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Demystifying Neuroendocrine Cancer for patients and nurses By Cristelle Gilmour
Nurses often find themselves in a unique position, with the ability to see both the perspective of the patient and that of healthcare practitioners. Within this space, nurses become increasingly aware of areas of need, care gaps, and opportunities to improve. It is from here, creativity and innovation in practice can arise. This is precisely the position Neuroendocrine Tumour (NET) nurses at NeuroEndocrine Cancer Australia (NECA) found themselves. It was evident there were significant knowledge gaps in daily practice when speaking with patients, other healthcare professionals and published research.1 A challenging reality has led to the creation of valuable resources. Even though NET’s are the 7TH most common cancer in Australia, resources are scarce, however the NECA team are changing this.2 Acknowledging NETs are somewhat of a mystery to people who receive a NET diagnosis and for many healthcare practitioners involved in their care, has motivated NECAs NET nurses to initiate the development and inception of two programs. For NET patients the team created “Living with NETs”, an online education program, and for nurses looking to extend their knowledge, they are delivering “How to identify neuroendocrine cancer when it’s not part of your typical line up”, online, on demand education modules.3 Both programs aim to build on the existing NECA resources for patients and healthcare professionals (HCP).4
It was evident there were significant knowledge gaps in daily practice when speaking with patients, other healthcare professionals and published research.1
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Jul–Sep 2023 Volume 28, No. 1
NETs originate from cells of the neuroendocrine system, subsequently they can occur almost anywhere in the body. NET primary sites include gastrointestinal, pancreatic and lung, resulting in numerous non-specific and vague symptoms.5,6 This symptom presentation is often cited as to why NETs are commonly missed or are a delayed diagnosis.1,5,6 Treatment and management are also renowned for being extremely challenging and complex.1,6 Frequently NET symptoms are initially attributed to more common health issues such as irritable bowel syndrome, asthma or menopause and the road to a definitive diagnosis can be long and arduous.6 The aim of both educational programs is to demystify NETs and increase knowledge of this complex illness in both the patient and nursing population. Living with NETs is an online interactive patient education program accessible Australia wide. Developed in collaboration with Cancer Council Victoria, the program content explains medical information, unpacks complex treatment options, and provides strategies for symptom management. Facilitated by NET nurses with the support of trained volunteer facilitators who are NET patients, the program comprises of four 2-hour sessions over four weeks. Patients can self-refer, or HCP can recommend the program. Topics include; What are NETs, Treatment for NETs, Navigating the Health Care System, Carcinoid Syndrome and Carcinoid Crisis, Nutrition, Exercise, Fatigue Management and Wellbeing. Content is delivered by Specialist NET nurses, NET patient facilitators, a NET specialist dietitian and an exercise physiologist. The program aims to empower people living with NETs with knowledge so they can understand NETs, live well through ongoing symptoms and treatment, and confidently self-advocate within the healthcare system. With the NET patients citing a lack of knowledge by HCP about NETs, and the
incidence of NETs rising each year, it is evident the knowledge of HCPs requires enhancing.1,2,5 NET knowledge is essential for many oncology nurses however the demand does not cease there. Some examples of other specialties where nurses require NET knowledge are; general practice and community nurses who are administering treatment, nuclear medicine nurses involved in imaging and treatment, perioperative and surgical nurses managing pre and post operative care along with the anaesthetic risk of carcinoid crisis.5 While not all nurses specialise in NETs, all nurses should be able to turn to accessible educational resources to inform their practice. Identifying this resource gap resulted in the NECA team developing and launching “How to identify neuroendocrine cancer when it’s not part of your typical line up”.3 NECA collaborated with Arterial Education to create a free online on demand short