Pulmonary fibrosis patients experience significant practical and emotional problems from their disease, according to a nine-country Boehringer Ingelheim survey.
More than 150 people took part in the survey, which exposed the worries that idiopathic pulmonary fibrosis patients have about their disease’s irreversible progression.
Sixty-one percent of patients said they were either worried or extremely worried about the possibility of having an acute IPF exacerbation. A severe exacerbation can decrease lung capacity, significantly increasing the risk of death.
The survey also showed that patients are worried about the impact of the physical limitations the disease imposes on them. Patients emphasized that it was important to know the length of time they can stay physically active and continue to pursue their interests and hobbies. They also said it was important for them to accept and learn to live with the disease.
Feelings of fear, anxiety, uncertainty and hopelessness were among the emotions they reported.
“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,” Stephen Jones, an IPF patient from the United Kingdom, said in a press release. “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.”
IPF patients need a range of support. In addition to drugs, it includes pulmonary rehabilitation programs, guidance on diet, and a personalized exercise plan. A crucial piece of support is a supply of oxygen for times when a patient has difficulty breathing.
Part of the healthcare support patients want is their physicians talking with them about their concerns and challenges.
But patients should also make use of a wide range of healthcare professionals who understand the disease. This team can include physiotherapists, rehabilitation staff, nurses, social workers, psychologists, family members and support groups.
“A strong support network is vital for patients with IPF to help address the full impact of the disease,” said Marianne Seiter, a nurse specializing in lung diseases at Thoraxklinik, Universitätsklinikum in Heidelberg, Germany. “Nurses, and other members of the multi-disciplinary team, can help patients take a pro-active 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.”
Boehringer Ingelheim manufactures Ofev (nintedanib), an approved treatment of IPF. The company conducted the survey to identify challenges that patients face, so it could help them with those challenges.
“We know a lot about the physiological changes that occur in IPF but surveys like this help us to better understand the psychological burden,” said Dr. Marlies Wijsenbeek, a pulmonologist at Erasmus Medical Center in Rotterdam, the Netherlands. “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,” he concluded.