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Cystic fibrosis

A Mobile Health Platform for Self-Management of Pediatric Cystic Fibrosis: Qualitative Study of Adaptation to Stakeholder Needs and Integration in Clinical Settings

Background: Cystic fibrosis (CF) is an inherited chronic condition that requires extensive daily care and quarterly clinic visits with a multidisciplinary care team. The limited exchange of information outside of the quarterly clinic visits impedes optimal disease self-management, patient engagement, and shared decision making.

Wed, 06/08/2022 - 16:58

Trajectories of caregiver burden in families of adult cystic fibrosis patients

Objectives: Little is known about the experience of family caregivers of adults with cystic fibrosis (CF). This information is important for the identification of caregivers at risk for burden. Methods: This was a longitudinal analysis of survey data obtained from caregivers of adult CF patients participating in an early intervention palliative care trial. Caregivers completed the validated Brief Assessment Scale for Caregivers (BASC) repeatedly over a 28-month period.

Fri, 06/07/2019 - 11:25

Parents and partners: lay carers' perceptions of their role in the treatment and care of adults with cystic fibrosis

Background.  Cystic fibrosis (CF) is the most common autosomal recessive genetic disease in Caucasian people, traditionally conceptualized as a condition whereby sufferers died in childhood. However, the current median survival age of 30 and a predicted median survival age of 40 for those born with the disease over the last decade ensure that families members will assist hospital staff with treatment and care well into most patients' adulthood.

Thu, 07/20/2017 - 15:18