Supporting Patients With AD and Their Caregivers: Insights from Argentina

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Atopic dermatitis (AD) exacts a significant toll on individuals globally, with varying prevalence rates across different regions. In Argentina, recent studies have shed light on the prevalence rates, but the broader impact on patients and caregivers remains largely unexplored. A recent survey aimed to better understand the nuances of AD burden in Argentina to provide patients with tailored care and improved outcomes, and may be helpful to dermatology clinicians in numerous countries.¹

Research Overview

Given the scarcity of prior surveys regarding the experience of AD in Argentina, investigators wanted to contribute to and validate previous findings, bridge knowledge gaps, and emphasize the challenges encountered by patients and their caregivers in Argentina through a 53-item anonymous survey involving adult AD patients and caregivers of pediatric AD patients.The survey was disseminated in Argentina through various channels including social media and patient advocacy organizations asking about demographic details, treatment satisfaction, provider type for AD care, experiences with patient-centered medical care, long-term symptom management, disease burden, health-related quality of life, and financial implications.

In this study, 339 caregivers and 334 adult patients with AD participated (n = 673). The average age of participants was 41 years, with a majority being female (90.8%). Pediatric patients were predominantly girls (54.3%), while adult patients were overwhelmingly women (91.3%). Most AD patients were seen by dermatologists (66.8%), followed by pediatricians (13.5%), allergists (7.7%), and general practitioners (7.2%). Disease severity varied, with 2.8% reporting clear disease, 33.3% mild, 52.4% moderate, and 11.5% severe. The EQ-5D questionnaire revealed an average score of 0.83, indicating willingness to trade 17% of remaining lifespan for perfect health. Financial concerns were prevalent, with higher severity correlating with increased worry. Disease-specific education was limited, with only 16% of caregivers and 13% of adult patients receiving training. Treatment satisfaction was higher among educated patients. Healthcare providers discussing treatment priorities correlated with increased satisfaction. Specialists were more likely than general practitioners to inquire about treatment priorities.

Health Care Disparities and Access Challenges

Health care disparities persist in Latin America, affecting access to specialized care, medications, and treatment outcomes. Survey results pointed out limited availability of approved medications and lack of coverage under public healthcare systems pose significant challenges. Moreover, access to phototherapy is often restricted due to both availability and cost concerns.

Disease Diagnosis and Management

Survey results demonstrated the belief that general practitioners typically lack the expertise to diagnose AD accurately, emphasizing the importance of access to specialists. Dermatologists play a pivotal role in diagnosis, but disparities in their distribution across regionsimpacttimely access to care. Despite specialist involvement, many patients struggle with finding effective treatment options, leading to dissatisfaction with current therapies.

Quality of Life and Financial Burden

Disease severity was self-assessed by participants. Overall, a small proportion of respondents (2.8%) indicated the absence of symptoms, while 33.3% reported mild disease, 52.4% reported moderate disease, and 11.5% reported severe disease. According to the EQ-5D questionnaire results, the average score for Argentina was 0.83 (95% CI, 0.82–0.85), suggesting that adult patients were willing to sacrifice 17% of their remaining lifespan to achieve perfect health. These findings mirrored those from Germany and Italy, the countries with the highest reported quality of life using this scale. Conversely, Australia, Canada, Denmark, France, the United Kingdom, and the United States indicated a lower quality of life, as they were willing to trade more lifespan for health. In these 8 countries, the average EQ-5D score was 0.72 (95% CI, 0.65–0.78), implying that AD patients would trade 28% of their remaining life expectancy for perfect health. Pain, discomfort, anxiety/depression were more burdensome compared to mobility, self-care, and usual activities in Argentina.

The survey revealed that financial concerns were prevalent among the majority of participants with AD. Among the 673 respondents, 559 (83%) addressed financial worries, with 14% expressing no concern, 10% stating extreme worry, and 75% indicating mild to moderate concern. Only 109 participants answered questions regarding the impact of AD care costs on their budgets. Among these, the most common responses included reducing spending on non-essentials (57%), tapping into savings (44%), or cutting expenses on food and other essentials (33%). Notably, financial worry intensified with the severity of the patients' disease.

Conclusion

Physician education emerges as a crucial factor in enhancing AD management. Disease-specific education, shared decision-making, and addressing mental health concerns and financial burdens are key priorities in optimizing care for AD patients and caregivers in Argentina. Study authors concluded and wrote, “Fortunately, plans are beginning to be implemented worldwide regarding teaching physicians in underserved areas the most up-to-date AD information. The Extension for Community Healthcare Outcomes (ECHO) project was developed in the United States to advance the education of clinicians worldwide on chronic, prevalent, complex diseases, including AD.”²

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References

1. Capozza K, Tu M, Schwartz A, Johnson JL, Ladner M. Patients' and caregivers' experiences navigating the burden of atopic dermatitis in Argentina. Medicina (Kaunas). 2024 Mar 31;60(4):584. doi: 10.3390/medicina60040584. PMID: 38674230; PMCID: PMC11052293.
2. Kenny C, Priyadarshini A. "Mind the Gap" - An overview of the role of the Extensions Community Healthcare Outcomes (ECHO) model in enhancing value in health care delivery. AIMS Public Health. 2023 Feb 22;10(1):94-104. doi: 10.3934/publichealth.2023008. PMID: 37063352; PMCID: PMC10091128.