As part of NCUK’s Advancing Neuroendocrine Cancer Research campaign, in collaboration with UKINETS these Practice-Changing Grants were launched in 2023. These grants aim to find new and practical ways to improve the lives and experiences of people with neuroendocrine cancer (outcomes must be shown within 12 months). These grants are practical in nature, open to any healthcare professional, and must demonstrate a clear benefit for people with neuroendocrine cancer.
Two grants were funded in 2023:
- A Pilot Model of Group Education for nutritional/dietary advice and symptom management in neuroendocrine cancer that will be run at the Royal Hallamshire Hospital, Sheffield
- Evaluation of the impact on quality of life of a NET-specific pathway for patients, utilising the MyMarsden patient app, together with integration with Advanced Nurse Practitioner-led NET clinic which will be run at the Royal Marsden Hospital.
A Pilot Model of Group Education for nutritional/dietary advice in neuroendocrine cancer
For many years group education has been used to empower and educate patients to manage chronic conditions for example in Type 1 Diabetes mellitus. Sheffield Hospital will pilot the concept of group dietary education in patients with neuroendocrine cancer. There is an unmet clinical need and shortage of neuroendocrine cancer-specific dieticians. A novel delivery of a nutritional education programme for neuroendocrine cancer patients by an expert neuroendocrine cancer dietician, specialist nurse, and doctor will be provided. This pilot will be used as a test bed, which if successful would be scalable and could be trialled in other centres.
To determine if the implementation of the NET-specific pathway improves patients’ quality of life and assess levels of patient satisfaction.
Patients with NETs have distinct issues related to the diagnosis that are important to identify and address. Symptoms of NETs can be non-specific and may persist for long periods before being diagnosed. Patients can encounter difficulties in achieving this diagnosis, accessing information, having ongoing support, and gaining access to NET experts. This group of patients often have lifelong follow-up and treatment, requiring indefinite scans, which creates anxiety and requires support.
To improve the care and experience for patients with gastroenteropancreatic NETs under long-term surveillance or treatment with somatostatin analogues at The Royal Marsden, we are setting up Advanced Nurse Practitioner (ANP) led NET clinics. These will be in person or remotely as per the patient’s needs. Patients with NET are discussed in the multidisciplinary team meeting and initially seen in the consultant clinic. Suitable patients will be identified for the ANP-led clinic. In parallel they will be supported to enroll in the new MyMarsden smartphone app, where they will have access to NET-specific patient information, and results of their blood tests and scans, combined with a messaging facility that will enable direct communication with the NET team through the app. This will be facilitated through full integration with the comprehensive electronic patient record. Patients without access to a smartphone will be given written information and access to telephone support from the NET team as needed.
We will evaluate the impact on the quality of life of this NET-specific pathway for patients at The Royal Marsden, utilising the MyMarsden patient app for information and its messaging facility, together with integration with ANP-led NET clinics and if successful this project will be able to be further rolled out.
These programmes will be managed by the awardees, NCUK funding only.
