Rush Christina L, Lyons Chris, Gittle Jenna, Seward Morgan, Scalia Jennifer, Ho Doreen, Babu Suma, Garret Mark A, Brizzi Kate, Berry James D, Fava Maurizio, Lindenberger Elizabeth, Vranceanu Ana-Maria
Center for Health Outcomes and Interdisciplinary Research (C.L.R., C.L., J.G., M.S., A.M.V.), Massachusetts General Hospital/Harvard Medical School, Boston, Massachusetts, USA.
Center for Health Outcomes and Interdisciplinary Research (C.L.R., C.L., J.G., M.S., A.M.V.), Massachusetts General Hospital/Harvard Medical School, Boston, Massachusetts, USA.
J Pain Symptom Manage. 2025 Mar;69(3):236-242.e4. doi: 10.1016/j.jpainsymman.2024.12.010. Epub 2024 Dec 18.
A diagnosis of ALS can be challenging, and many people find ways to adapt. At the same time, emotional distress can arise early after an ALS diagnosis even when high quality multidisciplinary care is provided. When emotional distress occurs, it can become chronic over time, and can affect both the person living with ALS and their care-partner (together called a dyad).
We set out to understand ALS multidisciplinary clinicians' perception of the challenges experienced by people with ALS and care-partners who experience emotional distress after diagnosis and potential benefits of a coping skills program to help these patients and their care-partners, Resilient Together-ALS (RT-ALS).
We conducted semi-structured focus groups and individual interviews with 17 clinicians at the Sean M. Healey & AMG Center for ALS at MGH (N = 2 focus groups and five interviews) to elicit feedback on four domains: 1) Psychosocial Needs of ALS Dyads seen in the clinic; 2) Clinic Flow and Referral System to RT-ALS; 3) Clinic Partnership Approach in Support of RT-ALS; 4) RT-ALS Program Content and Manual Format. We conducted rapid data analyses for a time-efficient hybrid inductive-deductive thematic approach.
Clinicians noted that dyadic distress (distress experienced by both patient and their care-partner individually and as a unit), though not universal, is often present early after diagnosis. The response to the proposed program content (dyadic and individual coping skills) and structure (6 weekly virtual sessions delivered within about 2 months after diagnosis) was positive. Multidisciplinary clinicians emphasized the importance of a skills-based program for dyads experiencing elevated early emotional distress for which referral can be easily integrated within clinic flow so as not to not increase provider and dyad burden.
RT-ALS program content and structure is acceptable to clinicians. It is imperative to next seek further input from dyads about whether this type of program would be of interest and if yes, to pilot and refine the program for feasibility testing and then efficacy.
肌萎缩侧索硬化症（ALS）的诊断颇具挑战性，许多患者会寻找适应方法。与此同时，即便提供了高质量的多学科护理，在ALS确诊后早期仍可能出现情绪困扰。当出现情绪困扰时，随着时间推移可能会发展为慢性问题，并且会影响ALS患者及其护理伙伴（二者统称为二元组）。
我们旨在了解ALS多学科临床医生对于ALS患者及其护理伙伴在确诊后经历情绪困扰所面临挑战的看法，以及应对技能项目“共同坚韧-ALS（RT-ALS）”对帮助这些患者及其护理伙伴的潜在益处。
我们在麻省总医院肖恩·M·希利与AMG ALS中心对17名临床医生进行了半结构化焦点小组访谈和个人访谈（共2个焦点小组和5次个人访谈），以获取关于四个领域的反馈：1）诊所中所见ALS二元组的心理社会需求；2）转介至RT-ALS的诊所流程和转介系统；3）支持RT-ALS的诊所合作方式；4）RT-ALS项目内容和手册格式。我们采用了快速数据分析，以实现高效的混合归纳-演绎主题分析方法。
临床医生指出，二元组困扰（患者及其护理伙伴各自以及作为一个整体所经历的困扰）虽不普遍，但在确诊后早期常常出现。对提议的项目内容（二元组和个人应对技能）和结构（在确诊后约2个月内进行6次每周一次的虚拟课程）的反应是积极的。多学科临床医生强调，对于早期情绪困扰加剧的二元组，基于技能的项目很重要，转介可以很容易地融入诊所流程，以免增加医疗服务提供者和二元组的负担。
临床医生认可RT-ALS项目的内容和结构。接下来必须进一步征求二元组关于这类项目是否感兴趣的意见，如果感兴趣，则对该项目进行试点并加以完善，以便进行可行性测试，然后评估疗效。
