The Importance of Health Literacy for People With Blood Cancer

Health literacy is a powerful tool that can improve the quality of life for people with blood cancer. Blood cancer is a type of cancer that affects the cells in your blood. It stops blood cells from working correctly, which can make you sick and weaken your immune system. There are different types of blood cancer, including leukemia, lymphoma, and myeloma.^1,2

What is health literacy?

Health literacy is the ability to understand and use health information to make informed decisions about your health. It involves:^2,3

• Reading and understanding medical instructions
• Understanding health-related documents
• Knowing how to take medicines as prescribed
• Making informed decisions about your health

Health literacy empowers people to take charge of their health, communicate well with healthcare providers, and follow treatment plans.^2,3

The impact of poor health literacy

Poor health literacy can lead to:²

• Delays in diagnosis
• Misunderstanding treatment options and medicine instructions
• Missed healthcare appointments
• Not following treatment plans

People with poor health literacy are less likely to keep up with preventive screenings and healthy lifestyle habits. This can lead to worse health outcomes down the road as well as lower quality of life.²

Barriers to healthcare

Unfortunately, not everyone has the same level of access to health literacy and healthcare. People from lower-income backgrounds or those with less education may have more trouble understanding health information.^4,5

Racial and ethnic health disparities also play a role. Underrepresented and minority groups often face more healthcare barriers, which lead to poor health outcomes and reduced quality of life. Certain population groups may face things like:^4,5

• Language differences
• Cultural misunderstandings
• Lack of access to healthcare resources
• Living with other health issues (comorbidities)
• Environmental factors
• Bias or racism among healthcare providers

In the case of blood cancer, Hispanic Americans with blood cancer are often diagnosed at later stages of the disease. They also have lower survival rates when compared to people with blood cancer who are not Hispanic.⁵

Understanding blood cancer and its treatments

Blood cancer is complex. Treatment can involve various therapies, such as:^1,5

• Chemotherapy
• Radiation therapy
• Immunotherapy
• Targeted therapy
• CAR-T cell therapy
• Stem cell transplants

Understanding these treatments is essential for making informed decisions. People who have good health literacy can better understand the benefits and risks of each treatment option. They are also more likely to ask important questions and get second opinions. This knowledge can help you feel more in control of your blood cancer journey.^3,5,6

Why health literacy matters for people with blood cancer

Many types of blood cancer are now managed as chronic conditions. This means that, while they may not be cured, they can be controlled for long periods of time.¹

Health literacy helps people with blood cancer manage their daily health over time. It enables them to:^2,5,6

• Recognize symptoms
• Understand the importance of regular health monitoring
• Stick to treatment plans
• Manage side effects
• Maintain a healthy lifestyle
• Work with their healthcare team to adjust treatment as needed

How to improve your health literacy

Improving your health literacy can greatly affect your ability to manage blood cancer. Here are some actions you can take.^6,7

Maintain clear communication with your doctor

If you do not understand something, ask your doctor to explain it in simpler terms. It is your right to have information presented in a way that makes sense to you.^6,7

Try the teach-back method. This means you explain in your own words what you have heard your provider say. They will listen to make sure you understand the information correctly.⁷

It is also helpful to take notes or bring someone with you to medical appointments to help you remember what your provider says. Prepare a list of questions before your visit. This will ensure that you cover all your concerns.⁸

Seek out reliable resources

Look for information from trusted sources such as government health websites, respected cancer organizations, and patient advocacy groups. Be cautious of misinformation online.

The Centers for Disease Control and Prevention (CDC) and the National Institutes of Health (NIH) are good places to start. These sites often provide clear, evidence-based information.

Lean on your health institution

Health institutions should provide clear, easy-to-understand information for their patients. This might be written materials, videos, or even apps that help explain things like treatments and how to take your medicine. Ask your healthcare team if they can provide you with health literacy toolkits.⁸

Seek support groups

Connecting with others who have blood cancer can provide valuable insights and emotional support. These groups can offer practical advice and share experiences that can help you feel less alone.