New survey reveals emotional, practical challenges facing people with idiopathic pulmonary fibrosis

Jul 24 2017

New results from a global survey supported by Boehringer Ingelheim reveal the emotional and practical challenges facing people with idiopathic pulmonary fibrosis (IPF). Patients are impacted by feelings of anxiety, fear, uncertainty and hopelessness, as well as a restriction in everyday activities. However, a range of both medical and non-medical support is available to help them cope with their disease.

The survey uncovers patient concerns about the irreversible progression of their disease. Patients are especially worried over acute IPF exacerbations - a rapid deterioration of symptoms within days or weeks, which can significantly reduce chances of survival and lead to death within a few months. More than 150 patients across nine countries were interviewed. 61% of respondents report that they are worried (39%) or extremely worried (22%) about experiencing an acute IPF exacerbation.

Patients also highlighted the impact of the physical limitations caused by the disease, the importance of knowing how long they will be able to be active and continue with their hobbies and accepting and learning how to live with the condition.

Dr. Marlies Wijsenbeek, pulmonologist, Erasmus MC, The Netherlands commented, "We know a lot about the physiological changes that occur in IPF but surveys like this help us to better understand the psychological burden. 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."

Support for patients dealing with the challenge of IPF goes beyond drug therapy and can include supply of additional oxygen when needed and pulmonary rehabilitation programmes, including advice on the diet and exercise plan most appropriate to an individual patient's disease and medication. Patients can benefit from speaking with their physician about the challenges they face, however further emotional and practical support can also be gained from the wider team of healthcare professionals, such as nursing support, social workers, psychologists and physiotherapists, as well as family, friends and patient support groups.

Marianne Seiter, nurse specialized in interstitial lung diseases, Thoraxklinik, Universitätsklinikum Heidelberg, Germany, said, "A strong support network is vital for patients with IPF to help address the full impact of the disease. 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."

Stephen Jones, an IPF patient from UK said, "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. 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."

Improving the wellbeing of people with fibrosing lung diseases such as IPF is a priority for Boehringer Ingelheim. As part of this commitment, Boehringer Ingelheim is currently enrolling patients to participate in further clinical trials investigating the efficacy of nintedanib in treating interstitial lung disease associated with conditions other than IPF, including people with systemic sclerosis who have also developed interstitial lung disease (SSc-ILD) and people with other progressive fibrosing interstitial lung diseases (PF-ILD).

Source: https://www.boehringer-ingelheim.com/press-release/ipf_survey_burden_of_disease