., Swart, J. F., et al. (2012). Predictors of health-related quality of life in children and adolescents with juvenile idiopathic arthritis: Results from a web-based survey. Arthritis Care Research (Hoboken). https://​doi.​org/​10.​1002/​acr.​21609. CrossRef Haverman, L., Grootenhuis, M. A., van den Berg, J. M., van Veenendaal, M., Dolman, K. M., Swart, J. F., et al. (2012). Predictors of health-related quality of life in children and adolescents with juvenile idiopathic arthritis: Results from a web-based survey. Arthritis Care Research (Hoboken). https://​doi.​org/​10.​1002/​acr.​21609. CrossRef
10.
go back to reference Tucker, L. B., Menon, S., Schaller, J. G., & Isenberg, D. A. (1995). Adult- and childhood-onset systemic lupus erythematosus: A comparison of onset, clinical features, serology, and outcome. British Journal of Rheumatology, 34(9), 866–872. CrossRefPubMed Tucker, L. B., Menon, S., Schaller, J. G., & Isenberg, D. A. (1995). Adult- and childhood-onset systemic lupus erythematosus: A comparison of onset, clinical features, serology, and outcome. British Journal of Rheumatology, 34(9), 866–872. CrossRefPubMed
23.
go back to reference Morgan, E. M., Mara, C. A., Huang, B., Barnett, K., Carle, A. C., Farrell, J. E., et al. (2017). Establishing clinical meaning and defining important differences for patient-reported outcomes measurement information system (PROMIS((R))) measures in juvenile idiopathic arthritis using standard setting with patients, parents, and providers. Quality of Life Research, 26(3), 565–586. https://​doi.​org/​10.​1007/​s11136-016-1468-2. CrossRefPubMed Morgan, E. M., Mara, C. A., Huang, B., Barnett, K., Carle, A. C., Farrell, J. E., et al. (2017). Establishing clinical meaning and defining important differences for patient-reported outcomes measurement information system (PROMIS((R))) measures in juvenile idiopathic arthritis using standard setting with patients, parents, and providers. Quality of Life Research, 26(3), 565–586. https://​doi.​org/​10.​1007/​s11136-016-1468-2. CrossRefPubMed
24.
go back to reference Buckendahl, C. W., Smith, R. W., Impara, J. C., & Plake, B. S. (2002). A comparison of angoff and bookmark standard setting methods. Journal of Educational Measurement, 39(3), 253–263. CrossRef Buckendahl, C. W., Smith, R. W., Impara, J. C., & Plake, B. S. (2002). A comparison of angoff and bookmark standard setting methods. Journal of Educational Measurement, 39(3), 253–263. CrossRef
25.
go back to reference Cizek, G. J., & Bunch, M. B. (2006). The Bookmark Method. In G. Cizek & M. B. Bunch (Eds.), Standard setting: A guide to establishing and evaluating performance standards on tests. Cleveland: SAGE Publications Inc. Cizek, G. J., & Bunch, M. B. (2006). The Bookmark Method. In G. Cizek & M. B. Bunch (Eds.), Standard setting: A guide to establishing and evaluating performance standards on tests. Cleveland: SAGE Publications Inc.
26.
go back to reference Beebe, J. (2001). Rapid assessment process: An introduction. Walnut Creek: AltaMira Press. Beebe, J. (2001). Rapid assessment process: An introduction. Walnut Creek: AltaMira Press.
27.
go back to reference Teens Know What They Want from Online News. (2013). Do You? Newspaper Association of America Foundation and the Media Management Center at Northwestern University. Teens Know What They Want from Online News. (2013). Do You? Newspaper Association of America Foundation and the Media Management Center at Northwestern University.
28.
go back to reference Team, R. C. (2013). R: A language and environment for statistical computing. R Foundation for Statistical Computing. Vienna, Austria Team, R. C. (2013). R: A language and environment for statistical computing. R Foundation for Statistical Computing. Vienna, Austria
34.
go back to reference Messick, S. (1998). Test validity: A matter of consequence. Social Indicators Research, 45(1–3), 35–44. CrossRef Messick, S. (1998). Test validity: A matter of consequence. Social Indicators Research, 45(1–3), 35–44. CrossRef
Metagegevens
Titel
Identifying clinically meaningful severity categories for PROMIS pediatric measures of anxiety, mobility, fatigue, and depressive symptoms in juvenile idiopathic arthritis and childhood-onset systemic lupus erythematosus
Auteurs
C. M. Mann
L. E. Schanberg
M. Wang
E. von Scheven
N. Lucas
A. Hernandez
S. Ringold
B. B. Reeve
Publicatiedatum
14-05-2020
Uitgeverij
Springer International Publishing
Gepubliceerd in
Quality of Life Research / Uitgave 9/2020
Print ISSN: 0962-9343
Elektronisch ISSN: 1573-2649
DOI
https://doi.org/10.1007/s11136-020-02513-6