Living with systemic lupus erythematosus in the developing world

Phuti, Angel; Schneider, Marguerite; Tikly, Mohammed; Hodkinson, Bridget

doi:10.1007/s00296-018-4017-1

Cited by 23 publications

(14 citation statements)

References 56 publications

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“…As GRC measures inter-visit change, it was available on 1728 visits. HRQoL instruments were completed with a median ([IQR] (range)) of 7 ( [4,8] (1, 9)) time per patient and GRC with a median of 6 ( [3,7] (0, 8)) times. Table S2.…”

Section: Resultsmentioning

confidence: 99%

“…Due to a lack of effective therapy, patients suffer not only from inadequately controlled disease, but also from treatment-associated complications [2,3]. All these factors contribute to significant increases in morbidity and mortality, and poor health-related quality of life (HRQoL) [1,2], both of which are more pronounced in developing countries [4].…”

Section: Introductionmentioning

confidence: 99%

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Comparison of performance of specific (SLEQOL) and generic (SF36) health-related quality of life questionnaires and their associations with disease status of systemic lupus erythematosus: a longitudinal study

et al. 2020

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Background: The utility of generic health-related quality of life (HRQoL) questionnaires in patients with systemic lupus erythematosus (SLE) is uncertain. We compared the performance of generic (SF36) and specific (SLEQOL) HRQoL surveys by examining their associations with the Global Rating of Change (GRC) and SLE clinical indicators. Methods: The study included SLE patients who attended a single-center rheumatology clinic between 2013 and 2017. Patients completed both specific (SLEQOL) and generic (SF36) surveys and rated their GRC compared to the previous visit using a 7-point Likert scale on the same day of routine visits. Based on GRC scores, patients' change in HRQoL was categorized as "no change," "deterioration," or "improvement." Disease activity (SLEDAI-2K), flare, and lupus low disease activity state (LLDAS) were assessed at each visit, and organ damage (SDI) was determined annually. Pairwise correlations between SLEQOL and SF36 components were examined, and associations between GRC status and SLE disease indicators were compared using generalized estimating equations (GEE). Results: Three hundred thirty-seven patients with 2062 visits were included in the analysis. SLEQOL correlated significantly with SF36. Patients reported improvements in HRQoL in 58%, deterioration in 15%, and "no change" in 27% of all visits. Compared to the "no change" group, mean SF36 and SLEQOL scores were significantly lower in the deterioration group and higher in the improvement group. The magnitude of changes observed with SLEQOL and SF36 in the deterioration and improvement groups was similar. Patients in LLDAS had significantly higher mean scores in both SLEQOL and SF36. In contrast, patients with active disease, especially those with cutaneous, renal, central nervous system, and musculoskeletal activity, had significantly lower SLEQOL and SF36. Flare and organ damage were also associated with lower SLEQOL and SF36-PCS (physical component) but not with SF36-MCS (mental component). Conclusion: SLEQOL and SF36 similarly describe HRQoL in SLE. Both instruments demonstrated strong associations with GRC-based deterioration or improvement as well as SLE disease status. LLDAS was associated with improved HRQoL.

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Section: Resultsmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Comparison of performance of specific (SLEQOL) and generic (SF36) health-related quality of life questionnaires and their associations with disease status of systemic lupus erythematosus: a longitudinal study

et al. 2020

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“…56 These studies show the high prevalence and associated mental health in SLE-related to disease activity and burden, aesthetics associated with medication and the disease's stigma and highlights the need for early mental health intervention. 57 Work remains to ensure that a life course to rheumatology research is advocated and prospective long-term research following young people with childhood and adolescent onset disease into adulthood is both prioritized and submit your manuscript | www.dovepress.com…”

Section: Mental Health Outcomes In Adulthoodmentioning

confidence: 99%

<p>Young Minds: Mental Health and Transitional Care in Adolescent and Young Adult Rheumatology</p>

Palman¹,

McDonagh²

2020

OARRR

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“…The factors that contribute to this higher mortality are late diagnosis, delayed or poor intervention and infectious co-morbidities [16]. A recent narrative review of HRQoL in developing countries included 31 studies and highlighted that adverse SLE outcomes are exacerbated by poor socio-economic contexts which affect physical and mental well-being [17].…”

Section: Introductionmentioning

confidence: 99%

Living with systemic lupus erythematosus in South Africa: a bitter pill to swallow

Phuti

Schneider

Makan

et al. 2019

Health Qual Life Outcomes

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Background Systemic lupus erythematosus (SLE) often has a profound negative impact on health-related quality of life (HRQoL). In the absence of any qualitative studies in sub-Saharan Africa, we undertook a study to explore living experiences, perceptions and unmet needs of South African patients with SLE. Methods Twenty-five women with SLE consented to participate in the study. They underwent individual in-depth interviews exploring their physical concerns, emotional health, sexual well-being and fertility. NVivo software was used for analysis. Results Participants were either of black ancestry or mixed racial ancestry, mainly indigent with only a quarter gainfully employed. Living with pain was the most common complaint, negatively impacting on activities of daily living (ADL), family expectations, social life, sleep and intimacy. Most participants expressed challenges of living with fatigue, and many felt their fatigue was misconstrued as being ‘simply lazy’. This pernicious fatigue had negative consequences on many facets of ADL, including caring for dependants, job sustainability and sexual well-being. All participants experienced low emotional states, often associated with suicidal ideations. Many experienced difficulties with fertility and childbearing and these were exacerbated in many instances by the pessimism of health care providers, resulting in confusion and depression. Physical disfigurements resulting from lupus-associated alopecia and rashes and corticosteroid-induced weight fluctuations were a major concern. These changes often affected self-image and libido, leading to strained personal relationships. Coping mechanisms that participants adopted included intense spiritual beliefs, ‘pushing through the difficult times’ and use of alternative therapies to relief symptoms was common. A poor understanding of SLE on the part of participant’s family and the community, coupled with the unpredictable course of the disease, exacerbated frustration and social exclusion. For most, limited income, lack of basic services, family dependencies, and comorbid diseases, such as human immune deficiency virus (HIV), exacerbated the daily negative SLE experiences. Conclusion In this study of mainly indigent South African women, SLE is associated with complex, chronic and challenging life experiences. The chronic relapsing and unpredictable nature of the disease, poor understanding and acceptance of SLE, compounded by a background of poverty, inadequate social support structures, negatively impact on a range of personal, social and vocational daily life experiences. Improved access to psychosocial services and SLE education might result in better outcomes. Trial registration (Ethics Project identification code: 275/2016 and M160633 registered 10 & 29 August 2016).

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Living with systemic lupus erythematosus in the developing world

Cited by 23 publications

References 56 publications

Comparison of performance of specific (SLEQOL) and generic (SF36) health-related quality of life questionnaires and their associations with disease status of systemic lupus erythematosus: a longitudinal study

Comparison of performance of specific (SLEQOL) and generic (SF36) health-related quality of life questionnaires and their associations with disease status of systemic lupus erythematosus: a longitudinal study

<p>Young Minds: Mental Health and Transitional Care in Adolescent and Young Adult Rheumatology</p>

Living with systemic lupus erythematosus in South Africa: a bitter pill to swallow

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