International Care Of the Dying Evaluation (CODE): Quality of Care for Cancer Patients as Perceived by Bereaved Relatives
试验速览
- 阶段
- 不适用
- 状态
- 已完成
- 入组人数
- 914
- 试验地点
- 22
- 主要终点
- CODE (Care Of the Dying Evaluation) Questionnaire Item 30 Score for Relatives' Perception of How Much of the Time the Deceased Patient Was Treated With Dignity and Respect, by Nurses, and by Doctors
研究概览
简要总结
Providing high quality care for dying patients and their families is very important. One way one can assess the care provided is to ask bereaved relatives to complete a questionnaire after their family member has died. The questionnaire can ask about their experiences and their thoughts about the care provided to their family member.
One such questionnaire is the 'Care Of the Dying Evaluation' (or CODE). CODE has been developed with the help and support of bereaved relatives and has been used extensively within the United Kingdom. In this project the investigators want to use the CODE questionnaire to look at bereaved relatives' views about care provided in seven different countries within Europe and Latin America. In the first part of the project CODE was translated into the main language of each country. Volunteers and bereaved relatives in each country were asked to give feedback about whether CODE was easy to understand, sensitive, and easy to complete. Based on the feedback a common version of CODE that is suitable for use across all the countries was developed.
In the next phase of the project, relatives who have recently experienced a bereavement where one of their family members has died from cancer in a hospital, will be invited to complete the CODE questionnaire about two months after the patient's death. The relatives may complete CODE on paper, using a computer, or by interview. The aim is to have 100 completed CODE questionnaires from each of the seven countries. The data from the questionnaires will be used to make a report on the current quality of care for dying cancer patients in hospitals across the seven countries. It will also be possible to compare the care between the countries and identify areas needing improvement.
In the next phase of the project, health care professionals, researchers and bereaved relatives together will use their knowledge and experience to find effective ways to improve the weak areas identified, and assess the results of putting these changes into practice.
详细描述
ABSTRACT
Background: In order to ensure the highest quality of care is provided for dying patients and their families, one needs to first be able to robustly evaluate the current quality of care. One identified method is to assess this from the user-perspective by conducting bereaved relatives' surveys. 'Care Of the Dying Evaluation' (CODE) is a recognised, validated post-bereavement questionnaire which has been extensively used within the United Kingdom. The ERANet-LAC CODE project aims to use CODE in a wider international context. In Work Package 1 of the project, CODE will be translated and pilot tested in volunteers and bereaved relatives in the partner countries. Using a consensus procedure, a final version of the international CODE (i-CODE) questionnaire will be developed.
Aims: The present project (Work Package 2) aims to advance the international evidence in care for dying cancer patients by undertaking an observational study of bereaved relatives' views across seven participating countries. The overall aims of Work Package 2 (WP2) are to:
- Conduct an international survey of bereaved relatives of cancer patients dying in hospitals, using the CODE questionnaire
- Use the CODE data to provide feedback about the quality of care and level of family support at an international and national level, allowing for cross-country comparisons
- Conduct a web survey of all participating institutions to be able to interpret the survey data in the context of information about each organisation and the level of specialist palliative care provision at each site / country
Methods: Bereaved adult relatives, to adult cancer patients who had an 'expected' death in hospital, will be approached face to face, by telephone or in writing and invited to complete the CODE questionnaire. The CODE questionnaire pack will be sent out 6-8 weeks after bereavement. CODE may be completed via self-completion paper questionnaire, via on-line questionnaire, or facilitated via a researcher using a tablet, telephone or face-to-face interview, according to what is feasible and acceptable in each country. The aim is 100 completed questionnaires per country. Basic demographics will be recorded for all potential participants and for the patients who died.
研究设计
- 研究类型
- Observational
- 观察模型
- Case Only
- 时间视角
- Prospective
入排标准
- 年龄范围
- 18 Years 至 —（Adult, Older Adult）
- 性别
- All
- 接受健康志愿者
- 否
入选标准
- •Next-of-kin to a patient who died an 'expected' death from cancer in hospital
- •Has been present at the hospital together with the patient at least some of the time during the patient's last two days. (This might not always be known or recorded, therefore the participant may have the option to pass the questionnaire on to somebody better placed to complete it.)
- •Patient was ≥ 18 years of age at the time of Death
- •Patient had been admitted to the hospital (not any specific ward) at least three calendar days (e.g., admission August 1st, died August 3rd)
- •Able to give written informed consent, which might be implied when the participant completes and returns the questionnaire, in keeping with the ethical stipulations for each country
排除标准
- •Patient had a sudden and unexpected death
- •Unable to complete the questionnaire due to language abilities or reduced cognitive functioning (in some countries the offer of a translator would be provided if someone wanted to complete the questionnaire but had difficulty due to languages)
研究组 & 干预措施
Bereaved relatives
Bereaved relatives after cancer deaths in hospitals
结局指标
主要结局
CODE (Care Of the Dying Evaluation) Questionnaire Item 30 Score for Relatives' Perception of How Much of the Time the Deceased Patient Was Treated With Dignity and Respect, by Nurses, and by Doctors
时间窗: 6-8 weeks post bereavement
CODE (Care Of the Dying Evaluation) questionnaire, item 30: How much of the time was the deceased patient treated with dignity and respect, by nurses, and by doctors. Maximum obtainable score 4, minimum 0. The higher score, the better outcome.
Number of Participants (Relatives) Answering "Yes" to CODE (Care Of the Dying Evaluation) Questionnaire Item 31: Were You Adequately Supported in the Patients' Last Days of Life?
时间窗: 6-8 weeks post bereavement
CODE (Care Of the Dying Evaluation) questionnaire, item 31: Were you adequately supported in the patient's last days of life? Yes/no question. The higher percentage of relatives answering 'yes', the better outcome.
次要结局
未报告次要终点