The last three months of life of Italian cancer patients. Methods, sample characteristics and response rate of the Italian Survey of the Dying of Cancer (ISDOC)
The last three months of life of Italian cancer patients. Methods, sample characteristics and response rate of the Italian Survey of the Dying of Cancer (ISDOC)
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DOI：
10.1191/0269216305pm1086oa
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发表时间：
2005-12-01
影响因子：
4.4
通讯作者：
Merlo, F
中科院分区：
文献类型：
--
作者：
Costantini, M;Beccaro, M;Merlo, F
研究目的：意大利癌症死亡调查（ISDOC）是为了评估意大利人在生命的最后三个月内在所有护理环境中死于癌症的经历而进行的。研究设计：采用两阶段概率样本来估计约16万意大利癌症死亡患者的临终结局。在第一阶段，30个197个意大利地方卫生区（LHD）分层后随机选择。在第二阶段，从每个LHD中随机抽取固定比例的癌症死亡病例，并确定2000份死于癌症的患者死亡证明。非专业的照顾者进行了识别和采访，使用半结构化的问卷来自非正式照顾者的意见-服务评价（VOICES）。结果：成功识别了95%的样本（n = 1900）的护理人员。照顾者是孩子（42.7%）、配偶（36.5%）、其他家庭成员（17.3%）或朋友（1.5%）。只有3%的样本没有非专业的支持。在死亡后234天的中位数时间（范围：103 - 374），对1289例（64.5%）样本进行了访谈。较高的应答率与家庭死亡（67.7%）和高等教育（>70%）有关。相反，当照顾者是配偶时，观察到较低的应答率（56.2%）。回复率从患者死亡后四到六个月发出的信件的约80%到八个月或更长时间后发出的信件的约60%不等。拒绝的描述性分析，根据电话记录，允许分类的61%的拒绝至少有一个两个方面的检查：照顾者的心理痛苦和病人接受的护理质量。心理痛苦存在于99%的拒绝检查这方面（48%）。相反，63%（23%）的拒绝者报告了这方面的护理质量差。结论：ISDOC调查提供了意大利癌症患者生命最后三个月相关需求和问题的代表性图片。
Study objective: The Italian Survey of the Dying of Cancer (ISDOC) was undertaken to evaluate the experiences of Italian people dying from cancer during their last three months of life in all settings of care. Study design: A two-stage probability sample was used to estimate end-of-life outcomes of about 160 000 Italian cancer deaths. In the first stage, 30 of the 197 Italian Local Health Districts (LHD) were randomly selected after stratification. In the second stage, a fixed proportion of cancer deaths was randomly drawn from each LHD, and 2000 death certificates of patients who died of cancer were identified. The nonprofessional caregivers were identified and interviewed using a semi-structured questionnaire derived from the Views of Informal Carers - Evaluation of Services (VOICES). Results: Caregivers were successfully identified for 95% of the sample (n = 1900). The caregiver was the child (42.7%), the spouse (36.5%), another family member (17.3%), or a friend (1.5%). Only 3% of the sample had no non-professional support. An interview was obtained for 1289 (64.5%) of the sample, at a median time of 234 days after death ( range: 103 - 374). Higher response rates were associated with home death (67.7%) and with a higher education (>70%). Conversely, a lower response rate was observed when the caregiver was the spouse (56.2%). Response rates ranged from about 80% for letters sent four to six months after the patients' death to about 60% for letters sent after eight months or more. A descriptive analysis of refusals, based on the transcripts of the telephone calls, allowed classification of 61% of refusals for at least one of the two dimensions examined: caregiver psychological suffering and quality of care received by the patient. Psychological suffering was present in 99% of refusals examined for this dimension (48%). Conversely, a poor quality of care was reported by 63% of the refusals examined for this dimension (23%). Conclusion: The ISDOC survey provides a representative picture of the needs and problems associated with the last three months of life of Italian cancer patients.