In order to make patient-centered outcomes research more meaningful to patients and their caregivers, patient-centered outcomes research should be conducted with a focus on building and maintaining trust, which is achieved via pre-engagement with communities and continuous engagement of study participants and their communities.

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Persons with chronic obstructive pulmonary disease (COPD) are known to have poor sleep quality. Acceptance of and adherence to therapies for sleep problems may depend on how the person with COPD regards the source of his sleep problem, yet little is known about their attribution as to the cause of these sleep symptoms. The objective of this study was to describe the subjective sleep complaints of individuals with COPD along with their attributions as to the cause of these symptoms, and their treatment preferences for insomnia. Three focus groups were conducted (N=18) with participants who have moderate to severe COPD. Focus group data were transcribed, compared and contrasted to identify themes of attribution. Participants reported difficulty falling asleep, staying asleep, and daytime sleepiness. They attributed their sleep problems primarily to their pulmonary symptoms, but also poor air quality (thick humid air) and death anxiety when awake during the night. There was no clear preference for type of treatment to remedy this problem (medication, cognitive therapy), although they indicated that traveling to the clinic was difficult and should be avoided as much as possible. These data suggest that environmental manipulation to improve air quality (eg, air conditioning) and modifications to reduce death anxiety could be beneficial to persons with COPD. In-person multi-session therapy may not be acceptable to persons with moderate to severe COPD, however internet-based therapy might make treatment more accessible.

Focus group findings will be used to implement a union-based participatory primary prevention intervention for the reduction of blood exposure among PCAs.

No abstract