King's College London, Cicely Saunders Institute, Department of Palliative Care, Policy & Rehabilitation, Bessemer Road, London, SE5 9PJ, UK,
Support Care Cancer. 2013 Oct;21(10):2835-44. doi: 10.1007/s00520-013-1848-x. Epub 2013 Jun 8.
The evaluation of end of life care via bereaved relatives is increasingly common. We aimed to improve the measurement of health outcomes and care utilisation at the end of life with this population.
A cross-sectional study of 20 bereaved relatives of cancer patients was conducted. In phase I, nine underwent a cognitive interview for 65-150 min using five measures: Client Service Receipt Inventory, Life Before Death survey care satisfaction items, Palliative care Outcome Scale (POS), EQ-5D and Core Bereavement Items (CBI). In phase II, items/scales were revised and tested with a further 11 participants. Content analysis explored information processing and errors.
All 20 participants understood most questions despite finding them demanding and intense. Judging the accuracy of information and formulating final answers posed more difficulties than recalling facts. Uncertainty and missing data on care utilisation were often due to estimating averages; consequently categories were introduced. Participants perceived the care satisfaction rating scale to be positively biased; a very poor category was added. POS was seen to ask relevant but sometimes difficult questions, whilst the EQ-5D produced fewer missing data but lacked intermediate categories. CBI had terms that participants felt were unfamiliar, unrealistic, unclear or too strong; hence, we changed to the Texas Revised Inventory of Grief (with no problems identified).
Cognitive interviewing helped select measures and make changes that improved the measurement of health outcomes and care utilisation at the end of life with bereaved relatives. The use of both generic and specific health measures and cost measurement in bereavement is encouraged.
通过死者亲属来评估临终关怀的方法越来越常见。我们旨在通过这种方式提高对这一人群临终时健康结果和护理利用的测量。
对 20 名癌症患者的死者亲属进行了一项横断面研究。在第一阶段，9 名参与者使用 5 种测量工具（客户服务接受清单、生前死亡调查护理满意度项目、姑息治疗结果量表、EQ-5D 和核心丧亲项目）进行了 65-150 分钟的认知访谈。在第二阶段，对另外 11 名参与者进行了修订和测试。内容分析探索了信息处理和错误。
尽管参与者认为这些问题要求高且强度大，但所有 20 名参与者都理解了大部分问题。判断信息的准确性和制定最终答案比回忆事实更具挑战性。护理利用的不确定性和缺失数据通常是由于估计平均值造成的；因此引入了类别。参与者认为护理满意度评分量表存在正向偏差；增加了一个非常差的类别。POS 被认为提出了相关但有时困难的问题，而 EQ-5D 产生的缺失数据较少，但缺乏中间类别。CBI 中的术语让参与者感到陌生、不现实、不清楚或过于强烈；因此，我们将其改为德克萨斯修订版丧亲悲痛量表（没有发现问题）。
认知访谈有助于选择和改进测量工具，提高对死者亲属临终时健康结果和护理利用的测量。鼓励在丧亲之痛中同时使用通用和特定的健康测量工具和成本测量。
