(100) Improving the Experience for Patients and Families with New Diagnoses of Cystic Fibrosis

Background: Problem: Patients and families with new diagnoses of cystic fibrosis (CF) often feel overwhelmed and frightened during their initial clinic visits. Our CF team felt that there was opportunity to improve the experience for patients and families with new diagnoses of CF. Survey data confirmed that patients and families with new diagnoses had suboptimal experiences during their initial visits to our center.



Aim: To increase the rate of patients and families reporting strong satisfaction in all areas of being a new patient to our center.

Methods: We assembled a multidisciplinary team of attending and fellow physicians, nurses, and social workers. We first distributed surveys to families of patients with new diagnoses of CF at our center over the past two years. They survey was used to assess current impressions of families’ experiences, identify areas for improvement, and to help track progress over time. We then used quality improvement methods to define current processes, identify key drivers for improvement in the family experience, and identify possible interventions for improvement.

Results: Baseline survey data showed varying levels of satisfaction for new patients/families. Specific areas of low satisfaction included the sweat testing process, logistics with finding and moving through facilities, and the amount of information provided at the initial visit. We tested multiple interventions for improving the patient and family experience through PDSA cycles. Successful changes that we implemented included family welcome baskets and educational binders, increased pre-visit planning by the CF team, improving logistics of the sweat testing process, How to Contact and Frequently Asked Questions sheets for families, and checklists for providers for covering educational topics. While we are still collecting data to assess for overall improvements, initial results are promising.

Conclusions: A standardized approach to identify weaknesses and improve care team processes can improve the experience for patients and families with new diagnoses of CF.

Acknowledgements: This project was conducted through the support of the CF Foundation VIP-F7 program.

References: