An evaluation of health-related quality of life in patients with systemic lupus erythematosus using PROMIS and Neuro-QoL

Clinical Rheumatology

Volumn 36, Issue 3, 2017, Pages 555-562

  Lai, Jin Shei ^a   Beaumont, Jennifer L ^a   Jensen, Sally E ^a   Kaiser, Karen ^a   Van Brunt, David L ^b   Kao, Amy H ^b   Chen, Shih Yin ^b  

^a NORTHWESTERN UNIVERSITY   (United States)

^b BIOGEN   (United States)

Author keywords

Neuro QoL; Patient reported outcomes; PROMIS; SLE rheumatic diseases

Indexed keywords

AZATHIOPRINE; BELIMUMAB; CHLOROQUINE; GLUCOCORTICOID; HYDROXYCHLOROQUINE; METHOTREXATE; MYCOPHENOLATE MOFETIL;

ADULT; AGED; ANXIETY; ARTICLE; COGNITION; CORTICOSTEROID THERAPY; DEPRESSION; DISEASE DURATION; DISEASE SEVERITY; EVALUATION STUDY; EXECUTIVE FUNCTION; FATIGUE; FEMALE; FOLLOW UP; HUMAN; MAJOR CLINICAL STUDY; MALE; PAIN; PAIN INTENSITY; PAIN SEVERITY; PATIENT REPORTED OUTCOMES MEASUREMENT INFORMATION SYSTEM; PATIENT-REPORTED OUTCOME; PRIORITY JOURNAL; QUALITY OF LIFE; QUALITY OF LIFE ASSESSMENT; QUALITY OF LIFE IN NEUROLOGICAL DISORDER; QUESTIONNAIRE; SCORING SYSTEM; SLEEP DISORDER; SYSTEMIC LUPUS ERYTHEMATOSUS; TEST RETEST RELIABILITY; WELLBEING; ADOLESCENT; COMPLICATION; HEALTH STATUS; HEALTH SURVEY; LUPUS ERYTHEMATOSUS, SYSTEMIC; MIDDLE AGED; SEVERITY OF ILLNESS INDEX; VERY ELDERLY; YOUNG ADULT;

ADOLESCENT; ADULT; AGED; AGED, 80 AND OVER; FATIGUE; FEMALE; HEALTH STATUS; HEALTH SURVEYS; HUMANS; LUPUS ERYTHEMATOSUS, SYSTEMIC; MALE; MIDDLE AGED; PAIN; QUALITY OF LIFE; SEVERITY OF ILLNESS INDEX; YOUNG ADULT;

EID: 84995460721     PISSN: 07703198     EISSN: 14349949     Source Type: Journal    
DOI: 10.1007/s10067-016-3476-6     Document Type: Article

References (35)

1. Gill JM, Quisel AM, Rocca PV, Walters DT (2003) Diagnosis of systemic lupus erythematosus. Am Fam Physician 68(11):2179–2186
2. Pons-Estel GJ, Alarcón GS, Scofield L, Reinlib L, Cooper GS (2010) Understanding the epidemiology and progression of systemic lupus erythematosus. Semin Arthritis Rheum 39(4):257–268
3. Wang C, Mayo NE, Fortin PR (2001) The relationship between health related quality of life and disease activity and damage in systemic lupus erythematosus. J Rheumatol 28(3):525–532
4. Drenkard C, Alarcon-Segovia D (2000) The new prognosis of systemic lupus erythematosus: treatment-free remission and decreased mortality and morbidity. IsrMedAssocJ 2(5):382–387
5. Lau CS, Mak A (2009) The socioeconomic burden of SLE. Nat Rev Rheumatol 5(7):400–404
6. Garris C, Oglesby A, Sulcs E, Lee M (2013) Impact of systemic lupus erythematosus on burden of illness and work productivity in the United States. Lupus 22(10):1077–1086
7. Leong KP, Kong KO, Thong BYH, Koh ET, Lian TY, Teh CL, Cheng YK, Chng HH, Badsha H, Law WG, Lau TC, Chew LC, Ho HJ, Pong LY, Hoi LS, Sangeetha N, Chan SP, Howe HS (2005) Development and preliminary validation of a systemic lupus erythematosus-specific quality-of-life instrument (SLEQOL). Rheumatology 44(10):1267–1276
8. McElhone K, Abbott J, Shelmerdine J, Bruce IN, Ahmad Y, Gordon C, Peers K, Isenberg D, Ferenkeh-Koroma A, Griffiths B (2007) Development and validation of a disease-specific health-related quality of life measure, the LupusQol, for adults with systemic lupus erythematosus. Arthritis Care & Research 57(6):972–979
9. Petri M, Kawata AK, Fernandes AW, Gajria K, Greth W, Hareendran A, Ethgen D (2013) Impaired health status and the effect of pain and fatigue on functioning in clinical trial patients with systemic lupus erythematosus. J Rheumatol 40(11):1865–1874
10. Al Dhanhani AM, Gignac MA, Su J, Fortin PR (2009) Work disability in systemic lupus erythematosus. Arthritis Rheum 61(3):378–385
11. Rood MJ, Borggreve SE, Huizinga TW (2000) Sensitivity to change of the MOS SF-36 quality of life assessment questionnaire in patients with systemic lupus erythematosus taking immunosuppressive therapy. J Rheumatol 27(8):2057–2059
12. Cella D, Gershon R, Lai J-S, Choi S (2007) The future of outcomes measurement: item banking, tailored short-forms, and computerized adaptive assessment. Qual Life Res 16(Suppl 1):133–141
13. Rothrock N, Hays R, Spritzer K, Yount SE, Riley W, Cella D (2010) 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 63(11):1195–1204
14. Cella D, Riley W, Stone A, Rothrock N, Reeve B, Yount S, Amtmann D, Bode R, Buysse D, Choi S, Cook K, Devellis R, Dewalt D, Fries JF, Gershon R, Hahn EA, Pilkonis P, Revicki D, Rose M, Weinfurt K, Hays R, Lai JS, PROMIS Cooperative Group (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. J Clin Epidemiol 63(11):1179–1194
15. Beaumont JL, Cella D, Phan AT, Choi S, Liu Z, Yao JC (2012) Comparison of health-related quality of life in patients with neuroendocrine tumors with quality of life in the general US population. Pancreas 41(3):461–466
16. Lai JS, Garcia SF, Salsman JM, Rosenbloom S, Cella D (2012) The psychosocial impact of cancer: evidence in support of independent general positive and negative components. Qual Life Res 21(2):195–207
17. Garcia SF, Lai JS, Salsman JM, Cella D (2010) Development of the patient-reported outcomes measurement information system (PROMIS) psychosocial illness impact item banks [abstract]. Psycho-Oncology 19(1, Suppl):S2
18. Maneeton B, Maneeton N, Louthrenoo W (2010) Cognitive deficit in patients with systemic lupus erythematosus. Asian Pac J Allergy Immunol 28(1):77–83
19. Cella D, Lai JS, Nowinski C, Victorson D, Peterman A, Miller D, Bethoux F, Heinemann A, Rubin S, Cavasos J, Reder A, Sufit R, Simuni T, Holmes G, Siderowf A, Wojna V, Bode R, McKinney N, Podrabsky T, Wortman K, Choi S, Gershon R, Rothrock N, Moy C (2012) Neuro-QOL: brief measures of health-related quality of life for clinical research in neurology. Neurology 78:1860–1867
20. Liu H, Cella D, Gershon R, Shen J, Morales LS, Riley W, Hays RD (2010) Representativeness of the PROMIS internet panel. J Clin Epidemiol 63(11):1169–1178
21. Gershon R, Lai J, Bode R, Choi S, Moy C, Bleck T, Miller D, Peterman A, Cella D (2012) Neuro-QOL: quality of life item banks for adults with neurological disorders: item development and calibrations based upon clinical and general population testing. Qual Life Res 21(3):475–486
22. Waldheim E, Elkan A, Pettersson S, van Vollenhoven R, Bergman S, Frostegård J, Henriksson EW (2013) Health-related quality of life, fatigue and mood in patients with SLE and high levels of pain compared to controls and patients with low levels of pain. Lupus 22(11):1118–1127
23. Jolly M (2005) How does quality of life of patients with systemic lupus erythematosus compare with that of other common chronic illnesses? J Rheumatol 32(9):1706–1708
24. Lai J-S, Cella D, Yanez B, Stone A (2014) Linking fatigue measures on a common reporting metric. J Pain Symptom Manag 48(4):639–648
25. Lai J-S, Beaumont J, Ogale S, Brunetta P, Cella D (2011) Validation of the functional assessment of chronic illness therapy-fatigue (FACIT-fatigue) scale in patients with moderately to severely active SLE, participating in a clinical trial. J Rheumatol 38(4):672–679
26. Schmeding A, Schneider M (2013) Fatigue, health-related quality of life and other patient-reported outcomes in systemic lupus erythematosus. Best practice and research. Clin Rheumatol 27(3):363–375
27. Feld J, Isenberg D (2014) Why and how should we measure disease activity and damage in lupus? Presse Med 43(6 Pt 2):e151–e156
28. Archenholtz B, Burckhardt CS, Segesten K (1999) Quality of life of women with systemic lupus erythematosus or rheumatoid arthritis: domains of importance and dissatisfaction. Qual Life Res 8(5):411–416
29. Thumboo J, Fong KY, Chan SP, Leong KH, Feng PH, Thio ST, Boey ML (2000) A prospective study of factors affecting quality of life in systemic lupus erythematosus. J Rheumatol 27(6):1414–1420
30. Bernatsky S, Boivin JF, Joseph L, Manzi S, Ginzler E, Gladman DD, Urowitz M, Fortin PR, Petri M, Barr S, Gordon C, Bae SC, Isenberg D, Zoma A, Aranow C, Dooley MA, Nived O, Sturfelt G, Steinsson K, Alarcon G, Senecal JL, Zummer M, Hanly J, Ensworth S, Pope J, Edworthy S, Rahman A, Sibley J, El-Gabalawy H, McCarthy T, St Pierre Y, Clarke A, Ramsey-Goldman R (2006) Mortality in systemic lupus erythematosus. Arthritis Rheum 54(8):2550–2557
31. Bichile T, Petri M (2014) Prevention and management of co-morbidities in SLE. Presse Med 43(6 Pt 2):e187–e195
32. Gladman D, Urowitz M, Fortin P, Isenberg D, Goldsmith C, Gordon C, Petri M (1996) Systemic lupus international collaborating clinics conference on assessment of lupus flare and quality of life measures in SLE. Systemic Lupus International Collaborating Clinics Group. J Rheumatol 23(11):1953–1955
33. Urowitz M, Gladman D, Ibañez D, Sanchez-Guerrero J, Bae S, Gordon C, Fortin P, Clarke A, Bernatsky S, Hanly J (2014) Changes in quality of life in the first 5 years of disease in a multicentre cohort of patients with systemic lupus erythematosus (SLE). Arthritis Care Res 66(9):1374–1379
34. Lai JS, Cella D, Choi SW, Junghaenel DU, Christodolou C, Gershon R, Stone A (2011) How item banks and their application can influence measurement practice in rehabilitation medicine: a PROMIS fatigue item bank example. Arch Phys Med Rehabil 92(10 Supplement):S20–S27
35. Uribe AG, McGwin G, Reveille JD, Alarcón GS (2004) What have we learned from a 10-year experience with the LUMINA (lupus in minorities; nature vs. nurture) cohort? Where are we heading? Autoimmun Rev 3(4):321–329