Birtwistle Jacqueline, Williamson Gabriella, Relton Samuel D, Bradshaw Andy, Sleeman Katherine E, Twiddy Maureen, Millares-Martin Pablo, Richards Suzanne, Allsop Matthew J
Leeds Institute of Health Sciences, University of Leeds, Leeds, UK.
Cicely Saunders Institute of Palliative Care, Policy & Rehabilitation, King's College London, London, UK.
Health Soc Care Deliv Res. 2025 Jun 25:1-22. doi: 10.3310/XCGE3294.
Numerous digital approaches are being explored internationally to support the elicitation, documentation and sharing of advance care planning information. In England, Electronic Palliative Care Coordination Systems have been developed for this purpose, often as a template stored as part of an electronic clinical record system. Despite Electronic Palliative Care Coordination Systems being central to the end-of-life care policy, there has been a lack of exploration of the perspectives of healthcare professionals who use Electronic Palliative Care Coordination Systems and are critical to their implementation.
This study addresses this gap aiming to examine community and hospital-based healthcare professionals' perceptions of Electronic Palliative Care Coordination Systems on advance care planning and the delivery of palliative care.
A cross-sectional online survey.
The target sample comprised health professionals from the main professional groups supporting patients with chronic progressive illnesses in West Yorkshire and London. The survey included items adapted from the Normalisation MeAsure Development questionnaire implementation measure. Survey responses were analysed using descriptive statistics and latent class analysis. Free-text responses relating to alternative approaches to advance care planning documentation were analysed using a directed content analysis approach.
Five hundred and sixty-nine health professionals responded to the survey from West Yorkshire ( = 189; 33.2%) and London ( = 380; 66.8%). The largest proportion of respondents came from general practice teams ( = 254; 44.6%). There were prominent differences in responses, with respondents in London more likely to report being familiar with Electronic Palliative Care Coordination Systems. However, West Yorkshire respondents rated Electronic Palliative Care Coordination Systems more highly in terms of being a legitimate part of their role. Across professional groups, respondents from both hospice and care home teams were more likely to view Electronic Palliative Care Coordination Systems as being worthwhile. Commonly reported barriers to the use of Electronic Palliative Care Coordination Systems included not having access to electronic devices, lack of training and lack of knowledge relating to advance care plans.
There was a dominance of responses from participants based on primary care practices, which may reflect general practitioners being largely responsible for initiating an Electronic Palliative Care Coordination Systems record in one region of the survey (West Yorkshire). This survey is reliant on self-reported responses to items and may have also included respondents more engaged with or interested in Electronic Palliative Care Coordination Systems, representing a skewed positive perspective of the systems and how they are being used in practice.
Variation exists in the way in which Electronic Palliative Care Coordination Systems are perceived and used across both geographical regions surveyed and the professional groups involved in palliative care delivery. There continue to be challenges experienced by those using Electronic Palliative Care Coordination Systems, including not having access to electronic devices, lack of training and lack of knowledge relating to advance care plans.
Future research to identify the preferences of health professionals and patients as potential users of Electronic Palliative Care Coordination Systems could guide the development of ergonomic systems that account for the multiple challenges (i.e. physical, cognitive and organisational aspects) involved in their implementation.
This article presents independent research funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme as award number NIHR129171.
国际上正在探索多种数字方法,以支持生前预嘱信息的获取、记录和共享。在英国,为此开发了电子姑息治疗协调系统,通常作为存储在电子临床记录系统中的模板。尽管电子姑息治疗协调系统是临终关怀政策的核心,但对于使用该系统且对其实施至关重要的医疗保健专业人员的观点,却缺乏相关探讨。
本研究旨在填补这一空白,旨在考察社区和医院的医疗保健专业人员对电子姑息治疗协调系统在生前预嘱和姑息治疗提供方面的看法。
横断面在线调查。
目标样本包括来自西约克郡和伦敦支持慢性进行性疾病患者的主要专业群体的卫生专业人员。该调查包括改编自“正常化测量发展问卷”实施测量的项目。使用描述性统计和潜在类别分析对调查回复进行分析。使用定向内容分析方法分析与生前预嘱文件替代方法相关的自由文本回复。
来自西约克郡(n = 189;33.2%)和伦敦(n = 380;66.8%)的569名卫生专业人员回复了调查。最大比例的受访者来自全科医疗团队(n = 254;44.6%)。回复存在显著差异,伦敦的受访者更有可能报告熟悉电子姑息治疗协调系统。然而,西约克郡的受访者在将其视为自身角色的合理组成部分方面对电子姑息治疗协调系统评价更高。在各个专业群体中,临终关怀和养老院团队的受访者更有可能认为电子姑息治疗协调系统是值得的。报告的使用电子姑息治疗协调系统的常见障碍包括无法使用电子设备、缺乏培训以及对生前预嘱缺乏了解。
基于初级保健实践的参与者回复占主导,这可能反映出在调查的一个地区(西约克郡),全科医生在很大程度上负责启动电子姑息治疗协调系统记录。该调查依赖于对项目的自我报告回复,可能还包括了更多参与或对电子姑息治疗协调系统感兴趣的受访者,这代表了对该系统及其在实践中使用方式的一种有偏差的积极看法。
在所调查的地理区域和参与姑息治疗提供的专业群体中,对电子姑息治疗协调系统 的认知和使用方式存在差异。使用电子姑息治疗协调系统的人员仍然面临挑战,包括无法使用电子设备、缺乏培训以及对生前预嘱缺乏了解。
未来的研究若能确定作为电子姑息治疗协调系统潜在用户的卫生专业人员和患者的偏好,可为符合人体工程学的系统开发提供指导,该系统要考虑到其实施过程中涉及的多重挑战(即身体、认知和组织方面)。
本文展示了由英国国家健康与照护研究中心(NIHR)健康与社会照护交付研究项目资助的独立研究,资助编号为NIHR129171。