Institute of Psychiatry, Psychology and Neuroscience, King's College London, 16 De Crespigny Park, London, SE5 8AB, UK.
The Royal Marsden, Fulham Road, London, SW3 6JJ, UK.
BMC Palliat Care. 2024 Feb 26;23(1):56. doi: 10.1186/s12904-024-01381-y.
People living with severe mental illness (SMI) face significant health inequalities, including in palliative care. Advance Care Planning (ACP) is widely recommended by palliative care experts and could reduce inequalities. However, implementing ACP with this group is challenging. Electronic Palliative Care Coordination Systems such as Coordinate my Care (CMC) have been introduced to support documentation and sharing of ACP records with relevant healthcare providers. This study explores the use of CMC amongst those with SMI and aims to describe how those with a primary diagnosis of SMI who have used CMC for ACP, and makes recommendations for future research and policy.
A retrospective observational cohort analysis was completed of CMC records created 01/01/2010-31/09/2021 where the service user had a primary diagnosis of SMI, with no exclusions based on comorbidities. Descriptive statistics were used to report on characteristics including: age, diagnosis, individual prognosis and resuscitation status. Thematic analysis was used to report on the content of patients' statements of preference.
1826 records were identified. Of this sample most (60.1%) had capacity to make treatment decisions, 47.8% were aged under 70, 86.7% were given a prognosis of 'years' and most (63.1%) remained for full cardio-pulmonary resuscitation in the event of cardio-pulmonary arrest. Records with completed statements of preferences (20.3%) contained information about preferences for physical and mental health treatment care as well as information about patient presentation and capacity, although most were brief and lacked expression of patient voice.
Compared to usual CMC users, the cohort of interest are relatively able, younger people using CMC to make long-term plans for active physical and mental health treatment. ADM is a service user-driven process, and so it was expected that authentic patient voice would be expressed within statements of preference, however this was mostly not achieved.
This digital tool is being used by people with SMI but to plan for more than palliative care. This cohort and supporting professionals have used CMC to plan for longer term physical and mental healthcare. Future research and policy should focus on development of tailored digital tools for people with SMI to plan for palliative, physical and mental healthcare and support expression of patient voice.
患有严重精神疾病（SMI）的人面临着显著的健康不平等，包括在姑息治疗方面。姑息治疗专家广泛推荐预先医疗指示（ACP），这可以减少不平等。然而，在这一人群中实施 ACP 具有挑战性。电子姑息治疗协调系统，如 Coordinate my Care（CMC），已被引入以支持记录和与相关医疗保健提供者共享 ACP 记录。本研究探讨了 CMC 在 SMI 患者中的使用情况，并旨在描述那些使用 CMC 进行 ACP 的 SMI 主要诊断患者，并为未来的研究和政策提出建议。
对 2010 年 1 月 1 日至 2021 年 9 月 31 日期间创建的 CMC 记录进行了回顾性观察队列分析，其中服务使用者的主要诊断为 SMI，没有基于合并症的排除。使用描述性统计方法报告特征，包括：年龄、诊断、个体预后和复苏状态。使用主题分析报告患者偏好声明的内容。
确定了 1826 份记录。在这个样本中，大多数（60.1%）有能力做出治疗决策，47.8%的年龄在 70 岁以下，86.7%的预后为“数年”，大多数（63.1%）在心肺骤停时仍进行心肺复苏。有完成偏好声明的记录（20.3%）包含关于身体和心理健康治疗护理偏好的信息，以及关于患者表现和能力的信息，尽管大多数都很简短，缺乏患者声音的表达。
与通常的 CMC 用户相比，感兴趣的队列是相对有能力、年轻的人，他们使用 CMC 制定积极的身体和心理健康治疗计划。ADM 是一个服务使用者驱动的过程，因此预期在偏好声明中会表达真实的患者声音，但这在大多数情况下都没有实现。
SMI 患者正在使用这种数字工具，但不仅用于姑息治疗。这一队列和支持专业人员使用 CMC 来规划更长期的身体和心理健康护理。未来的研究和政策应侧重于为 SMI 患者开发定制的数字工具，以规划姑息治疗、身体和心理健康护理，并支持患者声音的表达。
