Cystic fibrosis patients being treated with a CFTR modulator had more positive outlooks on their futures and their treatment plans, and more positive relationships with healthcare professionals than those who have never used these therapies, according to a survey.
The Cystic Fibrosis In America 2019 survey polled 570 people impacted by cystic fibrosis, including 329 patients, 162 current caregivers and 79 caregivers of deceased patients. The survey was conducted from April 30 to Sept 10, 2019 by Health Union.
The four CFTR modulators on the market — Kalydeco, Orkambi, Symdeko, and Trikafta — are are only indicated for use with certain CFTR 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.
According to results, 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. Specifically, approximately 40% of patients who currently use a CFTR modulator said they feel optimistic about their treatment plans, compared to approximately 30% who have never used one. 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.
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, according to the survey.
Those respondents were more likely 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.
More survey results are provided by Cystic-Fibrosis.com, a CF community resource established by Health Union.
