“As Idiopathic Pulmonary Fibrosis (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.” – Stephen Jones, 68, IPF patient
New results from a global survey reveal the emotional and practical challenges facing people with IPF. Patients are impacted by feelings of anxiety, fear, uncertainty and hopelessness, as well as concerns regarding 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.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.2
“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.” - Dr. Marlies Wijsenbeek, pulmonologist, Erasmus MC, The Netherlands.
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.3 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.
“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.” - Marianne Seiter, nurse specialised in interstitial lung diseases, Thoraxklinik, Universitätsklinikum Heidelberg, Germany