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Table 1 List of profiles

From: Collaborative research protocol to define patient-reported experience measures of the cystic fibrosis care pathway in France: the ExPaParM study

Paediatric

P1 = patient between 0 and 5 years

P2 = patient between 6 and 11 years

P3 = patient between 12 and 15 years

P4 = patient > 15 years and < 18 years (adolescents)

P5 = patient who has changed CF centre in the last two years

P6 = patient who received a CFTR modulator/potentiator

P7 = minor patient diagnosed with COVID-19

P8 = minor patient in the paediatric transplant process

Adults

P10 = patient who came to the adult centre following transition of care between 18 and 22 years of age

P11 = patient with late diagnosis in the last 4 years

P12 = 22–26-year-old patient stabilised at CF centre

P13 = patient with complications and progression of disease severity

P14 = patient travelling abroad for > 3 months in the last 3 years

P15 = patient planning to have a child or in the process of MAP

P16 = patient with children

P17 = patient who received a CFTR modulator/potentiator

P18 = adult patient diagnosed with COVID-19

P19 = patient without major complications following transplant

P20 = patient with long-term complications following transplant