Should the physiotherapy outcomes airway clearance, physical activity and fitness be recorded on the Australian Cystic Fibrosis Data Registry? A consensus approach

BACKGROUND: Physiotherapy is a cornerstone of cystic fibrosis (CF) management, yet the Australian CF Data Registry (ACFDR) currently does not record physiotherapy-related data. This study aimed to gather opinions from lead Australian CF physiotherapists regarding the importance and feasibility of collecting physiotherapy-related data on the ACFDR. METHODS: A three-round online Delphi survey was conducted to gather expert stakeholder opinion and consensus agreement. Lead physiotherapists from all 23 Australian CF centres were invited to participate. Round one explored the potential benefits, barriers and importance of recording three physiotherapy-related domains on the ACFDR: airway clearance, physical activity and fitness. Subsequent rounds were developed based on the findings from the previous round and sought consensus (80% agreement) for the inclusion of physiotherapy-related data on the ACFDR and for the most appropriate methods of collecting such data. RESULTS: The response rate was > 80% for all rounds. Participants agreed that collection of airway clearance, physical activity and fitness data on the ACFDR was important and feasible. Findings suggested that airway clearance and physical activity should be collected using self-reported questionnaires, while fitness should be measured using a field-based test. CONCLUSIONS: Australian lead CF physiotherapists believe that collection of airway clearance, physical activity and fitness on the ACFDR is important and feasible. Future work is needed to pilot the data collection procedure to examine its feasibility in real-world clinical settings. This study demonstrates how Delphi methodology can provide a contemporary summary of expert clinicians’ opinion that may underpin nation-wide health service improvement. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s12890-021-01669-2.