NET Care in Australia; The patient’s perspective of their Neuroendocrine Tumours (NET) and impact of diagnosis — ASN Events
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NET Care in Australia; The patient’s perspective of their Neuroendocrine Tumours (NET) and impact of diagnosis (#374)

John Leyden 1 , Mustafa Khaswraw 2 , Michael Michael 3 , Stephen Clarke 2 , Nick Pavlakis 2 , Timothy J Price 4
  1. The Unicorn Foundation, Mosman, Sydney
  2. Northern Cancer Institute, St Leonards, Sydney
  3. Peter Mac, Melbourne
  4. Queen Elizabeth Hospital, Woodville, SA, Australia

NET is considered a rare condition. The diagnosis is often delayed and the management is complex. Here we report results of a survey of patients with a diagnosis of NET aiming to assess their understanding of their perspective of diagnosis, treatment and the impact on life.

Patients from “The America’s”, Europe, Asia and Oceania were surveyed after approvals for data use was obtained using a 25 minute online survey. Surveys were distributed via patient advocacy groups, social media, website, NET nurse, flyers and word of mouth. Australasian/Oceania data was assessed separately for this analysis. 

Between Feb and May 2014, 138 of the 1928 (7.2%) global patients were from Oceania (97% from Australia and NZ). Primary sites are as follows; 49% GI, 21% pancreas, 9% lung, 9% primary unknown. The average age is 54yrs, 68% female, and 44% are currently employed. The mean time to diagnosis from first symptoms was 46.1 months. 60% of responders reported visiting an average of 6 to 7 medical practitioners prior to NET diagnosis. Alternate diagnosis prior to definitive NET diagnosis were as follows; Irritable bowel syndrome 37%, Gastritis 36%, Anxiety 27%, Inflammatory bowel disease 22%, menopause 16%, asthma 12%, and psychiatric disorder 12%. At diagnosis 54% of patients had metastatic disease. Following diagnosis patients continued to report  the following ongoing symptoms; 50% fatigue, 46% diarrhoea, 43% skin effects (rash, flushing), 43% abdominal pain, 38% anxiety/palpitations. Overall 39% of patients report poor or very poor health. NET patients may not be considered generally as unwell but 80% of those patients not working were unemployed as a direct result of their NET.

NET remains a disease that often has a delayed diagnosis. There is an ongoing need to increase awareness of NET and the patterns of presentation. Despite diagnosis, reported outcomes suggest that a significant number of patients continue to have symptoms that may have a reversible component. Increased funding for NET specialised and coordinated care models should be explored

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