Netherlands Comprehensive Cancer Organisation (IKNL), Utrecht, the Netherlands.
Center of Expertise in Palliative Care, Leiden University Medical Center, Leiden, the Netherlands.
PLoS One. 2022 Mar 23;17(3):e0265726. doi: 10.1371/journal.pone.0265726. eCollection 2022.
In a predominantly biomedical healthcare model focused on cure, providing optimal, person-centred palliative care is challenging. The general public, patients, and healthcare professionals are often unaware of palliative care's benefits. Poor interdisciplinary teamwork and limited communication combined with a lack of early identification of patients with palliative care needs contribute to sub-optimal palliative care provision. We aimed to develop a national quality framework to improve availability and access to high-quality palliative care in a mixed generalist-specialist palliative care model. We hypothesised that a whole-sector approach and a modified Delphi technique would be suitable to reach this aim. Analogous to the international AGREE guideline criteria and employing a whole-sector approach, an expert panel comprising mandated representatives for patients and their families, various healthcare associations, and health insurers answered the main question: 'What are the elements defining high-quality palliative care in the Netherlands?'. For constructing the quality framework, a bottleneck analysis of palliative care provision and a literature review were conducted. Six core documents were used in a modified Delphi technique to build the framework with the expert panel, while stakeholder organisations were involved and informed in round-table discussions. In the entire process, preparing and building relationships took one year and surveying, convening, discussing content, consulting peers, and obtaining final consent from all stakeholders took 18 months. A quality framework, including a glossary of terms, endorsed by organisations representing patients and their families, general practitioners, elderly care physicians, medical specialists, nurses, social workers, psychologists, spiritual caregivers, and health insurers was developed and annexed with a summary for patients and families. We successfully developed a national consensus-based patient-centred quality framework for high-quality palliative care in a mixed generalist-specialist palliative care model. A whole-sector approach and a modified Delphi technique are feasible structures to achieve this aim. The process we reported may guide other countries in their initiatives to enhance palliative care.
在以治愈为主要目标的生物医学医疗模式下，提供最佳的以患者为中心的姑息治疗具有挑战性。普通公众、患者和医疗保健专业人员通常不知道姑息治疗的好处。跨学科团队合作不佳和沟通有限，加上对有姑息治疗需求的患者早期识别不足，导致姑息治疗的提供不理想。我们旨在制定一个国家质量框架，以在混合的通科医生-专科医生姑息治疗模式下提高高质量姑息治疗的可及性和可获得性。我们假设，采用全部门方法和修改后的德尔菲技术将有助于实现这一目标。类似于国际 AGREE 指南标准，并采用全部门方法，一个由患者及其家属的授权代表、各种医疗保健协会和健康保险公司的专家组成的专家小组回答了主要问题：“荷兰高质量姑息治疗的要素是什么？”。为了构建质量框架，对姑息治疗提供情况进行了瓶颈分析，并进行了文献回顾。在修改后的德尔菲技术中，使用了 6 份核心文件，由专家小组构建框架，同时让利益相关者组织参与并在圆桌讨论中提供信息。在整个过程中，准备和建立关系需要一年时间，而调查、召集、讨论内容、咨询同行以及获得所有利益相关者的最终同意则需要 18 个月。一个包括术语词汇表的质量框架，由代表患者及其家属、全科医生、老年病医生、医学专家、护士、社会工作者、心理学家、精神护理人员和健康保险公司的组织认可，并附有患者和家属的摘要。我们成功地制定了一个基于共识的以患者为中心的国家质量框架，用于混合的通科医生-专科医生姑息治疗模式下的高质量姑息治疗。全部门方法和修改后的德尔菲技术是实现这一目标的可行结构。我们报告的过程可以为其他国家加强姑息治疗的举措提供指导。
