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.”
It is interesting to me that there are no Respiratory Therapists on your panel, unless I am not seeing something. RT’s are also in the trenches working with people. While I am not doubting that education is sketchy in some entities, one should also take into consideration that patients do forget what they are taught at times. It does not mean that the education was not done to a satisfactory level. In addition, I did not see any mention of the fact of Medicare reimbursement cuts of 70% in July of last year. In addition, DME companies are forced legally to provide the service and equipment free for 24 months after the 36 month cap. This GREATLY affects the equipment that can be purchased for this patient population. I would strongly encourage you to include other health care professionals to be a part of your study to bring these perceptions. If I have missed something in your article, forgive me. It does seem that some due diligence is lacking here. Remember that RT’s do have advanced degrees which could help in providing a more balanced perception. As an example, I am currently working on my management degrees which, in addition to my RRT has given me more in-depth knowledge in the business and economics areas of medicine.
Thank you for calling out the unaware author of this article and for sticking up for DME companies. When you combine reimbursement cuts with unreasonable patient demands, things get rough.
Michael, could not agree more with you. I am an LPN in the DME Clinical field for over 35 years and have seen many changes with in our oxygen market. All of the points you made do need to be addressed and not having the Respiratory community on board brain storming and adding their knowledge and experience in this field is a disservice. I have spent many hours with Patients who come through our door and are with another DME and have not received education regarding equipment, or available equipment suitable for their individual needs. There are many different obstacles but we need to inform customers. This starts from manufactures on down to our clinics. Many of the nurses I speak with are not clear on the pulse dose verses continuous flow option and what is optimal or available. We have manufactures who advertise and yet are not clear of what their units do and somewhat misleading many consumers. I am soon to retire and at my age see many friends, family, in need of medical equipment. I am thankful that I am able to assist and do what I can. I would love to see an all out plan to address this increasing issue regarding our Respiratory community. Thanks again and I wish you success.