Factors that contribute to disparities in time to acute leukemia diagnosis in young people: an in depth qualitative interview study
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Published:2022-05-12
Issue:1
Volume:22
Page:
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ISSN:1471-2407
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Container-title:BMC Cancer
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language:en
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Short-container-title:BMC Cancer
Author:
Ding Lucky,Szymczak Julia E.,Evans Erica,Canepa Emma,Martin Ashley E.,Contractor Farah,Aplenc Richard,Joseph Galen,Winestone Lena E.
Abstract
Abstract
Background
Racial and ethnic disparities in outcomes for Black and Hispanic children with acute leukemia have been well documented, however little is known about the determinants of diagnostic delays in pediatric leukemia in the United States. The primary objective of this study is to identify factors contributing to delays preceding a pediatric leukemia diagnosis.
Methods
This qualitative study utilized in-depth semi-structured interviews. Parents and/or patients within two years of receiving a new acute leukemia diagnosis were asked to reflect upon their family’s experiences preceding the patient’s diagnosis. Subjects were purposively sampled for maximum variation in race, ethnicity, income, and language. Interviews were analyzed using inductive theory-building and the constant comparative method to understand the process of diagnosis. Chart review was conducted to complement qualitative data.
Results
Thirty-two interviews were conducted with a diverse population of English and Spanish speaking participants from two tertiary care pediatric cancer centers. Parents reported feeling frustrated when their intuition conflicted with providers’ management decisions. Many felt laboratory testing was not performed soon enough. Additional contributors to delays included misattribution of vague symptoms to more common diagnoses, difficulties in obtaining appointments, and financial disincentives to seek urgent or emergent care. Reports of difficulty obtaining timely appointments and financial concerns were disproportionately raised among low-income Black and Hispanic participants. Comparatively, parents with prior healthcare experiences felt better able to navigate the system and advocate for additional testing at symptom onset.
Conclusions
While there are disease-related factors contributing to delays in diagnosis, it is important to recognize there are multiple non-disease-related factors that also contribute to delays. Evidence-based approaches to reduce outcome disparities in pediatric cancer likely need to start in the primary care setting where timeliness of diagnosis can be addressed.
Funder
Abramson Cancer Center’s Paul Calabresi Career Development Award for Clinical Oncology
Alex’s Lemonade Stand Foundation Young Investigator Award
Bear Necessities Pediatric Cancer Foundation Fellow Award
American Society of Hematology Scholar Award
Publisher
Springer Science and Business Media LLC
Subject
Cancer Research,Genetics,Oncology
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