40O - Diagnostic trajectories of rare cancer patients in the Netherlands: Results from a nationwide cross-sectional survey

Background

Diagnosing rare cancers is challenging, often involving prolonged diagnostic trajectories. This study examined the diagnostic journey of rare cancer patients and explored differences between subgroups (solid vs. non-solid tumours and 10 EURACAN domains).

Methods

Recruited via patient advocacy groups, 1,540 patients answered a nationwide online survey about their diagnostic journey, including time between first general practitioner (GP) consultation to hospital referral, initial diagnosis accuracy, and number of hospital visits before final diagnosis. Diagnostic journeys were compared between rare cancer subgroups.

Results

Diagnostic timelines varied from <3 up to >12 months, with most patients consulting GPs (76%) and being referred to a hospital within >3 months (76.3%). Extended GP-to-hospital waits mainly impacted neuroendocrine tumour (NET; 21.7%), endocrine tumour (17.5%) and haematological patients (13.4%). Once at the hospital, 14.5% of patients waited >3 months for a final diagnosis. Almost a third of patients (32.1%) reported receiving an incorrect diagnosis, and 44.6% of them underwent treatment or took medication for the (perceived) incorrect diagnosis. Correct initial diagnosis varied significantly between solid and non-solid groups (p<0.001). Non-solid cancer patients often received a correct diagnosis in a single hospital visit (75%), while solid cancer patients needed 2 or more visits (57.7%). Sarcoma patients most often reported having received >1 incorrect initial diagnoses (19.5%). Rare skin cancer and non-cutaneous melanoma, head and neck, and thoracic cancer patients often visited multiple hospitals before receiving an accurate diagnosis (56.7%, 53.8% and 50.0%).

Conclusions

Delays in diagnosis and diagnostic accuracy pose serious challenges for patients with rare cancers. Risk groups for longer journeys include NET or endocrine tumours patients, while sarcoma patients face higher incorrect initial diagnoses. Diverse diagnostic journeys emphasize the need for regional clinical networks for rare cancers to quicken and ensure a correct diagnosis.

Clinical trial identification

Editorial acknowledgement

Legal entity responsible for the study

The Netherlands Cancer Institute.

Funding

European Organization for Research and Treatment of Cancer - Quality of Life Group (EORTC QLG).

Disclosure

All authors have declared no conflicts of interest.