Department of Psychiatry and Centre for Quality of Life, Netherlands Cancer Institute, Amsterdam, The Netherlands.
Department of Psychosocial Research and Epidemiology, Netherlands Cancer Institute, Amsterdam, The Netherlands.
J Neuroendocrinol. 2021 Mar;33(3):e12956. doi: 10.1111/jne.12956.
Patients with small intestine neuroendocrine tumours (SINETs) face various disease-related symptoms that can affect their social functioning and quality of life. The present study aimed to explore the social consequences of disease-related symptoms in patients with a metastatic SINET and to develop a theory on how these patients experience their disease. Patients were eligible when they were diagnosed with a metastatic SINET between 2009 and 2016 and were younger than 60 years of age during diagnosis, and had a good functional performance status. Semi-structured interviews were conducted between January and June 2018. Data were transcribed and analysed independently by two researchers using grounded theory. Data saturation was reached at 10 interviews and, in total, 12 patients participated. A core component that arose from the interviews was resilience in the face of social consequences of having a metastatic SINET. Prominent physical symptoms were fatigue, diarrhoea and flushes. All of these symptoms were associated with limitations to function in work-related and social activities, as well as feelings of embarrassment and shame. Adaptive strategies, such as careful planning, or focusing on the perspective to live well with a neuroendocrine tumour, helped patients to experience the consequences as less burdensome. Other helpful factors that were identified constituted social support, engaging in meaningful activities and financial stability. Patients with a metastatic SINET experienced social consequences of disease-related symptoms in daily life, although they were able to attenuate the burden of these consequences by using adaptive problem-based, emotion-based and meaning-based coping strategies. Clinicians could explore the perceived consequences and educate patients about adaptive strategies.
患有小肠类癌肿瘤（SINETs）的患者面临着各种与疾病相关的症状，这些症状可能会影响他们的社交功能和生活质量。本研究旨在探讨转移性 SINET 患者疾病相关症状的社会后果，并探讨这些患者如何体验疾病的理论。患者符合以下条件：2009 年至 2016 年间被诊断为转移性 SINET，诊断时年龄小于 60 岁，且功能状态良好。2018 年 1 月至 6 月期间进行了半结构式访谈。两名研究人员独立使用扎根理论对转录和分析数据。在 10 次访谈时达到数据饱和，共 12 名患者参与。访谈中出现的一个核心内容是面对转移性 SINET 的社会后果时的适应力。突出的身体症状包括疲劳、腹泻和潮红。所有这些症状都与工作和社会活动中的功能受限以及尴尬和羞耻感有关。适应性策略，如精心规划，或关注与神经内分泌肿瘤共存的良好生活的观点，有助于患者将这些后果视为负担较小。其他被确定的有益因素包括社会支持、参与有意义的活动和财务稳定。患有转移性 SINET 的患者在日常生活中经历了与疾病相关症状相关的社会后果，但他们能够通过使用适应性问题导向、情绪导向和意义导向的应对策略来减轻这些后果的负担。临床医生可以探讨患者感知到的后果，并教育患者适应性策略。
