“I know that leukemia treatment is a journey and that there is a long road ahead. I am just so relieved that my baby does not have cancer”—poignant and sobering words from a caregiver of a child with a new diagnosis of cancer.
These reflections from Dr. Ajibike Lapite’s essay on the state of health literacy in patients and their caregivers during the diagnosis and treatment of cancer are an insightful exploration of an important topic in oncology and medicine in general. Her article, which is being early released in Pediatrics (10.1542/peds.2024-067248), was the runner-up in the eighth annual Section on Pediatric Trainees essay competition on their advocacy campaign “Launch into Health Literacy."
The concept of healthcare literacy not being synonymous with literacy is one that I learned in medical school and that was reinforced in residency. I’ve taken care of enough people to know that, regardless of your income, advanced professional degrees, or language competency, medical terms and concepts can be difficult to understand without medical training.
This difficulty is exponentially amplified when you are under significant stress—stress like being told your baby has cancer. I agree with Dr. Lapite’s assertion that health literary should be a national priority and that medical and health organizations should equitably facilitate this. Improving health literacy cannot be the sole burden of the patient.
Dr. Lapite notes that the consequences of inadequate caregiver health literacy could include:
- Inaccurate perception of illness severity
- Medication errors
- Inappropriate use of the emergency department
- Increased rates of hospital re-admission
- Increased mortality
She also suggests a few approaches to improve both personal and organizational health literacy:
- Integration of health literacy into K-12 health education curriculum
- Universal use of plain language on healthcare websites, in discharge summaries, and other forms of healthcare communication
- Standard health literacy training for healthcare providers
- Use of visual aids
This compelling essay ends with a description of an inspired quality improvement project by the author’s fellowship class to provide a teaching intervention at the time of new diagnosis to help patients and their caregivers understand their diagnosis better. This involves health literacy bootcamps for providers, visual aids for understanding treatment roadmaps, and new diagnosis kits, with the aims of identifying and reducing gaps in both knowledge and understanding of their diagnosis.
This article will inspire you to prioritize health literacy in your vulnerable patients and their caregivers so they can make informed decisions while navigating a difficult diagnosis and treatment with more confidence.
