A new survey of people living with amyotrophic lateral sclerosis (ALS) in nine European countries asked about their priorities and how ALS has changed their lives.
The study — “IMPACT-ALS: Summary of results from a European survey of people living with ALS” — was published in Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration in September.
In total, 857 people with ALS participated, with the majority of participants being male and in the 55- to 74-year-old age range.
Respondents reported symptoms of weakness, fatigue, speech impairment, pain, and depression and other mood changes. Eighty-two percent of respondents said they had fears, the most common of which were leaving their families too soon (68 percent) and death from respiratory failure (50 percent).
Changes in lifestyle since their diagnoses were reported by 89 percent of respondents. Those changes included spending less time on most daily activities, but spending more time on the Web, reading, and communicating with family and friends.
Further survey info published in ALS News Today said respondents were most interested in ALS treatments that slowed progression of the disease or provided help with breathing or mobility. ALS News Today added, “People with ALS report significant changes in lifestyle after their diagnosis, but still have an acceptable quality of live and low stress levels.
“The majority of scales used to monitor people with ALS tend to focus more on the clinical aspect of the disease, such as the motor symptoms it causes and how fast the disease is progressing. But the actual patient experience is often left out.”
People living with ALS in the United Kingdom, Ireland, Germany, France, Spain, Italy, Belgium, the Netherlands, and Sweden participated in the survey.