Abstract
Background: Sarcoma patients often experience a long time to diagnosis, known as the total interval. This interval can be divided into the patient (time from symptoms to doctor consultation) and diagnostic intervals (time from first consultation to diagnosis). In other cancers, a long total interval has been associated with worse outcomes, but its effect on health-related quality of life (HRQoL) has never been investigated among sarcoma patients. This study investigates the association between (1) the actual time to diagnosis and HRQoL; (2) the perceived impact of the diagnostic interval length and HRQoL; (3) the actual length and perceived impact of the length and the HRQoL of sarcoma survivors. Methods: A cross-sectional study was performed among sarcoma patients aged ≥18, diagnosed 2–10 years ago in the Netherlands. The participants completed a questionnaire on HRQoL, the time to diagnosis, the perceived impact of the diagnostic interval on HRQoL, and coping. Results: 1099 participants were included (response rate, 58%). The mean time since diagnosis was 67.4 months. More than half reported a patient (60%) or diagnostic interval (55%) ≥1 month. A third (31%) perceived a negative impact of the diagnostic interval length on HRQoL. Patient or diagnostic interval length was not associated with HRQoL. By contrast, participants perceiving a negative impact (32%) had lower HRQoL scores than those perceiving a positive (11%) or no impact (58%) (p = 0.000). This association remained significant in a multivariable model, in which maladaptive coping strategies and tumour characteristics were also found to be associated with HRQoL. Participants perceiving a negative impact of the length of the diagnostic interval related this to high psychological distress levels, more physical disabilities, and worse prognosis. Conclusion: The perceived impact of the diagnostic interval length was associated with the HRQoL of sarcoma survivors, whereas the actual length was not associated with HRQoL. Maladaptive coping strategies were independently associated with HRQoL. This offers opportunities for early intervention to improve HRQoL.
Highlights
Sarcomas are mesenchymal tumours, with considerable heterogeneity regarding the age of onset, anatomic location, histological subtype, and outcome
Responders were diagnosed at a mean age of 54.6 years, 54% were male, the mean time since diagnosis was 67.4 months, 76% were diagnosed with soft tissue (STS), and 47% of the sarcomas were located in the extremities (Table 1)
–malignant peripheral nerve sheath tumors (MPNST). In this cross-sectional cohort study among a large sarcoma survivorship population, we found that patient and diagnostic interval length were not associated with health-related quality of life (HRQoL) scores, but the perceived impact of the diagnostic interval length on HRQoL was associated with HRQoL scores
Summary
With considerable heterogeneity regarding the age of onset, anatomic location, histological subtype, and outcome. These solid tumours consist of more than 100 histologic subtypes that originate in soft tissue (STS; 80%) or bone (BS; 20%). Sarcoma patients often experience a long time to diagnosis, known as the total interval. A long total interval has been associated with worse outcomes, but its effect on health-related quality of life (HRQoL) has never been investigated among sarcoma patients. This study investigates the association between (1) the actual time to diagnosis and HRQoL; (2) the perceived impact of the diagnostic interval length and HRQoL; (3) the actual length and perceived impact of the length and the HRQoL of sarcoma survivors. The participants completed a questionnaire on HRQoL, the time to diagnosis, the perceived impact of the diagnostic interval on HRQoL, and coping
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