Inducible laryngeal obstruction is a breathing disorder characterized by unwanted vocal fold closure having the potential to restrict breathing at times.
It's estimated that between 3-12% of patients with dyspnea complaints have inducible laryngeal obstruction.
Patients with inducible laryngeal obstruction are thought to make up to 22% of patients with frequent emergency room visits due to sudden onset dyspnea.
While experts know how to treat the condition, there's not much formal research about what patients with the disorder experience and what treatment outcomes matter to patients.
A research team, led by Kate McConville, M.A., CCC-SLP, a speech language pathologist at University of Michigan Health, interviewed 26 patients with inducible laryngeal obstruction to learn about their experiences with the condition in order to determine what mattered most to them.
Patient responses
Researchers reviewed the transcripts from these interviews and organized all the content into themes to identify patterns and trends in patient experiences that could be explored.
After going though reliability testing, eight consistent themes and 54 subthemes were identified.
The results suggest that things of high importance to patients with inducible laryngeal obstruction included their symptoms and things that trigger symptoms, getting diagnosed and treated, the emotional impact of the disorder, their perception of health and prognosis, things that help them feel better, how the disorder impacts their lifestyle, the physical impact of inducible laryngeal obstruction and social consequences of inducible laryngeal obstruction.
"As clinical care providers, we are familiar with the signs and symptoms of the disorders that we treat and we can tell people all about them from our 'expert' perspectives," said McConville.
"We tend to focus on the parts of a disorder that interest or compel us most as clinicians but when we find out what matters most to patients, we can make better tools to measure the outcomes that matter to them.
"Identifying these key topics for patients creates a base for clinicians to better understand what type of results patients are looking to receive from their care."
Additional notable findings included that even though clinicians have focused on inducible laryngeal obstruction's impact on breathing, more participants reported that they were troubled by some other symptoms of discomfort as well, such as throat and chest tightness, that occur along with it.
Additionally, 65% of participants described difficulty getting diagnosed or treated accurately and many reported an emotional consequence from inducible laryngeal obstruction.
Several participants described frustration and a sense of stigma from having their symptoms dismissed as anxiety.
"The results show that patients place emphasis on the emotional and psychosocial consequences having inducible laryngeal obstruction," said McConville.
"Since these seem especially important to patients impacted by the disorder, future efforts to treat inducible laryngeal obstruction and to measure treatment outcomes may be inaccurate if they do not take these parts of their experiences into account adequately."
Additional author includes Susan L. Thibeault from the Division of Otolaryngology – Head and Neck Surgery, School of Medicine and Public Health, University of Wisconsin Madison, Madison, Wisconsin.
Paper cited: "Patient Perceptions of the Impact of Inducible Laryngeal Obstruction of Quality of Life," PLOSone. DOI: 10.1371/journal.pone.0307002
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