Key findings of the US Cystic Fibrosis Foundation's clinical practice benchmarking project

• Published in: BMJ quality & safety Vol. 23; no. Suppl 1; pp. i15 - i22
• Main Authors: Boyle, Michael P, Sabadosa, Kathryn A, Quinton, Hebe B, Marshall, Bruce C, Schechter, Michael S
• Format: Journal Article
• Language: English
• Published: England BMJ Publishing Group LTD 01.04.2014
• Subjects: Adult; Benchmarking; Body mass index; Child; Children & youth; Cystic fibrosis; Cystic Fibrosis - therapy; Demographics; Empowerment; Female; Foundations; Health administration; Health Planning - organization & administration; Humans; Male; Methods; Outcome Assessment (Health Care); Patient Care - standards; Patient Care - trends; Patient Care Team - organization & administration; Qualitative research; Quality Improvement; Registries; Self evaluation; Studies; United States; United States; Attitudes; Healthcare Quality Improvement; Chronic Disease Management
• ISSN: 2044-5415; 2044-5423
• DOI: 10.1136/bmjqs-2013-002369

Benchmarking is the process of using outcome data to identify high-performing centres and determine practices associated with their outstanding performance. The US Cystic Fibrosis Foundation (CFF) Patient Registry contains centre-specific outcomes data for all CFF-certified paediatric and adult cystic fibrosis (CF) care programmes in the USA. The CFF benchmarking project analysed these registry data, adjusting for differences in patient case mix known to influence outcomes, and identified the top-performing US paediatric and adult CF care programmes for pulmonary and nutritional outcomes. Separate multidisciplinary paediatric and adult benchmarking teams each visited 10 CF care programmes, five in the top quintile for pulmonary outcomes and five in the top quintile for nutritional outcomes. Key practice patterns and approaches present in both paediatric and adult programmes with outstanding clinical outcomes were identified and could be summarised as systems, attitudes, practices, patient/family empowerment and projects. These included: (1) the presence of strong leadership and a well-functioning care team working with a systematic approach to providing consistent care; (2) high expectations for outcomes among providers and families; (3) early and aggressive management of clinical declines, avoiding reliance on ‘rescues’; and (4) patients/families that were engaged, empowered and well informed on disease management and its rationale. In summary, assessment of practice patterns at CF care centres with top-quintile pulmonary and nutritional outcomes provides insight into characteristic practices that may aid in optimising patient outcomes.