Fusco Kellie N, Gonzalez Isoba Luis C, Alef Rachel, Roger Angelica, Mayrovitz Harvey N
Osteopathic Medicine, Nova Southeastern University Dr. Kiran C. Patel College of Osteopathic Medicine, Davie, USA.
Family Medicine, Internal Medicine, Surgery, Pathology, Gynecology, Infectious Disease, Neurology, Orthopedics, and Gastroenterology, Nova Southeastern University Dr. Kiran C. Patel College of Osteopathic Medicine, Fort Lauderdale, USA.
Cureus. 2024 Dec 3;16(12):e75043. doi: 10.7759/cureus.75043. eCollection 2024 Dec.
Systemic lupus erythematosus (SLE) is a chronic autoimmune disease predominantly affecting women, particularly in African American populations. While its physical health impacts are well-documented, patients also face significant psychosocial burdens, including barriers to healthcare access, financial constraints, mental health challenges, and inadequate social support.
This cross-sectional study surveyed 294 SLE patients recruited from Facebook and Reddit social media forums to examine how demographic factors such as age, race/ethnicity, and geographic location influence these burdens. Results: Findings revealed that although most participants had health insurance and access to rheumatology care, the majority were not able to be evaluated by their specialist until at least a week later after inquiring about an appointment, especially urban respondents. This does not appear to be a major limitation as such appointments may take in some cases months. Limited access to a pharmacy was reported more by respondents who are either rural residents, live in the Midwest region of the United States, or are older than 61 years old. Additionally, SLE is shown to impact patients financially. About 20.1% of the respondents indicated that they are unable to afford their co-pay for all of their monthly medications in general. Indian Asians were noted to pay more out-of-pocket medical expenses compared to other race/ethnicity groups. Respondents older than 61 years old were more likely to spend more than $200 a month on prescriptions for all their medical conditions than their younger counterparts. Regarding mental health, higher rates of anxiety and depression were reported across all groups, especially in a higher percentage of younger respondents under the age of 45. Despite this, there were no major differences in mental health changes between race/ethnicity and geographic location groups. Additionally, most respondents reported having some kind of social support for their SLE diagnosis, notably in the older than 61 age group. Suburban and urban respondents also reported receiving more support than rural ones. Conclusion: Overall, this study highlights the complex interplay of socioeconomic factors and demographic identities in shaping the experiences of SLE patients, emphasizing the need for healthcare providers to consider these nonphysical aspects when developing treatment plans. Tailored interventions are essential to address the unique needs of diverse patient populations and enhance the management of SLE.
系统性红斑狼疮（SLE）是一种主要影响女性的慢性自身免疫性疾病，在非裔美国人中尤为常见。虽然其对身体健康的影响已有充分记录，但患者也面临着重大的心理社会负担，包括获得医疗保健的障碍、经济限制、心理健康挑战以及社会支持不足。
这项横断面研究调查了从Facebook和Reddit社交媒体论坛招募的294名SLE患者，以研究年龄、种族/民族和地理位置等人口统计学因素如何影响这些负担。结果：研究结果显示，尽管大多数参与者拥有医疗保险并能获得风湿病护理，但大多数人在询问预约后至少一周后才能由专科医生进行评估，尤其是城市受访者。这似乎并不是一个主要限制，因为在某些情况下，此类预约可能需要数月时间。农村居民、居住在美国中西部地区或年龄超过61岁的受访者报告称，获得药房服务的机会有限。此外，SLE对患者的经济状况有影响。约20.1%的受访者表示，他们通常无法承担每月所有药物的自付费用。与其他种族/民族群体相比，印度裔亚洲人自付的医疗费用更高。年龄超过61岁的受访者每月在所有医疗状况的处方上花费超过200美元的可能性比年轻受访者更高。关于心理健康，所有群体的焦虑和抑郁发生率都较高，尤其是在45岁以下的年轻受访者中比例更高。尽管如此，种族/民族和地理位置群体之间的心理健康变化没有重大差异。此外，大多数受访者表示，他们的SLE诊断得到了某种社会支持，尤其是在61岁以上的年龄组。郊区和城市受访者也报告称比农村受访者获得了更多支持。结论：总体而言，本研究强调了社会经济因素和人口特征在塑造SLE患者经历中的复杂相互作用，强调医疗保健提供者在制定治疗计划时需要考虑这些非身体方面。量身定制的干预措施对于满足不同患者群体的独特需求和加强SLE的管理至关重要。
