Embargoed until May 22, 2:15 p.m. ET
Session: B107 Optimizing Patient Centered Approaches in Pulmonary, Sleep, and Critical Care
Abstract Presentation Time: Monday, May 22, 2:15 p.m. ET
Location: Room 151 A (Middle Building, Street Level) Walter E. Washington Convention Center
ATS 2017, WASHINGTON, DC ─ According to a new survey, patients with lung disease report that they are unable to obtain home oxygen equipment that meets their needs thereby forcing them to become isolated. The study was presented at the 2017 American Thoracic Society International Conference.
“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 (also to be presented at the ATS meeting; Abstract 321 – “Patient Supplemental Oxygen Survey: Results of the American Thoracic Society (ATS) Nursing Assembly Oxygen Working Group”).
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: (1) What is the biggest problem you would say you have with your oxygen? (2) 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. (See abstract below).
“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 Dr. Lindell.
She added: “Our survey found that fewer than 10 percent 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.”
Contact for Media: Kathleen O. Lindell, RN, PhD, Lindellko@upmc.edu
Equipment, Access and Worry About Running Short of Oxygen: Key Concerns in the Patient Supplemental Oxygen Survey
Authors: K.O. Lindell1, L. Catazanarite2, E.G. Collins3, C.M. Garvey4, C. Hernandez5, S. McLaughlin6, A.M. Schneidman7, P.M. Meek8, L.A. Hoffman2, S.S. Jacobs9; 1Univ of Pittsburgh Pittsburgh, PA/US, 2University of Pittsburgh Pittsburgh, PA/US, 3University of Illinois/Hines VA Hospital Chicago, IL/US, 4UCSF San Francisco, CA/US, 5Hospital Clinic de Barcelona. CIBERES Barcelona/ES, 6University of California, San Francisco San Francisco, CA/US, 7Hospice of the Valley Phoenix, AZ/US, 8University of Colorado at Denver Denver, CO/US, 9Stanford University Medical Center Stanford, CA/US; ATS Nursing Assembly Oxygen Working Group
Rationale: Patients and clinicians anecdotally report barriers in achieving home oxygen services that match their needs. The extent and specific concerns of patients are unknown, as no recent studies have described issues from the patients’ perspective. In response, the ATS Nursing Assembly Oxygen Working Group surveyed oxygen users to better understand problems patients’ experience. This qualitative analysis augments quantitative data provided by the survey.
Methods: An online 60-item survey developed by members of the ATS Nursing Assembly Oxygen Working Group was posted on websites of patient and professional organizations in the United States whose focus related to lung disease and the ATS Public Advisory Roundtable. The focus of this report was two questions in the survey that allowed free text responses. These were: 1) What is the biggest problem that you would say you have with your oxygen; and 2) Is there some issue, other than those mentioned above, that you are having related to your oxygen? Responses were transcribed and content analysis used to identify common themes. This analysis revealed similar themes in responses to both questions.
Results: The 1926 respondents were primarily female (72%), older (mean age 64 ± 11) and used oxygen 24 hours/day (60%) for 15 years (51%). Of those replying, 128 individuals responded to the first question and 745 to the second. Common themes that emerged were: 1) equipment related issues, including lack of portability, reduced availability of liquid oxygen and desire for portable oxygen concentrators (POC) that delivered high flow oxygen, 2) access issues, including insurance coverage, experiences where durable medical equipment companies provided equipment/information/service that did not meet needs, and 3) angst/concern/worry of impaired quality of life (Table 1). Of those replying, 25% specifically addressed the need for access to POC that meet their oxygen demands, especially high flow oxygen and 17% specifically addressed the desire to keep their liquid oxygen or attain liquid oxygen.
Table 1. Common Themes
“Largest problem lies with heaviness of tanks and my inability to manage them. Also I no longer travel due to this problem”
“We can fit a computer in our palm, but my portable oxygen weighs ~ 7 pounds. I weigh 100 pounds and am sick. Can’t we make a small concentrator?”
“Would like to see someone invent a remote control. I need to be able to turn O2 up but I have to get up to walk across the room to my machine and am out of breath by then.”
“It is my understanding that liquid oxygen is being phased out. This is a great disservice to oxygen patients! Liquid oxygen has the most flexibility for patients and honestly leaves me feeling the least disabled. When I travel it is becoming more and more difficult to locate liquid oxygen at my destinations. Please fight for its continued availability.”
“There are no continuous flow portable oxygen concentrators over 3LPM and my oxygen requirement is much higher.”
“It’s frustrating that I have to wait 5 years to change oxygen supplier if I want to.”
“Not being able to change oxygen suppliers, not being able to get a POC with the company I have, having all sorts of problems with the supplier for the past 2 years and being stuck with them. My life is just existence at home right now, with no hope of change for at least 3 yrs. and I hate it.”
“While we were trying to find a way for me to return to work, we kept calling (DME) to explain what we needed. They told me I would need to carry two 1 hour cylinders with me daily, which each took 10 hours to fill, along with another two or three 4 hour cylinders. Then I would need to stop by their office EACH day to refill the cylinders. Impossible with a full time job.”
“constant concern about running out of O2”
“Electrical failures. Weight of the tanks. Always having to make sure I have enough to last for whatever activity I am doing.”
“Because of the limits of my current oxygen, I am mostly homebound. The oxygen available to me is too heavy to carry or too bulky to wheel, so an outing is more trouble than it’s worth.”
Conclusion: Patients report inability to obtain equipment that meets their needs and forced isolation due to inability to obtain user friendly oxygen delivery systems and/or identify suppliers who can meet their needs. These results provide additional insight into the patient experience involving angst and worry in their daily lives. This mismatch in perceived oxygen needs may result in social isolation, ultimately affecting their quality of life.