Rush Christina L, Lester Ethan G, Manglani Heena, Woodworth Emily, Vitolo Ottavio, Fava Maurizio, Berry James D, Brizzi Kate, Babu Suma, Lindenberger Elizabeth C, Curtis J Randall, Vranceanu Ana-Maria
Center for Health Outcomes and Interdisciplinary Research (CHOIR), Department of Psychiatry, Massachusetts General Hospital (MGH)/Harvard Medical School (HMS), Boston, MA, USA.
Department of Psychiatry, Massachusetts General Hospital (MGH)/Harvard Medical School (HMS), Boston, MA, USA.
Amyotroph Lateral Scler Frontotemporal Degener. 2023 Jun 22:1-8. doi: 10.1080/21678421.2023.2224400.
Amyotrophic lateral sclerosis (ALS) is a neurodegenerative disease characterized by progressive weakness and eventual death, usually within 3-5 years. An ALS diagnosis is associated with substantial emotional distress for both the affected person and their family care-partners which impairs the ability to engage in important conversations about long term care planning, negatively impacts ALS symptoms for the patient, and quality of life for both patient and care-partner. Here we 1) discuss published works identified by the authors about psychosocial interventions for the ALS population, 2) identify a lack of early, dyadic interventions to support psychosocial needs of people with ALS and care-partners; 3) describe the Neurodegenerative Diseases (NDD) framework for early dyadic intervention development and 4) propose an adaptation of an evidence-based early dyadic psychosocial intervention, Recovering Together, for the unique needs of people with ALS and their care-partners (Resilient Together-ALS; RT-ALS) using the NDD framework. Future work will use stakeholder feedback to optimize the intervention for subsequent efficacy testing.
肌萎缩侧索硬化症（ALS）是一种神经退行性疾病，其特征是进行性肌无力，通常在3至5年内最终导致死亡。ALS的诊断给患者及其家庭护理伙伴带来了巨大的情感痛苦，这损害了他们就长期护理计划进行重要对话的能力，对患者的ALS症状产生负面影响，并影响患者和护理伙伴的生活质量。在此，我们：1）讨论作者所确定的已发表的关于针对ALS患者群体的心理社会干预措施的研究；2）指出缺乏早期的、针对患者与护理伙伴双方的干预措施来满足ALS患者及其护理伙伴的心理社会需求；3）描述用于早期针对患者与护理伙伴双方干预措施开发的神经退行性疾病（NDD）框架；4）使用NDD框架，针对ALS患者及其护理伙伴的独特需求，提出对基于证据的早期针对患者与护理伙伴双方的心理社会干预措施“共同康复”进行调整，即“ALS共同复原力”（RT-ALS）。未来的工作将利用利益相关者的反馈来优化该干预措施，以便进行后续的疗效测试。
