Prospective registration of symptoms and times to diagnosis in children and adolescents with central nervous system tumors: A study of the Swedish Childhood Cancer Registry

Abstract

Background The elapsed time taken to diagnose tumors of the central nervous system in children and adolescents varies widely. The aim of the present study was to investigate such diagnostic time intervals at a national level in Sweden as they correlate with clinical features. Methods Data prospectively accumulated over a 4‐year period in the Swedish Childhood Cancer Registry from patients aged 0–18 years were pooled, and diagnostic time intervals were analyzed considering tumor location, tumor type, patient age and sex, initial symptoms, and clinical timelines. All six pediatric oncology centers in Sweden contributed to collection of data. Time points for calculating the total diagnostic interval (TDI) defined as the time from symptom onset to diagnosis were reported in 257 of 319 patients (81%). Results The time from symptom onset to the first healthcare consultation, median 2.6 weeks, did not vary significantly between patients categorized according to tumor type or location. The median TDI was 8.3 weeks for the 4‐year study period. Patients with optic pathway glioma (TDI 26.6 weeks), those with tumors of the spinal cord (TDI 25.9 weeks), and those with midline tumors (TDI 24.6 weeks) had the longest lead times. Additionally, older age, too few initial symptoms, and seeking initial redress outside an emergency ward were factors associated with a longer time to diagnosis. Conclusion This study identified several factors associated with delayed diagnosis of central nervous system tumors among Swedish children and adolescents. These novel data ought to help direct future efforts toward clinical improvement.

Total diagnostic interval in children with brain tumours in a middle-income country: national experience from Serbia

“…Significantly longer TDI was observed in low-grade tumours compared to high-grade tumours (11-vs 4-week median). This finding, reflecting tumour biology, has been observed previously [10,17,18,28]. TDI in patients who were not graded was 5 weeks.…”

“…The distribution of symptoms in our study supports that finding. Children with these complaints had a shorter total diagnostic interval (5-week median) compared to children without them (median ranging from 7 to 8 weeks) supporting the previous studies [17]. Additionally, a survival study of paediatric patients with brain tumours in Serbia conducted between 2007 and 2016 reported symptoms of increased intracranial pressure as the most common complaint [22].…”

“…Nationwide studies showed a median total diagnostic interval of Fig. 1 The total diagnostic interval between different age groups (a), tumour locations (b), tumour types (c) and tumour grades (d) (♦mean, *P < 0.05) 8.3 weeks in Sweden and 4 weeks in Qatar [17,18]. This has been summarised in Table 3.…”

“…According to Serbian medical chamber data, around 1200 paediatricians work in primary care meaning that every 30th will encounter a child with a brain tumour each year, leaving some without the opportunity to encounter such a patient during their whole working career [33]. A most recent Swedish study provided evidence that patient interval does not vary amongst different tumour types/locations, suggesting that most interventions should be directed towards medical professionals [17]. Special campaigns and guidelines for physicians are created worldwide to raise awareness of paediatric tumours [10,34].…”

“…TDI in children with brain tumours has been studied around the world, mostly through single-institution investigations in high-income countries [11][12][13][14][15][16][17][18]. So far, it has never been thoroughly explored in any of the Balkan countries which share a similar socio-economic milieu [19].…”