Background: Neuroendocrine tumours (NETs) are rare and when metastatic are incurable but slow growing. Patients may be confronted with disease-specific problems and distinct issues when accessing health-care. We aimed to assess perceptions of care coordination, identify unmet needs and examine if these varied by whether patients received specialist oncology care in a single hospital or shared between that and another hospital. We also quantified anxiety, depression and NET-related physical symptoms.
Methods: We conducted a cross-sectional survey of 111 NET patients managed at Royal Brisbane and Women’s Hospital. Validated surveys measured care coordination (CCCQ), unmet needs (SCNS-SF34), anxiety and depression (HADS), and quality of life and symptoms (FACT).
Results: Participants were between 2 months and 27 years after diagnosis. The worst-ranked items on the CCCQ related to health professionals having a full case history, providing information about financial entitlements and asking about how well patients and their families were coping. People with shared care were significantly less satisfied with some aspects of care. One-in-three participants reported a moderate-to-high unmet need for help with fatigue and one-in-four with psychological concerns about their cancer spreading, uncertainty about their future and about the worries of those close to them. Overall, 30% of participants had anxiety and 20% had depression and they had significantly lower physical and emotional wellbeing compared to the general population.
Conclusions: NETs are experienced as a chronic illness. In addition to ongoing psychological and physical symptoms management, improvements to case history documentation and discussions about coping and finance are recommended.