European CF Conference 2017 Sevilla

    Verkleij Marieke, PhD | VU UMC Amsterdam, Department of Pediatric Psychology | 29 augustus 2017 | 7.1.17.178CO

The 40th European Cystic Fibrosis Conference (ECFS) was held in Seville (Spain) from 6-10 June 2017. I was chairing the symposium “Promoting resilience and psychological wellbeing” and workshop “A world full of emotions (mental health) in Cystic Fibrosis”. As a psychologist and member of the ECFS Mental Health Working Group, I joined the Annual Mental Health Working Group meeting during the conference.

Background: Symptoms of anxiety and depression have previously been shown to be 2-3 times more frequent in pediatric Cystic Fibrosis (CF) patients and their primary caregivers, compared to community samples1. Therefore, the International Committee on Mental Health (ICMH) in CF has set up recommendation statements for mental health screening and psychosocial interventions to be implemented in CF Centers internationally.2 

Aims and objectives of the ECFS Mental Health Working Group:

1) To develop a multidisciplinary network of clinicians and researchers to facilitate and support the dissemination and implementation of the Mental Health Guidelines.

2) To monitor the implementation of Mental Health Screening and identify the range of clinical practice and treatment referral pathways across Europe.

3) To identify driving and restraining themes that CF teams encounter when implementing the guidelines to inform resource issues and best practice.

4) To determine patient/parent and clinician-reported effectiveness/impact of Mental Health Screening.

5) To incorporate Mental Health variables into the ECFS Registry.

6) To promote excellence in Mental Health research across the European CF Community.

As a member of the MH working group and “country captain” of the Netherlands, I am participating in the Evaluation & Research Subgroup. A survey has been developed and will be piloted using Survey Monkey prior to distribution to European CF Centers (end of 2017). The results of the survey will provide a current snapshot of Mental Health screening uptake, referral pathways and interventions being undertaken across Europe. An understanding of the barriers and facilitators of implementing the MH Guidelines will inform our future activities. Also, a survey to evaluate the MH Guidelines from the patient and caregiver perspective will be undertaken.

The Resources & Education Subgroup has disseminated the MH Guidelines across Europe and set up the website. A database of Health Professional contacts and Patient Associations for European countries has been developed. It also provides information on language translations available for the screening tools. Currently we have recruited representation from 23 European countries and we aim to engage 35 countries.

1Quittner, A. L., Goldbeck, L., Abbott, J., Duff, A., Lambrecht, P., Solé, A., … Saez-Flores, E. (2014). Prevalence of depression and anxiety in patients with cystic fibrosis and parent caregivers: results of The International Depression Epidemiological Study across nine countries. Thorax; 69: 1090–1097

2Quittner, A. L., Abbott, J., Georgiopoulos, A. M., Goldbeck, L., Smith, B., Hempstead, S. E., … Elborn, S. (2015). International Committee on Mental Health in Cystic Fibrosis: Cystic Fibrosis Foundation and European Cystic Fibrosis Society consensus statements for screening and treating depression and anxiety. Thorax; 0: 1–9

Keyword: ECFC 2017 Cystic Fibrose

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