New Quality of Life Survey Aims to Help Inform ALS Community Needs

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by Hawken Miller |

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BioNews Insights is launching a survey, in collaboration with ALS News Today, with the goal of understanding how different aspects of this disease affect an individual’s quality of life.

The survey, which is expected to take about 15 minutes to complete, opens with WHOQOL-100, a set of questions developed by the World Health Organization (WHO) to determine how individuals view their position in life, then moves into specific questions developed for amyotrophic lateral sclerosis (ALS) patients.

BioNews Insights is the research arm of BioNews Services, which publishes this website. The survey is being rolled out by therapeutic area (i.e., neurology, immunology, endocrinology, etc.), and eventually will include all the rare and chronic disease sites published by BioNews, with a goal of understanding the commonalities and differences among these disorders.

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“This helps us really understand the factors that impact their life,” Ty Dunkelberger, general manager of BioNews Insights, said in an interview with ALS News Today. “From this, we can help doctors learn how to better treat patients, we can help our own editorial staff understand which factors are important to talk about, and this information is going to be available to the communities as well.”

Individuals taking the survey will first go through the WHOQOL-100, which includes questions on topics such as pain and discomfort, thoughts about the future, fatigue, daily living (finances, transportation, and safety), and self-confidence.

Following this section, respondents will be asked about their disorder’s specific type, how long it’s been since they were diagnosed, their various symptoms, and the medications they use and their side effects.

The BioNews Insights team spent months designing the survey so that it’s intuitive and easy to use. Members leveraged their experience with more than 160 other surveys to ensure that once the results are in, they have a way to properly analyze and share the information with the ALS community.

“Once we’ve collected it, we can have an output that is not only interesting but worthwhile,” Dunkelberger said.

He expects that the survey will generate up to 9,200 responses, allowing BioNews Insights and the people who take part in it to learn more about rare and chronic disease communities.

“Education is key and knowledge is key for a lot of folks who are living with a rare disease. So I think this is another way that we can help bolster that,” Dunkelberger said.