Cancer, Consents, and Chaos: Navigating Health Literacy at the Time of a New Oncology Diagnosis

The following essay is the runner-up in the eighth annual Section on Pediatric Trainees essay competition, informed by the 2023 to 2024 Section on Pediatric Trainees Advocacy Campaign: “Launch into Health Literacy.” This initiative encouraged trainees to advocate for families facing obstacles in pediatric care caused by low health literacy at personal and organizational levels. We challenged writers to think critically about these issues, especially among systematically underserved communities affected by broader upstream factors that amplify health disparities. The thoughtful and innovative submissions we received were truly inspiring.Dr Lapite’s essay explores the dynamic nature of health literacy and highlights the challenges of organizational health literacy for patients under significant stress. As a pediatric oncology fellow, she emphasized the difficulties for families facing a new cancer diagnosis. Such families must absorb a plethora of information at an emotionally charged time, often resulting in miscommunications between them and their healthcare providers. Dr Lapite discusses strategies to alleviate this confusion and introduces a protocolized intervention her fellowship class is undertaking designed to help families navigate the initial chaos of a cancer diagnosis.The winning essay by Dr Lauren Burgoon, which highlighted the unique health literacy challenges faced by children with sickle cell disease, appeared in last month’s issue.I realized early in fellowship that it never gets easier – and maybe it shouldn’t – to disclose a cancer diagnosis. Over time, I felt I could predict how a caregiver might respond to the news. Some caregivers would want to review the consents on their own. Others would want to hear every detail about anticipated treatment. Many parents would balk upon mention of a spinal tap or bone marrow biopsy. Some would hold back their tears until they saw a picture of a port-a-cath.Every new cancer diagnosis demands attention and sparks chaos. Outside patient rooms, we confirm the diagnosis, initiate supportive care, schedule procedures, assess clinical trial eligibility, and identify the appropriate treatment plan. Inside patient rooms, we attempt to translate oncology into English or Spanish or Arabic or Vietnamese.Ace was 4 years old when he presented to our emergency department with pallor. “We didn’t notice,” his mother started, “until my sister mentioned it. And then my brother mentioned it. And then my mother…Anyway, yes, this is not his normal color.”The initial evaluation revealed pancytopenia and lymphoblasts. The diagnosis of leukemia was disclosed twice: first by the emergency department provider and then by the pediatric oncology consult team. His parents cried both times. Ace was admitted to the oncology service for laboratory monitoring, procedures, and treatment initiation. He was discharged 1 week later with scheduled follow-up. At his first outpatient appointment, Ace’s parents described the admission as stressful and chaotic.“This past week has been really hard,” his mother said. “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.”Despite the series of conversations and consents throughout Ace’s hospitalization, his parents did not fundamentally understand his diagnosis.Health literacy (HL) is an individual’s ability to collect, understand, and use health information to make informed medical decisions.1 The first national assessment of HL revealed that few adults (11%) have proficient HL.2 The pandemonium of the coronavirus disease 2019 (COVID-19) highlighted the bleak status of American HL as a second pandemic of confusion and misinformation emerged, in part because of the prevalence of health illiteracy.3 Healthy People 2030 highlights HL as a national priority and emphasizes that organizational HL, the degree to which organizations equitably facilitate informed decision-making, should be considered alongside personal HL.4 This concept underscores the key point that the onus to improve HL is not on individuals alone.Standardized protocols for healthcare delivery have been proposed as a measure to address HL and ensure equitable care.1,5 Diagnostic and treatment protocols are the mainstay of pediatric oncology. What remains variable–and particularly susceptible to inequity–is caregiver-provider communication. Additionally, healthcare providers struggle to accurately estimate patient and caregiver HL, which can exacerbate communication gaps in the patient and family-provider dyad.6“I am just so relieved that my baby does not have cancer,” I quoted Ace’s mother during a fellowship debrief in which we discussed our most challenging conversations with patients and/or caregivers. These conversations were hard because of the emotional state of a caregiver, intermittent pages during such a sensitive conversation, the inevitable chaos that comes with a life-changing diagnosis, inadequate in-person or video interpretation, or even treatment refusal. One harrowing realization was that some families may go through the motions with us, nod at the appropriate times, sign the treatment and procedure consents, watch their child receive intravenous chemotherapy, and fundamentally not understand the why of it all.The consequences of inadequate caregiver HL are many: inaccurate perception of illness severity, medication errors, inappropriate use of the emergency department, increased rates of hospital readmission, and increased mortality.7–10 Although health illiteracy in adults with cancer is associated with poor outcomes and decreased overall survival, the impact of health illiteracy on health outcomes for children with cancer is unknown.11 What has been shown is that limited health literacy for caregivers of children with cancer is associated with lower comprehension during an informed consent.12 Additionally, HL is dynamic and can vary based on the diagnosis, healthcare team, and healthcare system.13 A period of significant stress, such as a new oncology diagnosis or an admission to the ICU, can compromise HL. I cannot help but think about Ace’s parents and their emotional state at the time of treatment and procedure consents.Our partnership with our patients’ caregivers cannot be understated as the vast majority of pediatric oncology management is outpatient. We depend on caregivers to administer oral chemotherapy, attend a litany of appointments, and monitor for worrisome symptoms. Adequate communication is required to ensure empowered and capable caregivers.There are a number of approaches to increase personal and organizational HL: (1) integration of HL into K through 12 health education curriculum, (2) universal use of plain language on healthcare websites, in discharge summaries, and other forms of healthcare communication, (3) standard HL training for healthcare providers, and (4) use of visual aids.14,15 Efforts to integrate HL into K through 12 health education hinges on the understanding that HL is not synonymous with literacy. Children who acquire the skills to understand healthcare information and the healthcare system will be better able to navigate the healthcare system as adults. Sustained integration of HL into the education system requires policy change. Avoidance of medical jargon and use of simple language makes healthcare information accessible, despite HL. Visual aids are important tools for healthcare information, especially for patients and caregivers who are unable to read.A recent study describes the success of a standard teaching intervention at time of discharge for children with new cancer diagnoses. In this study, families were able, regardless of HL, to understand their child’s diagnosis, the role of a primary oncologist, the treatment plan, indications to seek emergent care, the definition of a fever, and when to redose a medication.16 Our fellowship class was inspired by this work and has designed a quality improvement project to address communication through a HL lens.We organized a focus group of caregivers of children with cancer to determine if caregivers would be amenable to routine HL assessment and how best to introduce a HL screen at a critical and stressful time. Caregivers agreed that HL screening would be of value. Caregiver advice informed our initial HL screen in our pilot population: caregivers of children with a new diagnosis of leukemia. We intend to launch a series of HL bootcamps for our fellowship program and faculty. We plan to design visual adjuncts for our treatment roadmaps and new diagnosis kits. Combined, we hope these efforts will help us identify gaps in health literacy, equip providers with the tools necessary to have HL-conscious communication, and provide accessible medical information. In time, we hope to expand this work across our division.Conversations in pediatric oncology can be complicated and overwhelming for patients and caregivers. Key communication interventions can make a large impact on patient and caregiver understanding. HL-conscious communication is necessary to bridge the communication chasm between caregivers or patients and providers and to provide the comfort and clarity needed to mitigate the chaos of a cancer diagnosis.This quality improvement project would not be possible without our patients and their families, caregivers who have participated in our focus group, my co-fellows (Drs Bryony Lucas, Taylor Luckie, Candelaria O’Farrell, Andrew Wahba, and Shuo Xu), our project mentors (Drs Quinn Franklin, M. Fatih Okcu, Nicole Schneider, and Chelsea Vrana), current and former fellowship program leadership (Drs YoungNa Lee-Kim, Priya Mahajan, Robin Parihar, and Baheyeldin Salem), and the hematology/oncology quality improvement leadership (Drs Lisa Bomgaars and Murali Chintagumpala). I am grateful to my friends and family members who have read various iterations of this manuscript and provided feedback: Sarah Jaffar, MD, Krupa Jani, MD, PhD, Samaa Kemal, MD, MPH, Leta Ko, MPHTM, Folasade Lapite, MD, MBE, Jessie McCaig, MSc, and Shana Zucker, MD, MPH, MS.