Ikram Naira, Lewandowski Laura B, Watt Melissa H, Scott Christiaan
Harvard Medical School, Boston, MA, 02115.
National Institute of Arthritis, Musculoskeletal, and Skin Diseases, NIH, DHHS, 9000 Rockville Pike, Building 10, 12N248 Room 28, Bethesda, MD 20892-1102, USA.
Res Sq. 2024 Feb 28:rs.3.rs-3919073. doi: 10.21203/rs.3.rs-3919073/v1.
Systemic lupus erythematosus (SLE) is a life-threatening, chronic, autoimmune disease requiring long term subspecialty care due to its complex and chronic nature. Childhood-onset SLE (cSLE) is more severe than adult-onset, and the cSLE population in South Africa has been reported to have an even higher risk than patients elsewhere. Therefore, it is critical to promptly diagnose, treat, and manage cSLE. In this paper, we aim to describe and evaluate barriers and enablers of appropriate long-term care of cSLE South Africa from the perspective of caregivers (parents or family members).
Caregivers (n=22) were recruited through pediatric and adult rheumatology clinics. Individuals were eligible if they cared for youth (≤19 years) who were diagnosed with cSLE and satisfied at least four of the eleven ACR SLE classification criteria.Individual in-depth, semi-structured interviews were conducted between January 2014 and December 2014, and explored barriers to and facilitators of ongoing chronic care for cSLE. Data were analyzed using applied thematic analysis.
Four barriers to chronic care engagement and retention were identified: knowledge gap, financial burdens, social stigma of SLE, and complexity of the South African medical system. Additionally, we found three facilitators: patient and caregiver education, robust support system for the caregiver, and financial support for the caregiver and patient.
These findings highlight multiple, intersecting barriers to routine longitudinal care for cSLE in South Africa and suggest there might be a group of diagnosed children who don't receive follow-up care and are subject to attrition. cSLE requires ongoing treatment and care; thus, the different barriers may interact and compound over time with each follow-up visit. South African cSLE patients are at high risk for poor outcomes. South African care teams should work to overcome these barriers and place attention on the facilitators to improve care retention for these patients and create a model for other less resourced settings.
系统性红斑狼疮（SLE）是一种危及生命的慢性自身免疫性疾病，因其复杂和慢性的性质需要长期的专科护理。儿童期发病的SLE（cSLE）比成人期发病的更严重，据报道，南非的cSLE患者群体比其他地方的患者风险更高。因此，及时诊断、治疗和管理cSLE至关重要。在本文中，我们旨在从照顾者（父母或家庭成员）的角度描述和评估南非cSLE患者获得适当长期护理的障碍和促进因素。
通过儿科和成人风湿病诊所招募照顾者（n = 22）。如果他们照顾的青少年（≤19岁）被诊断为cSLE且满足11项美国风湿病学会（ACR）SLE分类标准中的至少4项，则符合入选条件。在2014年1月至2014年12月期间进行了个体深入的半结构化访谈，探讨了cSLE持续慢性护理的障碍和促进因素。使用应用主题分析法对数据进行分析。
确定了慢性护理参与和持续的四个障碍：知识差距、经济负担、SLE的社会耻辱感以及南非医疗系统的复杂性。此外，我们发现了三个促进因素：患者和照顾者教育、照顾者强大的支持系统以及对照顾者和患者的经济支持。
这些发现突出了南非cSLE患者常规长期护理的多个相互交织的障碍，并表明可能有一群已确诊的儿童未接受后续护理并面临失访。cSLE需要持续的治疗和护理；因此，随着每次后续就诊，不同的障碍可能会随着时间的推移相互作用并加剧。南非cSLE患者预后不良的风险很高。南非的护理团队应努力克服这些障碍，并关注促进因素，以提高这些患者的护理持续性，并为其他资源较少的地区创建一个模式。
