Introduction: Delays in diagnosis are common for patients with bone and soft tissue sarcoma (STS) despite guidance produced by the National Institute for Health and Clinical Excellence. This study set out to identify early symptoms experienced by patients and reasons for delays in making a definitive diagnosis.
Methods: Retrospective interviews were carried out with 107 patients (66 with an STS and 41 with a bone sarcoma) presenting to a specialist centre. Symptoms were determined prior to definitive diagnosis and the occurrence of patient and doctor delays in reaching specialist care.
Results: The median patient delay was 1 month while the median doctor delay was 3.2 months from first symptoms to diagnosis for all sarcomas. Forty-nine patients with STS (74%) presented initially to their general practitioner with at least one guideline feature to prompt urgent referral. Only 2 patients (4%), however, were referred directly to a sarcoma unit, with 21 (43%) referred to secondary care for investigation. Patients with a lump increasing in size exhibited longer patient delays while doctor delay was shorter for deep lumps. Thirty-six patients with a bone sarcoma (88%) presented initially with symptoms to prompt further investigation. Nevertheless, significant delays (3.9 months) were seen in reaching specialist care. Only 4 patients (10%) were referred directly to a sarcoma unit at first presentation, with 21 (54%) referred for further investigation elsewhere.
Conclusions: It is evident that awareness and referral of sarcomas remain poor. We suggest specific amendments to current guidelines and clearer referral pathways for patients. Furthermore, the need for robust education strategies is indicated, predominantly among healthcare professionals.