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. 

Best wishes,

Kate and Elise

Kate Hayes ECFS­ CTN (k.hayes@qub.ac.uk)
Elise Lammertyn CF Europe

Question Title

* 1. Your Country

Question Title

* 2. Respondent profile:

Question Title

* 3. Site Name/Institution/Clinical Centre where you are being followed:

Question Title

* 4. Please specify if Adult/Paediatric/Combined Centre below:

Question Title

* 5. Does your centre/or the centre you visit, use Quality of Life (QoL)/Patient Reported Outcome Measures (PROMs)/Symptom Report Tools (e.g. the CFQ-R questionniare) with patients during routine care, clinical visits?

Question Title

* 6. How often does your centre use/do you use QoL/PROMs during routine care?

Question Title

* 7. If Yes: what type of measure do you employ? (please tick all that apply):

Question Title

* 8. Do you use any of the following QoL/PROMs/Symptom Reported Tools? (please note that not all tools are CF specific; please tick all that apply):

Question Title

* 9. Following clinic visits/assessments, do you use/have you ever completed, a Patient Satisfaction Survey?

Question Title

* 10. Do you think a new PROM/tool would be useful?

Question Title

* 11. What topics would you like to see included in a new PROM/tool?

Question Title

* 12. Is there a particular target group you feel would benefit most from the creation of a new PROM/tool?

Question Title

* 13. Any other comments?

0 of 13 answered
 

T