Boehringer Ingelheim: Global survey reveals the emotional and practical challenges facing people with idiopathic pulmonary fibrosis (IPF)

  • 61% of IPF patients are worried or extremely worried about experiencing an acute IPF exacerbation
  • Survey underlines the importance of appropriate support and coping mechanisms for patients living with IPF1
  • Healthcare teams emphasise the need of a strong support network and multi-disciplinary care for people with IPF

INGELHEIM, 26-Jul-2017 — /EuropaWire/ — New results from a global survey supported by Boehringer Ingelheim1 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.1However, a range of both medical and non-medical support is available to help them cope with their disease.2

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.3 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.1

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.1

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 minimise 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.2 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 specialised 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).*

About IPF
IPF affects approximately 3 million people worldwide.4,5 IPF is a rare and devastating disease with a median life expectancy after diagnosis of approximately 2-3 years.6

Boehringer Ingelheim
Innovative medicines for people and animals have for more than 130 years been what the research-driven pharmaceutical company Boehringer Ingelheim stands for. Boehringer Ingelheim is one of the pharmaceutical industry’s top 20 companies and to this day remains family-owned. Day by day, some 50,000 employees create value through innovation for the three business areas human pharmaceuticals, animal health and biopharmaceutical contract manufacturing. In 2016, Boehringer Ingelheim achieved net sales of around 15.9 billion euros. With more than three billion euros, R&D expenditure corresponds to 19.6 per cent of net sales.

Social responsibility comes naturally to Boehringer Ingelheim. That is why the company is involved in social projects such as the “Making More Health” initiative. Boehringer Ingelheim also actively promotes workforce diversity and benefits from its employees’ different experiences and skills. Furthermore, the focus is on environmental protection and sustainability in everything the company does.

More information about Boehringer Ingelheim can be found on www.boehringer-ingelheim.com or in our annual report: http://annualreport.boehringer-ingelheim.com.

Intended audiences
This press release is issued from our Corporate Headquarters in Ingelheim, Germany and is intended to provide information about our global business. Please be aware that information relating to the approval status and labels of approved products may vary from country to country, and a country-specific press release on this topic may have been issued in the countries where we do business.

* Nintedanib is currently not approved for use in SSc-ILD or PF-ILD and its safety and efficacy has not yet been fully established.

  1. Data on file. Boehringer Ingelheim. Think of Everything Global Patient Survey. 2016.
  2. Wells AU., et al. Interstitial lung disease guideline: The British Thoracic Society in collaboration with the Thoracic Society of Australia and New Zealand and the Irish Thoracic Society. Thorax 2008;63 Suppl 5:v1–58.
  3. Song JW, et al. Acute exacerbation of idiopathic pulmonary fibrosis: incidence, risk factors and outcome. Eur Respir J. 2011;37:356-363.
  4. Nalysnyk L., et al. Incidence and prevalence of idiopathic pulmonary fibrosis: review of the literature. Eur Respir Rev. 2012;21(126):355-361.
  5. Data on file. Boehringer Ingelheim. DOF. OFEV.RES.IPF/08/11January2016. Worldwide prevalence 2016.
  6. Ley B., et al. Clinical course and prediction of survival in idiopathic pulmonary fibrosis. Am J Respir Crit Care Med. 2011 Feb 15;183(4):431- 40. doi: 10.1164/rccm.201006-0894CI.

SOURCE: Boehringer Ingelheim GmbH

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