How breathing machines affect quality of life for ALS patients and families

This research study is asking ALS patients and their families to share their experiences about using long-term ventilation support—breathing machines that help with breathing day and night. Researchers want to understand how these machines affect quality of life for patients, their partners, and their children, both for those who choose to use them and those who decide not to.

ALS is a serious illness that affects breathing, and one of the hardest decisions patients and families face is whether to use machines that keep people alive longer. Very little is known about how this choice affects not just the patient, but the entire family. This study aims to give doctors and patients better information to make this difficult decision together.