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Health Union to Present Research on Quality of Life Impact at Three Conferences Throughout Fall 2021

Findings focus on patient-reported impact of cystic fibrosis, hidradenitis suppurativa, spondyloarthritis on various quality of life factors

Published October 25th, 2021 | 4 Minute Read

PHILADELPHIAOctober 25, 2021Health Union has been accepted to present research at three prestigious conferences throughout fall 2021, focusing on the experiences and perspectives of people living with cystic fibrosis, hidradenitis suppurativa and spondyloarthritis. The research, leveraging data from the company’s syndicated, condition-specific In America surveys, highlights Health Union’s deep understanding of the entire patient journey, including significant condition impact on quality of life.

Cystic Fibrosis Research – North American Cystic Fibrosis Conference

Health Union will present quantitative research on how patients perceive the impact of cystic fibrosis transmembrane conductance regulator (CFTR) medication Trikafta on their futures and different aspects of quality of life. The research will be presented in poster form at the North American Cystic Fibrosis Conference, which will take place virtually Nov. 2-5.

The findings, based on responses from Health Union’s Cystic Fibrosis In America 2020 survey of 384 people living with the condition, revealed that respondents who were currently using Trikafta were less likely to feel concerned about their futures and more likely to feel optimistic about the long-terms success of their treatment plans.

The authors of the research, titled “Hope for the future: Optimism among patients using Trikafta for treatment of cystic fibrosis,” are Health Union’s Dana Ingemann, Sidney Saleh-Kurtz and Kaitlyn McNamara.

Ankylosing Spondylitis and Axial Spondyloarthritis – International Society for Quality of Life Research

Health Union is presenting research at the International Society for Quality of Life Research’s 28th Annual Conference. The research, which is presented in poster form, aims to determine how conditions for people with spondyloarthritis – radiographic and non-radiographic axial spondyloarthritis, as well as general spondyloarthritis – impact their quality of life and employment.

The research, based on findings from Health Union’s Ankylosing Spondylitis/Axial Spondyloarthritis In America 2020 survey, found that nearly seven in 10 respondents considered their work or careers to be negatively affected by their conditions, 30% received social security or disability income and nearly a quarter voluntarily stopped working. Meanwhile, only 6% considered their conditions to be under control with their current treatment plans.

The poster presentation, titled “Quality-of-life impact and perceived treatment efficacy among patients with spondyloarthritis,” will be available throughout the conference, which runs virtually Oct. 12-28, and will remain accessible until Nov. 30. Health Union’s Matt Ferry and Evan Krieg authored this research.

Hidradenitis Suppurativa – Symposium on Hidradenitis Suppurativa Advances

Leveraging Hidradenitis Suppurativa In America 2020 survey findings, Health Union developed research to measure the impact of hidradenitis suppurativa (HS) on sex and intimacy, as well as the impact of sex and intimacy concerns on treatment management and quality of life viewpoints.

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The research revealed that 53% of survey respondents – all living with HS – said they had a strong fear of sex or intimacy. And those respondents were more likely than other respondents to say it’s difficult to find treatment options that work for their HS. They were also more likely to experience lower self-esteem due to their HS, feel like a burden when sharing about their HS with family and friends and to say people mistake their HS symptoms for poor hygiene.

A poster presentation of this research, titled “Fear of sex/intimacy, lower quality of life and treatment challenges among HS patients,” was presented at the 6th Annual Symposium on Hidradenitis Suppurativa Advances, which took place online Sept. 24-26. The research was authored by Health Union’s Rachel DiStefano, Amylyn Verrone, Cady Vishniac and Evan Krieg.

About Health Union

Health Union, with the recent acquisition of WEGO Health, maintains the largest team of experts, patient advocates and healthcare leaders dedicated to social health. The company encourages social interactions that evolve into valuable online health conversations, helping people with chronic conditions find the information, connection, and validation they seek. Health Union does this by creating condition-specific online communities – publishing original, daily content and continuously cultivating social conversation – to support, educate and connect millions of people with challenging, chronic health concerns. Health Union’s growing portfolio of condition-specific communities includes 36 online health communities, including LungCancer.net, ParkinsonsDisease.net, MultipleSclerosis.net and Migraine.com.

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