IPF patients struggle with quality-of-life issues

Idiopathic Pulmonary Fibrosis (IPF) patients have many unmet healthcare needs and support solutions need to be implemented, according to a study published in the May 2015 issue of the Journal of Advanced Nursing.

To better understand how IPF affects patients’ quality of life, researchers with the University Hospital of South Manchester NHS Foundation Trust in Manchester, U.K., undertook a qualitative study that spanned from 2007 to 2012. Seventeen patient interviews were conducted, represented approximately 90% of the patients with IPF at a respiratory and lung center.

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Most patients had lung function in 3 months of study, while it was 7 to 17 months from date of interview for the other 6 patients. For these 6 cases, their lung function data may underestimate disease severity. Three patients had a family history of IPF. Ten patients were receiving long-term oxygen therapy (LTOT) and ambulatory oxygen; 2 ambulatory oxygen only and 5 were not on any oxygen. Three patients were on a lung transplant waiting list. Three patients were in a clinical trial. In 6 of the 17 patient interviews, a family member contributed to the interviews.

After the interviews, the researchers identified three primary themes expressed by patients: “struggling to get a diagnosis, “loss of the life I previously had” and “living with IPF.” 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,” the researchers wrote. The patients’ stories centered around loss of sense of self, the life they had and the person they were.

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“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’,” they wrote.

As a result, support solutions for patients with IPF need to be implemented. “Some of these are fairly obvious, from the literature particularly around end of life care and symptom management,” they wrote. “Once implemented, follow-up work will be required to assess the effectiveness of these supportive interventions.”