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European Cystic Fibrosis Society-Clinical Trials Network & Cystic Fibrosis Europe: Quality of Life/Patient Reported Outcome Measures/Symptom Reported Tools Survey
Dear ECFS CTN Investigators/Clinical Psychologists/Members/Person with CF/Caregiver (Parent/Partner),
The following survey takes between 2 to 3 minutes to complete, your help would be greatly appreciated.
The European Cystic Fibrosis Society-Clinical Trial Network (ECFS CTN) Standardisation Committee and Cystic Fibrosis (CF) Europe are currently assessing Quality of Life(QoL)/Patient Reported Outcome Measures(PROMs)/Symptom Reported Tools in Cystic Fibrosis currently used during routine care, clinical visits/assessments.
Many clinics use a variety of both generic and CF-specific quality of life and symptom-report measures and tools and we are keen to assess those most commonly in use during routine care. Thank you for completing this short survey, your responses will be anonymised and held in the strictest of confidence, thank you for helping us to assess this important aspect of patient and family care.
We will email all sites a completed report of results once the survey has been completed. This report will also be made available through the patient organisations via CF Europe.