Idiopathic Pulmonary Fibrosis: Patient Needs, Perceptions and Experiences

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Idiopathic Pulmonary Fibrosis

IPF perceptionsA new study provides improved understanding of the challenges faced by people with Idiopathic Pulmonary Fibrosis (IPF) and their caregivers, which could help in the development of supportive care and could also improve quality of life in people afflicted with IPF. The study appeared December 23rd, 2014, in the Journal of Advanced Nursing.

IPF is a progressive lung disease. Once diagnosed, individuals with IPF live on average between 2-4 years. Pulmonary fibrosis (PF) is characterized by thick, scarred tissue of the lungs, causing difficulty with breathing. In spite of the recent FDA approvals of Ebriet and Ofev in October, there is no cure, few medications currently exist to treat it, and lung transplant is often the only viable option.

Very few studies examining life quality and patient experiences exist that focus on IPF, unlike in the lung cancer literature. Such studies are greatly needed to help improve patient care.

Researchers at the University Hospital of South Manchester NHS Foundation Trust, Manchester, UK sought to better understand how IPF impacts patient quality of life. This was a qualitative study that took place from 2007–2012.

Led by Annette Duck, they studied seventeen patients with a diagnosis of IPF at a respiratory and lung transplant center in North West England. The patients were being treated by a multidisciplinary team of healthcare professionals and had moderate to advanced disease severity. The researchers also interviewed six of the “informal” caregivers for these patients.

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Interviews were recorded and based on a guidebook developed by the research group. They transcribed the interviews word-for-word and used a technique called “Framework Analysis” to extract the data. Framework analysis is a systematic technique for analyzing qualitative data, particularly in teams conducting healthcare research.

The research team identified three primary themes expressed by the patients based on their interviews: 1) Struggling to get a diagnosis, 2) Loss of the life I previously had and 3) Living with Idiopathic Pulmonary Fibrosis. According to the study authors “Patients reported struggling to get a diagnosis and coping with a life-limiting, rapidly progressive illness with no good treatment and few support structures.”

The authors further stated that “Participants in this study struggled to get an accurate prompt diagnosis. They experienced functional limitation, rapid disease progression with limited support and few positive treatment options. Participant stories centered round loss of sense of self, the life they had and the person they were. Learning to live with IPF was a struggle, with increasing dependency on partners and specialists. Oxygen became a lifeline to many and helped them to feel ‘in control’.”

The study provides a comprehensive view of how IPF impacts the life and personal perceptions of people with IPF. Understanding of these findings may assist healthcare providers in providing better support for these patients and in improving their quality of life.