Population Health Department, QIMR Berghofer Medical Research Institute, Locked Bag 2000 Royal Brisbane Hospital, Brisbane, QLD, 4029, Australia.
Department of Medical Oncology and Cancer Care Services, Royal Brisbane and Women's Hospital, Brisbane, Australia.
Support Care Cancer. 2018 Sep;26(9):3153-3161. doi: 10.1007/s00520-018-4166-5. Epub 2018 Mar 29.
Neuroendocrine 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.
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).
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 well-being compared to the general population.
NETs 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.
神经内分泌肿瘤（NET）较为罕见，当转移性 NET 无法治愈时，肿瘤通常生长缓慢。患者在获得医疗保健时可能会面临特定于疾病的问题和不同的问题。我们旨在评估对护理协调的看法，确定未满足的需求，并检查这些需求是否因患者是否在一家医院接受专科肿瘤学治疗或在该医院和另一家医院之间共享而有所不同。我们还量化了焦虑、抑郁和与 NET 相关的身体症状。
我们对在皇家布里斯班妇女医院接受治疗的 111 名 NET 患者进行了横断面调查。经证实的调查量表用于测量护理协调（CCCQ）、未满足的需求（SCNS-SF34）、焦虑和抑郁（HADS）以及生活质量和症状（FACT）。
参与者在诊断后 2 个月至 27 年内。CCCQ 中评分最差的项目与卫生专业人员拥有完整的病史、提供有关经济权益的信息以及询问患者及其家属的适应情况有关。共享护理的患者对某些方面的护理满意度明显较低。三分之一的参与者报告称，他们在疲劳方面有中度至高度的未满足的需求，四分之一的参与者在心理上担心癌症扩散、对未来的不确定性以及对亲近的人的担忧。总体而言，30%的参与者有焦虑，20%的参与者有抑郁，与一般人群相比，他们的身体和情绪健康明显较低。
NET 被视为一种慢性疾病。除了持续的心理和身体症状管理外，建议改进病史记录和关于应对和财务的讨论。
