ArticleSupportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer2018
Perceptions of care and patient-reported outcomes in people living with neuroendocrine tumours.
Article in Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer, 2018. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 12 papers, 1 of them a synthesis that pooled it.
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
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Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
12 citing papers in PubMed, 1 synthesis or guideline pooled it, 22 citations in OpenAlex.
- Prevalence of unmet supportive care needs reported by individuals ever diagnosed with cancer in Australia: a systematic review to support service prioritisation.Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer · 2023Pooled it
- A review, evaluation and content mapping study of Australian patient-facing online pancreatobiliary cancer resources.Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer · 2025Review
- Enhancing patient-centered care with AI: a study of responses to neuroendocrine neoplasms queries.Endocrine · 2025Article
- Psychiatric and cognitive function in patients with serotonin producing neuroendocrine tumors.Translational psychiatry · 2025Article
- Navigating care: understanding cancer patients' experiences with systemic radionuclide therapy.Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer · 2025Article
- Review
- Psychological outcomes in patients with rare cancers: a systematic review and meta-analysis.EClinicalMedicine · 2024Article
- The unmet information needs, quality of life, and care experiences of patients with neuroendocrine tumours (NETs) at follow-up: 6 months from diagnosis.Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer · 2023Article
- Health-related quality of life in patients with neuroendocrine neoplasms: a two-wave longitudinal study.Journal of endocrinological investigation · 2022Article
- The psychological impact of COVID-19 pandemic on patients with neuroendocrine tumors: Between resilience and vulnerability.Journal of neuroendocrinology · 2021Article
- The Economic Impact on Australian Patients with Neuroendocrine Tumours.The patient · 2020Article
- Optimal care for systemic sclerosis patients: recommendations from a patient-centered and multidisciplinary mixed-method study and working conference.Clinical rheumatology · 2019Article
Corrections and comments
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Authors and funding
6 authors at 3 institutions in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundNeuroendocrine tumours (NETs) are rare, and when metastatic NETs are incurable, the tumours are frequently slowly 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.
methodsWe 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).
resultsParticipants 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 well-being compared to the general population.
conclusionsNETs are experienced as a chronic illness. In addition to ongoing psychological and physical symptom management, improvements to case history documentation and discussions about coping and finance are recommended.
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