To support the development of the instruments, coded expressions of the CF effect were organized into 59 impact concepts for possible inclusion in the PRO scale. For the IRA, four double-coding transcripts were evaluated, with an agreement observed between two programmers for conceptual codes associated with text segments between two programmers. With approximately 8227 words of narrative text per transcription and 4005 unpublished codes, the results indicate a GREAT IRA. Given the innovative nature of the PHARE-M PROGRAMME in France, the cultural differences and the different organizational contexts of the CFCs, an assessment of the impact of PHARE-M on the CFCs being tested was expected after three years to continue enrollment in the programme. Compared to other CFCs, will it show positive changes in patient outcomes in the EFA group active in the PHARE-M program? What is the impact on care management in 2015? Has there been enough time to show improvements in both areas? In which contexts is the PHARE-M effect most important? The PHARE-M Performance research project, launched as part of a tender for projects of the French Ministry of Health and selected for funding in December 2012, aims to answer these questions. Our current position is that activity monitors such as SenseWear or ActiGraph offer informed choices to facilitate a full assessment of physical activity and should be presented as a minimal report on the dimensions of physical activity, including energy consumption, number of steps and time spent at different sedentary intensities and times. The DigiWalker pedometer offers an informed choice of a relatively inexpensive method to measure a certain measure of physical activity. The HAES is an informed selection of questionnaires to assess physical activity. There is not enough data to recommend the use of one log over another.
Future research should focus on providing additional evidence of the klinimetric properties of these instruments and new physical activity assessment instruments and further research on the added value of assessing physical activity in CF. This is a secure anonymous registry, sponsored by the Cystic Fibrosis Trust, which records information about the health of people with cystic fibrosis.