This article first appeared in the Juxtaposition Global Health Magazine at the University of Toronto
What determines health and causes disease? From ancient times to the 21st century, the determinants of health have morphed and shifted along with our understanding of disease etiology – from Hippocratic principles and miasmatic forces, to germ theory and hereditary factors such as genetics and epigenetics. However, in modern medicine and public health, we have come full circle to incorporate ancient and modern paradigms.
Hippocrates posited that health is affected by unique internal and external factors which can work together to balance the body in health, and can work against each other, causing an imbalance, manifesting in disease [1]. With time, we have come to identify what he referred to as ‘individual internal factors’ to be hereditary factors and microorganisms, which play major parts in disease, prognosis, and death. Nevertheless, in the late 20th century and early 21st century, a greater emphasis has been placed on the interplay of external factors, such as the environment and culture, in affecting perceptions of health and causing disease.
Many diseases are determined by the interplay between internal and external factors, that, due to an imbalance, tip the body into a disease state. Autoimmune diseases are a great illustrative representation of this interplay. For example, Systemic Lupus Erythematosus (SLE, commonly known as lupus) is a disease characterized by systemic inflammation throughout the body due to antibodies mistaking the hosts’ tissue as “foreign” targets [2]. This systemic inflammation results in symptoms that commonly include a signature butterfly rash on across the cheeks and nose, joint pain and swelling, anemia, joint pain, and less commonly lead to kidney damage (in lupus nephritis), and reduced quality of life, causing debilitating complications, disability, and even leading to death [3].
Although lupus has been shown to have some hereditary genetic etiology (Human Leukocyte Antigen types, inherited immune system regulatory genes, are shown to greatly increase the risk of developing lupus), they are not enough in predicting disease onset [4]. This indicates that some external non-hereditary factors also play a role in triggering the disease.
However, the effects of environmental and social factors do not stop at disease onset. For example, in the United States (US), disparities in lupus mortality and outcomes have predominantly manifested in young women of non-white descent [2]. This is thought to be due to associated socioeconomic status (SES), specifically factors such as education, unemployment, household income, and poverty. In patients suffering from autoimmune diseases, race/ethnicity and SES factors have been shown to be associated with reduced access to quality and affordable healthcare, conditions of poverty, reduced understanding of disease and the medical system, and competing work and home demands that form barriers to effective disease management [5].
Psychosocial factors also play a crucial role in disease management. These factors include self-efficacy, social support, and compliance. In a cohort study of lupus patients, a significant difference in adherence to therapies was observed between black patients and white patients [6]. This difference in non-adherence may contribute to a difference in renal diseases caused by lupus complications between races [6,7]. Shortcomings in education, mistrust in medical institutions due to discrimination, personal beliefs of the cause and nature of the illness, poor social support, depression, and low self-confidence in ability to control disease are associated with poor adherence to therapies [8]. One trial showed that active patient-physician interaction during consultations and follow-ups was correlated with significantly improved mental and physical health [8]. Education and self-efficacy provide patients with higher confidence in the ability to manage disease, communicate and self-advocate effectively in patient-doctor interactions and increase overall medical understanding, to create an open and balanced patient-physician interaction [8].
The most difficult aspect of addressing non-adherence is the issue of identifying and diagnosing it, with non-adherence falling in the broad range of 3-76% [9]. Improving communication between physicians and patients at risk of non-compliance may lead to better patient understanding and increased trust in the patient-physician dynamic, reduced intentional non-adherence, and increased efficacy of treatment and disease control. Furthermore, strategies such as reducing the dosing frequency of medication make adherence easier for patients. Programs focusing on self-efficacy theory and education are crucial for improving management and control of disease.
Another important contributor to lupus disparities in low SES populations is attributed to policies. Health coverage and access to public health insurance play a significant role in lupus treatment in the US, with one survey reporting only 1 in 4 individuals treated for lupus is being covered by government-sponsored health programs (i.e. Medicare/Medicaid) [10]. Preserving aspects of policies such as the Affordable Care Act to ensure coverage for chronic diseases, such as lupus, is crucial, especially in the most vulnerable populations of non-elderly adults of low SES [11] Interventions and policies introduced to address shortcomings in other autoimmune diseases and chronic diseases may be applied to lupus. For example, introducing ethnic-directed interventions to target high-risk minority groups may prove effective in better educating these patients in a culturally relevant manner about the consequences of diseases, the importance of treatment adherence, and disease management. Furthermore, a recent survey found that although diseases such as lupus have wide recognition, the knowledge of the disease in the general population is not substantial [10]. Therefore, campaigns to educate communities and the public, especially in high-risk populations, can help to improve social structures, and provide better social support for those most affected by the disease. Additionally, better and more widespread knowledge of the disease will help to normalize lupus in the community, and provide patients with services and support directed towards improving self-efficacy.
Lupus in the US provides us with an example of a disease that shows great disparities within populations that follow social patterns, and affects groups disproportionately. Three targets for improving management of Non-Communicable Diseases (NCDs), like lupus and other autoimmune diseases, include: improving psychosocial factors (self-efficacy, social support, and non-adherence), supporting physicians and patients in fostering a medical culture that perpetuates better communication, and empowering advocacy groups that aim to protect policies that help those with pre-existing conditions [12].
This paradigm shift in treating disease as biological manifestations of social maladies has become the cornerstone in public health philosophy. However, it is important to point out that these social effects create not only disparities in who becomes ill, but also how sick these patients get, and the ultimate burdens these diseases bring to the patients, their loved ones, and the community as a whole. This creates more avenues that perpetuate inequality, and thus that must be addressed to control the economic and health burdens of NCDs, such as lupus. Furthermore, the rise of NCDs such as lupus must be seen as a global issue, and as we learn more about autoimmune disease pathology and epidemiology, improving outcomes for those most vulnerable must become a global effort. Nevertheless, it is important to consider the fact that different societies face different obstacles and therefore, different societies must assess their individual circumstances, and come up with modern solutions for local context.
References
[1] David Wootton (2006). Bad Medicine: Doctors doing harm since Hippocrates.New York: Oxford University Press.
[2] Lupus Foundation of America. What is Lupus?. [Internet]. Lupus.org. 2020 [cited February 18 2020]. Available from: https://www.lupus.org/resources/what-is-lupus
[3] Lupus Foundation of America. Common symptoms of Lupus. [Internet]. Lupus.org. 2020 [cited February 10 2020]. Available from: https://www.lupus.org/resources/common-symptoms-of-lupus
[4] Cruz-Tapias, P., Castiblanco, J., & Anaya, J. M. (2013). HLA association with autoimmune diseases. In Autoimmunity: From Bench to Bedside [Internet]. Bogota: El Rosario University Press.
[5]Jacobi, C. E., Mol, G. D., Boshuizen, H. C., Rupp, I., Dinant, H. J., & Van den Bos, G. A. (2003). Impact of socioeconomic status on the course of rheumatoid arthritis and on related use of health care services. Arthritis Care & Research: Official Journal of the American College of Rheumatology, 49(4), 567-573. https://doi.org/10.1002/art.11200
[6] Sule, S., & Petri, M. (2006). Socioeconomic status in systemic lupus erythematosus. Lupus, 15(11): pp. 720-3. doi: 10.1177/0961203306070008
[7] Lau, C.S., Yin, G., & Mok, M.Y. (2006). Ethnic and geographical differences in systemic lupus erythematosus: an overview. Lupus, 15(11): pp. 715-9. doi: 10.1177/0961203306072311
[8] Demas, K.L., & Costenbader, K.H. (2009). Disparities in lupus care and outcomes. Current Opinion in Rheumatology,21(2): pp. 102-9. doi: 10.1097/BOR.0b013e328323daad
[9] Costedoat-Chalumeau, N., Tamirou, F., & Piette, J.C. (2018). Treatment adherence in systemic lupus erythematosus and rheumatoid arthritis: Time to focus on this important issue: Treatment adherence in SLE and RA. Rheumatology (Oxford), 57(9): pp. 1507–1509. doi: 10.1093/rheumatology/kex337
[10] GfK Roper Public Affairs & Corporate Communications. Executive Summary Lupus Awareness Survey [Internet]. Washington, D.C.: Executive Summary Lupus Awareness Survey; 2012. Retrieved from: https://b.3cdn.net/lupus/2489f6ca2bcbde1818_ggm6i6gzi.pdf
[11] Yelin, E., Yazdany, J., & Trupin, L. (2018). Relationship Between Poverty and Mortality in Systemic Lupus Erythematosus. Arthritis Care & Research, 70(7): pp. 1101-6. doi: 10.1002/acr.23428
[12] Lupus Foundation of America. Update on Lupus Funding and Health Care Reform [Internet]. Lupus.org. 2018 [cited 12 October 2018]. Available from: https://www.lupus.org/general-news/entry/breaking-news-update-on-lupus-funding-and-health-care-reform
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