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Objective: Systemic Lupus Erythematosus (SLE) is a multi‐system disease that predominately affects women. Considering the lack of data on health related quality of life (HRQoL) especially in sub‐ Saharan Africa, we undertook a literature review on HRQoL of SLE patients in developing countries to collate the existing evidence and identify information gaps. A mixed methods qualitative and quantitative study of lived experiences of South African women with SLE was performed. Methods: A literature search was conducted on medical databases using MeSH terms pertaining to HRQoL amongst SLE patients in the developing or low income countries to identify articles published between January 1975 and February 2018. The main study included 25 consenting SLE patients attending two tertiary hospitals in Johannesburg and Cape Town. Individual in‐depth interviews, using a topic guide, were conducted and analysed using NVivo software. In addition, participants completed the Short Form‐36 (SF‐36), Functional Assessment Instrument (FAI) and functional assessment of chronic illness therapy (FACIT) for fatigue questionnaires. The questionnaires were analysed per each tool's scoring method and SPSS software was used to calculate mean, standard deviations and correlations. Results The review of 31 articles, from 11 countries indicated that SLE women have a poor general HRQoL. In addition, we found relationships between disease factors including disease activity, organ damage, functioning, and mental health. Poor socioeconomic status worsened SLE outcomes by limiting patients' access to health care and psychosocial services. In the main study, the majority (72.0%) were black Africans, unemployed (76.0%), with low formal educational level and singlehood status (72.0%). The mean (SD) mental and physical composite SF‐36 scores were poor (50.9 (22.1) and 49.1 (20.5) respectively), and 68.0% of women had FACIT scores of severe fatigue. The mean (SD) FAI was 1.33 (0.8), showing that activities of daily living (ADL) were performed with difficulty. Major themes expressed were fatigue, pain, impaired functioning, depression, pregnancy, aesthetic concerns and sexuality issues. Disease chronicity, fatigue and pain were described by many participants as ‘taking over life' and impacting on performing ADL and career opportunities contributing to indigence. Negative pregnancy outcomes were frequently exacerbated by poor sexual relationships and miscommunication between patient and health care workers. Lack of understanding of SLE by patients, community and family as well as suicidal ideations and depressive symptoms were expressed. Although the quantitative tools measured these aspects, they were unable to explore complexities such as limitations in job acquisition, suicidal ideations, disease understanding and support systems. Conclusion This study underscores the complex, chronic and challenging life experiences, often exacerbated by poverty, of SA women with SLE. Quantitative tools may be inadequate in capturing important aspects of HRQoL that emerged from the qualitive interviews. Awareness of these limitations, together with psycho‐social support and education, might improve HRQoL. This thesis recommends multi‐centred, interventional longitudinal studies that incorporate mixed methods and focus on strategies to improve the negative outcomes in SLE.

Includes bibliographical references / Background: Systemic lupus erythematosus (SLE) is a multisystem autoimmune disease commonly affecting females of child-bearing age, hence hormonal changes in pregnancy are thought to play a role in disease activity - often necessitating changes in immunosuppression therapy. SLE is common in Cape Town, however, the effect of pregnancy on SLE and vice versa has not been well characterised. The aim of this study is to report on the pregnancy outcomes of patients with SLE presenting to the maternity department of Groote Schuur Hospital, Cape Town. Methods: This study was designed as a retrospective review of records of pregnant women known with SLE and followed up at the maternity section of Groote Schuur Hospital. The duration of the survey was from 1 January 2003 to 31 December 2013. Records were identified using the attendance registers in the relevant departments. Results: There were 61 pregnancies reviewed in 49 patients; 80.3% of the pregnancies were in patients of mixed ancestry and the rest (19.7%) in black African patients. The mean age at presentation of the current pregnancy was 27215.0 years. Mean gestational age at presentation and delivery was 13.0 ± 6.0 weeks and 28.9 ± 9.8 weeks respectively and 47.5% of the pregnancies were in patients with lupus nephritis (LN). Thirty-nine (63.9%) pregnancies reached the third trimester and 11.5% of all pregnancies ended in the first trimester. There was a lower number of live births to mothers of African ancestry than to those of mixed ancestry (p=0.001). In 55.7% of the pregnancies, no flare was reported while a renal flare was reported in 23%. Pregnancies in patients with LN had higher frequencies of flares (58.6% vs 31.3%; p=D.O32), pre-eclampsia (34.5% vs 12.5%; p=D.O41), longer stay in hospital (12.0 ± 9.1 days vs 6.1 ± 5.1 days; p=0.DO-4) and low birth weight babies (1.94 ± 1.02 kg vs 2.55 ± 0.95 kg; p=D.O46) than in patients without LN. Only 36 (59%) of the neonates were discharged home alive and of these 2 (5.6%) were to mothers of black African ancestry (p=0.001). Conclusion: Increased lupus activity in pregnant SLE patients may account for the increased deaths of neonates born to SLE mothers. Patients of black African descent and those with LN tend to have a poorer outcome. A multi-disciplinary approach to the management of SLE patients (of child-bearing age or pregnant) needs to be further evaluated.

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published_or_final_version / Pathology / Doctoral / Doctor of Philosophy

published_or_final_version / abstract / Medicine / Doctoral / Doctor of Philosophy

No description available.

No description available.

Systemic Lupus Erythematosus (SLE) is an autoimmune disease which is characterized by high level of autoantibody detected in the body. This disease is female predominant with a male to female ratio 1: 9. SLE could cause damage to different organ systems and central nervous system is one of them. Patients diagnosed with SLE could suffer from psychiatric problems like cognitive dysfunction, depression and anxiety. Neurogenesis refers to the process by which new neurons are generated. Although it has been widely reported that neurogenesis could be enhanced under pathological conditions such as stroke, Huntington’s disease and epilepsy, study focusing on the relationship between neurogenesis and SLE remains limited. In the present study, by using NZB/W F1 mice as the animal model of SLE, we could demonstrate that there was dramatic increase of neuronal precursor cells at the corpus callosum after the onset of SLE symptoms. Meanwhile, as IBA-1 positive cells and GFAP positive cells also increased significantly there, this suggested inflammation has taken place. I hypothesized there were upregulation of immunological factors after the onset of SLE symptoms and those factors were responsible for the neurogenesis. In my in vitro study, cytokine- interferon gamma (IFN gamma) has been shown to promote neuronal progenitor cells (NPCs) to differentiate into neuronal linage but it did not obviously affect the cell proliferation and migration. For the other cytokine and chemokines, including interleukin-10 (IL-10), interleukin-8 (IL-8), macrophage-derived chemokine (MDC), stromal cell-derived factor 1 alpha (SDF-1alpha) and thymus and activation regulated chemokine (TARC), all of them had no effect on NPC proliferation and differentiation. As far as we know, this is the first study to report SLE could enhance neurogenesis. Concerning the role of inflammation and IFN gamma on the neurogenesis in our case, it should be worth for further investigation, which will benefit future development of novel treatment targeting psychiatric symptoms in SLE. / published_or_final_version / Anatomy / Master / Master of Philosophy