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REFERENCES

  • 1
    Rus V, Hajeer A, Hochberg M. Systemic lupus erythematosus. In: Silman A, Hochberg M, editors.Epidemiology of the rheumatic diseases. 2nd ed.New York:Oxford University Press;2001. p.12340.
  • 2
    Campbell R Jr, Cooper GS, Gilkeson GS.Two aspects of the clinical and humanistic burden of systemic lupus erythematosus: mortality risk and quality of life early in the course of disease.Arthritis Rheum2008;59:45864.
  • 3
    O'Neill S, Cervera R.Systemic lupus erythematosus.Best Pract Res Clin Rheumatol2010;24:84155.
  • 4
    Pisetsky D, Buyon J, Manzi S. Systemic lupus erythematosus. In: Klippel J, Crofford L, Stone J, Weyand C, editors.Primer on the rheumatic diseases. 12th ed.Atlanta (GA):Arthritis Foundation;2001. p.32952.
  • 5
    Croker JA, Kimberly RP.SLE: challenges and candidates in human disease.Trends Immunol2005;26:5806.
  • 6
    Smith EL, Shmerling RH.The American College of Rheumatology criteria for the classification of systemic lupus erythematosus: strengths, weaknesses, and opportunities for improvement.Lupus1999;8:58695.
  • 7
    Pons-Estel GJ, Alarcon GS, Scofield L, Reinlib L, Cooper GS.Understanding the epidemiology and progression of systemic lupus erythematosus.Semin Arthritis Rheum2010;39:25768.
  • 8
    Mok CC.Epidemiology and survival of systemic lupus erythematosus in Hong Kong Chinese.Lupus2011;20:76771.
  • 9
    D'Cruz DP, Khamashta MA, Hughes GR.Systemic lupus erythematosus.Lancet2007;369:58796.
  • 10
    Seawell AH, Danoff-Burg S.Psychosocial research on systemic lupus erythematosus: a literature review.Lupus2004;13:8919.
  • 11
    Ginsburg KS, Wright EA, Larson MG, Fossel AH, Albert M, Schur P, et al.A controlled study of the prevalence of cognitive dysfunction in randomly selected patients with systemic lupus erythematosus.Arthritis Rheum1992;35:77682.
  • 12
    Dobkin PL, Fortin PR, Joseph L, Esdaile JM, Danoff DS, Clarke AE.Psychosocial contributors to mental and physical health in patients with systemic lupus erythematosus.Arthritis Care Res1998;11:2331.
  • 13
    Ward MM, Lotstein DS, Bush TM, Lambert RE, van Vollenhoven R, Neuwelt CM.Psychosocial correlates of morbidity in women with systemic lupus erythematosus.J Rheumatol1999;26:21538.
  • 14
    Neville C, Clarke AE, Joseph L, Belisle P, Ferland D, Fortin PR.Learning from discordance in patient and physician global assessments of systemic lupus erythematosus disease activity.J Rheumatol2000;27:6759.
  • 15
    Leong KP, Chong EY, Kong KO, Chan SP, Thong BY, Lian TY, et al.Discordant assessment of lupus activity between patients and their physicians: the Singapore experience.Lupus2010;19:1006.
  • 16
    Yen JC, Neville C, Fortin PR.Discordance between patients and their physicians in the assessment of lupus disease activity: relevance for clinical trials.Lupus1999;8:66070.
  • 17
    Gladman DD, Ibanez D, Urowitz MB.Systemic Lupus Erythematosus Disease Activity Index 2000.J Rheumatol2002;29:28891.
  • 18
    Greco CM, Rudy TE, Manzi S.Effects of disease activity, pain, and distress on activity limitations in patients with systemic lupus erythematosus.J Rheumatol2004;31:2607.
  • 19
    Liang MH, Socher SA, Larson MG, Schur PH.Reliability and validity of six systems for the clinical assessment of disease activity in systemic lupus erythematosus.Arthritis Rheum1989;32:110718.
  • 20
    Wang C, Mayo NE, Fortin PR.The relationship between health related quality of life and disease activity and damage in systemic lupus erythematosus.J Rheumatol2001;28:52532.
  • 21
    Thomas J, Harden A.Methods for the thematic synthesis of qualitative research in systematic reviews.BMC Med Res Methodol2008;8:45.
  • 22
    Tong A, Flemming K, McInnes E, Oliver S, Craig J.Enhancing transparency in reporting the synthesis of qualitative research: ENTREQ.BMC Med Res Methodol2012;12:181.
  • 23
    Tong A, Sainsbury P, Craig J.Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups.Int J Qual Health Care2007;19:34957.
  • 24
    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.Lupus2010;19:16407.
  • 25
    Nowicka-Sauer K.Patients' perspective: lupus in patients' drawings.Clin Rheumatol2007;26:15235.
  • 26
    Schattner E, Shahar G, Abu-Shakra M.‘I used to dream of lupus as some sort of creature’: chronic illness as an internal object.Am J Orthopsychiatry2008;78:46672.
  • 27
    Karlen A.The impact of systemic lupus erythematosus on the sexual experience of women: a qualitative study [dissertation].Diss Abstr Int1997;58:4748.
  • 28
    Taieb O, Bricou O, Baubet T, Gaboulaud V, Gal B, Mouthon L, et al.Patients' beliefs about the causes of systemic lupus erythematosus.Rheumatology (Oxford)2010;49:5929.
  • 29
    Zeddies AM.Chronic illness in context: examining sociocultural factors in women's experience of lupus [dissertation].Diss Abstr Int2002;62:5985.
  • 30
    Porter DF.The effects of active systemic lupus erythematosus on the daily life experiences of women diagnosed with the disease [9982102].Carbondale (IL):Southern Illinois University at Carbondale;2000.
  • 31
    Whalley D, McKenna S, de Jong Z, van der Heijde D.Quality of life in rheumatoid arthritis.Br J Rheumatol1997;36:8848.
  • 32
    Cinar FI, Unver V, Yilmaz S, Cinar M, Yilmaz F, Simsek I, et al.Living with scleroderma: patients' perspectives, a phenomenological study.Rheumatol Int2012;32:35739.
  • 33
    Joachim G, Acorn S.Life with a rare chronic disease: the scleroderma experience.J Adv Nurs2003;42:598606.
  • 34
    Doria A, Zen M, Canova M, Bettio S, Bassi N, Nalotto L, et al.SLE diagnosis and treatment: when early is early.Autoimmun Rev2010;10:5560.
  • 35
    Dissanayake RK, Bertouch JV.Psychosocial interventions as adjunct therapy for patients with rheumatoid arthritis: a systematic review.Int J Rheum Dis2010;13:32434.
  • 36
    Zhang J, Wei W, Wang C.Effects of psychological interventions for patients with systemic lupus erythematosus: a systematic review and meta-analysis.Lupus2012;21:107787.
  • 37
    Mazzoni D, Cicognani E.Social support and health in patients with systemic lupus erythematosus: a literature review.Lupus2011;20:111725.
  • 38
    Mendelson C.Gentle hugs: internet listservs as sources of support for women with lupus.ANS Adv Nurs Sci2003;26:299306.
  • 39
    Miles A.Of butterflies and wolves: enacting lupus transformations on the internet.Anthropol Med2009;16:112.
  • 40
    Cervera R, de Ramon E, Fernandez-Nebro A, Galeazzi M, Valen M, Mathieu A, et al.Morbidity and mortality in systemic lupus erythematosus during a 10-year period: a comparison of early and late manifestations in a cohort of 1,000 patients.Medicine (Baltimore)2003;82:299308.
  • 41
    Goldblatt F, Isenberg DA.New therapies for systemic lupus erythematosus.Clin Exp Immunol2005;140:20512.
  • 42
    Mendelson C.Diagnosis: a liminal state for women living with lupus.Health Care Women Int2009;30:390407.
  • 43
    Mok CC.Management of systemic lupus erythematosus in Chinese patients.Expert Rev Clin Immunol2007;3:92535.
  • 44
    Yee CS, McElhone K, Teh LS, Gordon C.Assessment of disease activity and quality of life in systemic lupus erythematosus: new aspects.Best Pract Res Clin Rheumatol2009;23:45767.
  • 45
    Archenholtz B, Burckhardt CS, Segesten K.Quality of life of women with systemic lupus erythematosus or rheumatoid arthritis: domains of importance and dissatisfaction.Qual Life Res1999;8:4116.
  • 46
    Backman CL, Del Fabro Smith L, Smith S, Montie PL, Suto M.Experiences of mothers living with inflammatory arthritis.Arthritis Rheum2007;57:3818.
  • 47
    Baker JA, Wiginton K.Perceptions and coping among women living with lupus.Am J Health Behav1997;21:12936.
  • 48
    Beckerman NL.Living with lupus: a qualitative report.Soc Work Health Care2011;50:33043.
  • 49
    Burckhardt CS, Archenholtz B, Bjelle A.Quality of life of women with systemic lupus erythematosus: a comparison with women with rheumatoid arthritis.J Rheumatol1993;20:97781.
  • 50
    Carder PC, Vuckovic N, Green CA.Negotiating medications: patient perceptions of long-term medication use.J Clin Pharm Ther2003;28:40917.
  • 51
    Chambers S, Raine R, Rahman A, Hagley K, De Ceulaer K, Isenberg D.Factors influencing adherence to medications in a group of patients with systemic lupus erythematosus in Jamaica.Lupus2008;17:7619.
  • 52
    Chambers SA, Raine R, Rahman A, Isenberg D.Why do patients with systemic lupus erythematosus take or fail to take their prescribed medications? A qualitative study in a UK cohort.Rheumatology (Oxford)2009;48:26671.
  • 53
    Chute EE.The social means of going on: adapting to chronic illness [dissertation].Diss Abstr Int1998;59:3224.
  • 54
    Costenbader KH, Brome D, Blanch D, Gall V, Karlson E, Liang MH.Factors determining participation in prevention trials among systemic lupus erythematosus patients: a qualitative study.Arthritis Rheum2007;57:4955.
  • 55
    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 Dis2009;68:196200.
  • 56
    Gallop K, Nixon A, Swinburn P, Sterling KL, Naegeli AN, Silk M.Development of a conceptual model of health-related quality of life for systemic lupus erythematosus from the patient's perspective.Lupus2012;21:93443.
  • 57
    Garcia Popa-Lisseanu MG, Greisinger A, Richardson M, O'Malley KJ, Janssen NM, Marcus DM, et al.Determinants of treatment adherence in ethnically diverse, economically disadvantaged patients with rheumatic disease.J Rheumatol2005;32:9139.
  • 58
    Goodman D, Morrissey S, Graham D, Bossingham D.Illness representations of systemic lupus erythematosus.Qual Health Res2005;15:60619.
  • 59
    Grant M.Mothers with arthritis, child care and occupational therapy: insight through case studies.Br J Occup Ther2001;64:3229.
  • 60
    Hale ED, Treharne GJ, Norton Y, Lyons AC, Douglas KM, Erb N, et al.‘Concealing the evidence’: the importance of appearance concerns for patients with systemic lupus erythematosus.Lupus2006;15:53240.
  • 61
    Hale ED, Treharne GJ, Lyons AC, Norton Y, Mole S, Mitton DL, et al.“Joining the dots” for patients with systemic lupus erythematosus: personal perspectives of health care from a qualitative study.Ann Rheum Dis2006;65:5859.
  • 62
    Hatfield-Timajchy KS.Delayed diagnosis: the experience of women with systemic lupus erythematosus in Atlanta, Georgia [dissertation].Diss Abstr Int2007;69:267.
  • 63
    Howe MG.The effect of social support on depression in African American women diagnosed with systemic lupus erythematosus [dissertation].Diss Abstr Int2010;70:6554.
  • 64
    Jolly M, Pickard AS, Sequeira W, Wallace DJ, Solem CT, Mikolaitis RA, et al.A brief assessment tool for body image in systemic lupus erythematosus.Body Image2012;9:27984.
  • 65
    Karlen A.Positive sexual effects of chronic illness: case studies of women with lupus (SLE).Sex Disabil2002;20:191208.
  • 66
    Kumar K, Gordon C, Barry R, Shaw K, Horne R, Raza K.‘It's like taking poison to kill poison but I have to get better’: a qualitative study of beliefs about medicines in rheumatoid arthritis and systemic lupus erythematosus patients of South Asian origin.Lupus2011;20:83744.
  • 67
    Mancuso CA, Perna M, Sargent AB, Salmon JE.Perceptions and measurements of physical activity in patients with systemic lupus erythematosus.Lupus2011;20:23142.
  • 68
    Mattje GD, Turato ER.Life experiences with systemic lupus erythematosus as reported in outpatients' perspective: a clinical-qualitative study in Brazil.Rev Lat Am Enfermagem2006;14:47582.
  • 69
    Mattsson M, Moller B, Stamm T, Gard G, Bostrom C.Uncertainty and opportunities in patients with established systemic lupus erythematosus: a qualitative study.Musculoskeletal Care2012;10:112.
  • 70
    Mendelson C.Managing a medically and socially complex life: women living with lupus.Qual Health Res2006;16:98297.
  • 71
    Miljetaig KG, Graue M.Evaluation of a multidisciplinary patient education program for people with systemic lupus erythematosus.J Nurs Healthc Chronic Illn2009;1:8795.
  • 72
    Ow YL, Thumboo J, Cella D, Cheung YB, Fong KY, 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 (Hoboken)2011;63:899908.
  • 73
    Pettersson S, Moller S, Svenungsson E, Gunnarsson I, Welin Henriksson E.Women's experience of SLE-related fatigue: a focus group interview study.Rheumatology (Oxford)2010;49:193542.
  • 74
    Pettersson S, Lovgren M, Eriksson LE, Moberg C, Svenungsson E, Gunnarsson I, et al.An exploration of patient-reported symptoms in systemic lupus erythematosus and the relationship to health-related quality of life.Scand J Rheumatol2012;41:38390.
  • 75
    Robbins L, Allegrante JP, Paget SA.Adapting the Systemic Lupus Erythematosus Self-Help (SLESH) Course for Latino SLE patients.Arthritis Care Res1993;6:97103.
  • 76
    Robinson D Jr, Aguilar D, Schoenwetter M, Dubois R, Russak S, Ramsey-Goldman R, et al.Impact of systemic lupus erythematosus on health, family, and work: the patient perspective.Arthritis Care Res (Hoboken)2010;62:26673.
  • 77
    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 Rheum2007;57:128795.
  • 78
    Waldron N, Brown S, Hewlett S, Elliott B, McHugh N, McCabe C.‘It's more scary not to know’: a qualitative study exploring the information needs of patients with systemic lupus erythematosus at the time of diagnosis.Musculoskeletal Care2011;9:22838.
  • 79
    Wiginton KL.Illness representations: mapping the experience of lupus.Health Educ Behav1999;26:44353.
  • 80
    Wittmann L, Sensky T, Meder L, Michel B, Stoll T, Buchi S.Suffering and posttraumatic growth in women with systemic lupus erythematosus (SLE): a qualitative/quantitative case study.Psychosomatics2009;50:36274.