Pagnini Francesco, Phillips Deborah, Haulman Anne, Bankert Matthew, Simmons Zachary, Langer Ellen
Department of Psychology, Università Cattolica del Sacro Cuore, Milan, Italy.
Department of Psychology, Harvard University, Cambridge, MA, USA, and.
Amyotroph Lateral Scler Frontotemporal Degener. 2022 Feb;23(1-2):116-127. doi: 10.1080/21678421.2021.1928707. Epub 2021 May 22.
: Mindfulness-based interventions seem to be effective in promoting QOL of ALS patients and caregivers, but most require substantial time. In the Langerian approach, mindfulness can be easily promoted with mental tasks and short lectures. This study aims to explore the impact of an ALS-specific online Langerian mindfulness training program on QOL of ALS patients. We developed and tested with an Randomized Controlled Trial (RCT) a 5-week active learning mindfulness program. Participants were recruited from the ALS clinic at Penn State Health and online and were randomly assigned to either the mindfulness group or a wait-list control group. The primary outcome was the patient's QOL after the treatment. 3 and 6-month follow-ups, together with anxiety, depression, care burden, and physical function, assessed at all times for both patients and caregivers, were explored as secondary outcomes. 47 ALS patients and 27 caregivers were recruited. Among the ALS patients, the experimental group reported higher levels of QOL at the end of the treatment (d = 0.54). Moreover, they showed lower values of depression, anxiety, and negative emotions, compared to the controls, over time. The caregivers from the mindfulness group reported lower scores of care burden, depression, and anxiety, with higher values of energy and emotional well-being over time. This small RCT provides preliminary evidence that this intervention leads to an increase of QOL and a reduction in psychological comorbidities in ALS patients and caregivers. Given the relatively short time commitment, it may be easily implemented by the ALS community.
基于正念的干预措施似乎对提高肌萎缩侧索硬化症（ALS）患者及其护理人员的生活质量有效，但大多数此类干预措施需要大量时间。在兰格理论方法中，通过心理任务和简短讲座可以轻松促进正念。本研究旨在探讨针对ALS的在线兰格正念训练计划对ALS患者生活质量的影响。我们开发了一个为期5周的主动学习正念计划，并通过随机对照试验（RCT）进行了测试。参与者从宾夕法尼亚州立大学健康中心的ALS诊所及线上招募，并被随机分配到正念组或等待名单对照组。主要结局是治疗后患者的生活质量。将3个月和6个月的随访结果，以及患者和护理人员在所有时间点评估的焦虑、抑郁、护理负担和身体功能作为次要结局进行探索。共招募了47名ALS患者和27名护理人员。在ALS患者中，实验组在治疗结束时报告了更高水平的生活质量（d = 0.54）。此外，随着时间的推移，与对照组相比，他们的抑郁、焦虑和负面情绪值更低。正念组的护理人员报告的护理负担、抑郁和焦虑得分更低，随着时间的推移，精力和情绪幸福感得分更高。这项小型随机对照试验提供了初步证据，表明这种干预措施可提高ALS患者及其护理人员的生活质量，并减少心理合并症。鉴于所需的时间相对较短，ALS社区可能很容易实施该干预措施。
