AB1442-HPR A misunderstood burden – living with sle in south africa
Authors: A Phuti, M. Schneider, M. Tikly, B. Hodkinson
Journal: Annals of the Rheumatic Diseases (2018)

<h3>Background</h3> Systemic lupus erythematosus (SLE) has a profound impact on health related quality of life (HRQOL). There has been no qualitative research to the explore patients' perspectives and unmet needs in SLE in sub-Saharan Africa. <h3>Objectives</h3> To examine the experiences and perceptions of SLE women. <h3>Methods</h3> In-depth interviews of 25 South African women with SLE were conducted to explore a range of HRQOL experiences including pain, fatigue, emotional health, sexual well-being, fertility and aesthetic concerns. <h3>Results</h3> Most patients (72%) were black Africans, the remaining were of mixed race ancestry, and only a quarter were employed. Living with pain was the commonest complaint, negatively impacting on activities of daily living, coping with family expectations, social life, sleep and intimacy with partners. Patients struggled to explain the pain to their families, employers, community and health care providers. Seventeen participants expressed the challenge of living with fatigue, described as "emotionally draining" and as "always tired, a person who doesn't have the energy." One patient believed that witches in church had supernatural powers that took all her energy away. Many felt their fatigue was misconstrued, and that they were labelled as 'simply lazy' by health professionals and family members. This pernicious fatigue had negative consequences on many facets of daily life, including caring for dependents, holding down steady job and sexual wellbeing. All patients experienced low emotional states ranging from anger, bitterness, anxiety, confusion, and sadness, which frequently resulted in suicidal ideation. Many patients experienced difficulties with conception, complicated pregnancies and miscarriage. The pessimism of doctors regarding the prognosis of pregnancy in SLE left many patients feeling confused and depressed. Changes in physical appearance such alopecia, rashes and weight fluctuations were also a major concern affecting self-image and libido, often leading to strained relationships and breakups. Coping mechanisms included intense spiritual beliefs giving them the courage to 'push through the difficult times'. Use of alternative therapies was common, which they believed helped contain the symptoms of SLE. These included drinking 'blessed' water, traditional herbal remedies, and soothing leaf or pressure applications to painful joints. A poor understanding of SLE by the patients themselves, family and the community, coupled with the unpredictable course of the disease, exacerbated frustration and uncertainty. For many patients, limited income, lack of basic services like public transport, dependency of family members, and comorbid diseases, such as HIV and tuberculosis, exacerbated the negative daily experiences of living with SLE. Patients felt that patient-led support groups, better education by health professionals, and public awareness of SLE would help them cope with the disease. <h3>Conclusions</h3> Indigent South African women with SLE in SA have complex, chronic and challenging life experiences. A poor understanding and acceptance of SLE by patients themselves, compounded by a background of poverty and a perception of being misunderstood by family members, health professionals and the community at large had negative impact on multiple dimensions of patient's lives. <h3>Acknowledgements</h3> All women and funding from Thuthuka grant and the Harry Crossley Foundation. <h3>Disclosure of Interest</h3> None declared