神经内分泌肿瘤患者的照顾者负担及相关因素调查

Caregivers＇ burden of patients with neuroendocrine tumors and related factors

目的相对大样本地调查神经内分泌肿瘤这一极其罕见疾病患者的照顾者负担并探索可能的相关因素。方法对2016年1-10月入住的神经内分泌肿瘤患者的主要照顾者进行面对面访谈，应用照顾者负担量表（ZBI）调查照顾者负担并探索可能的相关因素。结果共185名主要照顾者参与调查，照顾者ZBI得分为（35．41±11．67）分，处于中等水平。其中仅有13．5％（25／185）的照顾者无负担，中度负担者最多占52．4％（97／185），另有34．1％（63／185）的照顾者承担着重度负担。多元线性回归结果显示照顾者负担的相关因素为：照顾者年龄、性别、文化程度、平均照顾时间，患者患病时间，以及家庭人均月收入（P〈0．05）。结论近90％的神经内分泌肿瘤患者的照顾者承担着不同程度的负担，多数处于中度负担水平，且高龄者，女性，高文化程度者，照顾时间长，患者患病时间长，低家庭收入者负担更重，更应引起重视，需要临床中给予更多的教育和支持，引导其采取积极有效的应对方式，以减轻身心负担，提高照顾者以及患者的生命质量。

Objective To investigate burden on caregivers of patients with neuroendocrine tumors and to explore possibly related factors in a relative big sample. Methods A face-to-face interview was conducted with major caregivers of neuroendocrine tumors patients admitted to January 2016 to October 2016, applying the Zarit Caregiver Burden Interview （ZBI） scale to investigate the burdens and to explore possibly related factors. Results A total of 185 major caregivers participated. ZBI score was （35.41 ＋ 11.67） points, and there were only 13.5%（25/185） caregivers had no burden. Most （52.4%, 97/185） were under moderate burden, and over 34.1% （63/t85） were bearing severe burden. The multi-element linear regression results showed that related factors included the age, gender, education background, duration of care giving, the lasting period of the patients＇ disease, and the family＇s monthly income （P〈0.05）. Conclusions Nearly 90% caregivers of patients with neuroendocrine tumors were under burdens, mostly on a moderate level. In addition, the burdens were even higher when the caregivers were elder, female and highly educated, longer care duration, loner disease duration and lower family income, to which special attention should be paid, and more education and support should be provided clinically.