Validity of two new patient-reported outcome measures in systemic sclerosis: Patient-reported outcomes measurement information system 29-item health profile and functional assessment of chronic illness therapy-dyspnea short form

Arthritis Care and Research

Volumn 63, Issue 11, 2011, Pages 1620-1628

  Hinchcliff, Monique ^a   Beaumont, Jennifer L ^a   Thavarajah, Krishna ^b   Varga, John ^a   Chung, Anh ^a   Podlusky, Sofia ^a   Carns, Mary ^a   Chang, Rowland W ^a   Cella, David ^a  

^a NORTHWESTERN UNIVERSITY   (United States)

^b HENRY FORD HOSPITAL   (United States)

Author keywords

[No Author keywords available]

Indexed keywords

ADULT; AGED; ARTICLE; CLINICAL ASSESSMENT TOOL; CONSTRUCT VALIDITY; CONTROLLED STUDY; CROSS-SECTIONAL STUDY; DIAGNOSIS, MEASUREMENT AND ANALYSIS; DISEASE DURATION; DISEASE SEVERITY; DYSPNEA; FEMALE; FUNCTIONAL ASSESSMENT; FUNCTIONAL ASSESSMENT OF CHRONIC ILLNESS THERAPY DYSPNEA SHORT FORM; HEALTH ASSESSMENT QUESTIONNAIRE DISABILITY INDEX; HEALTH STATUS; HUMAN; INTERMETHOD COMPARISON; MAJOR CLINICAL STUDY; MALE; MEDICAL RESEARCH COUNCIL DYSPNEA SCORE; MEDSGER DISEASE SEVERITY INDEX; PATIENT REPORTED OUTCOME MEASUREMENT INFORMATION SYSTEM 29 ITEM HEALTH PROFILE; SELF REPORT; SHORT FORM 36; ST. GEORGE RESPIRATORY QUESTIONNAIRE; SYSTEMIC SCLEROSIS;

ADULT; AGE OF ONSET; AGED; CHRONIC DISEASE; CROSS-SECTIONAL STUDIES; DYSPNEA; FEMALE; HEALTH STATUS; HEALTH STATUS INDICATORS; HUMANS; MALE; MICHIGAN; MIDDLE AGED; PREDICTIVE VALUE OF TESTS; PROGNOSIS; REGISTRIES; REPRODUCIBILITY OF RESULTS; SCLERODERMA, SYSTEMIC; SELF REPORT; SEVERITY OF ILLNESS INDEX; TIME FACTORS; YOUNG ADULT;

EID: 80055097170     PISSN: 21514658     EISSN: 15290131     Source Type: Journal    
DOI: 10.1002/acr.20591     Document Type: Article

References (31)

1. Bassel M, Hudson M, Taillefer SS, Schieir O, Baron M, Thombs BD,. Frequency and impact of symptoms experienced by patients with systemic sclerosis: results from a Canadian National Survey. Rheumatology (Oxford) 2010; 50: 762-7.
2. Beretta L, Santaniello A, Lemos A, Masciocchi M, Scorza R,. Validity of the Saint George's Respiratory Questionnaire in the evaluation of the health-related quality of life in patients with interstitial lung disease secondary to systemic sclerosis. Rheumatology (Oxford) 2007; 46: 296-301. (Pubitemid 46189792)
3. Rannou F, Poiraudeau S, Berezne A, Baubet T, Le-Guern V, Cabane J, et al. Assessing disability and quality of life in systemic sclerosis: construct validities of the Cochin Hand Function Scale, Health Assessment Questionnaire (HAQ), Systemic Sclerosis HAQ, and Medical Outcomes Study 36-item Short Form Health Survey. Arthritis Rheum 2007; 57: 94-102.
4. Steen VD, Medsger TA Jr,. The value of the Health Assessment Questionnaire and special patient-generated scales to demonstrate change in systemic sclerosis patients over time. Arthritis Rheum 1997; 40: 1984-91. (Pubitemid 27494658)
5. Cella D, Kallich J, McDermott A, Xu X,. The longitudinal relationship of hemoglobin, fatigue and quality of life in anemic cancer patients: results from five randomized clinical trials. Ann Oncol 2004; 15: 979-86. (Pubitemid 39004357)
6. Choi SW, Victorson DE, Yount S, Anton S, Cella D,. Development of a conceptual framework and calibrated item banks to measure patient-reported dyspnea severity and related functional limitations. Value Health 2011; 14: 291-306.
7. Yount SE, Choi SW, Victorson D, Ruo B, Cella D, Anton S, et al. Brief, valid measures of dyspnea and related functional limitations in chronic obstructive pulmonary disease (COPD). Value Health 2011; 14: 307-15.
8. Cella D, Riley W, Stone A, Rothrock N, Reeve B, Yount S, et al. The Patient-Reported Outcomes Measurement Information System (PROMIS) developed and tested its first wave of adult self-reported health outcome item banks: 2005-2008. J Clin Epidemiol 2010; 63: 1179-94.
9. Subcommittee for Scleroderma Criteria of the American Rheumatism Association Diagnostic and Therapeutic Criteria Committee. Preliminary criteria for the classification of systemic sclerosis (scleroderma). Arthritis Rheum 1980; 23: 581-90.
10. LeRoy EC, Black C, Fleischmajer R, Jablonska S, Krieg T, Medsger TA Jr, et al. Scleroderma (systemic sclerosis): classification, subsets and pathogenesis. J Rheumatol 1988; 15: 202-5. (Pubitemid 18073738)
11. Cella D, Beaumont JL, Liu Z, Phan AT, Choi S, Yao JC,. Neuroendocrine tumor disease state and PROMIS health-related quality of life scores [abstract]. J Clin Oncol 2010; 28: 15s.
12. Beaumont JL, Liu Z, Choi S, Yao JC, Phan AT, Cella D,. Relationship between neuroendocrine tumor-related symptoms and PROMIS health-related quality of life scores [abstract]. J Clin Oncol 2010; 28: 15s.
13. Victorson DE, Anton S, Hamilton A, Yount S, Cella D,. A conceptual model of the experience of dyspnea and functional limitations in chronic obstructive pulmonary disease. Value Health 2009; 12: 1018-25.
14. Ware JE, Kosinski M, Dewey JE,. How to score version 2 of the SF-36 health survey (standard and acute forms). Lincoln (RI): QualityMetric; 2005.
15. Jones P, Forde Y,. St. George's Respiratory Questionnaire manual, version 2.2. London: St. George's University of London; 2008.
16. Stenton C,. The MRC breathlessness scale. Occup Med (Lond) 2008; 58: 226-7.
17. Manali ED, Stathopoulos GT, Kollintza A, Kalomenidis I, Emili JM, Sotiropoulou C, et al. The Medical Research Council chronic dyspnea score predicts the survival of patients with idiopathic pulmonary fibrosis. Respir Med 2008; 102: 586-92.
18. Papiris SA, Daniil ZD, Malagari K, Kapotsis GE, Sotiropoulou C, Milic-Emili J, et al. The Medical Research Council dyspnea scale in the estimation of disease severity in idiopathic pulmonary fibrosis. Respir Med 2005; 99: 755-61. (Pubitemid 40631303)
19. Fries JF, Spitz P, Kraines RG, Holman HR,. Measurement of patient outcome in arthritis. Arthritis Rheum 1980; 23: 137-45. (Pubitemid 10164318)
20. Fries JF, Spitz PW, Young DY,. The dimensions of health outcomes: the Health Assessment Questionnaire, disability and pain scales. J Rheumatol 1982; 9: 789-93.
21. Medsger TA Jr, Silman AJ, Steen VD, Black CM, Akesson A, Bacon PA, et al. A disease severity scale for systemic sclerosis: development and testing. J Rheumatol 1999; 26: 2159-67. (Pubitemid 29487010)
22. Hudson M, Thombs BD, Steele R, Panopalis P, Newton E, Baron M, and the Canadian Scleroderma Research Group. Health-related quality of life in systemic sclerosis: a systematic review. Arthritis Rheum 2009; 61: 1112-20.
23. Hudson M, Steele R, Taillefer S, Baron M, and the Canadian Scleroderma Research Group. Quality of life in systemic sclerosis: psychometric properties of the World Health Organization Disability Assessment Schedule II. Arthritis Rheum 2008; 59: 270-8. (Pubitemid 351272965)
24. Mokkink LB, Terwee CB, Patrick DL, Alonso J, Stratford PW, Knol DL, et al. The COSMIN study reached international consensus on taxonomy, terminology, and definitions of measurement properties for health-related patient-reported outcomes. J Clin Epidemiol 2010; 63: 737-45.
25. Rothrock NE, Hays RD, Spritzer K, Yount SE, Riley W, Cella D,. Relative to the general US population, chronic diseases are associated with poorer health-related quality of life as measured by the Patient-Reported Outcomes Measurement Information System (PROMIS). J Clin Epidemiol 2010; 63: 1195-204.
26. Cohen J,. Statistical power analysis for the behavioral sciences. 2nd ed. Hillsdale (NJ): Lawrence Erlbaum Associates; 1988.
27. Yost KJ, Eton DT,. Combining distribution- and anchor-based approaches to determine minimally important differences: the FACIT experience. Eval Health Prof 2005; 28: 172-91. (Pubitemid 40628906)
28. Yost KJ, Eton DT, Garcia SF, Cella D,. Minimally important differences were estimated for six Patient-Reported Outcomes Measurement Information System-cancer scales in advanced-stage cancer patients. J Clin Epidemiol 2011; 64: 507-16.
29. Frech T, Hays RD, Maranian P, Clements PJ, Furst DE, Khanna D,. Prevalence and correlates of sleep disturbance in systemic sclerosis: results from the UCLA scleroderma quality of life study. Rheumatology (Oxford) 2011; 50: 1280-7.
30. Montazeri A,. Quality of life data as prognostic indicators of survival in cancer patients: an overview of the literature from 1982 to 2008. Health Qual Life Outcomes 2009; 7: 102.
31. Eton DT, Fairclough DL, Cella D, Yount SE, Bonomi P, Johnson DH,. Early change in patient-reported health during lung cancer chemotherapy predicts clinical outcomes beyond those predicted by baseline report: results from Eastern Cooperative Oncology Group Study 5592. J Clin Oncol 2003; 21: 1536-43. (Pubitemid 46594107)