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October 25, 2024
By Tristan Horrom
VA Research Communications
"Our main goal with this study was to develop resources specifically designed for patients with lower health literacy to start to address health equity and correct some of the long-standing disparities that exist in lung cancer care."
Cancer. It is a word no one wants to hear from their doctor. A word that can send anyone into a spiral of emotions, confusion, and even panic, but it’s never the last word. The following words from a doctor are about health care and treatment, and usually they are long words in complicated phrases. They pose difficult choices about an expanding range of treatment options and consideration of the substantial trade-offs between potential benefits like increased survival and harms such as reduced quality of life.
How can a Veteran make a life-changing choice if they don’t even understand what is being said?
“Only about 12% of U.S. adults have proficient health literacy, and the situation is even worse among those diagnosed with lung cancer,” explained Dr. Donald Sullivan. Sullivan is the head researcher of a team from the VA Portland Health Care System and Oregon Health and Science University who are developing a conversation tool for patients with all stages of non-small cell lung cancer called iDECIDE.
“Patients with lower socioeconomic status (a surrogate of low health literacy) have higher incidence, lower screening rates, and worse outcomes, including survival,” Sullivan added. “Patients with low health literacy are also less able to engage in their care and are less adherent to recommended treatments. Therefore, it is essential to develop low literacy decision support tools to allow them to be more active participants in their care.”
The iDECIDE guidebook is written at a fifth-grade reading level and presents as much information as possible in tables and pictographs rather than text. The researchers emphasized the importance of making a tool that works for everyone, regardless of their health literacy levels.
“Our main goal with this study was to develop resources specifically designed for patients with lower health literacy to start to address health equity and correct some of the long-standing disparities that exist in lung cancer care,” said Sullivan, who also holds a research appointment with the VA Center to Improve Veteran Involvement in Care. “You could say taking the extra time to develop a more accessible tool was our guiding light, or north star, when we started this work.”
This lung cancer decision-support tool is a great example of a larger effort within VA to increase health literacy in Veterans. The VA National Center for Health Promotion and Disease Promotion and Patient Centered Learning program launched Health Literacy Month in October 2024 for that purpose.
Health Literacy Month offers VA health care providers and staff a valuable opportunity to focus on ensuring Veterans fully understand their health care information, which is crucial for making informed health decisions and improving outcomes. Health literacy is the ability to obtain, process, and understand basic health information to make appropriate health decisions.
The health literacy campaign also includes clinician and staff education to encourage the use of plain language free of medical jargon, creating an inclusive environment, providing Veterans all the information they need to make informed decisions, and eliciting feedback to make sure Veterans understand the care options being presented to them.
“Decision support tools would likely help any patient diagnosed with cancer, given how complicated cancer therapy options have become and given the significant advances in cancer care in the last decade,” Sullivan explained. “However, decision-support tools like iDECIDE will likely have the greatest effect among those with lower health literacy, who lack the understanding and confidence to be active participants in their care.”
The iDECIDE conversation tool is intended to be administered prior to doctor appointments as a first step to promote conversation with the medical team. It consists of five main sections: The education section gives a brief explanation of the different lung cancer treatments available, such as surgery, radiation, and palliative care. The values section assesses what is most important to patients using ten values statements, such as how important it is to remain in their current home or to minimize the chance of the cancer returning. The goals section examines the patient’s long-term goals, particularly as they relate to survival versus quality of life. The treatment choice awareness section has the patient answer questions about the personalization of their cancer care to make sure they understand their options. Finally, the treatment comparisons section uses consequence tables to help the patient weigh their possible treatment options, individualized based on what stage the cancer is in.
The iDECIDE tool is still in development though. It began in 2022, when the research team tested the conversation tool with a group of 27 patients with non-small cell lung cancer. All participants agreed the tool would be helpful to clarify their thinking about values, treatment options, and goals and to help them communicate more effectively with their clinicians.
Using the feedback from their preliminary work, the researchers refined the tool and tested it again with a larger group of 65 patients. While results of that test are expected to be published in the spring, preliminary results were encouraging. In the second pilot study, patients’ decisional conflict and anxiety decreased significantly and their self-efficacy and involvement in their care increased.
Sullivan and his team next plan to study how best to implement their tool in clinical practice. They are also working to translate iDECIDE into other languages such as Spanish.
“We hope that one day within VA we will be able to offer iDECIDE to all patients diagnosed with lung cancer to help them navigate their diagnosis and become more active participants in their care,” said Sullivan.
In the meanwhile, the National Center for Health Promotion and Disease Promotion and Patient Centered Learning program have prepared a list of six things Veterans can do to ensure their health literacy needs are met at their health care visits:
Many Veterans face challenges in navigating complex medical information, which can impact their ability to manage their health effectively. By prioritizing health literacy and shared decision-making, VA is empowering Veterans to take control of their health and improve their overall quality of life.
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