What is Primordial Prevention in Rheumatic Diseases: The Role of Health Literacy
Anindita Santosa
Rheumatologist | Allergy & Immunology Specialist | Building AI to Close Gaps in Global Specialty Care | Advocate for Women’s Health & Autoimmune Equity
Rheumatic diseases affect more than 350 million people worldwide. Many of these cases could be prevented if people got help early enough. Traditional prevention methods usually deal with managing the disease. However, primordial prevention goes a step further by tackling risk factors before they even show up.
Primordial prevention is the earliest way to prevent disease. It targets the social, economic, and environmental conditions that lead to disease development. This approach becomes vital for rheumatic diseases because early intervention can substantially affect a patient's long-term health and quality of life.
Healthcare providers and patients need to understand how health literacy plays into primordial prevention. Health literacy - knowing how to get, process, and understand simple health information - creates the foundation for prevention and management strategies that work. This piece looks at how health literacy shapes primordial prevention of rheumatic diseases and suggests practical ways to improve prevention through better health understanding.
Understanding Health Literacy in Rheumatic Diseases
Health literacy plays a crucial role in managing and preventing rheumatic diseases through a complex relationship between personal skills and healthcare requirements. The International Union for Health Promotion and Education describes health literacy as a mix of personal abilities and available resources that help you access, understand, evaluate, and use health information effectively [1].
Defining Health Literacy
Health literacy goes beyond simple reading and writing skills to include knowing how to make informed health decisions. Research shows that up to 36% of the general population has limited health literacy [2]. This issue affects vulnerable groups more severely, particularly older adults, ethnic minorities, people with disabilities, and those facing economic challenges [1].
Components of Health Literacy
Key elements of health literacy in rheumatic care include:
Impact on Disease Outcomes
Health literacy levels strongly relate to rheumatic disease outcomes. Patients with limited health literacy experience worse functional status in rheumatoid arthritis [1]. Research shows that people with "good health literacy" have much lower disease activity over time compared to those with "several health literacy limitations" [3].
Treatment decisions and medication management depend heavily on health literacy. Patients with "good health literacy" receive biologic DMARDs more often (50%), while those with "some health literacy limitations" typically get conventional synthetic DMARDs (72.7%) [3]. Patients with "several health literacy limitations" receive steroid prescriptions more frequently (52.4%) [3].
Limited health literacy shows up in many ways that affect patient-provider interactions and treatment adherence. Patients who struggle with health literacy feel more confused when completing global assessments of rheumatoid arthritis [2]. This confusion can affect treatment decisions and outcome measurements. These challenges highlight why health literacy matters as a key part of managing and preventing rheumatic diseases.
The Role of Primordial Prevention
Disease prevention strategy has seen a fundamental change with primordial prevention. This approach targets social determinants of health before disease risk factors appear. Rheumatic diseases respond well to early intervention, which can greatly affect how the disease progresses.
Definition and Scope
Primordial prevention covers changes to social determinants of health. These changes improve overall health outcomes and reduce disease risks [4]. Traditional prevention methods focus on immediate health factors. However, this approach goes further by targeting society's basic factors that lead to disease development. These factors include income, education, housing conditions, and healthcare access [4].
The scope of primordial prevention in rheumatic diseases includes:
Relationship to Health Literacy
Health literacy is a vital component of primordial prevention and sets the foundation for healthy behaviours [4]. Research shows that about two-thirds of adults don't deal very well with the healthcare system's complexity. One-third of adults find it hard to understand simple health information because of literacy barriers [5].
Health literacy and primordial prevention intersect most clearly in preventive services. Studies show that health literacy greatly affects how populations use preventive services. This usage pattern affects health outcomes and healthcare costs [5].
Evidence Base for Effectiveness
Strong evidence supports primordial prevention strategies. Developed countries have seen reduced rates of certain rheumatic conditions. Some conditions have been completely eliminated through better socioeconomic conditions and population-based prevention strategies [6]. Developing countries house 80% of people with rheumatic heart disease, which shows how social and economic conditions affect health [6].
Population groups that saw improvements in their socioeconomic and environmental conditions experienced dramatic drops in acute rheumatic fever (ARF) rates [7]. Better hygiene infrastructure and less crowded housing reduce Strep A infections significantly. These infections often lead to rheumatic conditions [7].
Community-based programmes that combine various prevention strategies show how effective primordial prevention can be. These programmes reduce disease burden through complete approaches. They combine awareness campaigns, screening programmes, and better healthcare access [8].
Health Literacy Domains in Rheumatic Care
Health literacy in rheumatic care covers many areas that affect patient outcomes and treatment success. Research suggests that patients who trust their doctors more and take active part in medical consultations have lower disease activity and better overall health [9].
Understanding Medical Information
Knowing how to understand medical information is vital for managing rheumatic care well. Studies show that patients with limited health literacy know less about their medical conditions and how to manage them [1]. Many patients find it hard to evaluate health information properly. Research shows the lowest mean scores (2.71 ± 0.50) in this area among rheumatic patients [1].
The main parts of understanding medical information include:
Navigating Healthcare Systems
Rheumatic patients often struggle with healthcare system navigation. Research shows this is one of the lowest-scoring areas (3.77 ± 0.62) in health literacy tests [1]. Today's complex healthcare systems need patients to handle many parts of their care. This includes booking appointments, dealing with referrals, and managing insurance coverage.
Research proves that patients who actively navigate their healthcare get better results. Every one-point increase in patient active communication leads to a 7% drop in damage index scores [9]. This shows how better system navigation skills help manage the disease more effectively.
Communication with Healthcare Providers
Good communication with healthcare providers plays a vital role in managing rheumatic care. Studies reveal that better scores in "healthcare provider support" (3.14 ± 0.45) and "active engagement with healthcare providers" (3.98 ± 0.62) lead to improved health outcomes [1]. The way doctors and patients communicate affects everything from taking medications correctly to treatment satisfaction and overall health [9].
Doctor-patient relationships can improve patient outcomes through sharing information and teaching about the disease, which helps patients take part in their care actively [9]. Higher levels of trust in physicians link to:
These findings show why we need detailed health literacy programmes that work on all three areas at once, as they connect and support each other to improve patient outcomes.
Barriers to Health Literacy
Health literacy in rheumatic care faces several roadblocks that create challenges for healthcare providers and patients alike. Healthcare providers need to understand these obstacles to develop prevention strategies and help patients get better outcomes.
Socioeconomic Factors
Poor economic conditions play a vital role in how rheumatic diseases affect patients. Research shows that poverty leads to more health complications and lower survival rates [10]. People with lower income face several challenges:
Studies show that people who are hired have better health literacy rates - only 10% struggle compared to 22.4% of unemployed individuals [11]. People without internet access also tend to have lower health literacy rates (28.7% versus 16.9%) [11].
Educational Barriers
Health literacy problems show up in many ways. Research reveals that about 29-36% of people have trouble understanding basic health information [1]. These limitations create problems when:
Healthcare providers often use printed materials to communicate with patients. However, research shows that people who struggle with reading have trouble understanding written health information like medication instructions, discharge guidelines, and consent forms [12].
The digital world brings extra challenges. About 26.1% of people lack basic digital skills. This number goes up for older adults aged 65 and above (33.8% compared to 19.2% in younger people) [11].
Cultural and Language Challenges
Language creates big barriers in healthcare. One out of five Americans speaks a language other than English [13]. People who struggle with English face serious healthcare problems that lead to:
Cultural issues go beyond just language problems. Studies show a lack of diversity in medical education materials. 84% of images show light skin, while only 13.4% show dark skin, and 2.6% show skin colour that's hard to determine [10]. This makes it harder for healthcare providers to spot signs of rheumatic diseases in people of colour.
Clinical trials and research participation highlight these problems even more. Minority communities and people of colour remain underrepresented because of enrollment practises, limited resources, and a history of distrust in research [10].
Impact of Limited Health Literacy
Low health literacy substantially affects patient outcomes in rheumatic diseases. This creates a chain of challenges that affect healthcare delivery and disease management. Medical professionals need to understand these effects to develop effective prevention strategies.
Disease Activity and Progression
Research shows patients with low health literacy have higher disease activity scores consistently [14]. Studies reveal doctors prescribe prednisolone more often to patients who have several health literacy limitations. This suggests poor disease control [14]. Patients with low health literacy face multiple challenges:
Patients with "good health literacy" show lower disease activity and receive biologic DMARDs more often [14]. This clearly shows the connexion between health literacy and disease progression.
Treatment Adherence
Low health literacy creates major challenges for treatment adherence. Research shows patients most often miss medication doses [15]. The effects on medication management are complex:
Patients with low health literacy understand less about their medication purposes and side effects [15]. This lack of knowledge affects their ability to:
Healthcare Utilisation
Low health literacy shapes how patients use healthcare services and their outcomes. Studies show these patients use healthcare services poorly [1]. This shows up in several ways:
These patients struggle to communicate with healthcare providers and understand explanations about their condition or treatments [16]. Research reveals they have poor interactions with healthcare providers and less effective self-care practises [1].
Studies also show patients with low health literacy receive fewer initial biologic disease-modifying antirheumatic drug (bDMARD) prescriptions. This happens more often with older patients or those who have less education [1]. This gap in access to advanced treatments shows how health literacy affects healthcare use and treatment results.
Measuring Health Literacy
Health literacy measurement is the life-blood of healthcare delivery and intervention planning for rheumatic diseases. Healthcare providers need sophisticated tools and methods to capture its many dimensions because health literacy assessment can be complex.
Assessment Tools
Healthcare providers use several proven tools to measure different aspects of health literacy in clinical and research settings. The Rapid Estimate of Adult Literacy in Medicine (REALM) checks a person's ability to read and say medical terms. The Test of Functional Health Literacy in Adults (TOFHLA) looks at reading comprehension and math skills [17]. Healthcare providers can quickly screen patients with the Newest Vital Sign (NVS) [17].
The Health Literacy Questionnaire (HLQ) takes a complete approach with its nine-domain structure. Healthcare providers get separate scores for each domain and can spot specific strengths and weaknesses that a single score might miss [18].
Screening Methods
Modern screening recognises that health literacy has many dimensions. Simply labelling patients as having "high" or "low" health literacy doesn't help create effective interventions [18]. The Optimising Health Literacy and Access (Ophelia) process gives a step-by-step approach to:
Current screening looks at several elements:
Interpretation of Results
Population surveys show that inadequate health literacy affects 7% to 21% of people, depending on the tool used [17]. These differences show why context matters when interpreting results.
Result interpretation depends on several factors:
1. Individual Competencies:
2. Contextual Factors:
Research shows current measurement tools mainly focus on reading, comprehension, and math skills. Health literacy covers broader abilities that today's scales might not fully capture [17]. This gap has led experts to call for better assessment tools that reflect health literacy's complete nature in rheumatic care.
The Health Literacy Universal Precautions Toolkit for Rheumatology (HLUPTK-R) advances assessment methods by including specialty-specific resources such as:
These tools help healthcare providers make better assessments while providing educational resources that match patients' needs. Results guide targeted interventions that arrange healthcare delivery with patients' health literacy levels.
Health Literacy Interventions
A systematic approach that addresses multiple aspects of patient care and education makes health literacy interventions work. The Optimising Health Literacy and Access (Ophelia) process gives us a detailed framework to develop and implement interventions that improve health outcomes in communities [1].
Educational Programmes
Rheumatic care's educational interventions now include evidence-based approaches that meet a variety of patient needs. Low literacy medication guides and decision aids help improve knowledge and reduce decisional conflict among vulnerable rheumatoid arthritis patients [20]. Successful educational programmes need these key elements:
Research shows that teach-back communication methods lead to a 20% increase in medication adherence among rheumatology patients [21].
Support Systems
Support systems play a vital part in health literacy interventions by combining healthcare provider training with community resources. Rheumatology practises now use an adapted version of the Health Literacy Universal Precautions Toolkit that focuses on three main interventions:
Danish rheumatology clinics report 90% completion rates in symptom reporting when healthcare providers receive training in promoting health literacy [22].
Technology-Based Solutions
Digital interventions have become powerful tools to enhance health literacy in rheumatic care. Self-administered digital patient education programmes show better results in improving self-efficacy compared to traditional care methods [23]. Technology-based solutions bring several benefits:
Digital tools show great promise in remote monitoring and self-management. More than 165,000 health apps exist in Apple's App Store to track symptoms and support disease management [22]. These digital platforms help with:
Digital solutions that include health literacy support, stakeholder involvement, and evidence-based content see higher success rates [23]. Patients value the ability to access information at home and break down complex information into manageable segments [23].
Healthcare providers trust information from validated digital platforms more than random internet sources [23]. Digital health literacy interventions have become accessible to more people. Research shows 90% of patients successfully use touch-screen symptom reporting systems in rheumatology clinics [22].
Patient needs and technological capabilities need careful attention for successful implementation. Studies highlight the need for flexible organisation of educational content because engagement patterns change substantially across different modules and topics [23]. Healthcare providers emphasise building personal relationships with patients before moving to technology-based interventions to ensure optimal outcomes and patient comfort [23].
Future Directions
The rise of primordial prevention in rheumatic diseases needs a complete approach that merges research, policy development, and changes in healthcare systems. The Primordial Prevention Working Group-SDH's recent findings show areas that need quick action and long-term planning.
Research Priorities
The National Heart, Lung, and Blood Institute's working group has identified several important research priorities that need immediate attention. A global analysis of disease incidence, prevalence, and social determinants of health characteristics stands out as the main focus to shape policy development and intervention strategies [24]. This complete approach helps healthcare systems to:
Implementation science has become a vital part of future research directions. Studies show we need to develop and implement scalable primordial prevention interventions in a variety of settings [24]. The working group emphasises that community engagement and partnerships with those having lived experience will help these activities succeed [4].
Policy Implications
Policy development must tackle the many aspects of health literacy and primordial prevention. The Optimising Health Literacy and Access (Ophelia) process has showed promising results. Key strategies have emerged that focus on creating user-friendly services if you have limited health literacy [1]. These strategies include:
Studies show that working with community partners and policymakers helps ensure strategies work, are acceptable, and last within affected populations [4]. Housing improvements and community-level environmental health improvements need measurement, especially regarding suitable ARF endpoints [4].
Healthcare System Changes
Healthcare systems must adapt to meet patients' varied health literacy needs. Studies show that changing individual patients' health literacy in rheumatology often isn't realistic, so health systems must adapt to what patients need [25]. System-wide changes include:
Structural Modifications:
Professional Development:
Health literacy communication training for professionals has worked well. Studies show better patient outcomes through improved provider-patient communication [25]. Visual patient information materials and peer support through patient associations have led to better health literacy outcomes.
Rheumatic care's future needs major system changes. Research points to several key modifications:
Service Integration:
Complete care models should have the following on top of Rheumatologists:
Resource Allocation: Studies highlight the need for:
Community Engagement: Research shows the importance of:
Many working groups want economic reviews of primary prevention strategies in endemic settings [26]. This includes creating standard frameworks that look at:
Implementation science strategies stress the importance of community involvement, especially to address social determinants of health and possible disparities in vulnerable communities [26]. These approaches ensure lasting and acceptable primary prevention strategies while promoting effective population education through innovative and sustainable community education methods [26].
Primordial prevention in rheumatic diseases needs a multi-sector approach. Local communities, government agencies, non-governmental organisations, and advocacy groups must work together at local, regional, and international levels [26]. This teamwork helps create scalable and effective solutions that better merge, promote, and deliver primary prevention in a variety of settings.
Conclusion
Health literacy plays a key role in the primordial prevention of rheumatic diseases and impacts patient outcomes by a lot. Studies show that complete health literacy programmes, paired with systematic primordial prevention strategies, can reduce disease burden and lead to better long-term health outcomes.
Several barriers still hold back health literacy progress, especially when you have vulnerable populations affected by socioeconomic, educational, and cultural factors. Healthcare systems must evolve to tackle these challenges. They must develop better assessment tools, focused educational programmes, and tech-based solutions that work for patients of all types.
Looking ahead, we must blend research priorities, policy development, and healthcare system changes. These strategies must involve healthcare providers, policymakers, and communities to create lasting improvements in health literacy and disease prevention.
Better rheumatic disease outcomes just need ongoing attention to primordial prevention strategies while deepening their commitment to health literacy across every community. This all-encompassing approach holds the promise of improved health outcomes and lower disease burden for generations to come.
References