According to a new survey presented at ATS 2017, patients with lung disease report that they are unable to obtain home oxygen equipment that meets their needs thereby, forcing them to become isolated.
“This study provides additional insights into the anxiety and worry that plague home oxygen users’ daily lives,” said lead author Kathleen O. Lindell, RN, PhD, of the University of Pittsburgh (Pittsburgh, Pennsylvania) and the ATS Nursing Assembly Working Group (“Working Group”). “Patients’ responses to our survey were not surprising, however, as patients have been increasingly expressing dissatisfaction with their oxygen systems over the past few years.”
Even though patients and clinicians anecdotally report barriers in achieving oxygen services that match their needs, no recent studies have described issues from patients’ perspectives. To respond to this need, the ATS Nursing Assembly Working Group, led by Susan Jacobs, MSN, RN, surveyed oxygen users to better understand the problems these patients experience. The quantitative analysis in this study augments and helps provide context for quantitative data from the survey.
Members of this Working Group designed a 60-item survey that was posted on websites of lung disease-focused patient and professional groups, and the ATS Public Advisory Roundtable. Two questions were singled out for qualitative analysis.
Patients were asked:
- What is the biggest problem you would say you have with your oxygen?
- Is there some issue, other than those mentioned above, that you are having related to your oxygen?
One thousand nine hundred twenty-six people (1,926) responded to the 60-item survey, with 128 responding to question one and 745 responding to question two.
The researchers conducted a content analysis for questions one and two, and found similar themes in responses to both questions related to equipment issues, access, and anxiety over impaired quality of life.
“For the first time, we have data from a large number of patients that indicate the types of oxygen problems they experience, particularly in accessing portable systems,” says Dr. Lindell. “Patients identify that they would benefit from equipment that is portable, lightweight and allows them to maintain activities of daily living. Professional and patient organizations should develop processes to improve equipment supporting mobility and a better quality of life for oxygen dependent patients. This critical information could be used to identify specific strategies to improve home oxygen services at the patient, clinician and payer level.”
The ATS has convened a multidisciplinary forum to develop strategies to address the problems from the viewpoints of all stakeholders. This workshop, co-chaired by Susan Jacobs, MSN, RN and David Lederer, MD, will meet with these stakeholders at the ATS meeting in Washington, DC. This working group is working to: (A) Define optimal home oxygen therapy; (B) Identify the existing barriers to optimal home oxygen therapy; and (C) Identify gaps and propose focused areas for future investigation and device development.
“Our hope is that we can answer these questions and meet the needs of our patients, clinicians, and durable medical equipment (DME) providers,” said Lindell.
She added: “Our survey found that fewer than 10% of patients received education about their oxygen from their clinician, and the majority received education about their oxygen equipment from the delivery person. Many patients also reported not being tested on their provided oxygen equipment. As patients’ oxygen needs may change over the course of their lung disease, it’s vital that frequent review of oxygen equipment and testing be incorporated into clinical practice.”