People close to idiopathic pulmonary fibrosis (IPF) patients and those they interact with — from family members and acquaintances to healthcare professionals — influence their acceptance of their disease and quality of life, a small U.K. study reports.
It found that a solid understanding of IPF’s nature and disease course is key to both patients and their families, and emphasis should be placed on coping strategies that might improve life quality, from physical activity to joining support groups.
These findings were published in the study, “Patients’ experiences of coping with idiopathic pulmonary fibrosis and their recommendations for its clinical management,” in the journal Plos One.
IPF progression varies among patients, with some experiencing a slow decline over years while others decline rapidly.
In all cases, patients have to deal with both the physical and the psychological limitations associated with this severe disease.
Researchers interviewed 10 IPF patients (ages 53 to 81) in southwest Wales who agreed to take part in the study, out of 5o invited, to better understand how they dealt with their diagnosis, are living with the disease, and their opinions of and experiences with professional support received. All were members of the same IPF support group.
They grouped interview themes into two topics: ‘patient experience with the condition,’ which mainly covered the psychosocial impact of IPF (social perception, depression, acceptance, and life quality); and ‘patient-led recommendations for practice,’ reflecting their views on how minimize the effects of IPF on daily life (support, patient opinions, and exercise programs).
Participants reported the use of coping strategies to try to keep a more positive attitude, and emotion-focused strategies to overcome depression. Joining IPF support groups was seen as especially helpful in these efforts.
A support group also allowed patients to share their knowledge and experience with others, and a way to get tips on living with this chronic disease.
According to the researchers, an ability to accept their condition was tied to a sense of optimism in patients.
Overall, the researchers suggest that people involved in IPF patients’ lives should try to help them accept the disease by providing the proper physical, psychological, and social environment.
“Health professionals should provide patients with information that focuses on living with IPF, encouraging them to make lifestyle changes and adaptations to improve quality of life,” they wrote.
“Family members should receive education about IPF so that they can support such changes. Patients should be encouraged to join a support group and to participate in physical activity (again preferably group-based),” the researchers added.
The study’s small number of participants, and their time since diagnosis (one to 10 years; likely with clusters in early and late disease stages) may have influenced results, the team noted.