Patients with idiopathic pulmonary fibrosis (IPF) frequently experience anxiety, fear, uncertainty, hopelessness, and limitations in daily activities, according to a global survey conducted by the pharmaceutical company Boehringer Ingelheim.
“We know a lot about the physiological changes that occur in IPF but surveys like this help us to better understand the psychological burden,” Marlies Wijsenbeek, pulmonologist at Erasmus MC in the Netherlands, said in a press release.
“While medical care is available to help slow the progression of IPF right after diagnosis, it is also crucial that patients are given emotional support from the earliest stage possible to help minimize anxiety associated with the disease. In daily practice we need to continuously remind ourselves that we are not just treating lungs, we are treating people,” Wijsenbeek added.
The survey was designed to assess patients’ concerns about IPF progression and about living with the disease. According to Boehringer Ingelheim, more than 150 patients from nine countries completed the survey.
Results showed that one of the biggest concerns among patients are IPF exacerbations. Of those surveyed, 39% said they are worried about experiencing an acute exacerbation. Another 22% said they are extremely worried. Patients said they are concerned that disease progression can quickly reduce survival chances.
Some patients also were concerned about the physical limitations associated with IPF, and they worried about how to maintain an active life, and for how long they would be able to do so. For some, it is important to accept and to learn how to live with the disease.
Therefore, it is important that IPF patients receive support beyond medication therapies. This could include enrolling in pulmonary rehabilitation programs, changing certain aspects of diet, and following an exercise plan that is appropriate for the disease and its treatment.
Patients also need to be encouraged to talk to their doctors about their concerns, as well as to other healthcare professionals such as psychologists and physiotherapists.
“A strong support network is vital for patients with IPF to help address the full impact of the disease,” said Marianne Seiter, an interstitial lung disease nurse at Thoraxklinik, Universitätsklinikum Heidelberg, in Germany.
“Nurses, and other members of the multi-disciplinary team, can help patients take a proactive approach to managing their condition through a range of care options. With appropriate support we can work together to help patients maintain the best quality of life possible,” Seiter added.
Patients may also benefit from sharing their worries with family and joining support groups to cope with their disease.
“As IPF patients, we know our lungs will deteriorate and it will be hard to breathe, but we don’t know when that is going to happen,” said Stephen Jones, an IPF patient from the U.K. “This can create a lot of worry and anxiety. It is important that we make the very best of the wide range of available support from healthcare professionals and patient groups, as well as close family and friends.”
Boehringer Ingelheim is the manufacturer of Ofev (nintedanib), an approved therapy for IPF treatment, and is currently conducting clinical trials to study the treatment’s effects in patients with interstitial lung disease associated with other conditions beyond IPF, such as systemic sclerosis and progressive fibrosing interstitial lung diseases.