Top 10 recent developments in health-related quality of life in patients with systemic lupus erythematosus topical collection on systemic lupus erythematosus

Current Rheumatology Reports

Volumn 15, Issue 12, 2013, Pages

  Dua, Anisha B ^a   Touma, Zahi ^b   Toloza, Sergio ^c   Jolly, Meenakshi ^d  

^a ALLEGHENY HEALTH NETWORK   (United States)

^b UNIVERSITY OF TORONTO   (Canada)

^c Hospital Interzonal de Agudos San Juan Bautista   (Argentina)

^d RUSH UNIVERSITY MEDICAL CENTER   (United States)

Author keywords

Clinical trials; Confounders; Health related quality of life; Modifiers; Patient reported outcomes; QoL; Quality of life; Systemic lupus erythematosus

Indexed keywords

ARTICLE; DISEASE ACTIVITY; DOCTOR PATIENT RELATION; EQ 5D QUESTIONNAIRE; HEALTH CARE DELIVERY; HEALTH CARE UTILIZATION; HEALTH SERVICE; HUMAN; LUPUS QUALITY OF LIFE SCALE; MEDICAL ASSESSMENT; NAMED INVENTORIES, QUESTIONNAIRES AND RATING SCALES; PATIENT CARE; PATIENT COMPLIANCE; PATIENT MONITORING; QUALITY OF LIFE; RANDOMIZED CONTROLLED TRIAL (TOPIC); RELIABILITY; SELF REPORT; SEMI STRUCTURED INTERVIEW; SHORT FORM 36; SHORT FORM 6D QUESTIONNAIRE; SYSTEMIC LUPUS ERYTHEMATOSUS; SYSTEMIC LUPUS ERYTHEMATOSUS QUALITY OF LIFE QUESTIONNAIRE; SYSTEMIC LUPUS ERYTHEMATOSUS SPECIFIC QUALITY OF LIFE; SYSTEMIC LUPUS ERYTHEMATOSUS SYMPTOM CHECKLIST; VALIDITY; CULTURAL FACTOR; EPIDEMIOLOGY; HEALTH STATUS INDICATOR; LUPUS ERYTHEMATOSUS, SYSTEMIC; PSYCHOMETRY; TOTAL QUALITY MANAGEMENT;

CONFOUNDING FACTORS (EPIDEMIOLOGY); CROSS-CULTURAL COMPARISON; HEALTH STATUS INDICATORS; HUMANS; LUPUS ERYTHEMATOSUS, SYSTEMIC; PSYCHOMETRICS; QUALITY IMPROVEMENT; QUALITY OF LIFE; RANDOMIZED CONTROLLED TRIALS AS TOPIC;

MLCS; MLOWN;

EID: 84891482920     PISSN: 15233774     EISSN: 15346307     Source Type: Journal    
DOI: 10.1007/s11926-013-0380-9     Document Type: Article

References (85)

1. Wilson IB, Cleary PD. Linking clinical variables with health-related quality of life. A conceptual model of patient outcomes. JAMA. 1995;273(1):59-65.
2. Urowitz MB, Gladman DD, Tom BD, Ibanez D, Farewell VT. Changing patterns in mortality and disease outcomes for patients with systemic lupus erythematosus. J Rheumatol. 2008;35(11):2152-8.
3. Jolly M. How does quality of life of patients with systemic lupus erythematosus compare with that of other common chronic illnesses? J Rheumatol. 2005;32(9):1706-8. (Pubitemid 41324807)
4. Smolen JS, Strand V, Cardiel M, Edworthy S, Furst D, Gladman D, et al. Randomized clinical trials and longitudinal observational studies in systemic lupus erythematosus: consensus on a preliminary core set of outcome domains. J Rheumatol. 1999;26(2):504-7. (Pubitemid 29066766)
5. FDA Guidance on Patient Reported Outcomes. " http://wwwfdagov/ downloads/Drugs/GuidanceComplianceRegulatoryInformation/Guidances/UCM193282pdf " [Internet]. 2010.
6. Strand V, Gladman D, Isenberg D, Petri M, Smolen J, Tugwell P. Endpoints: consensus recommendations from OMERACT IV. Outcome measures in rheumatology. Lupus. 2000;9(5):322-7. (Pubitemid 30389032)
7. Alarcon GS, McGwin Jr G, Uribe A, Friedman AW, Roseman JM, Fessler BJ, et al. Systemic lupus erythematosus in a multiethnic lupus cohort (LUMINA).XVII. Predictors of self-reported health-related quality of life early in the disease course. Arthritis Rheum. 2004;51(3):465-74. (Pubitemid 38725149)
8. McElhone K, Abbott J, Gray J, Williams A, Teh LS. Patient perspective of systemic lupus erythematosus in relation to health-related quality of life concepts: a qualitative study. Lupus. 2010;14:1640-7.
9. Jolly M, Utset TO. Can disease specific measures for systemic lupus erythematosus predict patients health related quality of life? Lupus. 2004;13(12):924-6. (Pubitemid 39664951)
10. Doward LC, McKenna SP, Whalley D, Tennant A, Griffiths B, Emery P, et al. The development of the L-QoL: a quality-of-life instrument specific to systemic lupus erythematosus. Ann Rheum Dis. 2009;68(2):196-200. Erratum appears in Ann Rheum Dis. 2011 Aug;70(8):1519.
11. Zhu TY, Tam LS, Lee VW, Lee KK, Li EK. Relationship between flare and health-related quality of life in patients with systemic lupus erythematosus. J Rheumatol. 2010;37(3):568-73.
12. Julian LJ, Yelin E, Yazdany J, Panopalis P, Trupin L, Criswell LA, et al. Depression, medication adherence, and service utilization in systemic lupus erythematosus. Arthritis Rheum. 2009;61(2):240-6.
13. Stamm TA, Bauernfeind B, Coenen M, Feierl E, Mathis M, Stucki G, et al. Concepts important to persons with systemic lupus erythematosus and their coverage by standard measures of disease activity and health status. Arthritis Rheum. 2007;57(7):1287-95. (Pubitemid 47585476)
14. • Jolly M, Pickard AS, Block JA, Kumar RB, Mikolaitis RA, Wilke CT, et al. Disease-specific patient reported outcome tools for systemic lupus erythematosus. Semi Arthritis Rheum. 2012;42(1):56-65. This article describes the development, reliabililty and validity of LupusPRO; a disease-targeted patient-reported health outcome tool.
15. Burckhardt CS, Archenholtz B, Bjelle A. Quality of life of women with systemic lupus erythematosus: a comparison with women with rheumatoid arthritis. J Rheumatol. 1993;20(6):977-81. (Pubitemid 23203238)
16. Aggarwal R, Wilke CT, Pickard AS, Vats V, Mikolaitis R, Fogg L, et al. Psychometric properties of the EuroQol-5D and Short Form-6D in patients with systemic lupus erythematosus. J Rheumatol. 2009;36(6):1209-16.
17. Kuriya BGD, Ibañez D, Urowitz MB. Quality of Life over time in patients with systemic Lupus Erythematosus. Arthritis Rheum. 2008;59(2):181-5. (Pubitemid 351272952)
18. Harrison MJ, Ahmad Y, Haque S, Dale N, Teh LS, Snowden N, et al. Construct and criterion validity of the short form-6D utility measure in patients with systemic lupus erythematosus. J Rheumatol. 2012;39(4):735-42.
19. Yazdany J. Health-related quality of life measurement in adult systemic lupus erythematosus: Lupus Quality of Life (LupusQoL), Systemic Lupus Erythematosus-Specific Quality of Life Questionnaire (SLEQOL), and Systemic Lupus Erythematosus Quality of Life Questionnaire (L-QoL). Arthritis Care Res. 2011;63 Suppl 11:S413-9. Review.
20. • Castelino M, Abbott J, McElhone K, LS T. Comparison of the psychometric properties of health-related quality of life measures used in adults with systemic lupus erythematosus: a review of the literature. Rheumatology (Oxford). 2013;52(4):684-96. This article compares the psychometric properties of different HRQoL questionnaires.
21. Ow YLM, Thumboo J, Cella D, Cheung YB, Yong Fong K, Wee HL. Domains of health-related quality of life important and relevant to multiethnic English-speaking Asian systemic lupus erythematosus patients: a focus group study. Arthritis Care Res. 2011;63(6):899-908.
22. Leong KP, Kong KO, Thong BY, Koh ET, Lian TY, Teh CL, et al. Development and preliminary validation of a systemic lupus erythematosus-specific quality-of-life instrument (SLEQOL). Rheumatology. 2005;44(10):1267-76. (Pubitemid 41487960)
23. Body Image: A handbook of theory, Research, & Clinical Practice. NY: Guilford Press; 2002, 2002.
24. Jolly M, Pickard AS, Mikolaitis RA, et al. Body image in patients with systemic Lupus Erythematosus. Int J Behav Med. 2012;19(2):157-64.
25. Toloza SM, Jolly M, Alarcon GS. Quality-of-life measurements in multiethnic patients with systemic lupus erythematosus: cross-cultural issues. Curr Rheumatol Rep. 2010;12(4):237-49. Review.
26. Jolly M, Cornejo J, Mikolaitis RA, JA B. LupusPRO and responsiveness to changes in health status and disease activity over time. Arthritis Rheum. 2011;63(10s):S898-S.
27. Jolly M, Kosinski M, SM T, al e. Equivalence of various language versions of Lupus Specific Patient Reported Outcome Measure: LupusPRO. Arthritis & Rheum. 2012;4(10):S607-S.
28. Jolly M, Block JA, RA M, al e. Spanish LupusPRO: cross cultural validation study for lupus. Arthritis & Rheumatism. 2011;63(10s):S725.
29. Salvador M, Tananguan RM, Jolly M, Navarra SV. Validation of the Filipino version of LupusPro(R) questionnaire among Filipino patients with systemic lupus erythematosus: APLAR-0471. Int J Rheum Dis. 2013;16(Supplement 1):82. Abstract.
30. Navarra SV, Tanangunan RM, Mikolaitis-Preuss RA, Kosinski M, Block JA, Jolly M. Cross-cultural validation of a disease-specific patient-reported outcome measure for lupus in Philippines. Lupus. 2013;22(3):262-7.
31. Bourre-Tessier J, Clarke AE, Mikolaitis-Preuss RA, Kosinski M, Bernatsky S, Block JA, et al. Cross-cultural validation of a disease-specific patient-reported outcome measure for systemic Lupus Erythematosus in Canada. J Rheumatol. 2013;40(8):1327-33.
32. Bourré-Tessier J, Clarke AE, Mikolaitis-Preuss RA, Kosinski M, Block JA, M J. Validation of French version of LupusPRO among Canadian Lupus patients. Arthritis & Rheumatism. 2012;64(10s):S947-S.
33. Kaya A, Goker B, Cura ES, Tezcan ME, Tufan A, al e. Turkish lupusPRO: cross-cultural validation study for lupus. Clin Rheumatol 2013 Aug 11[Epub ahead of print]. 2013.
34. Jolly M, Kosinski M, Garris CP, et al. Development of the Lupus Impact Tracker: a tool for patients and physicians to assess and monitor the impact of systemic lupus erythematosus. Value Health. 2011;14(3):A 65-A6. Abstract.
35. Jolly M, Kosinski M, Garris CP, Ogelsby A. Validation of the Lupus Impact Tracker (LIT), a patient reported outcome tool, in a prospective multicenter longitudinal study of systemic lupus erythematosus patients. Value Health. 2012;15(7):A 515.
36. Jolly M, Kosinski M, Garris CP. Validation of the Lupus Tracker. Value in Health. Value Health. 2011;14(3):A 65.
37. Jolly M, Pickard AS, Sequeira W, Wallace DJ, Solem CT, et al. A brief assessment tool for body image in systemic lupus erythematosus. Body Image. 2012;9(2):279-84.
38. McElhone K, Abbott J, Shelmerdine J, Bruce IN, Ahmad Y, Gordon C, et al. Development and validation of a disease-specific health-related quality of life measure, the LupusQol, for adults with systemic lupus erythematosus. Arthritis Rheum. 2007;57(6):972-9. (Pubitemid 47237322)
39. Moorthy LN, Peterson MG, Baratelli MJ, al e. Preliminary cross-cultural adaptation of a new pediatric health-related quality of life scale in children with systemic lupus erythematosus: an international effort. Lupus. 2010. p. 83-8.
40. • Kasitanon N, Wangkaew S, Puntana S, Sukitawut W, Leong KP, TTSHLS Group, et al. The reliability, validity and responsiveness of the Thai version of Systemic Lupus Erythematosus quality of life (SLEQOL-TH) instrument. Lupus. 2013;22(3):289-96. This article highlights the psychometric properties of the Thai version of SLEQOL-TH questionnaire.
41. Kong KO, Ho HJ, Howe HS, Thong BY, Lian TY, Chng HH, et al. Cross-cultural adaptation of the systemic Lupus Erythematosus quality of life questionnaire into Chinese. Arthritis Rheum. 2007;57(6):980-5. (Pubitemid 47237323)
42. Freire EA, Bruscato A, Leite DR, Sousa TT, Ciconelli RM. Translation into Brazilian Portuguese, cultural adaptation and validatation of the systemic lupus erythematosus quality of life questionnaire (SLEQOL). Acta Reumatologica Portuguesa. 2010;35(3):334-9.
43. Jolly M, Pickard AS, Wilke C, Mikolaitis RA, Teh LS, McElhone K, et al. Lupus-specific health outcome measure for US patients: the LupusQoL-US version. Ann Rheum Dis. 2009;69:29-33.
44. Gonzalez-Rodriguez V, Peralta-Ramirez MI, Navarrete-Navarrete N, Callejas-Rubio JL, Santos Ruiz AM, Khamashta M. Adaptation and validation of the Spanish version of a disease-specific quality of life measure in patients with systemic lupus erythematosus: the Lupus quality of life. Med Clin. 2010;134(1):13-6. Spanish.
45. Devilliers H, Amoura Z, Besancenot JF, Bonnotte B, Pasquali JL, Wahl D, et al. LupusQoL-FR is valid to assess quality of life in patients with systemic lupus erythematosus. Rheumatology. 2012;51(10):1906-15.
46. Jolly M, Toloza S, Block J, Mikolaitis R, Kosinski M, Wallace D, et al. Spanish LupusPRO: cross-cultural validation study for lupus. Lupus. 2013;22(5):431-6.
47. Moldovan I, Katsaros E, Carr FN, Cooray D, Torralba K, Shinada S, et al. The patient reported outcomes in Lupus (PATROL) study: role of depression in health-related quality of life in a Southern California lupus cohort. Lupus. 2011;12:1285-92.
48. Carr FN, Nicassio PM, Ishimori ML, Moldovan I, Katsaros E, Torralba K, et al. Depression predicts self-reported disease activity in systemic lupus erythematosus. Lupus. 2011;20(1):80-4.
49. Choi ST, Kang JI, Park IH, Lee YW, Song JS, Park YB, et al. Subscale analysis of quality of life in patients with systemic lupus erythematosus: association with depression, fatigue, disease activity and damage. Clin Exp Rheumatol. 2012;30(5):665-72.
50. Kulczycka L, Sysa-Jedrzejowska A, Robak E. Quality of life and satisfaction with life in SLE patients-the importance of clinical manifestations. Clin Rheumatol. 2010;29(9):991-7.
51. Daleboudt GM, Broadbent E, Berger SP, Kaptein AA. Illness perceptions in patients with systemic lupus erythematosus and proliferative lupus nephritis. Lupus. 2011;3:290-8.
52. Appenzeller S, Clarke AE, Panopalis P, Joseph L, St Pierre Y, Li T. The relationship between renal activity and quality of life in systemic lupus erythematosus. J Rheumatol. 2009;36(5):947-52.
53. Hyphantis T, Palieraki K, Voulgari PV, Tsifetaki N, Drosos AA. Coping with health-stressors and defence styles associated with health-related quality of life in patients with systemic lupus erythematosus. Lupus. 2011;9:893-903.
54. McElhone K, Castelino M, Abbott J, Bruce IN, Ahmad Y, Shelmerdine J, et al. The LupusQoL and associations with demographics and clinical measurements in patients with systemic lupus erythematosus. J Rheumatol. 2010;37(11):2273-9.
55. Jolly M, Pickard SA, Mikolaitis RA, Rodby RA, Sequeira W, Block JA. LupusQoL-US benchmarks for US patients with systemic lupus erythematosus. J Rheumatol. 2010;37(9):1828-33.
56. Jolly M, Kazmi N, Mikolaitis RA, Sequeira W, JA B. Validation of the Cutaneous Lupus Disease Area and Severity Index (CLASI) using physician- and patient-assessed health outcome measures. J Am Acad Dermatol. 2012.
57. Navarrete-Navarrete N, Peralta-Ramírez MI, Sabio-Sánchez JM, et al. Efficacy of cognitive behavioural therapy for the treatment of chronic stress in patients with lupus erythematosus: a randomized controlled trial. Psychother Psychosom. 2010;79(2):107-15.
58. Abrahao MI, Montenegro-Rodrigues R, Marangoni RG. et al. Impact of physical activity program in systemic Lupus Erythematosus. Arthritis & Rheum. 2009;60(10 S):1123-.
59. Furie R, Petri M, Zamani O, Cervera R, Wallace DJ, Tegzova D, et al. A phase III, randomized, placebo-controlled study of belimumab, a monoclonal antibody that inhibits B lymphocyte stimulator, in patients with systemic lupus erythematosus. Arthritis Rheum. 2011;63(12):3918-30.
60. Hartkamp A, Geenen R, Godaert GL, Bijl M, Bijlsma JW, Derksen RH. Effects of dehydroepiandrosterone on fatigue and well-being in women with quiescent systemic lupus erythematosus: a randomised controlled trial. Ann Rheum Dis. 2010;69(6):1144-7.
61. Griffiths B, Emery P, Ryan V, Isenberg D, Akil M, Thompson R, et al. The BILAG multi-centre open randomized controlled trial comparing ciclosporin vs azathioprine in patients with severe SLE. Rheumatology. 2010;49(4):723-32. Erratum appears in Rheumatology (Oxford). 2011 Mar;50(3):634.
62. Jolly M, Sandler DS, Sequeira W, Block JA. Hydroxy-Chloroquine Use and Disease Specific Health Related Quality of Life in Systemic Lupus Erythematosus. Arthritis Rheum. 2010;60(10s):S108.
63. Merrill JT, Neuwelt CM, Wallace DJ, Shanahan JC, Latinis KM, Oates JC, et al. Efficacy and safety of rituximab in moderately-to-severely active systemic lupus erythematosus: the randomized, double-blind, phase II/III systemic lupus erythematosus evaluation of rituximab trial. Arthritis Rheum. 2010;62(1):222-33.
64. van Vollenhoven RF, Petri MA, Cervera R, Roth DA, Ji BN, Kleoudis CS, et al. Belimumab in the treatment of systemic lupus erythematosus: high disease activity predictors of response. Ann Rheum Dis. 2012;71(8):1343-9.
65. Thumboo J, Strand V. Health-related quality of life in patients with systemic lupus erythematosus: an update. Ann Acad Med Singap. 2007;36(2):115-22 [Review] [56 refs]. (Pubitemid 46640263)
66. Bruce IN, Mak VC, Hallett DC, Gladman DD, Urowitz MB. Factors associated with fatigue in patients with systemic lupus erythematosus. Ann Rheum Dis. 1999;58(6):379-81. (Pubitemid 29276997)
67. Torrente-Segarra V, Carbonell-Abello J, Castro-Oreiro S, Manresa Dominguez JM. Association between fibromyalgia and psychiatric disorders in systemic lupus erythematosus. Clin Exp Rheumatol. 2010;28(6 Suppl 63):S22-6.
68. Hanly JG, Su L, Omisade A, Farewell VT, Fisk JD. Screening for cognitive impairment in systemic lupus erythematosus. J Rheumatol. 2012;39(7):1371-7.
69. Peretti CS, Peretti CR, Kozora E, Papathanassiou D, Chouinard VA, Chouinard G. Cognitive impairment in systemic lupus erythematosus women with elevated autoantibodies and normal single photon emission computerized tomography. Psychother Psychosom. 2012;81(5):276-85.
70. Julian LJ, Tonner C, Yelin E, Yazdany J, Trupin L, Criswell LA, et al. Cardiovascular and disease-related predictors of depression in systemic lupus erythematosus. Arthritis Care Res. 2011;63(4):542-9.
71. Jolly M, Mikolaitis RA, Shakoor N, Fogg LF, Block JA. Education, zip code-based annualized household income, and health outcomes in patients with systemic lupus erythematosus. J Rheumatol. 2010;37(6):1150-7.
72. Dua AB, Aggarwal R, Mikolaitis RA, Sequeira W, Block JA, Jolly M. Rheumatologists' quality of care for lupus: comparison study between a university and county hospital. Arthritis Care Res. 2012;64(8):1261-4.
73. Bennett JK, Fuertes JN, Keitel M, Phillips R. The role of patient attachment and working alliance on patient adherence, satisfaction, and health-related quality of life in lupus treatment. Patient Educ Couns. 2011;85(1):53-9.
74. Zuluaga MC, Guallar-Castillon P, Lopez-Garcia E, Banegas JR, Conde-Herrera M, Olcoz-Chiva M, et al. Generic and disease-specific quality of life as a predictor of long-term mortality in heart failure. Eur J Heart Fail. 2010;12(12):1372-8.
75. Kanwal F, Gralnek IM, Hays RD, Zeringue A, Durazo F, Han SB, et al. Health-related quality of life predicts mortality in patients with advanced chronic liver disease. Clin Gastroenterol Hepatol. 2009;7(7):793-9.
76. Issa SM, Hoeks SE, Scholte op Reimer WJ, Van Gestel YR, Lenzen MJ, Verhagen HJ, et al. Health-related quality of life predicts long-term survival in patients with peripheral artery disease. Vasc Med. 2010;15(3):163-9.
77. Michaud K, Vera-Llonch M, Oster G. Mortality risk by functional status and health-related quality of life in patients with rheumatoid arthritis. J Rheumatol. 2012;39(1):54-9.
78. Fernandez M, Alarcon GS, McGwin Jr G, Sanchez ML, Apte M, Vila LM, et al. Using the Short Form 6D, as an overall measure of health, to predict damage accrual and mortality in patients with systemic lupus erythematosus: XLVII, results from a multiethnic US cohort. Arthritis Rheum. 2007;57(6):986-92. (Pubitemid 47237324)
79. Lupus Applications for Android. Internet [Internet]. 2013 9/13/13 AD. Available from: http://blog.laptopmag.com/best-lupus-apps?slide=1.
80. Healthy Tweeting. Internet [Internet]. 2013; Last accessed 09/13/2013. Available from: http://www.healthytweeting.com/.
81. USinLUPUS. Lupus Impact Tracker. Last lvisited 12/11/12 [Internet]. 2012. Available from: http://www.usinlupus.com/content/dam/usinlupus/.
82. Touma Z, Gladman DD, Ibanez D, Urowitz MB. Is there an advantage over SF-36 with a quality of life measure that is specific to systemic Lupus Erythematosus? J Rheumatol. 2011;38:1898-905.
83. Ware JE. The SF-36 Health Survey. In: B S, editor. Quality of life and pharmacoeconomics in clinical trials. Second ed. Philadelphia: Lippincott-Raven; 1996. p. 337-45.
84. Brazier JE, Tsuchiya A, Roberts J, J B. A comparison of the EQ-5D and the SF-6D across seven patient groups. Health Economics. 2004;13:873-84. (Pubitemid 39264234)
85. Group E. EuroQol: a new facility for the measurement of health-related quality of life. Health Pol. 1990;16:199-208.