Survey: Oxygen scripts, equipment often don't meet needs

YARMOUTH, Maine - People who require home oxygen therapy face barriers that can reduce their quality of life, according to the results of a first-ever survey to gauge the challenges of oxygen use from a patient perspective.

The American Thoracic Society Nurse Assembly Working Group organized a 60-question survey of patients with lung disease and found they struggled with insurance coverage, inappropriate equipment, inadequate supply and heavy tanks, said Kathleen Lindell, RN, PhD, and lead author of a qualitative analysis of the survey results.

“They're fearful when they go out, so it affects their quality of life,” said Lindell, nursing manager for the Dorothy P. and Richard P. Simmons Center for Interstitial Lung Disease at the University of Pittsburgh. Here's what else she had to say:

HME News: What prompted you to do this survey?

Kathleen Lindell:Two years ago, at the annual American Thoracic Society meeting, the Nursing Assembly members were talking about our patients. The Nursing Assembly members all noticed that our patients with lung disease are all having problems with oxygen access. Susan Jacobs, who is leading this project, convened the working group. The group developed the questionnaire patient survey, which ATS hosted for two months. We had 1,926 individual patients who responded. It reached a cross-section of patients with lung diseases.

HME: What are the challenges for these patients?

Lindell:What happens is that a lot of providers are able to prescribe, but they may not know the nitty-gritty of oxygen prescription and the equipment that the patient is provided. The prescription that this provider writes should meet the testing requirements and the equipment provided by the durable medical equipment provider should be able to meet the prescription requirement. We find that patients don't necessarily always get what is prescribed. Providers may not know different types of equipment are available.

HME: What do patients want?

Lindell:Patients want small equipment and something that is easy for them to carry. They would like to see portable oxygen concentrators able to meet their needs. For patients with higher flow, portable concentrators don't meet their needs. We are hoping that the reimbursement improves and that better equipment is developed. Often patients' oxygen prescription changes with activity, and with their home systems, they have to get up and walk to the system to turn it up to meet their needs. Some of them have said it would be nice if they could invent a remote control to increase airflow from afar.

HME: What happens next?

Lindell:The working group is continuing. There's a project through ATS to develop guidelines for oxygen prescription. Education is key for the patient, for the providers and for the DME.