Implementing a Nurse-Enabled, Shared-Care Model to Address Unmet Needs of People with Neuroendocrine Tumours

This intervention (entitled: AUS-NET-Survivorship) has been developed through a co-design process with end-users (people with neuroendocrine neoplasms (NEN), general practitioners, practice nurses, cancer specialists, and cancer nurses). AUS-NET-Survivorship strategically uses specialist neuroendocrine nurses (SNN) - an existing workforce embedded in the health system - to implement a shared, follow-up care model between acute cancer care centres and general practices for people diagnosed with NEN. SNN's are trained and supported to (1) engage all stakeholders (patients, families, general practitioners, specialists, and allied health) to take an active role in cancer survivorship care in a shared, follow-up care model; (2) ensure timely information exchange and negotiation of shared-responsibilities through multidisciplinary case conferencing (Medical Benefits Schedule MBS - Item 750); and (3) ensure general practitioners and practice nurses have access to a survivorship care plan and a range of evidenced-based tools and resources. The intervention explicitly provides shared-care (interchanging specialist and general practice appointments during follow-up cancer care for people with NEN) and enhanced care (overlaying general practice appointments with specialist appointments during follow-up care), depending on the clinical needs of the people with NEN who are randomised to the intervention. The intervention will comprise of the following key elements: 1. The local AUS-NET nurse led clinic is a 1 x 30-60 minute face-to-face or telehealth SNN consult with the participant scheduled within 10 weeks of diagnosis/enrolment (however given the pragmatic study design, adjustments to this timeline may be made and documented on a site-by-site basis) to: 1) provide treatment summary; 2) provide survivorship patient education including a written survivorship booklet titled "Neuroendocrine tumours: A guide for patients and carers” published by Neuroendocrine Cancer Australia; 3) co-develop a draft Survivorship Care Plan (SCP) including SMART goals (using motivational interviewing and self-efficacy techniques); and 4) provide a draft shared-care follow-up appointment schedule. A draft SCP (including the treatment summary) will be provided to the participant via email or post and their nominated GP via GP clinic preferred communication system. Adherence to the nurse-led clinic and its components will be monitored using a nurse-led clinic checklist. The approximate duration of the care plan would be updated by the intervention participant together with their health care provided e.g., GP, specialist nurse, dependent on their individual needs up to 5 years. A finalised copy will be valid till the intervention participant and their health care provider decides to update it. 2. There will be 1 x 20–30-minute video/telephone case-conference between the GP, the Practice Nurse (if available) and 3) the local SNN and/or the AUS-NET National Nurse Coordinator (NNC) +/- another allied health professional depending on patients’ needs. The case-conference will be scheduled within 4 weeks of the local SNN-led clinic via telephone or video-conferencing as per the general practice’s preference. The purpose of the case-conference is to finalise the SCP and negotiate the GP’s role in facilitating SCP SMART goals as well as seek agreement on the shared-care follow-up appointment schedule. During this, the SCP will be shared with relevant parties, i.e., GP and/or practice nurse. Participants receiving the intervention will also receive a copy for them to pass on to anyone that they deem necessary e.g., allied health professionals they are seeing. Where a multidisciplinary case conferencing cannot be organised, the local SNN/AUS-NET NNC will conduct a telephone handover with the GP +/- Practice Nurse to discuss the patient’s survivorship care plans and relevant care needs. Adherence to the GP case conference and its components will be monitored using a GP case conference checklist. 3. GP and Specialist Follow-Up Schedules: AUS-NET Survivorship provides GPs and specialists with guidance on the standardised, minimal follow-up schedule for up to 12 months. Specialist visits can be conducted by the patient’s primary cancer physician as determined by the site. Each GP and Specialist follow-up visit will be guided by session plans which includes guidance on: taking personal histories; enquiring about persistent symptoms requiring investigations; physical examination schedule; avoiding clinical procedures (e.g., scans and blood tests) that may not be indicated; toxicities of cancer treatment; promotion of healthy lifestyle; and appropriate referrals to nursing and allied health services. The overall duration of the study is 5 years.