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PRACA PRZEGLĄDOWA
Quality of life in systemic lupus erythematosus and its measurement
 
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Data nadesłania: 16-01-2018
 
 
Data ostatniej rewizji: 01-03-2018
 
 
Data akceptacji: 01-03-2018
 
 
Data publikacji online: 28-02-2018
 
 
Data publikacji: 30-04-2018
 
 
Reumatologia 2018;56(1):45-54
 
SŁOWA KLUCZOWE
DZIEDZINY
STRESZCZENIE
Systemic lupus erythematosus (SLE) is multi-system autoimmune rheumatic disorder with very broad clinical picture. Due to its generalized nature it influences all aspects of patient’s life: physical, psychological and social well-being. With the development in diagnosis and treatment of SLE, median survival increased significantly over the past years. This article focused on the elements of quality of life, which are especially important for SLE patients, like body image, fatigue, family relations, disease impact on professional and social life. The quality of life could be measured with two different instruments: generic and disease-specific questionnaires. Generic ones are used to assess the quality of life of patients comparing to general population whereas specific questionnaires are designed to measure outcomes in one specific disease. The aim of the article is to describe HRQoL in SLE patients and the variables important for patients which have impact on it.
 
REFERENCJE (43)
1.
Zimmerman-Górska I. Postępy w reumatologii klinicznej. Wyd. Lek. PZWL 2014; 129-159.
 
2.
Rinaldi S, Doria A, Salaffi F, et al. Health-related quality of life in Italian patients with systemic lupus erythematosus. I. Relationship between physical and mental dimension and impact of age. Rheumatology (Oxford) 2004; 43: 1574-1579.
 
3.
McElhone K, Abbott J, Teh LS. A review of health related quality of life in systemic lupus erythematosus. Lupus 2006; 15: 633-643.
 
4.
Danchenko N, Satia JA, Anthony MS. Epidemiology of systemic lupus erythematosus: a comparison of worldwide disease burden. Lupus 2006; 15: 308-318.
 
5.
Lim S, Drenkard C. Chapter 2. The epidemiology of lupus. In: Wallace DJ, Hahn B. Dubois’ Lupus Erythematosus and Related Syndromes. Saunders, Philadelphia 2013; 14.
 
6.
Toczeń rumieniowaty układowy w Polsce. Raport. On-line. Majdan M (ed.). Warszawa 2012; Access: 4.02.2016.
 
7.
Gotay CC, Korn EL, McCabe MS, et al. Quality-of-life assessment in cancer treatment protocols: research issues in protocol development. J Natl Cancer Inst 1992; 84: 575-579.
 
8.
Navarrete-Navarrete N, Peralta-Ramírez MI, Sabio JM, et al. Quality-of-life predictor factors in patients with SLE and their modification after cognitive behavioural therapy. Lupus 2010; 19: 1632-1639.
 
9.
Phillips RH. Coping with Lupus. Avery Penguin Putnam, New York 2001.
 
10.
Urowitz M, Gladman DD, Ibańez D, et al. Changes in quality of life in the first 5 years of disease in a multicenter cohort of patients with systemic lupus erythematosus. Arthritis Care Res (Hoboken) 2014; 66: 1374-1379.
 
11.
Sutcliffe N, Clarke A, Levinton C, et al. Associates of health status in patients with systemic lupus erythematosus. J Rheumatol 1999; 26: 2352-2356.
 
12.
Farinha F, Freitas F, Águeda A, et al. Concerns of patients with systemic lupus erythematosus and adherence to therapy – a qualitative study. Patient Prefer Adherence 2017; 11: 1213-1219.
 
13.
Baranowska M. To jest wasze życie. Być sobą w chorobie przewlekłej. Wyd. Czarne, Białystok 2011.
 
14.
Wallace D. The Lupus Book. A Guide for Patients and Their Familes. Oxford University Press, Oxford 2005.
 
15.
McElhone K, Abbott J, Gray J, et al. Patient perspective of systemic lupus erythematosus in relation to health-related quality of life concepts: a qualitative study. Lupus 2010; 19: 1640-1647.
 
16.
Bauernfeind B, Aringer M, Prodinger B, et al. Identification of relevant concepts of functioning in daily life in people with systemic lupus erythematosus: A patient Delphi exercise. Arthritis Rheum 2009; 61: 21-28.
 
17.
Mattsson M, Möller B, Stamm T, et al. Uncertainty and opportunities in patients with established systemic lupus erythematosus: a qualitative study. Musculoskeletal Care 2012; 10: 1-12.
 
18.
Holloway L. Patient-reported outcome measures for systemic lupus erythematosus clinical trials: a review of content validity, face validity and psychometric performance. Health Qual Life Outcomes 2014; 12: 116.
 
19.
Moskalewicz B. W poszukiwaniu kulturowych przyczyn zmęczenia u chorej na toczeń rumieniowaty układowy. Reumatologia 2007; 45: 18-26.
 
20.
Hawlett S, Chalder T, Choy E, et al. Fatigue in rheumatoid arthritis. Time for conceptual model. Rheumatology (Oxford) 2011; 50: 1004-1006.
 
21.
Ahn GE, Ramsey-Goldman R. Fatigue in systemic lupus erythematosus. Int J Clin Rheumatol 2012; 7: 217-227.
 
22.
McKinley PS, Ouellette SC, Winkel GH. The contributions of disease activity, sleep patterns, and depression to fatigue in systemic lupus erythematosus. Arthritis Rheum 1995; 38: 826-834.
 
23.
Cleanthous S, Tyagi M. What do we know about self-reported fatigue in systemic lupus erythematosus? Lupus 2012; 21: 465-476.
 
24.
Robb-Nicholson L, Daltroy L, Eaton H, et al. Effects of aerobic conditioning in lupus fatigue: a pilot study. Br J Rheumatol 1989; 28: 500-505.
 
25.
Mancuso CA, Perna M, Sargent AB, et al. Perceptions and measurements of physical activity in patients with systemic lupus erythematosus. Lupus 2011; 20: 231-242.
 
26.
Ayán C, Martín V. Systemic lupus erythematosus and exercise, Lupus 2007; 16: 5-9.
 
27.
Tamayo T, Fischer-Betz R, Beer S, et al. Factors influencing the health related quality of life in patients with systemic lupus erythematosus: long-term results (2001–2005) of patients in the German Lupus Erythematosus Self-Help Organization (LULA Study). Lupus 2010; 19: 1606-1613.
 
28.
Toloza SM, Sequeira W, Jolly M. Treatment of lupus: impact on quality of life. Curr Rheumatol Rep 2011; 13: 324-337.
 
29.
Stoll T, Gordon C, Seifert B, et al. Consistency and validity of patient administered assessment of quality of life by the MOS SF-36; its association with disease activity and damage in patients with systemic lupus erythematosus. J Rheumatol 1997; 24: 1608-1614.
 
30.
WHO: WHOQOL. Measuring Quality of Life. Division of mental health and prevention of substance abuse. WHO 1997.
 
31.
WHO: Constitution of the World Health Organization, Basic Documents. supl. 2006.
 
32.
Klocek M. Kwestionariusze jakości życia w chorobach układu sercowo-naczyniowego. In: Jakość życia w chorobach sercowo-naczyniowych. Kawecka-Jaszcz K, Klocek M, Tobiasz- Adamczyk B (eds.). Termedia, Poznań 2006.
 
33.
Schipper H. Quality of Life: principles of the clinical paradigm. J Psychosocial Oncol 1990; 8: 171-185.
 
34.
Griffiths B, Mosca M, Gordon C. Assessment of patients with systemic lupus erythematosus and the use of lupus disease activity indices. Best Pract Res Clin Rheumatol 2005; 19: 685-708.
 
35.
Jaeschke R. Evidence based medicine (EBM), czyli praktyka medyczna oparta na wiarygodnych i aktualnych publikacjach (POWAP). Odcinek 8. Określanie i mierzenie jakości życia związanej ze zdrowiem. Medycyna Praktyczna 1999; 4: 155-162.
 
36.
Tylka J, Piotrowicz R. Quality of life SF-36 questionnaire – the Polish version. Kardiol Pol 2009; 67: 1166-1169.
 
37.
Stewart AL, Hays RD, Ware JE Jr. The MOS short-form general health survey. Reliability and validity in a patient population. Med Care 1988; 26: 724-735.
 
38.
Rabin R, de Charro F. EQ-5D: A measure of health status from the EuroQol Group. Ann Med 2001; 33: 337-334.
 
39.
Leong KP, Kong KO, Thong BY, et al. Development and preliminary validation of a systemic lupus erythematosus-specific quality-of-life instrument (SLEQOL). Rheumatology (Oxford) 2005; 44: 1267-1276.
 
40.
The World Health Organization Quality of Life assessment (WHOQOL): position paper from the World Health Organization. Soc Sci Med 1995; 41: 1403-1409.
 
41.
McElhone K, Abbott J, Shelmerdine J, et al. Development and validation of a disease-specific health-related quality of life measure, the Lupus Qol, for adults with systemic lupus erythematosus. Arthritis Rheum 2007; 57: 972-979.
 
42.
Yee CS, McElhone K, Teh LS, et al. Assessment of disease activity and quality of life in systemic lupus erythematosus – new aspects. Best Pract Res Clin Rheumatol 2009; 23: 457-467.
 
43.
Jolly M, Pickard AS. Disease-specific patient reported outcome tools for systemic lupus erythematosus. Semin Arthritis Rheum 2012; 42: 56-65.
 
Copyright: © Narodowy Instytut Geriatrii, Reumatologii i Rehabilitacji w Warszawie. This is an Open Access journal, all articles are distributed under the terms of the Creative Commons Attribution-NonCommercial-ShareAlike 4.0 International (CC BY-NC-SA 4.0) License (https://creativecommons.org/licenses/by-nc-sa/4.0/), allowing third parties to copy and redistribute the material in any medium or format and to remix, transform, and build upon the material, provided the original work is properly cited and states its license.
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