Background/Aims: Neuroendocrine tumours are rare, and optimal management requires a multidisciplinary approach. We report the findings of a survey aimed at describing the impact of treatment at a NET specialist centre on patients’ quality of life (QoL).

Methods: The ANZ cohort of an international online patient survey was analysed for quality of life. Data requested included demographics, time since diagnosis, visits needed for diagnosis and patient experience of care. Findings were compared using Chi-squared tests with significance set at p<0.05.

This was placed into practical context by reviewing the experience of the NET multidisciplinary meeting (MDM) at RNSH, a tertiary hospital with multi-specialty expertise in NETs.

Results: 138 ANZ patients were surveyed. Of those, 43% had visited a NET specialist centre previously and continue to attend at least once a year (average 6.4 times/year, range 1-45). Patients travelled further to attend (median 40km vs 25km). However, these patients were less likely to receive >=2 alternate diagnoses prior to NET diagnosis (27% vs 44%, p=0.043), and required fewer visits overall for this diagnosis (10 vs 17.6 visits, p<0.05). Patients reported better coordination of NET medical providers (59% vs 32%, p=0.018), and were less likely to feel reduced interest in activities (20% vs 38%, p=0.019).

The RNSH NET MDM commenced in April 2014 and 118 patients (median age 60, 48% female; 43 midgut, 40 pancreas, 7 lung, 5 hindgut, 3 foregut and 20 other) have been discussed over 21 meetings. A prospective database been has been established with real-time MDM documentation.

Conclusions: Treatment at a NET specialist centre is associated with earlier diagnosis, increased patient satisfaction and less negative impact on quality of life. Despite the issues of increased travel distance and low rates of referral, patients with NETs should ideally be managed at a NET specialist centre with MDM input.