Introduction: The stark racial and ethnic disparities in outcomes for Black and Hispanic children with acute leukemia have been well documented. Socioeconomic status (SES) also has been implicated in contributing to worse outcomes. However, little is known about the role access to care plays in acute leukemia disparities. The primary objective of this study is to characterize patient and parent experiences and to identify factors contributing to delays preceding an acute leukemia diagnosis.
Methods: Patients ages 0-32 years who were within 12 months of receiving a new diagnosis of acute leukemia at Children's Hospital of Philadelphia (CHOP) or University of California, San Francisco (UCSF) were purposively sampled for maximum variation. We conducted in-depth semi-structured interviews, in which caregivers (defined as a parent or guardian) and/or patients were asked to reflect upon their family's experience leading up to the patient's diagnosis of acute leukemia. Interviews were coded using AtlasTi and analyzed for emerging themes using inductive theory-building and the constant comparative method to understand the process of leukemia diagnosis.
Results: A total of 23 in-depth interviews (with 20 parents and 3 patients) were conducted with a diverse population of participants; 3 self-identified as Black, 5 self-identified as Hispanic, 1 self-identified as mixed race/ethnicity, and 10 reported low income. Parents reported feeling frustrated when their intuition conflicted with the management decisions made by physicians during initial clinical visits (Table 1). Many parents felt that medical providers did not perform laboratory testing soon enough. Additional factors that contributed to delays included misattribution of vague symptoms to more common diagnoses, difficulties in obtaining an appointment with a pediatrician, and financial disincentives to seek urgent or emergent care. In contrast, parents who had experience with the healthcare system prior to the leukemia diagnosis, as either healthcare professionals or through previous medical histories, felt they were in a better position to navigate the system and advocate for blood testing at initial symptom onset. Reports of difficulty seeing a medical professional as well as financial concerns were disproportionately raised among low-income Black or Hispanic study participants.
Conclusions: Interviews with patients and their parents yielded a deeper understanding of the key reasons for diagnostic challenges in pediatric acute leukemia. Implicit racial bias may affect clinical decision-making and exacerbate physician-parent tensions. Our data also suggest that socioeconomic disparities could potentially contribute to a prolonged timeline preceding an acute leukemia diagnosis. By identifying factors associated with a prolonged diagnostic interval, and their contribution to disparities in pediatric acute leukemia diagnosis, our findings highlight the need to improve leukemia diagnosis for patients who have prolonged symptoms due to barriers in accessing appropriately responsive care.
No relevant conflicts of interest to declare.
