Aim: Conservatively, the incidence of patients diagnosed with NETs annually is 7/100,000, however, the prevalence of patients living with NETs is higher (30-40/100,000) making it the second most common gastrointestinal malignancy after colorectal cancer. Patients are living longer, however, with impaired quality of life. Management of debilitating symptoms such as diarrhoea, fatigue, anxiety, and flushing are complex and heterogenous. With >60% having metastatic disease at diagnosis, transition to community delivery of SSAs, average travel of 300km to NET COEs leading to reliance on GPs, we wanted to evaluate their needs in education, in the diagnosis and ongoing treatment and care of NET patients.
Method: From November 2018 - August 2019, the Unicorn Foundation encouraged NET patients to nominate their treating GP to participate in a 21-question online or paper survey. Questions ranged from diagnosis and initial symptoms, interactions with NET specialists, educational needs and education delivery preferences.
Results: 77 GPs have been nominated, with a return rate of 46%, (35). 72% reported that patients had consulted them prior to diagnosis, however, only 5% suspected a NET. Presenting symptoms included abdominal pain, weight loss, fatigue, diarrhoea, flushing, and nausea. CT and ultrasound were the most common investigations, with colorectal-surgeon and gastroenterologist referral most frequent, followed by medical-oncologist. 84% of GPs stated their patients had been presented to a MDT, with 75% of GPs receiving reports after consultations.
Education needs identified clinical-presentation, medical-management, pathophysiology/epidemiology, hormonal syndromes, somatostatin analogue therapy, symptom management, psychosocial, nutrition and supportive care as rating highly. Delivery preferences included online e-modules/webinars, conference workshops, and face-to-face sessions.
Conclusions: With only 5% of GPs suspecting a NET diagnosis, the results of this vital survey will provide the foundations for much needed education modules, to be made available to GPs. A pilot of this program will begin late 2019.