Abstract Background Delays in diagnosis are common in rare cancers, but their frequency and impact in gastrointestinal stromal tumors (GISTs)—one of the most prevalent sarcoma subtypes—are unknown. This study aimed to (1) quantify patient- and diagnostic-related intervals, (2) identify factors influencing interval length, and (3) assess their impact on health-related quality of life (HRQoL). Patients and Methods Patients with GIST diagnosed in the Netherlands between 2008 and 2018 completed a questionnaire assessing time to diagnosis, impact of the diagnostic trajectory, and HRQoL. Univariable logistic regression analyses identified associated patient and tumor characteristics. Results Among 328 patients (median 5.9 years after diagnosis), 28% reported a patient interval of ≥ 1 month and 14% ≥ 3 months. Diagnostic intervals were longer, with 43% ≥ 1 month and 20% ≥ 3 months. Prolonged diagnostic intervals were more common among female patients and those with small-intestinal GISTs or mid-sized tumors (OR 1.67, 95% CI 1.06–2.64; OR 1.83, 95% CI 1.07–3.16; OR 2.11, 95% CI 1.09–4.14). A total of 20% reported that the diagnostic trajectory negatively impacted their well-being. Actual interval length was not correlated with HRQoL. However, patients perceiving a negative impact had lower HRQoL scores and more often experienced prolonged intervals (68%) than patients reporting no or positive impact ( p < 0.001). Perceived delay was commonly associated with psychological distress and prolonged physical limitations, often persisting long after diagnosis. Conclusions Diagnostic intervals were prolonged in nearly half of patients with GIST, particularly in female patients and those with small-intestinal tumors or mid-sized tumors. Perceived, rather than actual, interval duration was associated with lower HRQoL, underscoring the importance of patient experience during the diagnostic trajectory.
Amerongen et al. (Thu,) studied this question.