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Table 1 Potential benefits and disadvantages/barriers to collection of information on the ACFDR

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

Domain Potential benefits Potential disadvantages/barriers
Airway clearance Would allow for comparison and bench-marking between centres in Australia and overseas (16)
Would facilitate analysis of outcomes of different airway clearance techniques (7)
Would assist identification of trends over time in chest physiotherapy practice (6)
Would allow for centralisation of data collection (6)
Would be useful for research purposes (4)
An increase in workload/time required (12)
A need to consider/maximise the validity and reliability of outcomes within and across centres (9)
A risk of data incompleteness (8)
Determining who would be responsible for collecting and entering data at each centre (e.g. physiotherapist vs admin staff) (4)
PA/exercise outcomes Would allow for comparison and benchmarking between centres in Australia (10)
Would assist the identification of trends in physical activity over time (5)
May be useful for research purposes (for example, understanding the role of physical activity as an adjunct/substitute for chest physiotherapy) (4)
Would allow for tracking of patients' progress (3)
Would allow patient and healthcare providers access to data (3)
An increase in workload and time required (14)
A risk of variation in validity and reliability of outcomes/regimes across centres/patients (14)
A risk of data incompleteness due to the burden of collecting data across Australia (4)
The specific environmental space and equipment requirements (4)
A risk of increasing patient time and treatment burden (1)
Fitness outcomes Comparison and benchmarking between centres (9)
Understanding of relationships between fitness and disease mortality/morbidity rate (5)
Tracking of patients' progress (4)
An increase in workload and time (11)
The large range of tests and the need to consider type, timing, reliability and validity when selecting the most appropriate test(s) (8)
A risk of data incompleteness due to the burden of collecting data across Australia (7)
A risk of variation in validity and reliability of outcomes/regimes across centres/patients (4)
The lack of relevance and clinical value of some fitness parameters (e.g. flexibility) (2)
The environmental space required to conduct a fitness test (1)
  1. Number of respondents in parentheses