Resiliency Intervention for Patients With ALS and Their Care-Partners

Launched by MASSACHUSETTS GENERAL HOSPITAL · May 5, 2025

Keywords

ClinConnect Summary

This clinical trial is exploring a new program designed to help people recently diagnosed with Amyotrophic Lateral Sclerosis (ALS) and their caregivers build resilience and cope with the emotional challenges that come with this illness. The researchers want to see how well this program works and gather feedback to improve it. The study is not yet recruiting participants but aims to include English-speaking adults aged 65 to 74 who have been diagnosed with ALS within the last two months. Caregivers living with them who are also experiencing emotional distress may join as well.

To participate, patients must be able to communicate and understand the study's requirements. The trial will use video technology for sessions, and support will be provided for those who may not be familiar with it. It's important to note that individuals with other serious health issues or cognitive disorders that might affect their participation cannot take part. This trial offers a unique opportunity for patients and their caregivers to learn coping skills while also contributing to important research that could help others in the future.

Gender

ALL

Eligibility criteria

• Inclusion Criteria for patient with ALS:
• • recent (within \~2 months) of first appointment at Healey Center for diagnosis of ALS documented in Epic (based on recommendations from neurologists)
• • ability to understand the study and research protocol as determined by a standardized teach-back method of assessment
• • ability to communicate by writing, speaking, or assistive communication device
• Inclusion Criteria for dyad:
• • English speaking adults
• • dyad lives together
• • at least one partner endorses clinically significant emotional distress during screening (\>7 on either subscale of the HADS)
• Exclusion Criteria:
• • patient with ALS with comorbid terminal diagnosis or severe mental health disorder that limits ability to participate (by self-report, as determined by our clinical team);
• • cognitive disorder that limits ability to participate (per neurologist)
• • inability or unwillingness to use live video technology (will teach any dyads who have low technology literacy how to use live video technology)