Allsop Matthew J, Birtwistle Jacqueline, Bennett Michael I, Bradshaw Andy, Carder Paul, Evans Catherine J, Foy Robbie, Heavin Ciara, Hibbert Barbara, Martin Pablo Millares, Relton Sam D, Richards Suzanne H, Twiddy Maureen, Sleeman Katherine E
Leeds Institute of Health Sciences, University of Leeds, Leeds, UK.
Cicely Saunders Institute of Palliative Care, Policy & Rehabilitation, King's College London, London, UK.
BMC Med. 2025 May 20;23(1):291. doi: 10.1186/s12916-025-04114-x.
Digital advance care planning (DACP) is increasingly used globally for patients with life-limiting conditions to support real-time documentation and the sharing of preferences for care. There has been low engagement with DACP systems, with patients often having information about their care preferences documented late in their illness trajectory or not at all. To optimise implementation, the Optimal Care research programme sought to understand DACP system use from multiple perspectives to guide their development and evaluation.
Between 2020 and 2023, our mixed-methods research programme sought an understanding of DACP implementation from multiple perspectives, including (i) national online survey of end-of-life care commissioning leads in England; (ii) online survey of community and hospital-based health and care professionals in two geographical regions; (iii) semi-structured interviews with a sample of survey respondents; (iv) focus groups and interviews with patients with life-limiting illness and their carers and (v) regional and national Theory of Change workshops. Findings were organised by five phases of a conceptual model of DACP generated during the programme and further categorised using the Non-adoption, Abandonment, Scale-up, Spread and Sustainability (NASSS) framework.
A total of 788 stakeholders participated. Twenty evidence-based recommendations were distilled from data collected across the research programme to guide the implementation of DACP in routine care. Considerations are provided across the five phases of DACP implementation (system design, recognition of clinical need for DACP, documentation processes, health and care professional engagement with DACP and DACP evaluation). Recommendations prioritise a focus on end-user needs and experiences, alongside highlighting the requisite need for DACP systems to support information exchange across settings involved in the care of people with life-limiting conditions.
As currently designed and implemented, DACP systems may be falling short of their potential and are not working as intended for patients, carers and health and care professionals. The application of the recommendations should ensure consideration of the wider ecosystem in which DACP is being implemented, prioritising end-user experiences. Future research should prioritise developing approaches that target health and care professional DACP system engagement, alongside developing and evaluating patient and carer access to DACP systems.
数字预立医疗计划（DACP）在全球范围内越来越多地用于患有生命受限疾病的患者，以支持实时记录和护理偏好的共享。DACP系统的参与度较低，患者关于其护理偏好的信息往往在疾病轨迹后期才被记录，或者根本没有记录。为了优化实施，最佳护理研究计划试图从多个角度了解DACP系统的使用情况，以指导其开发和评估。
在2020年至2023年期间，我们的混合方法研究计划试图从多个角度了解DACP的实施情况，包括：（i）对英格兰临终关怀委托负责人进行全国在线调查；（ii）对两个地理区域的社区和医院卫生与护理专业人员进行在线调查；（iii）对部分调查受访者进行半结构化访谈；（iv）对患有生命受限疾病的患者及其护理人员进行焦点小组讨论和访谈；以及（v）举办区域和全国性的变革理论研讨会。研究结果按照该计划期间生成的DACP概念模型的五个阶段进行组织，并使用非采用、放弃、扩大规模、传播和可持续性（NASSS）框架进一步分类。
共有788名利益相关者参与。从整个研究计划收集的数据中提炼出20条基于证据的建议，以指导DACP在常规护理中的实施。在DACP实施的五个阶段（系统设计、对DACP临床需求的认识、记录流程、卫生与护理专业人员对DACP的参与以及DACP评估）都提供了相关考虑因素。建议优先关注最终用户的需求和体验，同时强调DACP系统对于支持在患有生命受限疾病患者护理所涉及的不同环境之间进行信息交换的必要性。
按照目前的设计和实施情况，DACP系统可能未充分发挥其潜力，并且对于患者、护理人员以及卫生与护理专业人员而言未达到预期效果。应用这些建议应确保考虑到实施DACP的更广泛生态系统，优先考虑最终用户的体验。未来的研究应优先开发针对卫生与护理专业人员参与DACP系统的方法，同时开发和评估患者及护理人员使用DACP系统的情况。
