Achieving a timely diagnosis for teenagers and young adults with cancer: the ACE "too young to get cancer?" study

Abstract

Background: Time to diagnosis (TTD) concerns teenagers and young adults (TYA) with cancer and may affect outcome.

Methods: Healthcare records from 105 TYA in a regional cancer service were assessed to document events from 1st symptom to treatment start. Detailed pathway construction was possible for 104 patients and allowed a multidisciplinary panel review of each pathway with assessment of good practice and lessons for the future.

Results: 1st presentation was to primary care in 86, and 93% consulted in primary care before diagnosis. Routes to Diagnosis were 45% via urgent 2 Week Wait pathways and 38% as emergency referrals. Total Interval (time from 1st presentation to treatment start) was median 63 (range 1-559) days, varying within/between diagnoses. Patient interval (time from 1st symptom to 1st presentation) was longest for lymphoma, carcinoma and bone tumour (medians: 9, 12, 20 days). Overall, time in primary care was short (median 3, range 0-537 days) compared to secondary care (median 29, range 0-195 days) and longest for lymphoma, carcinoma, brain/CNS (medians: 10, 15, 16 days). Specialist Care interval (time from 1st specialist visit to treatment start) was longest for bone, brain/CNS, lymphoma, carcinoma (medians: 30, 33, 36, 48 days). 40% pathways were rated as showing good/best practice but 16% were less than satisfactory. Continued safety-netting/support was identified from primary care but analysis suggested opportunities for improvement in transition through secondary care.

Conclusions: Previous reports of prolonged TTD have focused on delay in referral from primary care but this study suggests that this might be reduced by optimising management in secondary care.

Keywords: Primary care; Routes to diagnosis; Secondary care; TYA; Time to diagnosis.

Fig. 1

Clinical bottom line by diagnosis

Fig. 2

Front page from a patient summary report prepared for clinicians involved in care

Fig. 3

Number of primary care contacts from 1st presentation to start of treatment by type of cancer diagnosis i.e. throughout the Total Interval (each bar represents one patient)

Fig. 4

Routes to Diagnosis by cancer type

Fig. 5

a Total Interval (vertical axis capped at 300 days) by individual patient and diagnosis. b Median duration of Primary Care Interval and Secondary Care Interval (days). c Median duration of Diagnostic Interval and Treatment Interval (days)