Sheffield Institute for Translational Neuroscience, University of Sheffield, Sheffield, United Kingdom.
Department of Basic and Clinical Neuroscience, King's College London, London, United Kingdom.
Amyotroph Lateral Scler Frontotemporal Degener. 2023 Feb;24(1-2):91-99. doi: 10.1080/21678421.2022.2040533. Epub 2022 Feb 22.
The Covid-19 pandemic has impacted healthcare. Our aim was to identify how amyotrophic lateral sclerosis (ALS) care in the UK has been affected by the pandemic by exploring the experiences of people living with ALS (plwALS), healthcare professionals (HCPs) working with plwALS, and ALS care centers. Three surveys were carried out to explore the experiences of plwALS, HCPs and ALS care centers during the pandemic. Quantitative data were analyzed using descriptive and inferential statistics and triangulated with the qualitative data which were analyzed thematically. Responses from 53 plwALS, 73 HCPs and 23 ALS care centers were analyzed. Five main themes were identified: keeping safe, losses, negative emotions, delivering care and alternative care delivery in a pandemic. PlwALS and HCPs felt that care was sub-optimal as a result of the pandemic. Changes to care included longer waiting times and face-to-face appointments being canceled or replaced by virtual consultations. While benefits of virtual consultations were reported, concerns were raised about incomplete clinical assessments and the disruption of provision of testing and interventions. ALS care has changed as a result of the pandemic. Patients have had a lack of face-to-face contact with HCPs and have experienced delays to investigations and treatments. PlwALS and HCPs were concerned about the impact of this change, but the long-term implications remain unclear. We propose recommendations for HCPs caring for plwALS, that will promote continuity of evidenced based care in the context of a pandemic.
Covid-19 大流行对医疗保健产生了影响。我们的目的是通过探索肌萎缩侧索硬化症（ALS）患者（plwALS）、与 plwALS 合作的医疗保健专业人员（HCPs）以及 ALS 护理中心的经验，了解英国的 ALS 护理如何受到大流行的影响。进行了三项调查，以探索大流行期间 plwALS、HCPs 和 ALS 护理中心的经验。使用描述性和推断性统计数据对定量数据进行分析，并与定性数据进行三角剖分，定性数据采用主题分析进行分析。分析了来自 53 名 plwALS、73 名 HCPs 和 23 名 ALS 护理中心的回复。确定了五个主要主题：保持安全、损失、负面情绪、在大流行期间提供护理和替代护理方式。plwALS 和 HCPs 认为大流行导致护理质量下降。护理的变化包括等待时间延长，面对面预约被取消或被虚拟咨询取代。虽然报告了虚拟咨询的好处，但也有人对不完全的临床评估以及测试和干预措施的中断表示担忧。由于大流行，ALS 护理发生了变化。患者与 HCPs 的面对面接触减少，并且在调查和治疗方面都出现了延误。plwALS 和 HCPs 对这种变化的影响表示担忧，但长期影响仍不清楚。我们提出了针对照顾 plwALS 的 HCPs 的建议，这些建议将在大流行背景下促进基于证据的护理的连续性。
