Health Literacy Challenges Increase Costs, Client Concerns

Nearly nine out of 10 adults in the U.S. need help with health literacy. This makes it difficult to understand health coverage and navigate the complex health care system, leading to increased costs and adverse outcomes. This tends to be the case for home care beneficiaries, or potential home care beneficiaries, too.

“Health literacy is a state of knowledge and comfort that allows you to navigate the world and achieve wellbeing,” Danielle Brooks, director of quality health equity at AmeriHealth Caritas, told Home Health Care News. “It is critical to navigating, supporting and advocating for yourself when experiencing a medical or health-related need.”

AmeriHealth Caritas, based in Newtown Square, Pennsylvania, is a national managed care solution provider.

Limited health literacy significantly impacts Medicaid members, with 60% having basic or below-basic literacy, compared to only 24% of those with employer-sponsored coverage, according to the Center for Health Care Strategies. This demographic includes people aged 65 and older, individuals with lower incomes, those with lower education levels, people with limited English proficiency and minorities.

Furthermore, low health literacy rates lead to higher hospital use, higher mortality rates and higher health care costs. Improving rates could prevent one million hospital visits and save over $25 billion annually, according to the Centers for Disease Control and Prevention (CDC). Health literacy is essential in home care because it can affect a patient’s ability to understand and follow their treatment plan.

Oftentimes, patients also don’t realize that home health care or home care are options available to them.

“The complexity of the health care system and health concerns like COVID-19 require strong literacy skills to find, understand, evaluate and use health information to make informed decisions,” Sabrina Kurtz-Rossi, assistant professor at Boston’s Tufts University School of Medicine, told HHCN. “Compelling sources of health information, including inaccurate information on social media and the internet, intensify the need for improved health literacy for all.”

The Centers for Medicare & Medicaid Services (CMS) and the Department of Health and Human Services (HHS) have listed improved health literacy as organizational priorities. Specifically, HHS has included it in its Healthy People 2030 initiative.

Organizations and professionals can enhance their health literacy by implementing proven strategies. These include addressing questions in simple, non-medical language and creating and testing written materials for the intended audience, as per the HHS.

It’s important to consider that any patient may face challenges in understanding health information. Adults with limited literacy often feel ashamed of their abilities and may conceal their difficulties. Conducting informal client assessments can help identify individuals with limited literacy skills.

“Organizations should start by asking themselves this question,” Brooks said. “What do we need to do to reach our clients in a way they understand and that speaks to them? Materials and messaging need to be presented in a way that is most easily understood by clients and resonates with them. Employees must learn how to incorporate health literacy into their work every day.”

State contracts often require insurers serving Medicaid enrollees to have materials available in multiple languages, written at a sixth-grade reading level or lower, and have member-facing staff who can speak languages other than English.

“It is important to have data on how your current and potential clients understand and process information,” Brooks said. “This includes not only what languages they speak but also factors like age, education level, gender identity, sexual orientation and family structure. This information provides important insights into their needs. It is about communicating to members in a way that is most easily understood and actionable.”

The CDC recommends asking patients how often they need help reading written material from their doctors or pharmacies and asking them to explain instructions in their own words to show that they understand. Use videos, models and pictures to help clients learn. Listen to concerns without interrupting and consider clients’ cultural and linguistic norms when developing messages. Use certified translators and interpreters to adapt to language preferences.

“There are validated tools for analyzing written health information for reading ease and accessibility,” Kurtz-Rossi said. “These include the Patient Education Materials Assessment Tool, the CDC Clear Communication Index, and the Readability, Understanding and Actionability of Key Information on Informed Consent Forms (RUAKI) Indicator. Readability formulas can tell you the reading grade level at which a material is written but do not assess layout and design, cultural relevance or other features that help make information accessible.”

Active engagement is also vital to improving clients’ health literacy and ensuring they receive the best care. Engaged clients are more likely to follow treatment plans and work with their caregivers to make informed decisions.

Caregivers should encourage questions, ask clients to express concerns, and readily offer information during visits. Open communication helps build relationships between clients and caregivers and may make clients feel more comfortable asking questions about their conditions.

“The ten attributes of literate health care organizations provide a framework for how organizations can ensure clear communication and understanding,” Kurtz-Rossi explained. “Health-literate organizations strive to provide equitable and understandable information and services using evidence-based health literacy interventions, including plain language in written and oral communication and teach back to confirm understanding. Other health literacy tools and resources can help organizations engage leadership, prepare the workforce, create a shame-free environment and use plain language print materials and websites.”

Caregiver literacy is also a concern

It is important to note that caregivers also have a range of health literacy skills.

“Health literacy is a multifaceted concept which reflects not only individual-level skills but also the unnecessary burden placed on clients and caregivers by an overly complex health system,” Rachel O’Conor, assistant professor at the Center for Applied Health Research on Aging at Chicago’s Northwestern University, told HHCN. “Thinking about health literacy as both an individual skill, but also an organizational trait, can be helpful for agencies to consider as they seek to promote health literacy among their caregivers.”

A recent study showed that 44% of caregivers demonstrated adequate knowledge, 36% demonstrated marginal knowledge and 20% had low health literacy skills. In adjusted analyses, caregivers with marginal and low health literacy demonstrated worse overall performance on health tasks and poorer interpretation of health information presented on print documents and recall of spoken communication. As a result, these caregivers demonstrated poor performance on everyday health tasks with which they commonly assist older adults. The application of health literacy best practices to support better training and capacity-building for caregivers was found to be warranted.

Researchers suggested online training modules to promote caregiver communication with health care clinicians. Following health literacy best practices, these modules should be developed using plain language and cultural inclusion.

“To ensure caregivers are equipped to provide a high level of care, agencies should provide skills-based training on how to assist with health-related tasks,” O’Conor said. “The training could incorporate health literacy best practices in order to promote comprehension and application of the information.”

O’Conor said that she has found that the inclusion of both spoken and print information can promote recall, as well as breaking the information into manageable pieces for better comprehension.

“All corresponding information needs to be easy to understand,” she said. “Passing a simple test demonstrating competency may be reasonable to ensure proficiency in these skills. This act of demonstrating proficiency is in essence the application of teach-to-goal procedures, which is a common health literacy best practice to promote comprehension of health information.”

Home-based care agencies that prioritize personal and organizational health literacy can benefit from multiple positive outcomes. Expanded literacy can improve client health outcomes, decrease emergency department visits by ensuring clients seek preventative care, reduce the number of dosing errors, help clients manage chronic conditions and increase satisfaction.

“Caregivers have a unique role to play when it comes to tailoring and communicating treatment plans to meet the unique needs of individual clients,” Kurtz-Rossi said. “Doctors are one important point of content, but it takes a health care team – including family members – and each member of the team needs to listen to client concerns and communicate plans and services clearly. Clear communication builds trust. When a client is engaged with and trusts their caregivers, they are more likely to follow recommendations.”