Short Report
Delay in referral to a specialist soft-tissue sarcoma unit

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Summary

Background

Soft-tissue sarcoma is a rare neoplasm which can occur almost anywhere in the body. There are no specific symptoms and signs and the disease can mimic more common benign and malignant conditions. It is not surprising, therefore, that diagnosis and referral to a specialist unit is often delayed.

Methods

A prospective audit was undertaken in 216 patients referred to a specialist unit with suspected or proven soft-tissue sarcoma over a 12 month period. All patients were interviewed to determine the chronology of symptoms and signs, and the referral and diagnostic pathway. Delay in referral was defined as three months or greater from first presentation to a doctor to review at our unit.

Results

There were 159 patients with previously untreated soft-tissue sarcomas. Thirty-one patients had delays in referral, and the overall median delay was 14 months (range 4–96 months). The delay was caused by the general practitioner in 13 patients, the patient (after general practitioner referral) on two occasions, by the hospital or referring specialist in seven patients, and was multifactorial in nine patients.

Conclusions

A fifth of patients with soft-tissue sarcoma encountered important delays in referral to this specialist unit. This duration of delay is likely to have had a detrimental effect on treatment options and outcomes, including survival in some patients.

Introduction

Soft-tissue sarcomas are rare tumours, with around 1200 new cases per year in the UK. They typically present with an enlarging painless mass anywhere in the body. While most large (>5 cm) or enlarging soft-tissue masses will be benign (in a ratio of about 100:1),1 the consequences of a malignant diagnosis are such that patients with suspected soft-tissue sarcoma should be rapidly referred by their General Practitioner (GP) for specialist opinion without imaging or biopsy being performed.2 However, this optimal pathway often fails to happen, and delays are frequent.3, 4 From experience we knew that delay in referral was common, and we decided to assess the problem objectively and prospectively.

There are many reasons why patients with soft-tissue sarcoma are not diagnosed promptly. The patient may not present to the GP. The GP may not recognise the nature of the condition. If recognised, there may be delays in referral to a hospital specialist, and thereafter for imaging, biopsy, or biopsy reporting. Once soft-tissue sarcoma is suspected or diagnosed, there may be a delay in tertiary referral or access. The cumulative effect of these events may be the significant passage of time from the initial complaint, or inappropriate treatment of the patient, both of which may jeopardise outcome.5

We prospectively evaluated new referrals to our specialist unit to determine the proportion of patients with significant delays in referral, and identify the causes of delay.

Section snippets

Patients, methods, and results

All new National Health Service (NHS) surgical referrals seen in the Soft-Tissue Sarcoma Unit of the Royal Marsden Hospital for the one-year period from April 1st 2003 to March 31st 2004 were considered. The patients were seen here within two weeks of referral, during which time any previous imaging or biopsy was obtained and reviewed. All patients were assessed by one or both of the authors, who are Consultant Surgical Oncologists with a special interest in sarcoma. Details of the chronology

Results

Thirty-one patients were identified with delayed referral during this period (Table 1). This represented 19.5% of the 159 patients seen in our unit with proven STS in the same period. (A total of 216 patients with benign and malignant soft-tissue tumours were evaluated during this time.) There were 12 men and 19 women, with a median age of 59 years (range 34–84 years). The median overall time from presentation to the GP to being seen in our unit was 14 months (range 4–96 months, average 22±4

Discussion

We knew from experience that delays in referral to our Soft-Tissue Sarcoma Unit were common and that there were errors ‘en route’. Others have reported on similar experiences.4, 5, 6 This prospective study was, therefore, undertaken to quantitate the delay and to investigate its components. The results are disturbing. We defined delay in referral as three months or greater from the time of first presentation to a doctor, and some will consider this definition generous. Nevertheless a median

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