A Late Night Page and a Lesson on Health Literacy

It’s 3 am and my brain and body are in that brief interlude between consciousness and sleep, when the welcoming power of rest starts to take hold and, for a few precious minutes, you can quiet your brain on an overnight shift.Then—beep, beep, beep! The shrill insistence of my pager as it screeches and rumbles on the call room nightstand. A patient wants to talk to you, the nurse informs me. Now? Now.I arrive at Maya’s room (names have been changed for patient privacy) to find her sitting on the edge of her bed, fresh tear stains on her face. “I need help,” she says in a small voice, and my mind quickly indexes the possibilities. Maya is admitted with vaso-occlusive pain crisis from sickle cell disease (SCD). Maybe her pain medications aren’t adequate? Does she have a new onset headache or chest pain that might prompt a stroke or acute chest syndrome workup? What if this is abdominal pain? Splenic autoinfarction happened years ago but maybe this is hepatic sequestration.But Maya doesn’t need my medical differential. She needs a listening ear. She asks to take a walk and we shuffle slowly down the quiet hallway together, both clutching her intravenous (IV) pole. She only makes it about 20 feet before the pain overwhelms her and we sit. “What is happening to me?”There are multitudes contained in this question. Maya is 11 years old and no stranger to vaso-occlusive pain crises. Her whole childhood has been punctuated by hospital admissions and hematology visits and needle sticks. But as her doctors carefully trended her hemoglobin and reticulocyte counts, did we miss explaining the what, why, and how of SCD to the 1 person who needed to understand it the most—our patient?Health literacy—formally defined as “the degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions” — is not simply a buzzword for plain language explanations of wellness and disease.1 It’s a fundamental responsibility for all physicians, and as pediatricians, we have 2 groups to focus on: our patients and their families. We cannot ignore either if we hope to create meaningful change that enables children to understand the basics of health.We have a lot of work to do. A shocking report on the health literacy of America’s adults revealed that just 12% had proficient health literacy and that 30% of those with Medicaid coverage had below basic health literacy.1 To put this into context, a below basic level is defined as the ability to correctly circle an upcoming medical appointment date on hospital paperwork. It takes an intermediate health literacy level to properly time the administration of prescription medications based on mealtimes.I train at a safety net hospital where more of my patients are uninsured than have private insurance. Our hospital has the highest percentage of Medicaid patients nationwide among pediatric academic medical centers.2 During family-centered rounds, I often must fight against my reflexive use of even simple medical jargon like “tachypnea” or “elevated BUN (blood urea nitrogen) levels.” It is humbling, then, to realize that prescription labels of “take twice a day with meals” are beyond the health literacy of many of my patients’ families.1Children with SCD represent a distinct challenge when it comes to health literacy. They face a multitude of complications from an early age, when concepts such as hemoglobin and anemia are beyond their understanding. As they grow, so do the challenges of health literacy, compounded by cumulative academic threats from frequent school absences for hospital visits and neurocognitive deficits that are common sequelae of this diagnosis.3 Approximately 90% of patients with SCD are Black, meaning there are additional social drivers of health caused by structural racism and disparities, including limited access to high-quality healthcare and education, that further undermine health literacy.4,5 This all takes a toll: among adolescents and young adults with SCD, researchers found that 68% lacked adequate health literacy.6 By late adolescence, when many patients with SCD begin to transition to adult care, only 38% in 1 study knew their baseline hemoglobin and just 66% understood what symptoms necessitated medical treatment.7 Maya’s confusion about her SCD, therefore, should distress us as pediatricians but, sadly, not surprise us.We know from long-standing work by Bibace and Walsh that children conceptualize illness in line with Piaget’s stages of cognitive development.8 Several pediatricians built on this concept to create a model for pediatric health literacy called Through the Eyes of a Child, which helps pediatricians have meaningful health conversations with patients. For example, a child 7 to 11 years old is in Piaget’s concrete-operational developmental stage, when logical thinking develops and associations are made between concrete events. This is when a patient can understand why getting coughed on by a sick classmate results in the patient’s own illness but typically cannot yet extrapolate beyond that to abstract thinking about “invisible” white blood cells.9 Based on this theory, by her age, Maya ideally would understand how and why her red blood cells warp, causing her pain and frequent hospitalizations, and ways that she can avoid known triggers, such as dehydration or swimming in cold water. Yet, we cannot rely on age alone to determine health literacy capabilities. If the foundation is missing, there is nothing to build upon.And so that night, Maya and I talked about what red blood cells do for the body. We looked at pictures of the familiar biconcave disc and how sickle cells compare. She understood a traffic jam analogy of sickle cells clogging her vasculature and more about why this pain plagues her. In other words, the very basics. There was still so much we didn’t get to talk about.For patients with chronic diseases like Maya, frequent medical appointments are prime opportunities to build a health literacy foundation with approaches that adapt as the child matures. A recent study showed that age-tailored teaching provided by college volunteers during hospitalizations and appointments was effective at providing pediatric patients with SCD with a better understanding of their disease.3 Another study demonstrated that adolescents with SCD preparing to transition to adult care showed significant improvement in a range of necessary skills to manage their chronic disease with the intervention of curated educational handouts. Patients received handouts tailored to their self-identified knowledge gaps around both health-related and general life skills, an intervention the authors note is low-cost and implemented at the clinic with minimal burden.10As pediatricians, we cannot focus health literacy only on children with chronic conditions. Many of our patients have much more infrequent touchpoints with healthcare systems and we need to capitalize on partnerships that reach children outside of our clinics. School-based initiatives led by pediatricians are ripe opportunities for health literacy gains.11 Working through existing curricula and school-based health centers is a natural inroad for motivated pediatricians to educate children. If we can lay the foundation early, it may move the needle on nationwide health literacy competency.There truly is a role for every pediatrician to combat health illiteracy depending on our interests and talents. We need pediatricians advocating at the policy level to promote paid sick and parental leave with job protection, so parents can be present at more appointments and bedsides during their children’s hospitalizations. Pediatricians can work with health system administration to establish resources and protected time to ensure health literacy education is part of every clinical encounter. The advocates among us can work on increasing healthcare accessibility in medically underserved areas, and all physicians must recognize the role of structural racism in directly causing many health disparities. All of us must commit to understanding the realities of and barriers to health literacy and how to best adapt our patient and parental education to individual needs.Advocating for health literacy is equally important at the individual level and is not only imminently achievable but should be considered our collective responsibility. Throughout training, I learned to build upon my patients’ existing health literacy and better recognize their needs. From the earliest newborn visits through adolescent physicals, I now narrate my way through the encounter so both patients and parents know what I’m looking for and why it’s important. “The baby’s soft spot feels exactly right, if you ever notice it pop up or sink in, let us know right away.” “I’m pressing her fingernail to see how fast the color returns. That helps me see if she’s dehydrated.” I work on a smaller scale but also feel the immediate impact of the partnerships created with my patients and families. I see children’s confidence grow in understanding how their body works.None of us alone can solve our nation’s health literacy crisis, but none of us can ignore our duty to work each day to combat it. As pediatricians, we are uniquely positioned to empower our patients and instill health literacy skills by meeting our patients where they are, whether that is in our clinic, in their schools, or even on the floor at 3 am.