Validation of Patient-Reported Outcomes Measurement Information System Short Forms for Use in Childhood-Onset Systemic Lupus Erythematosus

Arthritis Care and Research

Volumn 69, Issue 1, 2017, Pages 133-142

  Jones, Jordan T ^a   Carle, Adam C ^b   Wootton, Janet ^c   Liberio, Brianna ^b   Lee, Jiha ^b   Schanberg, Laura E ^c   Ying, Jun ^b   Morgan DeWitt, Esi ^d   Brunner, Hermine I ^d  

^a UNIVERSITY OF MISSOURI KANSAS CITY   (United States)

^b UNIVERSITY OF CINCINNATI COLLEGE OF MEDICINE   (United States)

^c DUKE UNIVERSITY MEDICAL CENTER   (United States)

^d CINCINNATI CHILDREN'S HOSPITAL MEDICAL CENTER   (United States)

Author keywords

[No Author keywords available]

Indexed keywords

ADOLESCENT; ADULT; ANGER; ANXIETY; ARM MOVEMENT; ARTICLE; CHILD; CHILD HEALTH; CHILDHOOD; CHILDHOOD HEALTH ASSESSMENT QUESTIONNAIRE; COHORT ANALYSIS; CONSTRUCT VALIDITY; DEPRESSION; DISEASE ASSESSMENT; FATIGUE; FEASIBILITY STUDY; FEMALE; GLOBAL RATING SCALE OF CHANGE; HEALTH ASSESSMENT QUESTIONNAIRE; HUMAN; INSTRUMENT VALIDATION; INTERNAL CONSISTENCY; MAJOR CLINICAL STUDY; MALE; ONSET AGE; PATIENT REPORTED OUTCOMES MEASUREMENT INFORMATION SYSTEM SHORT FORM; PEDIATRIC QUALITY OF LIFE INVENTORY; PEER GROUP; PHYSICAL MOBILITY; QUALITY OF LIFE; QUALITY OF LIFE ASSESSMENT; RATING SCALE; SIMPLE MEASURE OF IMPACT OF LUPUS ERYTHEMATOSUS IN YOUNGSTERS; SLEDAI; SYSTEMIC LUPUS ERYTHEMATOSUS; VISUAL ANALOG SCALE; WELLBEING; LONGITUDINAL STUDY; PATIENT-REPORTED OUTCOME; QUESTIONNAIRE; VALIDATION STUDY; YOUNG ADULT;

ADOLESCENT; CHILD; COHORT STUDIES; FEMALE; HUMANS; LONGITUDINAL STUDIES; LUPUS ERYTHEMATOSUS, SYSTEMIC; MALE; PATIENT REPORTED OUTCOME MEASURES; SURVEYS AND QUESTIONNAIRES; YOUNG ADULT;

EID: 85006153448     PISSN: 2151464X     EISSN: 21514658     Source Type: Journal    
DOI: 10.1002/acr.22927     Document Type: Article

References (40)

1. Brunner HI, Higgins GC, Wiers K, Lapidus SK, Olson JC, Onel K, et al. Health-related quality of life and its relationship to patient disease course in childhood-onset systemic lupus erythematosus. J Rheumatol 2009;36:1536–45.
2. Ruperto N, Buratti S, Duarte-Salazar C, Pistorio A, Reiff A, Bernstein B, et al. Health-related quality of life in juvenile-onset systemic lupus erythematosus and its relationship to disease activity and damage. Arthritis Rheum 2004;51:458–64.
3. Thumboo J, Strand V. Health-related quality of life in patients with systemic lupus erythematosus: an update. Ann Acad Med Singapore 2007;36:115–22.
4. Jones JT, Cunningham N, Kashikar-Zuck S, Brunner HI. Pain, fatigue, and psychological impact on health-related quality of life in childhood-onset lupus. Arthritis Care Res (Hoboken) 2016;68:73–80.
5. Schmeding A, Schneider M. Fatigue, health-related quality of life and other patient-reported outcomes in systemic lupus erythematosus. Best Pract Res Clin Rheumatol 2013;27:363–75.
6. Eiser C, Jenney M. Measuring quality of life. Arch Dis Child 2007;92:348–50.
7. Varni JW, Burwinkle TM, Lane MM. Health-related quality of life measurement in pediatric clinical practice: an appraisal and precept for future research and application. Health Qual Life Outcomes 2005;3:34.
8. Ware JE Jr. The Patient-Reported Outcomes Measurement Information System (PROMIS) seeks to improve and standardize measures of five generic health-related QOL domains. Patient Reported Outcomes Newsletter 2007;38. URL: http://www.pro-newsletter.com/content/view/184/53/.
9. Silva CA, Avcin T, Brunner HI. Taxonomy for systemic lupus erythematosus with onset before adulthood. Arthritis Care Res (Hoboken) 2012;64:1787–93.
10. Domain frameworks PROMIS adult self-reported health. 2015. URL: http://www.nihpromis.org/measures/domainframework1.
11. Reeve BB, Hays RD, Bjorner JB, Cook KF, Crane PK, Teresi JA, et al. Psychometric evaluation and calibration of health-related quality of life item banks: plans for the Patient-Reported Outcomes Measurement Information System (PROMIS). Med Care 2007;45(Suppl 1):S22–31.
12. PROMIS scoring manuals. 2015. URL: www.assessmentcenter.net/Manuals.aspx.
13. DeWitt EM, Stucky BD, Thissen D, Irwin DE, Langer M, Varni JW, et al. Construction of the eight-item patient-reported outcomes measurement information system pediatric physical function scales: built using item response theory. J Clin Epidemiol 2011;64:794–804.
14. Varni JW, Stucky BD, Thissen D, Dewitt EM, Irwin DE, Lai JS, et al. PROMIS Pediatric Pain Interference Scale: an item response theory analysis of the pediatric pain item bank. J Pain 2010;11:1109–19.
15. Irwin DE, Stucky B, Langer MM, Thissen D, Dewitt EM, Lai JS, et al. An item response analysis of the pediatric PROMIS anxiety and depressive symptoms scales. Qual Life Res 2010;19:595–607.
16. Irwin DE, Stucky BD, Langer MM, Thissen D, DeWitt EM, Lai JS, et al. PROMIS Pediatric Anger Scale: an item response theory analysis. Qual Life Res 2012;21:697–706.
17. Kashikar-Zuck S, Flowers SR, Claar RL, Guite JW, Logan DE, Lynch-Jordan AM, et al. Clinical utility and validity of the Functional Disability Inventory among a multicenter sample of youth with chronic pain. Pain 2011;152:1600–7.
18. Claar RL, Walker LS. Functional assessment of pediatric pain patients: psychometric properties of the functional disability inventory. Pain 2006;121:77–84.
19. Moorthy LN, Peterson MG, Baratelli M, Harrison MJ, Onel KB, Chalom EC, et al. Multicenter validation of a new quality of life measure in pediatric lupus. Arthritis Rheum 2007;57:1165–73.
20. Meiorin S, Pistorio A, Ravelli A, Iusan SM, Filocamo G, Trail L, et al. Validation of the Childhood Health Assessment Questionnaire in active juvenile systemic lupus erythematosus. Arthritis Rheum 2008;59:1112–9.
21. Singh G, Athreya BH, Fries JF, Goldsmith DP. Measurement of health status in children with juvenile rheumatoid arthritis. Arthritis Rheum 1994;37:1761–9.
22. Landgraf JM, Abetz LN, Ware JE. The Childhood Health Questionnaire user's manual. 2nd ed. Boston (MA): HealthAct; 1999.
23. Asmussen L, Olson LM, Grant EN, Landgraf JM, Fagan J, Weiss KB. Use of the child health questionnaire in a sample of moderate and low-income inner-city children with asthma. Am J Respir Crit Care Med 2000;162(Pt 1):1215–21.
24. Gladman D, Ginzler E, Goldsmith C, Fortin P, Liang M, Urowitz M, et al. The development and initial validation of the Systemic Lupus International Collaborating Clinics/American College of Rheumatology Damage Index for systemic lupus erythematosus. Arthritis Rheum 1996;39:363–9.
25. Brunner HI, Silverman ED, To T, Bombardier C, Feldman BM. Risk factors for damage in childhood-onset systemic lupus erythematosus: cumulative disease activity and medication use predict disease damage. Arthritis Rheum 2002;46:436–44.
26. Brunner HI, Feldman BM, Bombardier C, Silverman ED. Sensitivity of the Systemic Lupus Erythematosus Disease Activity Index, British Isles Lupus Assessment Group Index, and Systemic Lupus Activity Measure in the evaluation of clinical change in childhood-onset systemic lupus erythematosus. Arthritis Rheum 1999;42:1354–60.
27. Yee CS, Cresswell L, Farewell V, Rahman A, Teh LS, Griffiths B, et al. Numerical scoring for the BILAG-2004 index. Rheumatology (Oxford) 2010;49:1665–9.
28. Isenberg DA, Rahman A, Allen E, Farewell V, Akil M, Bruce IN, et al. BILAG 2004: development and initial validation of an updated version of the British Isles Lupus Assessment Group's disease activity index for patients with systemic lupus erythematosus. Rheumatology (Oxford) 2005;44:902–6.
29. George DM, Mallery P. SPSS for Windows step by step: a simple guide and reference. 11.0 update. 4th ed. Boston: Allyn & Bacon; 2003.
30. Westen D, Rosenthal R. Quantifying construct validity: two simple measures. J Pers Soc Psychol 2003;84:608–18.
31. Classification and Response Criteria Subcommittee of the American College of Rheumatology Committee on Quality Measures. Development of classification and response criteria for rheumatic diseases. Arthritis Rheum 2006;55:348–52.
32. Roy A. Estimating correlation coefficient between two variables with repeated observations using mixed effects model. Biom J 2006;48:286–301.
33. Mukaka MM. Statistics corner: a guide to appropriate use of correlation coefficient in medical research. Malawi Med J 2012;24:69–71.
34. Muthen LK, Muthen BO. Mplus user's guide. 7th ed. Los Angeles: Muthén & Muthén; 1998–2012.
35. Cella D, Yount S, Rothrock N, Gershon R, Cook K, Reeve B, et al. The Patient-Reported Outcomes Measurement Information System (PROMIS): progress of an NIH Roadmap cooperative group during its first two years. Med Care 2007;45(Suppl 1):S3–11.
36. Khanna D, Maranian P, Rothrock N, Cella D, Gershon R, Khanna PP, et al. Feasibility and construct validity of PROMIS and “legacy” instruments in an academic scleroderma clinic. Value Health 2012;15:128–34.
37. Senders A, Hanes D, Bourdette D, Whitham R, Shinto L. Reducing survey burden: feasibility and validity of PROMIS measures in multiple sclerosis. Mult Scler 2014;20:1102–11.
38. Varni JW, Seid M, Smith Knight T, Burwinkle T, Brown J, Szer IS. The PedsQL in pediatric rheumatology: reliability, validity, and responsiveness of the Pediatric Quality of Life Inventory Generic Core Scales and Rheumatology Module. Arthritis Rheum 2002;46:714–25.
39. Hullmann SE, Ryan JL, Ramsey RR, Chaney JM, Mullins LL. Measures of general pediatric quality of life: Child Health Questionnaire (CHQ), DISABKIDS Chronic Generic Measure (DCGM), KINDL-R, Pediatric Quality of Life Inventory (PedsQL) 4.0 Generic Core Scales, and Quality of My Life Questionnaire (QoML). Arthritis Care Res (Hoboken) 2011;63(Suppl 11):S420–30.
40. Hersh A. Measures of health-related quality of life in pediatric systemic lupus erythematosus: Childhood Health Assessment Questionnaire (C-HAQ), Child Health Questionnaire (CHQ), Pediatric Quality of Life Inventory Generic Core Module (PedsQL-GC), Pediatric Quality of Life Inventory Rheumatology Module (PedsQL-RM), and Simple Measure of Impact of Lupus Erythematosus in Youngsters (SMILEY). Arthritis Care Res (Hoboken) 2011;63(Suppl 11):S446–53.