J. Abbott1, T. Havermans2, S. Jarvholm3, E. Landau4, Y. Prins5, U. Smrekar6, D. Staab7, L. Verity1, M. Verkleij8 on behalf of the ECFS Mental Health Working Group.


1University of Central Lancashire, UK,

2UZ Leuven, Belgium,

3Sahlgrenska Academy, Sweden,

4Schneider Children’s Medical Center of Israel,

5Yvonne Prins Coaching en Begeleiding, Netherlands,

6Medical University of Innsbruck, Austria,

7Charite University, Berlin,

8Amsterdam UMC University Medical Centers.


What was your research question?

In 2015, an international committee on mental health published guidelines which aimed to help health professionals identify and treat depression and anxiety in CF. We wanted to know whether health professionals working in CF Centres across Europe have been able to include mental health screening and follow-up treatment in CF care.

Why is this important?

People with CF and their caregivers can experience depression and anxiety. There is evidence that this can be damaging to CF disease and those who experience depression may spend more time in hospital. It is also difficult for people to look after themselves or for caregivers to look after them if their mood is low. The guidelines suggest that patients (age 12 and over) and their caregivers are offered mental health screening; completing two short questionnaires at their annual review. There are different treatment options for the health professional to follow depending on the levels of depression and/or anxiety reported.

What did you do?

The European Cystic Fibrosis Society has a Mental Health Working Group. They are responsible for translating the guidelines and patient information into many European languages. We wanted to know what progress was being made and the views of CF health professionals, two years after the guidelines were published. Specifically, we asked (1) whether CF Centres were aware of the guidelines and whether they agreed with them, (2) whether they had started to screen and provide mental health care and (3) the successes and barriers of incorporating mental health care into CF care. We asked these questions in a survey which was emailed to 300 CF Centres.

What did you find?

Responses to the survey were received from 187 CF Centres across 28 countries.  Sixty-two percent were aware of the guidelines and the vast majority agreed with them. Fifty percent had started to screen for depression and anxiety. Approximately 6000 patients and 2000 caregivers had been screened: 551 people with CF or their caregivers had been offered treatment for moderate/severe difficulties and 84 people received urgent specialist attention because they had suicidal thoughts. Health professionals reported that screening has increased the awareness of mental health, helped to destigmatize it, and made it easier to talk to patients and caregivers.

What does this mean and reasons for caution?

The true number of patients and caregivers screened and treated for depression and anxiety are likely to be more than those reported here. These numbers are only based on those who responded to the survey, but they do highlight the rapid commitment to mental health care in CF in both Western and Eastern Europe. However, barriers to mental health screening included lack of time and the lack of qualified mental health professionals. Further mental health training for CF health professionals is planned.

What’s next?

The Mental Health Working Group will address the difficulties of mental health screening raised by CF health professionals. We are translating patient information into more languages so that mental health care is feasible in all CF Centres across Europe. In the future we will seek the views of people with CF and their caregivers.


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