 |
| Image Source: pulmonaryfibrosisnews.com |
A 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.
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.
Dr. Lisa Marie Cannon is a physician based in New Jersey who is specializing in pulmonary disease, critical care, and sleep medicine. Like this Facebook page for more updates.
On September 28, 2016, my partner Allen’s pulmonologist told him to go home and get his affairs in order, because he only had 30 days to live. At that time, his biopsy showed severe idiopathic pulmonary fibrosis (IPF). Allen’s IPF caused him to struggle with many common daily activities. For instance, walking just 10 feet would leave him feeling dizzy and ready to fall. He had to use a walker to get from his living room chair to the bathroom. Even on supplemental oxygen, he had no energy.
ReplyDeleteAllen began doing all the research he could on his condition and treatment options. At first, he was discouraged by the lack of information and support groups for IPF — the support groups he found were for people with COPD. Then, Allen found the multivitamincare.org website, and everything started to change for him.
After his treatment, he doesn’t need his walker to get around anymore, and he’s been able to walk short distances and exercise his legs. He still needs supplemental oxygen, but the amount he uses hasn’t increased. He’s been able to go on an Alaskan cruise with his friends without feeling like a burden. He’s also been able to travel to beaches along the Oregon coast and watch whales in the bay. He says he likes being able to go places, get out of the car and take in the sights. Before multivitamin herbal formula, he wouldn’t have been able to travel or sustain the energy for sightseeing.
Now, Allen says he feels so lucky to be alive after his doctor told him he only had 30 days left. Because of the results from his treatment, Allen has a short, sweet piece of advice for other chronic lung disease patients considering getting help from multivitamin herbal remedy.
I was diagnosed in 2013 with pulmonary fibrosis and in early 2014 was told it was idiopathic pulmonary fibrosis (IPF). Next thing I found was I would need to carry around oxygen wherever I went and use it at home and while I slept. I was given a couple of years. In 2018 I was told by a holistic nurse practitioner to try multivitamin herbal treatment because my condition was getting worse. I used the herbal formula in March 2018. My lifestyle has changed since all this began. I consume no alcohol, walk more than I used to and without oxygen, and am able to control my weight much better than before.All of this has changed. I exercise and walk daily, play catch and dance with my grandchildren, I use the organic remedy for over 4 month without any further usage or side effects . I can only speak for myself, but I highly recommend www multivitamincare. org treatment for those who know the feeling of gasping for air as I did.
ReplyDelete