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Studies measuring psychological distress in individuals with cystic fibrosis (CF) have found high rates of both depression and anxiety. Psychological symptoms in both individuals with CF and parent caregivers have been associated with decreased lung function, lower body mass index, worse adherence, worse health-related quality of life, more frequent(More)
Good quality clinical trials are essential to inform the best cystic fibrosis (CF) management and care, by determining and comparing the effectiveness of new and existing therapies and drug delivery systems. The formal inclusion of quality of life (QoL) as an outcome measure in CF clinical trials is becoming more common. Both an appropriate QoL measure and(More)
OBJECTIVE This study examined the role of coping in explaining health-related quality of life (HRQoL) in cystic fibrosis (CF). METHODS Coping, quality of life, and clinical variables were assessed. The CF Coping Scale measures four ways of coping: optimistic acceptance, hopefulness, distraction, and avoidance. The Cystic Fibrosis Quality of Life(More)
UNLABELLED There is limited research exploring the pain experience of boys and young men with Duchenne Muscular Dystrophy. METHODS We conducted a mixed-methods pilot study to assess the feasibility of using particular measures of pain, pain coping and quality of life within semi-structured interviews with boys and young men with Duchenne Muscular(More)
OBJECTIVE As a health-related quality of life (HRQOL) measure, the LupusQoL is a reliable and valid measure for adults with systemic lupus erythematosus (SLE). This study evaluates the responsiveness and minimal important differences (MIDs) for the 8 LupusQoL domains. METHODS Patients experiencing a flare were recruited from 9 UK centers. At each of the(More)
OBJECTIVES The insights that people with cystic fibrosis have concerning their health are important given that aspects of health-related quality of life (HRQoL) are independent predictors of survival and a decrease in lung function is associated with a decrease in HRQoL over time. Cross-sectional data suggest that key variables, other than lung function,(More)
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