ePS5.01 Patient reported outcome measures used in clinical practice: an ECFS CTN and CF Europe survey

Kate Hayes, Elise Lammertyn, Paola de Carli, Isabelle Sermet-Gaudelus

Research output: Contribution to conferencePosterpeer-review


Objectives: The European Cystic Fibrosis Society-Clinical Trial Network
(ECFS-CTN) and Cystic Fibrosis Europe (CF Europe), the federation of
national CF patient associations in Europe, undertook an online survey
from February to November 2019 to assess use of Patient Reported
Outcome Measures (PROMs)/symptom report and quality of life (QoL) tools
used during routine cystic fibrosis clinic assessment visits. The objective
was to establish the type and frequency of use of PROMs/symptom report
and QoL tools in clinical practice and elicit potential barriers to use.
Methods: The survey was sent to all CTN clinical sites in 2019 (43 CF
centres, located in 15 different countries throughout Europe), ECFS
members both within Europe and beyond and CF Europe Patient
Organisation members, to capture a representative sample of patients,
clinicians and allied health professionals’ use of these measures. The survey
was distributed using a popular qualitative research software platform,
email link and social media outreach.
Results: n = 231 respondents from 33 different countries included a crosssection of clinical specialists, people with CF, their carers and allied health
professionals. 59% of respondents did not routinely use PROMs during
clinical practice. A wide variety of different PROMs/symptom report and
QoL tools were employed across surveyed sites. Barriers to use included
lack of time during clinic assessments, lack of staff resources, a lack of
translations into multiple European languages and a lack of up to date,
standardised, disease-specific tools.
Conclusion: There is a lack of sensitive, standardised patient reported
outcome measures in the current context of new generation modulator
therapies in CF. This survey has been utilised to inform the ECFS CTN and CF
Europe Patient Advisory Group in the development of a new diseasespecific PROM and patient satisfaction questionnaire and this ongoing
project will enhance patient-clinician informed care in CF.
Original languageEnglish
Publication statusPublished - 2020


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