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Few empirical studies have examined the role of family caregivers in the lives of adults with CF.As part of the Project on Adult Care in CF (PAC-CF), an on-going prospective, longitudinal panel study of adults with CF, 119 family members and friends of adults with CF completed a mail survey in which they reported the frequency of help they provide for their family member with CF during routine care,...
The informational needs of the growing population of adults with cystic fibrosis (CF) have not been previously assessed.Adults with CF enrolled in the Project on Adult Care in CF (PAC-CF) completed a survey including 22 items in which information topics were rated on the importance of receiving more information and the satisfaction with sources of information. Unmet needs were defined as those topics...
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