ASAA details apnea's impact

WASHINGTON - The American Sleep Apnea Association released a report on Sept. 5 that details the impact of sleep apnea on patients and families.

“Raising Voices for Progress in Treatment and Care” is based on first-person accounts shared at the AWAKE meeting in June, and the results of a patient and caregiver survey that attracted 5,630 responses around the country.

"The powerful testimonies delivered on June 8 and through the survey illustrate the good, the bad, and the ugly of the patient journey with sleep apnea; these testimonies also chart an advocacy agenda to address our community's many and varied unmet needs," said Adam Amdur, ASAA's chief patient office, in a press release.

The release of the report coincides with ASAA's annual Sleeptember awareness events.

Key findings from the report include:

• Patients rated fatigue (80%) and daytime sleepiness (78%) as the two symptoms with the most severe impact.
• Barriers to diagnosis include low awareness of the condition among the public and medical professionals; lack of access to specialists and sleep testing centers; misperceptions and stigma related to the condition and its treatment; burdensome testing procedures; and financial constraints. Many participants described being symptomatic for years—or decades—before getting diagnosed.
• Obstacles to effective therapy include problems associated with diagnosis, as well as uncomfortable or inconvenient design of therapeutic devices; side effects and other challenges tolerating treatments; inadequate or punitive insurance coverage policies; and misdiagnosis and/or other medical complications.
• CPAP was the most-cited therapy in response to the open-ended survey question, "What have you found that helps the most?" However, persistence was required to determine and maintain effective machine settings, find a well-fitting mask and good seal, and properly clean and maintain equipment. More initial instruction, ongoing support, and better customer service were sought by many CPAP-treated individuals.

For more information about Sleeptember awareness activities and other sleep health resources, visit www.sleeptember.org.