- Email: [email protected]
Mind the mind: learning from the cystic fibrosis community
Editorial
The phrase “healthy in body and mind” is well known, but when treating a disease it is often, quite naturally, the former that is given precedent in terms of a physician’s and patient’s focus. However, the diagnosis, treatment, and management of a disease, especially when life threatening and chronic, can have a profound effect on a patient’s state of mind, as well as associated effects on carers, friends, and family. This is particularly pertinent for people living with cystic fibrosis who can face a barrage of appointments, undergo several hours of daily treatments, and have an uncertain future. Therefore the report in Thorax on Oct 9, 2015, of the findings of an international committee on mental health in cystic fibrosis is important and timely. Life expectancy has increased with improvements in the treatment and management of cystic fibrosis, and about half of patients now live past 40 years of age. However, studies have documented rates of depression ranging from 8% to 29% in children and adolescents and from 13% to 33% in adults. Anxiety has been noted in about a third of adults. Furthermore, because sufferers are diagnosed with cystic fibrosis in childhood, effects of the transition with the disease through adolescence to adulthood must be considered, as well as the tricky navigation from paediatric to adult health-care services. Like healthy teenagers, problems with body image when approaching adolescence can emerge and patients with cystic fibrosis can be smaller than average because of the associated difficulties in feeding. Physical health and mental health are intertwined, and disentangling the cause and effect of one from the other is impossible. Increased scores for depression and anxiety have been noted to negatively affect body-mass index and quality of life, and to increase health-care costs. A 2014 report in BMC Pulmonary Medicine in 473 patients with cystic fibrosis aged 12–53 years suggested a link between a decline in lung function and the presence of depression. The investigators called for a more tailored approach to tackle depression with consideration of polypharmacy and drug-to-drug interactions. This report used data from the TIDES study, a large international survey that provided baseline prevalence data for depression and anxiety in both patients and their parent carers, data that set a standard by which future progress can be assessed. These findings have also helped to identify clinical risk groups that can inform future referral patterns. www.thelancet.com/respiratory Vol 3 November 2015
The latest committee report on mental health, supported by the US Cystic Fibrosis Foundation and European Cystic Fibrosis Society, was developed over 2–3 years by a 22-member multidisciplinary committee divided into four working groups of screening, psychological interventions, pharmacological treatments, and implementation and future research. The group’s key recommendation was to screen for depression and anxiety yearly in patients older than 12 years and in their parent carers, and for appropriate measures to be taken when concerns were identified. The committee assessed the evidence base and developed 15 key recommendations. These ranged from the setting up of educational training together with the development of coping and behavioural skills, plans to address suicide ideation, implementing appropriate psychological and pharmacological treatment after screening, and referral of a child with cystic fibrosis aged 7–11 years for screening if a parent had increased depression or anxiety scores. The committee also called for the inclusion of screening data in national registries. As this report highlights, a one-size-fits-all approach is unlikely to be successful. Certain subsets of patients will be at increased risk of developing mental health issues. For example, a comment in this issue of The Lancet Respiratory Medicine discusses psychosocial care for patients infected with Mycobacterium abscessus. These patients can undergo more stringent so-called enhanced infection control procedures, and might not be eligible for lung transplantation because of a poorer associated outcome or deterioration in clinical status. However, social media support, where patients can learn from each other’s experiences, can help prevent feelings of isolation, and the comment authors also suggested effective communication between patients, carers, and healthcare teams, as well as anticipation and awareness of the possibility of increased anxiety and depression in any given situation, as key psychological coping strategies. Through these consensus documents, discussions, and recommendations, the cystic fibrosis research community is directly tackling the mental wellbeing of patients and is setting a blueprint to predict, recognise, and address mental health issues in other chronic diseases. Many communities will benefit and learn from such an example. ■ The Lancet Respiratory Medicine
Russell Kightley/Science Photo Library
Mind the mind: learning from the cystic fibrosis community
For the committee report see Thorax 2015; published online Oct 9, 10.1136/ thoraxjnl-2015-207488 For the paper on depression and lung function decline see BMC Pulmonary Medicine 2014; 14: 205 For the TIDES study see Thorax 2014; 69: 1090–97 For more on psychosocial care for patients infected with Mycobacterium abscessus see Comment page 832
823
The phrase “healthy in body and mind” is well known, but when treating a disease it is often, quite naturally, the former that is given precedent in terms of a physician’s and patient’s focus. However, the diagnosis, treatment, and management of a disease, especially when life threatening and chronic, can have a profound effect on a patient’s state of mind, as well as associated effects on carers, friends, and family. This is particularly pertinent for people living with cystic fibrosis who can face a barrage of appointments, undergo several hours of daily treatments, and have an uncertain future. Therefore the report in Thorax on Oct 9, 2015, of the findings of an international committee on mental health in cystic fibrosis is important and timely. Life expectancy has increased with improvements in the treatment and management of cystic fibrosis, and about half of patients now live past 40 years of age. However, studies have documented rates of depression ranging from 8% to 29% in children and adolescents and from 13% to 33% in adults. Anxiety has been noted in about a third of adults. Furthermore, because sufferers are diagnosed with cystic fibrosis in childhood, effects of the transition with the disease through adolescence to adulthood must be considered, as well as the tricky navigation from paediatric to adult health-care services. Like healthy teenagers, problems with body image when approaching adolescence can emerge and patients with cystic fibrosis can be smaller than average because of the associated difficulties in feeding. Physical health and mental health are intertwined, and disentangling the cause and effect of one from the other is impossible. Increased scores for depression and anxiety have been noted to negatively affect body-mass index and quality of life, and to increase health-care costs. A 2014 report in BMC Pulmonary Medicine in 473 patients with cystic fibrosis aged 12–53 years suggested a link between a decline in lung function and the presence of depression. The investigators called for a more tailored approach to tackle depression with consideration of polypharmacy and drug-to-drug interactions. This report used data from the TIDES study, a large international survey that provided baseline prevalence data for depression and anxiety in both patients and their parent carers, data that set a standard by which future progress can be assessed. These findings have also helped to identify clinical risk groups that can inform future referral patterns. www.thelancet.com/respiratory Vol 3 November 2015
The latest committee report on mental health, supported by the US Cystic Fibrosis Foundation and European Cystic Fibrosis Society, was developed over 2–3 years by a 22-member multidisciplinary committee divided into four working groups of screening, psychological interventions, pharmacological treatments, and implementation and future research. The group’s key recommendation was to screen for depression and anxiety yearly in patients older than 12 years and in their parent carers, and for appropriate measures to be taken when concerns were identified. The committee assessed the evidence base and developed 15 key recommendations. These ranged from the setting up of educational training together with the development of coping and behavioural skills, plans to address suicide ideation, implementing appropriate psychological and pharmacological treatment after screening, and referral of a child with cystic fibrosis aged 7–11 years for screening if a parent had increased depression or anxiety scores. The committee also called for the inclusion of screening data in national registries. As this report highlights, a one-size-fits-all approach is unlikely to be successful. Certain subsets of patients will be at increased risk of developing mental health issues. For example, a comment in this issue of The Lancet Respiratory Medicine discusses psychosocial care for patients infected with Mycobacterium abscessus. These patients can undergo more stringent so-called enhanced infection control procedures, and might not be eligible for lung transplantation because of a poorer associated outcome or deterioration in clinical status. However, social media support, where patients can learn from each other’s experiences, can help prevent feelings of isolation, and the comment authors also suggested effective communication between patients, carers, and healthcare teams, as well as anticipation and awareness of the possibility of increased anxiety and depression in any given situation, as key psychological coping strategies. Through these consensus documents, discussions, and recommendations, the cystic fibrosis research community is directly tackling the mental wellbeing of patients and is setting a blueprint to predict, recognise, and address mental health issues in other chronic diseases. Many communities will benefit and learn from such an example. ■ The Lancet Respiratory Medicine
Russell Kightley/Science Photo Library
Mind the mind: learning from the cystic fibrosis community
For the committee report see Thorax 2015; published online Oct 9, 10.1136/ thoraxjnl-2015-207488 For the paper on depression and lung function decline see BMC Pulmonary Medicine 2014; 14: 205 For the TIDES study see Thorax 2014; 69: 1090–97 For more on psychosocial care for patients infected with Mycobacterium abscessus see Comment page 832
823