The impact of transforming healthcare delivery on cystic fibrosis outcomes: a decade of quality improvement at Cincinnati Children’s Hospital

Abstract

BackgroundIn 2001, Cincinnati Children's Hospital embarked on a journey to improve healthcare delivery to patients with cystic fibrosis (CF). Data from the Cystic Fibrosis Foundation National Patient Registry revealed our below-average clinical outcomes, prompting us to initiate improvement interventions.ObjectiveTo improve clinical outcomes for patients with CF through a comprehensive quality-improvement approach directed at increasing patient centredness and improving healthcare delivery.InterventionsIn 2001, we shared our below-average outcomes with patients, families and care providers. We instituted a quality-improvement steering committee with parental and hospital leadership, and our data-management support was restructured to provide real-time clinical data to monitor our progress. In 2002, our weekly chart conference changed to a prospective planning session and individualised daily schedules were created for inpatients. In 2003, an influenza vaccination campaign was initiated and our infection-control practices were redesigned. In 2005, best-practice guidelines were developed for airway-clearance therapy. In 2007, evidence-based clinical algorithms were designed and implemented and key care-team members were added.MeasurementsPrimary outcome measures were median forced expiratory volume in 1 s per cent predicted (age range 6–17 years) and median body mass index percentile (age range 2–20 years).ResultsFrom 2000 to 2010, median forced expiratory volume in 1 s increased from 81.7% to 100.1% predicted and median body mass index increased from the 35th to the 55th centile.DiscussionBy focusing on specific outcomes, empowering families and patients, effectively using data, and standardising care processes, we transformed the culture and delivery of care for our patients with CF and learned valuable lessons potentially translatable to other chronic-care providers.

Dynamic predictive probabilities to monitor rapid cystic fibrosis disease progression

“…A single‐center study that defined rapid decline as a decrease in FEV 1 of more than 10% predicted within the prior 12 months from the maximum observed FEV 1 showed that subsequently treating patients according to this decision rule corresponded to mean improvements in overall FEV 1. A similar study at another CF center corroborated these findings . Early detection of rapid decline or its impending onset would enable early treatment, and potentially prevention.…”

Improvements in Cystic Fibrosis Quarterly Visits, Lung Function Tests, and Respiratory Cultures

“…1 Quality improvement programs (QIPs) to advance the medical care of patients with CF are effective in improving outcomes and survival. 2 QIPs with published results include improving the treatment of inpatient pulmonary exacerbations, 3,4 airway clearance techniques, 4 quarterly visits, 5 and nutritional outcomes. 5,6 These programs were supported by the CF Foundation through the Leadership and Learning Quality Improvement Collaborative.…”

Value co-creation in healthcare through positive deviance

“…23 Although this is vital for the healthcare facility aspect of the cocreation process, identifying positive deviant patients may be a critical next step. Whilst the Cincinnati Children's hospital cystic fibrosis case study demonstrated a patient recruitment and partnership process for co-design, 37 the application of PD may have generated a higher value impact on co-creation through the synergy of positive deviant facilities with positive deviant patients and family members. The same process that was used to identify positive deviant facilities may be used to identify positive deviant patients.…”