Survey Finds People with Cystic Fibrosis Using a CFTR Modulator Have Positive View of Treatment Plans, HCP Relationships, Future

Patients who have never used a modulator are more likely to say CF negatively impacts their overall quality of life

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Nov 26, 2019, 09:30 ET

PHILADELPHIA, Nov. 26, 2019 /PRNewswire/ -- A new survey from Health Union, Cystic Fibrosis In America 2019, finds that people with the condition who currently use a cystic fibrosis transmembrane conductance regulator (CFTR) modulator tend to have a more positive view about their futures, treatment plans and healthcare professional relationships than those who have never used one. The survey illuminates the perspectives and experiences of people impacted by cystic fibrosis.

The findings also support the launch of Cystic-Fibrosis.com, Health Union's 24th chronic condition-specific online community.

According to the Cystic Fibrosis Foundation, the condition is caused by mutations in the CFTR gene, which affects the production of the CFTR protein responsible for the balance of salt and fluids inside and outside of cells. The resulting imbalance causes increased mucus production, which can clog pathways and lead to complications, including in the respiratory and digestive systems. Four CFTR modulators, which are designed to improve the function of the CFTR protein, have been approved by the U.S. Food and Drug Administration since 2012.

The survey, which fielded before the most recent CFTR modulator became FDA-approved in October 2019, included responses from patients – all above the age of 18 – and current caregivers, nearly three-fourths of whom care for people under 18 years old. CFTR modulators are only indicated for use with certain mutations and, depending on the specific treatment, only indicated for certain age groups. Of the survey's respondents, 47% represent patients who currently use a modulator, 11% represent those who had previously used a modulator and 42% represent patients who have never used one.

Comparing those who currently use a modulator to those who have never used one, a higher percentage of both patients and caregivers who represent current modulator use hold an optimistic view of the long-term success of the patient's current treatment plan. Nearly four in 10 patients who currently use a CFTR modulator, compared to more than three in 10 who have never used one, said they feel optimistic about their treatment plans. At the same time, 58% of caregiver respondents whose patients currently use a modulator felt optimistic about their patients' treatment plan, compared to 47% of caregivers whose patients have never used one.

"When I started using a CFTR modulator for the first time, I felt as if I was given a magic potion with the ability to slow time," said Cystic-Fibrosis.com patient advocate Janeil Whitworth. "My symptoms became more manageable, and I didn't fear an inevitable decline in the same way as before. The progressive effects of cystic fibrosis slowed down, and for the first time I was able to think about a future - better yet, a healthy future."

Additionally, patient respondents who are currently using a CFTR modulator appear to have more positive relationships with their healthcare professionals. These respondents were more likely than patients who have never used a CFTR modulator to say they're satisfied with the care they receive from their HCPs, completely agree with their HCPs on the severity of their condition and think their HCPs communicate effectively with each other about their condition or health concerns.

Patients who have never used a CFTR modulator have a less optimistic view of how CF affects both their present and their future. Those respondents were more likely than those who currently use a modulator to say their CF has a negative impact on their overall quality of life, as well as their ability to sleep, travel, exercise and perform household duties. They were also more likely to say they are concerned about their future due to their condition.

"As the treatment landscape for cystic fibrosis quickly evolves, so too will the need for people impacted by the condition to find more information and connect with others about their shared experiences," said Tim Armand, co-founder and president of Health Union. "One of the many positive aspects of an online health community like Cystic-Fibrosis.com is that it provides a safe, supportive environment for people living with the condition – regardless of age, mutation and symptom type – as well as caregivers."

Cystic Fibrosis In America 2019 surveyed 570 people impacted by cystic fibrosis – including 329 patients, 162 current caregivers and 79 caregivers of deceased patients – from April 30 to Sept. 10, 2019. A summary infographic of the results is available on Cystic-Fibrosis.com; additional survey results may be available upon request.

About Health Union
Health Union encourages social interactions that evolve into valuable online health conversations, helping people with chronic conditions find the information, connection, and validation they seek. The company creates 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. Today, the Health Union family of brands includes 25 online health communities, including LungCancer.net, ParkinsonsDisease.net, MultipleSclerosis.net and Type2Diabetes.com.

SOURCE Health Union