TY - JOUR

T1 - Patient- and parent-reported diagnostic delay in children with central nervous system tumors in Denmark

AU - Weile, Kathrine Synne

AU - Helligsoe, Anne Sophie Lind

AU - von Holstein, Sarah Linea

AU - Winther, Jeanette Falck

AU - Mathiasen, René

AU - Hasle, Henrik

AU - Henriksen, Louise Tram

N1 - Publisher Copyright: © 2024 The Author(s). Pediatric Blood & Cancer published by Wiley Periodicals LLC.

PY - 2024

Y1 - 2024

N2 - Background: Diagnostic delays in childhood tumors of the central nervous system (CNS) pose a significant challenge. The aim of this study was to map diagnostic delay and presenting symptoms in Denmark. Methods: The study was a retrospective questionnaire study, mapping delay and symptoms in pediatric patients (0–17 years), diagnosed with a CNS tumor from 2015 to 2019. Descriptive analysis was performed to measure delay in days, reported as total diagnostic interval (TDI), patient interval (PI), and diagnostic interval (DI). Analysis of symptoms, contacts to healthcare professionals, and socioeconomic status was also performed. Results: We included 89 patients (median age 7.0 years, 54% male). The TDI was median of 106 days (range: 0–2694 days). Low-grade tumors had longer TDI than high-grade tumors (125 vs. 43 days; p ≤.02). Patients aged 15–17 displayed the longest TDI (median 665 days). Number of symptoms at onset were inversely associated with longer TDI in patients presenting one symptom (247 days) and patients presenting two to three (110 days) or greater than three complaints (66 days). PI was not associated with sex (p =.14), tumor grade (p =.63), location (p =.32), or socioeconomic status (p =.82). Most frequent single complaint at onset was headache (19%), most frequent combination of symptoms was headache and vomiting (60%). Conclusion: We found TDIs longer than reported in contemporary publications. TDI was longer in patients with low-grade tumors and only few symptoms at the time of onset. The findings support the crucial need of awareness and improved diagnostic tools to recognize and interpret symptoms to promote timely diagnosis.

AB - Background: Diagnostic delays in childhood tumors of the central nervous system (CNS) pose a significant challenge. The aim of this study was to map diagnostic delay and presenting symptoms in Denmark. Methods: The study was a retrospective questionnaire study, mapping delay and symptoms in pediatric patients (0–17 years), diagnosed with a CNS tumor from 2015 to 2019. Descriptive analysis was performed to measure delay in days, reported as total diagnostic interval (TDI), patient interval (PI), and diagnostic interval (DI). Analysis of symptoms, contacts to healthcare professionals, and socioeconomic status was also performed. Results: We included 89 patients (median age 7.0 years, 54% male). The TDI was median of 106 days (range: 0–2694 days). Low-grade tumors had longer TDI than high-grade tumors (125 vs. 43 days; p ≤.02). Patients aged 15–17 displayed the longest TDI (median 665 days). Number of symptoms at onset were inversely associated with longer TDI in patients presenting one symptom (247 days) and patients presenting two to three (110 days) or greater than three complaints (66 days). PI was not associated with sex (p =.14), tumor grade (p =.63), location (p =.32), or socioeconomic status (p =.82). Most frequent single complaint at onset was headache (19%), most frequent combination of symptoms was headache and vomiting (60%). Conclusion: We found TDIs longer than reported in contemporary publications. TDI was longer in patients with low-grade tumors and only few symptoms at the time of onset. The findings support the crucial need of awareness and improved diagnostic tools to recognize and interpret symptoms to promote timely diagnosis.

KW - adolescents

KW - central nervous system

KW - children

KW - diagnostic delay

KW - symptoms

KW - tumors

U2 - 10.1002/pbc.31128

DO - 10.1002/pbc.31128

M3 - Journal article

C2 - 38814259

AN - SCOPUS:85194702049

JO - Medical and Pediatric Oncology. Supplement

JF - Medical and Pediatric Oncology. Supplement

SN - 0740-8226

ER -