As we celebrate the first anniversary of the launch of the Optimal Care Pathway (OCP) for NETs, we reflect on a year of dedicated efforts to enhance patient care, improve health outcomes and increase awareness of the OCP.
Over the past 12 months, NECA has undertaken numerous initiatives, from guiding patients through the OCP via NET Nurse phone calls, to providing links for GPs to view the quick reference guide of the OCP and also providing valuable information at conferences for healthcare professionals.
Our commitment extends to fostering community engagement through NET Patient Forums, and we’ve developed user-friendly web pages for both patients and Healthcare Professionals.
Inclusive of our recent awareness campaign, the OCP has been a focal point in our endeavors to ensure Healthcare Professionals know referral pathways and appropriate investigations. We invite patients and caregivers to click on our website to explore the wealth of resources available and learn more about the world first Optimal Care Pathway for NETs.
In July 2023 (5 months after the OCP launch) NECA worked with an Intern from Radboud University Netherlands , Zoë Teunissen to assess the impact of the OCP launch and to identify strategies to optimise its’ dissemination and effectiveness. This study was completed in December 2023.
Many thanks to the 95 questionnaire respondents who took part in this study.
Some key take outs are:-
With this group of respondents, with patients diagnosed post 2021, their length of time to diagnosis had decreased by around 50%, highlighting the benefits of increased NET awareness. Whilst we still have a long way to go, this is a step in the right direction.
73% of patients were still unaware of the OCP, whilst 35% of patients felt that their HCP was also unaware of the OCP. It’s important to note that OCPs are (across the board) relatively new, and we can see we still have much work to do in promoting this to patients and HCPs.
95 Patients have sought supportive care from 215 Healthcare Professionals, creating an even stronger case for the need for specialist NET Nurses in each state of Australia. 52% patients sought support from GPs, followed closely by NECAs NET Nurse (47%). 35% sought support from a dietician and 18.9% a psychologist.
A great summary of the need for all HCPs and NET patients to be made aware of the OCP is a comment from one patient who noted: ‘So if I had breast cancer or cervical cancer, everyone would just know about it straight away and they would go, this is where you go, this is what you do. But with this it’s not like that at all.’
It is, therefore, crucial to ensure that communicative strategies are used to educate patients and healthcare professionals about the OCP, to maximise the best outcomes for NET patients.
Patients indicated that they want their healthcare professionals to supply them with the OCP at diagnosis.
Respondents responses on how the OCP is useful for them
