Impact case study database

Several major impacts have emanated from the research, starting with policy development with stakeholders and culminating in improved mental well-being through the implementation of mental health screening in people with cystic fibrosis and their caregivers. Our vision has challenged conventional wisdom, stimulated debate and has changed hearts and minds regarding mental health care in cystic fibrosis around the world.

Changes in international policy development for mental health screening and treatment*

The ambition was to change international clinical practice by providing clinicians with clear guidance on mental health care. The International Committee in Mental Health consisted of 22 members: a core group directed aspects of guideline development, implementation and wrote the documentation. This included 3 from the US, 1 from Germany and Abbott from the UK, who directed the workgroup on implementation and future research. We collected feedback on the preliminary guidelines following distribution to the CF clinical community, patient and parent groups in Europe and the US. This feedback informed the final guidelines which included fifteen recommendations concerning prevention, screening, clinical assessment, psychological and pharmacological treatments. The guidelines were published in October 2015 [A]. They proposed that just as measuring lung function and weight are part of CF care, screening and treating depression and anxiety should become a routine part of CF care too. Annual mental health screening was recommended, using specific screening questionnaires, for all patients over 12 years old and their primary caregivers. The resulting guidelines publication highlighted the results of The International Depression and Anxiety Epidemiology Study and the Survey of Mental Health Care Delivery as the catalysts that led to their development [A].

A step by step guide for clinicians, regarding the systematic screening, diagnosis and management of depression and anxiety was also developed and published [B]. Publication of the guidelines corresponded with a US plenary conference presentation ‘There Is No Health Without Mental Health’ in Phoenix in 2015, attended by over 4,000 delegates from 42 countries. During this plenary session, the US CF Foundation pledged to fund mental health care. The Director of Clinical Communications commented “I left the plenary energized by the idea of including emotional wellness in the care for people with cystic fibrosis and their parent caregivers”.

Creating Mental Health Coordinator Jobs in the US

The US typically did not have clinical psychologists available to Cystic Fibrosis teams as they did in many European countries. However, as a result of our research, in 2015, the US Cystic Fibrosis Foundation provided initial funding for Mental Health Coordinator appointments in 84 CF Centres at a cost of USD8,600,000. Thirty-six further appointments were made in August 2016 and 18 in April 2018 [C2]. Subsequently, in 2020, maintenance funding was provided with a total investment of approximately USD20,000,000 [C]. The Mental Health Coordinator’s role was to undertake annual screening and patient follow-up, coordinate evidence-based treatment for depression and anxiety, develop and maintain a referral network of community-based mental health practitioners, serving as educator and liaison for mental health care in the CF centres. These appointments were imperative to improve the lives of people with CF and their caregivers.

Changes in stakeholder engagement

Building international capacity for working with different healthcare systems

Our goal was to implement mental health screening by using a unique structure of accredited and recognised CF Centres in Europe and the US. The US has different needs to Europe and different European countries have different needs based on their own healthcare systems. To facilitate far reaching international impact and ensure dissemination and implementation of the guidelines, in 2016, the US CF Foundation established a Mental Health Advisory Committee involving Abbott as the European representative. Similarly, the European CF Society approved a proposal written by Abbott to establish a Mental Health Working Group. The aim was to work with the whole European CF community including health professionals, patients and caregivers, and to translate the mental health guidelines and resources into numerous European languages. Abbott was Co-Lead on the project which ensured that the community disseminated and implemented the guidelines whilst also evaluating their effectiveness. Clinical psychologists were predominantly appointed as Country Captains for 29 European countries, and Australia, to assist with language translation and dissemination via national networks.

Resources for clinicians, people with CF and caregivers

The European Mental Health Working Group activities are hosted on the European Cystic Fibrosis Society (ECFS) website which was accessed by 3,944 people between October 2017 and October 2018 [D]. It provides easy access to resources developed by both the US and European Committees [E]. There is a ‘toolkit’ to facilitate implementation of annual mental health screening which includes the guidelines, the recommended anxiety, depression and suicide screening tools. There is also information for patients and caregivers and all these materials are available in at least 17 different languages. We have also helped to develop a range of training opportunities and professional networks. In the US a ‘drop box’ resource system has been developed and includes a clinician ‘Tracking Log’ for observing mental health changes. A valuable email peer support and information network for over 400 worldwide mental health professionals is also in operation.

Change in international clinical practice*

Annual mental health screening and appropriate treatment referrals for patients and caregivers have been implemented in CF Centres across the US, Canada, South America, Europe and Australia. In work driven by Abbott, the European Mental Health Working Group and the US Mental Health Advisory Committee surveyed CF mental health professionals to evaluate the implementation of the guidelines. The responses came from Mental Health Coordinators in the US [F], and from CF Centres across 29 European countries [G] and provided early indicators of effectiveness from the health professional’s perspective. By 2019, approximately 25,000 patients and carers were in screening programmes, approximately 10,000 individuals had been referred for treatment with almost 1,000 urgent referrals for suicide ideation. Clearly, these are underestimates as the data are based on a small timeframe and only those responding to surveys, but they highlight rapid commitment to the recommendations provided in the guidelines. With clear, standardised guidelines, it is notable that the prevalence of depression and anxiety is much greater than estimated in the original research. Clinicians reported the benefits of mental health screening to be (1) easier to initiate mental health conversations, (2) greater awareness of mental health among the CF multidisciplinary team, patients and caregivers, (3) quicker recognition of symptoms and (4) mental health becoming destigmatised [F,G]. Subsequently, mental health screening has been added to the US Adult Care Checklist. This encourages partnership between clinicians and people with CF and tracks clinical assessment and procedures recommended by the CF Foundation.

Training and mentoring to enable screening and follow-up care

Feedback from the Survey to evaluate implementation of the guidelines [G] also highlighted that mental health was viewed ‘as everyone’s business’ and not just the domain of mental health professionals. Consequently, training courses were provided for the entire multidisciplinary team including doctors, nurses, physiotherapists, pharmacists, dieticians and social workers. Numerous US and European courses have trained over 1000 health professionals in mental health screening, psychological and pharmacological treatments, with an Australian roadshow across six cities providing training to clinicians and sessions for patients and caregivers. To ensure sustained, quality mental health care, in 2018, the US Mental Health Advisory Committee set up mentoring programs for new Mental Health Coordinators and Peer Consultation Groups of clinicians who meet each month to discuss best practices in mental health screening, education and treatment.

Survey feedback from clinicians [F,G], people with CF and caregivers [H] have highlighted barriers to appropriate treatments. Specialist CF mental health practitioners are not widely available in the community and the risk of cross-infection often isolates people with CF. In the US, a pilot programme to assist patients and caregivers to use telehealth was successful and the CF Foundation has developed a comprehensive ‘how to’ guide of CF telehealth care delivery [I]. This has been invaluable during the Covid-19 pandemic.

Improvement in mental wellbeing reported on a global scale

Video testimonials produced by the US CF Foundation from patients, caregivers and health professionals highlight the powerful impact that mental health screening and appropriate care has had on their lives. As this adult with CF describes: “Depression, it’s always there, it’s kind of hibernating. Going to therapy is a part of fighting this disease, it’s hard to fight this disease every day”. A parent caregiver states that: “Mental health screening should start right from the beginning. There are key points within the CF life that absolutely rip you apart… if you are not healthy you cannot take care of your child” [J] .

Individual CF Centre evaluations confirm changes in wellbeing

Screening results are being tracked before and after treatment in numerous CF Centres globally to evaluate the effectiveness of mental health screening and care pathways. Some of these early results have been presented at international conferences and typically show that after five to eight sessions of psychological therapy, patients and caregivers reported significant decreases in anxiety and depression symptoms and an improvement in their wellbeing [K].

Patient and caregiver survey responses

Recently, the views and experiences of mental health screening and treatment were sought from people with CF and their caregivers. Results were posted on the ECFS Mental Health website in July 2020 as feedback to the CF community [H]. There was universal agreement from 474 patients and caregivers that mental health is an important aspect of their CF health; 97% believed they should be asked about mental health symptoms at their clinic appointments and 90% valued the conversation that took place immediately following screening. The voices of people with CF and their caregivers are poignant: An adult with CF said: “Following the death of two CF friends I kept thinking why I am still here. I was so down, so depressed. I didn’t feel worthy of being alive, but I was too much of a pansy to end my life suddenly. At my outpatient appointment I filled in the questionnaires asking me how I was mentally. My results were probably alarming because I then had a long chat with the psychologist about my suicidal thoughts. She was amazing and after seeing her for three months I have my mojo back. I feel life is worth living whatever CF throws at me.” [H] A parent caregiver said: **“Since my son was born 18 years ago, I have lived in fear that his life will be cut short. It is an ongoing nightmare and I feel frustrated and angry when he refuses to do his physio. He tells me not to worry but I can’t help it. I am so thankful for the support of the CF Centre who asked me about my mental health. These things really matter and help to make life easier” .

An International Award

It has been an amazing collaborative journey from the initial CF International Depression and Anxiety Epidemiological Study to global improvements in mental health care and patient and caregiver wellbeing. In November 2019, the US CF Foundation honoured Abbott with the Richard and Carolyn Mattingly Award for Leadership in Mental Health Care in the first year the award was open to researchers and clinicians outside the US.