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Table 1 Example pathway 1 (Male, age 19 years at diagnosis of Ewing’s sarcoma) and explanatory narrative

From: Achieving a timely diagnosis for teenagers and young adults with cancer: the ACE “too young to get cancer?” study

  1. History: Presented to GP with a 6 month history of lumps in the groin and complaining of pain in the lower back for up to 2 years. He had a previous history of recreational drug use. He was found to have inguinal lymphadenopathy and was tender over the lumbosacral spine
  2. Pathway: Blood tests were obtained and an MRI scan was requested and referral made to a local musculoskeletal clinic on Day 2. In the meantime he attended his GP surgery on multiple occasions for pain management. A plain x ray of the hip was obtained after attending the musculoskeletal clinic (day 61) and a non-urgent referral made to the orthopaedic clinic. This did not take place until day 128 when urgent arrangements were made for MRI (which confirmed a large pelvic tumour) and CT chest (which showed metastases). Transfer was requested to a surgical orthopaedic oncology centre where a biopsy was obtained on day 141. Staging investigations and multiple MDT discussions took place, initially because of concern that re biopsy might be required. These involved both institutions and a national MDT. Chemotherapy was commenced on day 170. Throughout this time, he continued to attend his GP surgery for pain management
  3. Intervals:
  4. Total interval (Primary care interval (1st seen to 1st referral) = 6 days
  5. Secondary care interval (1st referral to start of treatment) = 164 days
  6. Diagnostic interval (1st seen to diagnosis (date of biopsy)) = 141 days
  7. Treatment interval (Diagnosis (date of biopsy) to start of treatment) = 29 days
  8. Key points arising in the panel discussion:
  9. 1. Primary care: despite early referral to secondary care, an appointment for the musculoskeletal clinic was not followed up despite continuing attendance for pain control; nor was the early request made for an MRI expedited despite the severity of symptoms. The patient’s previous history of drug abuse may have affected judgement about his analgesic requirement
  10. 2. Secondary care: retrospectively, it was apparent that there had been a failure to recognise an abnormality on the plain x ray obtained at the musculoskeletal clinic and further assessment at an orthopaedic clinic was not prioritised, resulting in a 67 day delay before the patient was seen and appropriate radiology obtained. Despite rapid onward referral to a specialist orthopaedic oncology centre for biopsy, a further 29 days passed from the date of biopsy to the start of chemotherapy. It was felt that staging investigations and MDT discussions should all have been achieved more quickly, particularly as the patient had metastatic disease when the diagnosis was established
  11. “Clinical bottom line” – panel decision: Less than satisfactory