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

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by Hawken Miller |

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

The survey, which is expected to take approximately 15 minutes to complete, will use the WHOQOL-100 questions, developed by the World Health Organization (WHO) to determine how individuals view their position in life, along with specific queries developed for scleroderma patients.

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

The results will help shed light on the challenges faced by people living with rare diseases.

“This helps us really understand the factors that impact their life,” said Ty Dunkelberger, general manager of BioNews Insights, in an interview with Scleroderma News. “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 filling out 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 that section, respondents will be asked the specific type of their disorder, how long it’s been since their diagnosis, what kind of symptoms they have, and about medications and their side effects.

The BioNews Insights team has spent months designing the survey to make sure it is intuitive. They’ve 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 scleroderma community.

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

He estimates the survey will generate up to 9,200 responses, which will allow both BioNews Insights and the people who take part in it to learn more about the 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.