Patient-centered care of hospitalized adults with cystic fibrosis-a collaboration between the CF care team and the patient family advisory board

ABSTRACT

Background: The Inova Adult CF Program developed a Patient Family Advisory Board (PFAB) to facilitate patient and family centered care. The PFAB has been actively involved in providing input on multiple issues and expressed interest in initiating and actively participating in a quality improvement project related to CF care. Together with the CF care team, it was decided to focus on inpatient care. Methods: We identified inpatient respiratory care as an area of focus. For baseline data, we developed a survey regarding inpatient experience of respiratory care. Three primary observations emerged as common themes 1. Desire for a more personalized airway clearance schedule 2. Desire to be more independent with airway clearance regimen 3. Concern that nebulizer sets were not consistently cleaned in accordance with CF guidelines Based on this, the PFAB and CF team evaluated ways to provide personalized scheduling and administration of respiratory medications and chest physiotherapy. A respiratory therapy preference card was created to address this. It includes 1) preferences of timing of airway clearance, 2) preferred nebulized medicines and airway clearance modalities, 3) preferred level of supervision with airway clearance. Next, a combined CF provider-patient in-service for respiratory therapists (RT) was conducted to facilitate an open dialogue with regards to integration of the preference card. Implementation of the preference card involves the following the preference card is included in a customized CF admissions folder, which is given to the CF patient on admission. The CF patient fills out the card and gives it to the respiratory therapist, who incorporates these preferences into their workflow. For monitoring, we will check in with the patients during the hospitalization to determine if the protocol was followed and if the respiratory medications were administered as per the preferred schedule. A check-in with RT would also be completed to determine any barriers. Data Baseline data were collected through a pre-intervention survey sent to all CF adults hospitalized in the prior two years. A post-intervention survey is planned after the intervention to asses for changes in respiratory care satisfaction scores. Unfortunately, implementation of our project has been delayed by the COVID-19 pandemic. Conclusions: Partnership between the PFAB and care team helps direct quality improvement initiatives. The PFAB provides unique insight and can be engaged to help develop, implement, and study quality improvement initiatives to help provide improved care.