An 18-year study describes changing experiences among three people with ALS using invasive ventilation
Original source
Long-term trajectories of physical, psychological, and psychosocial experiences among people living with amyotrophic lateral sclerosis using tracheostomy invasive ventilation: An 18-year longitudinal study. (opens in a new tab)Compass summarised this from the study's abstract.
Study details
- Studied in
- Human
Population inferred from the title and abstract by Compass.
Three people with amyotrophic lateral sclerosis (ALS) who used tracheostomy invasive ventilation were followed through repeated face-to-face assessments over about 18 years. Psychological state, physical symptoms and hope worsened after illness onset, reaching their lowest levels between diagnosis and starting ventilation, then improved and became more individual over time.
Why this matters
The findings may help clinicians consider changing psychological, physical and social needs when supporting people with ALS who use invasive ventilation. This observational study does not show that ventilation or any other intervention causes these changes, and it does not change treatment recommendations.
Limitations and context
This was a small longitudinal study of only three people, based on repeated assessments. The findings describe individual experiences and cannot establish how common these patterns are or whether they apply to people with ALS who do not use tracheostomy invasive ventilation.