Experience of care from the perspective of individuals with cystic fibrosis and families: Results from 70 CF Foundation accredited programs in the USA

Introduction: In 2012 and 2013, 30 adult and 40 pediatric CF Foundation-accredited programs across the United States recruited patients and families to complete an experience of care survey. This paper reports the positive attributes and the opportunities for improvement in CF care from the perspective of individuals with CF and families. Methods: Patients and families completed the survey by web, interactive voice response, or with the help of a telecommunication professional. Funnel plot was used to determine positive attributes and improvement opportunities. Chi-square tests and 95% confidence intervals were used to determine differences between group and logistic regression models were used to determine factors associated with the experience of "best" care. Results: 2090 adults with CF or parents of children with CF, 29% of the 7113 potential respondents, completed a survey. Both the adult and pediatric survey respondents reported the same 5 positive attributes of experience of care: courtesy and respect shown, easy to understand explanations, involved in decision-making, their questions were answered, and enough time with providers. Potential areas for improvement included assessing mental health and improving inpatient hospital staff's knowledge of CF. In general, results from the pediatric survey were significantly better than the adult survey. Variables predictive of "best" care experience from both adult and pediatric respondents were treatments always working and two self-care factors of finding information and working out solutions. Conclusion: The CF Foundation developed an experience of care survey to systematically collect and learn directly from individuals with CF and families about their impressions and observations of CF health care delivery. Respondents reported positive and respectful experiences and improvement opportunities were identified, which can help programs target specific areas to enhance the care experience.