TY - JOUR
T1 - Patient- and parent-reported diagnostic delay in children withcentral nervous system tumors in Denmark
AU - Weile, Kathrine Synne
AU - Helligsø, Anne Sophie Lind
AU - von Holstein, Sarah Linéa
AU - Winther, Jeanette Falck
AU - Mathiasen, Rene
AU - Hasle, Henrik
AU - Henriksen, Louise Tram
PY - 2024/8
Y1 - 2024/8
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
UR - http://www.scopus.com/inward/record.url?scp=85194702049&partnerID=8YFLogxK
U2 - 10.1002/pbc.31128
DO - 10.1002/pbc.31128
M3 - Journal article
C2 - 38814259
SN - 1545-5009
VL - 71
JO - Pediatric Blood & Cancer
JF - Pediatric Blood & Cancer
IS - 8
M1 - e31128
ER -