Living with systemic lupus erythematosus in the developing world
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Most of our understanding of SLE and its negative impact originates from developed countries. This review aims to collate existing literature on Health-Related Quality of Life (HRQoL) in SLE patients living in developing countries to identify the gaps for the focus of future research. A narrative literature review was compiled using selected MeSH terms to search EBSCOHOST for articles published between January 1975 and February 2018 pertaining to HRQoL in SLE patients in developing countries. 31 studies from 11 countries were included for analysis. Only one longitudinal, one randomized controlled trial (RCT), one qualitative study, and two intervention studies were found. High disease activity and organ damage were associated with poor functional ability, mental health and low socio-economic status (SES). Poor SES is a recurring theme in developing countries, and worsens all SLE outcomes by reducing access to healthcare, mental, social and emotional support systems. In developing countries, SLE has a globally negative impact on patients’ HRQoL, similar to that seen in developed countries. There is an urgent need for more HRQoL studies, and in particular, longitudinal, qualitative and interventional studies in these countries to investigate unmet needs, and to explore novel strategies to improve patient outcomes.
KeywordsSystemic lupus erythematosus Health-Related Quality of Life Developing world
The authors acknowledge financial support from the South African National Research Fund.
AP, MS, MT and BH were involved in the conceptualization, planning and execution of this review. All authors contributed to data synthesis and interpretation, simultaneous draft review and the final version of the manuscript.
Compliance with ethical standards
Conflict of interest
Angel Phuti (AP), Marguerite Schneider (MS) and Mohammed Tikly (MT) received no research grants and each declare no conflict of interest. This study was funded by the National Research Fund (NRF); South Africa—Thuthuka Grant no: 443812. Bridget Hodkinson (BH) received this research grant and declares that she has no conflict of interest.
This narrative review includes research studies that enrolled human subjects who had individually given an informed consent.
Research involving human participants
All procedures performed in the studies (included in this review) involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.
- 2.Nossent J, Cikes N, Kiss E, Marchesoni A, Nassonova V, Mosca M, Olesinska M, Pokorny G, Rozman B, Schneider M, Vlachoyiannopoulos PG, Swaak A (2007) Current causes of death in systemic lupus erythematosus in Europe, 2000–2004: relation to disease activity and damage accrual. Lupus 16(5):309–317. https://doi.org/10.1177/0961203307077987 CrossRefPubMedGoogle Scholar
- 4.Tsokos GCGC., Smolen JS (2007) Systematic lupus erythematosus—a companion to rheumatology. 1st edn. Mosby Elsevier, USAGoogle Scholar
- 6.World Health Organisation (1997) WHOQOL: measuring quality of life. http://www.who.int/mental_health/media/68.pdf. Accessed 12 Dec 2016
- 7.World Health Organisation (2001) International classification of functioning, disability and health (ICF). http://www.who.int/classifications/icf/en/. Accessed 9 Oct 2017
- 8.Alarcon GS, McGwin G Jr, Uribe A, Friedman AW, Roseman JM, Fessler BJ, Bastian HM, Baethge BA, Vila LM, Reveille JD (2004) 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 51(3):465–474. https://doi.org/10.1002/art.20409 CrossRefPubMedGoogle Scholar
- 15.Abdul-Sattar AB, Abou El Magd S (2014) Association of perceived neighborhood characteristics, socioeconomic status and rural residency with health outcomes in Egyptian patients with systemic lupus erythematosus: one center study. Int J Rheum Dis. https://doi.org/10.1111/1756-185X.12331 Google Scholar
- 16.García Carrasco M, Mendoza Pinto C, López Colombo A, Méndez Martínez S, Andari Sawaya R, Muñoz Guarneros M, Vázquez De Lara L, Lescas Hernández M, Montiel Jarquín A, Ramos Álvarez G, Schmulson M (2013) Irritable bowel syndrome-type symptoms in female patients with mild systemic lupus erythematosus: frequency, related factors and quality of life. Neurogastroenterol Motil 25(12):958–966. https://doi.org/10.1111/nmo.12230 CrossRefPubMedGoogle Scholar
- 18.Valencia-Flores M, Resendiz M, Castano VA, Santiago V, Campos RM, Sandino S, Valencia X, Alcocer J, Ramos GG, Bliwise DL (1999) Objective and subjective sleep disturbances in patients with systemic lupus erythematosus. Arthritis and rheumatism 42(10):2189–2193. https://doi.org/10.1002/1529-0131(199910)42:10<2189::AID-ANR21>3.0.CO;2-VCrossRefPubMedGoogle Scholar
- 28.Petri M, Orbai AM, Alarcon GS, Gordon C, Merrill JT, Fortin PR, Bruce IN, Isenberg D, Wallace DJ, Nived O, Sturfelt G, Ramsey-Goldman R, Bae SC, Hanly JG, Sanchez-Guerrero J, Clarke A, Aranow C, Manzi S, Urowitz M, Gladman D, Kalunian K, Costner M, Werth VP, Zoma A, Bernatsky S, Ruiz-Irastorza G, Khamashta MA, Jacobsen S, Buyon JP, Maddison P, Dooley MA, van Vollenhoven RF, Ginzler E, Stoll T, Peschken C, Jorizzo JL, Callen JP, Lim SS, Fessler BJ, Inanc M, Kamen DL, Rahman A, Steinsson K, Franks AG Jr, Sigler L, Hameed S, Fang H, Pham N, Brey R, Weisman MH, McGwin G Jr, Magder LS (2012) Derivation and validation of the systemic lupus international collaborating clinics classification criteria for systemic lupus erythematosus. Arthritis Rheum 64(8):2677–2686. https://doi.org/10.1002/art.34473 CrossRefPubMedPubMedCentralGoogle Scholar
- 29.United Nations (2016) World economic situation and prospects 2016. https://www.un.org/development/desa/dpad/wpcontent/uploads/sites/45/2016wesp_update.pdf. Accessed Jan 2016
- 31.Odhiambo J, Oyoo GO, Amayo E (2014) An Evaluation of quality of life of patients with systemic lupus erythematosus attending rheumatology clinic in Kenyatta National Hospital, Nairobi, Kenya. Arthritis Rheumatol 2(1):18–22Google Scholar
- 33.Rizk A, Gheita TA, Nassef S, Abdallah A (2012) The impact of obesity in systemic lupus erythematosus on disease parameters, quality of life, functional capacity and the risk of atherosclerosis. Int J Rheum Dis 15(3):261–267. https://doi.org/10.1111/j.1756-185X.2011.01698.x CrossRefPubMedGoogle Scholar
- 35.Solati K, Mousavi M, Kheiri S, Hasanpour-Dehkordi A (2017) The effectiveness of mindfulness-based cognitive therapy on psychological symptoms and quality of life in systemic lupus erythematosus patients: a randomized controlled trial. Oman Med J 32(5):378–385. https://doi.org/10.5001/omj.2017.73 CrossRefPubMedPubMedCentralGoogle Scholar
- 43.Elera-Fitzcarrald C, Alva M, Gamboa-Cardenas R, Mora-Trujillo CS, Zevallos F, Garcia-Poma A, Medina M, Rodriguez-Bellido Z, Perich-Campos RA, Pastor-Asurza CA, Segami MI, Ugarte-Gil MF (2018) Factors associated with health-related quality of life in Peruvian patients with systemic lupus erythematosus. Lupus. https://doi.org/10.1177/0961203317751062 PubMedGoogle Scholar
- 44.Etchegaray-Morales I, Méndez-Martínez S, Jiménez-Hernández C, Mendoza-Pinto C, Alonso-García NE, Montiel-Jarquín A, López-Colombo A, García-Villaseñor A, Cardiel MH, García-Carrasco M (2017) Factors associated with health-related quality of life in Mexican Lupus patients using the LupusQol. PLoS One 12(1):1–10. https://doi.org/10.1371/journal.pone.0170209 CrossRefGoogle Scholar
- 45.Mendoza-Pinto C, Méndez-Martínez S, Soto-Santillán P, Galindo Herrera J, Pérez-Contreras I, Macías-Díaz S, Taboada-Cole A, García-Carrasco M (2015) Socioeconomic status and organ damage in Mexican systemic lupus erythematosus women. Lupus 24(11):1227–1232. https://doi.org/10.1177/0961203315591621 CrossRefPubMedGoogle Scholar
- 47.Garcia-Carrasco M, Mendoza-Pinto C, Cardiel MH, Mendez-Martinez S, Garcia-Villasenor A, Jimenez-Hernandez C, Alonso-Garcia NE, Briones-Rojas R, Ramos-Alvarez G, Lopez-Colombo A (2012) Health related quality of life in Mexican women with systemic lupus erythematosus: a descriptive study using SF-36 and LupusQoL(C). Lupus 21(11):1219–1224. https://doi.org/10.1177/0961203312456749 CrossRefPubMedGoogle Scholar
- 49.Medeiros MM, Menezes AP, Silveira VA, Ferreira FN, Lima GR, Ciconelli RM (2008) Health-related quality of life in patients with systemic lupus erythematosus and its relationship with cyclophosphamide pulse therapy. Eur J Intern Med 19(2):122–128. https://doi.org/10.1016/j.ejim.2007.06.012 CrossRefPubMedGoogle Scholar
- 51.Ruperto N, Buratti S, Duarte-Salazar C, Pistorio A, Reiff A, Bernstein B, Maldonado-Velazquez MR, Beristain-Manterola R, Maeno N, Takei S, Falcini F, Lepore L, Spencer CH, Pratsidou-Gertsi P, Martini A, Ravelli A (2004) Health-related quality of life in juvenile-onset systemic lupus erythematosus and its relationship to disease activity and damage. Arthritis Rheum 51(3):458–464. https://doi.org/10.1002/art.20412 CrossRefPubMedGoogle Scholar
- 52.Ravelli A, Duarte-Salazar C, Buratti S, Reiff A, Bernstein B, Maldonado-Velazquez MR, Beristain-Manterola R, Maeno N, Takei S, Gerloni V, Spencer CH, Pratsidou-Gertsi P, Ruperto N, Pistorio A, Martini A (2003) Assessment of damage in juvenile-onset systemic lupus erythematosus: a multicenter cohort study. Arthritis Rheum 49(4):501–507. https://doi.org/10.1002/art.11205 CrossRefPubMedGoogle Scholar
- 53.Karlson EW, Daltroy LH, Lew RA, Wright EA, Partridge AJ, Fossel AH, Roberts WN, Stern SH, Straaton KV, Wacholtz MC, Kavanaugh AF, Grosflam JM, Liang MH (1997) The relationship of socioeconomic status, race, and modifiable risk factors to outcomes in patients with systemic lupus erythematosus. Arthritis Rheum 40(1):47–56CrossRefPubMedGoogle Scholar
- 54.Marais BJ, Lonnroth K, Lawn SD, Migliori GB, Mwaba P, Glaziou P, Bates M, Colagiuri R, Zijenah L, Swaminathan S, Memish ZA, Pletschette M, Hoelscher M, Abubakar I, Hasan R, Zafar A, Pantaleo G, Craig G, Kim P, Maeurer M, Schito M, Zumla A (2013) Tuberculosis comorbidity with communicable and non-communicable diseases: integrating health services and control efforts. Lancet Infect Dis 13(5):436–448. https://doi.org/10.1016/S1473-3099(13)70015-X CrossRefPubMedGoogle Scholar