Endocrine Abstracts

Background: Merkel cell carcinoma (MCC) is a neuroendocrine tumour of the skin. It is a rare, highly aggressive cancer with a high propensity for recurrence and an increasing incidence rate. Feedback from patients and clinicians suggests there is very little accessible MCC specific patient information and support available. To improve patient access to accurate and reliable information and support, the NET Patient Foundation are developing existing services to provide MCC specific information and nurse support.

Aim: To establish MCC patients current sources of support and information and identify gaps in provision and patient preferences.

Method: This was an international survey, data was collected from March 2018 – May 2018. Questionnaires were available online and through MCC clinicians.

Results: Thirty patients responded. Written information: Just over a third of respondents had received written information specifically addressing MCC (36%). CNS support: Two thirds of respondents (67%) didn’t have access to, or didn’t know, if they had a specialist nurse.

Community support: Only 8 respondents had been signposted to support outside the hospital setting.

Support preferences: Eighteen respondents answered this question. The most popular forms of support were email (15 respondents would or might use), online forum (14 respondents would or might use) and support groups (14 respondents would or might use). Least popular was a cancer centre (11 respondents would or might use).

Travel distance: A quarter of respondents were travelling 25 – 50 miles to hospital appointments.

Discussion: The small number of patients receiving written information and with access to a specialist nurse reflects the need to provide more information and support dedicated to MCC. This supports informal feedback from clinicians who report having nowhere to direct patients to for more information and support outside their consultations. There is a dearth of published evidence about MCC patient’s information and support needs. These survey results have been used in conjunction with other sources of anecdotal evidence to develop NET Patient Foundation MCC services including a patient information leaflet (available in print and online) and webpage, with further online support services planned.