- Email: [email protected]
The power of mental adaptation to genetic abnormality
Journal of Cystic Fibrosis 15 (2016) 559 – 560 www.elsevier.com/locate/jcf
The power of mental adaptation to genetic abnormality
Life expectancy for individuals with CF has dramatically improved in the past decades, both in terms of duration and quality of life. Thirty years ago, CF was a chronic pediatric condition with a high probability of an early death during childhood or adolescence. Currently, a newborn child with CF, receiving sufficient medical care, has a high probability of survival into middle adulthood [1]. Many adults with CF reach independence from their family of origin, have children and enter a professional career. Unexpectedly, the first seniors with CF are reaching their regular retirement pension. This enormous improvement in the prospects of living with CF is due to two major sources; medical progress and individual adaptability. Both factors are crucial to achieve optimal individual health outcomes. There is evidence from a recent large-scale international epidemiological study [2] that symptoms of depression and anxiety are elevated in patients with CF compared to healthy peers, and these symptoms are extremely elevated in parental caregivers. However, the majority of individuals with CF and their caregivers are doing well. Psychological endpoints have demonstrated a successful emotional and behavioral adaptation to CF [3], despite the challenges of a disease that remains life-threatening with time-consuming treatment demands. So, how do people with CF and their caregivers actually cope with disease-related adversities? How can they achieve a normal and satisfactory life, comparable to their healthy peers? Psychosocial research published in this issue of the Journal, addresses important questions around emotional and behavioral adaptation to CF. Mitmansgruber and colleagues [4] conducted a questionnaire-based survey among 57 adult patients with CF which explored factors of resilience. Resilience is a psychological construct that describes a person's capability and competence to cope with adversities. The study found that perceived personal competence was consistently, and closely, associated with a better health-related quality of life. Personal competence comprises beliefs in one's own ability to cope with difficult situations. Individuals who report high personal competence have perceived control over their current and future disease-related problems. These findings emphasize that the patients' way of thinking about their own adaptability influences their wellbeing and functioning.
However, is it wise to disclose the disease to everybody? Or do patients with CF have to face disadvantages from open communication about their diagnosis and their disease-related challenges? Borschuk et al. [5] explored whether, and to whom, patients with CF had disclosed their disease. In a study of 128 adolescents and adults, who participated in an adherence intervention, they found that almost every patient had disclosed her or his CF to romantic partners and close friends; whereas disclosure to bosses and colleagues was more limited, probably due to anticipated problems in the job. People with CF reported difficulties in talking about their illness and especially having to do treatment in front of others. Interestingly, the study found that disclosure is linked to more positive psychosocial outcomes. Social support, employment, and medication adherence self-efficacy were identified as the three main psychosocial correlates of being able to comfortably discuss CF or perform CF treatments in front of others. These findings demonstrate that open communication about the disease may facilitate the patients' social integration and access to social support. If patients are not able or willing to disclose their disease, they might end up isolated from others. Moreover, they might be at risk for non-adherent behavior. More research is needed to identify appropriate strategies of disclosure and of creating opportunities for the performance of regular medical treatments, such as inhalation cycles, in the patients' school and work environments. Current interdisciplinary healthcare for people with CF is primarily aimed at the prevention of disease and disability, starting as early as the diagnosis is confirmed. Accordingly, the recent international mental healthcare consensus statements of the US Cystic Fibrosis Foundation and the European Society of Cystic Fibrosis [6] recommend preventative strategies such as ongoing patient education, supportive interventions to develop coping skills, and an annual screening of patients and caregivers for symptoms of depression and/or anxiety, to indicate the need for psychological and/or psychopharmacological interventions as early as possible. Developing personal competence and open communication about the disease might provide useful basic components of preventative interventions. Therefore, we need to further improve and evaluate our preventative programs to empower patients with CF and their
http://dx.doi.org/10.1016/j.jcf.2016.08.003 1569-1993/© 2016 European Cystic Fibrosis Society. Published by Elsevier B.V. All rights reserved.
560
The power of mental adaptation to genetic abnormality
caregivers, remembering that ‘there is no health without mental health’. References [1] MacKenzie T, Gifford AH, Sabadosa KA, Quinton HB, Knapp EA, Goss CH, et al. Longevity of patients with cystic fibrosis in 2000 to 2010 and beyond: survival analysis of the Cystic Fibrosis Foundation patient registry. Ann Intern Med Aug. 19 2014;161(4):233–41. [2] Quittner AL, Goldbeck L, Abbott J, Duff A, Lambrecht P, Solé A, et al. Prevalence of depression and anxiety in patients with cystic fibrosis and parent caregivers: results of The International Depression Epidemiological Study across nine countries. Thorax Dec. 1 2014;69(12):1090–7. [3] Besier T, Goldbeck L. Growing up with cystic fibrosis: achievement, life satisfaction, and mental health. Qual Life Res Dec. 2012;21(10):1829–35. [4] Mitmansgruber H, Smrekar U, Rabanser B, Beck T, Eder J, Ellemunter H. Psychological resilience and intolerance of uncertainty in coping with cystic fibrosis. J Cyst Fibros Dec. 2015;15(5):689–95.
[5] Borschuk AP, Everhart RS, Eakin MN, Rand-Giovannetti D, Borrelli B, Riekert KA. Disease disclosure in individuals with cystic fibrosis: association with psychosocial and health outcomes. J Cyst Fibros Mar. 2016;15(5):696–702. [6] Quittner AL, Abbott J, Georgiopoulos AM, Goldbeck L, Smith B, Hempstead SE, et al. 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 Jan. 2016;71(1):26–34.
Lutz Goldbeck University of Ulm, Clinic for Child and Adolescent Psychiatry/Psychotherapy, Krankenhausweg 3, 89075 Ulm, Germany E-mail address: [email protected]. 9 August 2016
The power of mental adaptation to genetic abnormality
Life expectancy for individuals with CF has dramatically improved in the past decades, both in terms of duration and quality of life. Thirty years ago, CF was a chronic pediatric condition with a high probability of an early death during childhood or adolescence. Currently, a newborn child with CF, receiving sufficient medical care, has a high probability of survival into middle adulthood [1]. Many adults with CF reach independence from their family of origin, have children and enter a professional career. Unexpectedly, the first seniors with CF are reaching their regular retirement pension. This enormous improvement in the prospects of living with CF is due to two major sources; medical progress and individual adaptability. Both factors are crucial to achieve optimal individual health outcomes. There is evidence from a recent large-scale international epidemiological study [2] that symptoms of depression and anxiety are elevated in patients with CF compared to healthy peers, and these symptoms are extremely elevated in parental caregivers. However, the majority of individuals with CF and their caregivers are doing well. Psychological endpoints have demonstrated a successful emotional and behavioral adaptation to CF [3], despite the challenges of a disease that remains life-threatening with time-consuming treatment demands. So, how do people with CF and their caregivers actually cope with disease-related adversities? How can they achieve a normal and satisfactory life, comparable to their healthy peers? Psychosocial research published in this issue of the Journal, addresses important questions around emotional and behavioral adaptation to CF. Mitmansgruber and colleagues [4] conducted a questionnaire-based survey among 57 adult patients with CF which explored factors of resilience. Resilience is a psychological construct that describes a person's capability and competence to cope with adversities. The study found that perceived personal competence was consistently, and closely, associated with a better health-related quality of life. Personal competence comprises beliefs in one's own ability to cope with difficult situations. Individuals who report high personal competence have perceived control over their current and future disease-related problems. These findings emphasize that the patients' way of thinking about their own adaptability influences their wellbeing and functioning.
However, is it wise to disclose the disease to everybody? Or do patients with CF have to face disadvantages from open communication about their diagnosis and their disease-related challenges? Borschuk et al. [5] explored whether, and to whom, patients with CF had disclosed their disease. In a study of 128 adolescents and adults, who participated in an adherence intervention, they found that almost every patient had disclosed her or his CF to romantic partners and close friends; whereas disclosure to bosses and colleagues was more limited, probably due to anticipated problems in the job. People with CF reported difficulties in talking about their illness and especially having to do treatment in front of others. Interestingly, the study found that disclosure is linked to more positive psychosocial outcomes. Social support, employment, and medication adherence self-efficacy were identified as the three main psychosocial correlates of being able to comfortably discuss CF or perform CF treatments in front of others. These findings demonstrate that open communication about the disease may facilitate the patients' social integration and access to social support. If patients are not able or willing to disclose their disease, they might end up isolated from others. Moreover, they might be at risk for non-adherent behavior. More research is needed to identify appropriate strategies of disclosure and of creating opportunities for the performance of regular medical treatments, such as inhalation cycles, in the patients' school and work environments. Current interdisciplinary healthcare for people with CF is primarily aimed at the prevention of disease and disability, starting as early as the diagnosis is confirmed. Accordingly, the recent international mental healthcare consensus statements of the US Cystic Fibrosis Foundation and the European Society of Cystic Fibrosis [6] recommend preventative strategies such as ongoing patient education, supportive interventions to develop coping skills, and an annual screening of patients and caregivers for symptoms of depression and/or anxiety, to indicate the need for psychological and/or psychopharmacological interventions as early as possible. Developing personal competence and open communication about the disease might provide useful basic components of preventative interventions. Therefore, we need to further improve and evaluate our preventative programs to empower patients with CF and their
http://dx.doi.org/10.1016/j.jcf.2016.08.003 1569-1993/© 2016 European Cystic Fibrosis Society. Published by Elsevier B.V. All rights reserved.
560
The power of mental adaptation to genetic abnormality
caregivers, remembering that ‘there is no health without mental health’. References [1] MacKenzie T, Gifford AH, Sabadosa KA, Quinton HB, Knapp EA, Goss CH, et al. Longevity of patients with cystic fibrosis in 2000 to 2010 and beyond: survival analysis of the Cystic Fibrosis Foundation patient registry. Ann Intern Med Aug. 19 2014;161(4):233–41. [2] Quittner AL, Goldbeck L, Abbott J, Duff A, Lambrecht P, Solé A, et al. Prevalence of depression and anxiety in patients with cystic fibrosis and parent caregivers: results of The International Depression Epidemiological Study across nine countries. Thorax Dec. 1 2014;69(12):1090–7. [3] Besier T, Goldbeck L. Growing up with cystic fibrosis: achievement, life satisfaction, and mental health. Qual Life Res Dec. 2012;21(10):1829–35. [4] Mitmansgruber H, Smrekar U, Rabanser B, Beck T, Eder J, Ellemunter H. Psychological resilience and intolerance of uncertainty in coping with cystic fibrosis. J Cyst Fibros Dec. 2015;15(5):689–95.
[5] Borschuk AP, Everhart RS, Eakin MN, Rand-Giovannetti D, Borrelli B, Riekert KA. Disease disclosure in individuals with cystic fibrosis: association with psychosocial and health outcomes. J Cyst Fibros Mar. 2016;15(5):696–702. [6] Quittner AL, Abbott J, Georgiopoulos AM, Goldbeck L, Smith B, Hempstead SE, et al. 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 Jan. 2016;71(1):26–34.
Lutz Goldbeck University of Ulm, Clinic for Child and Adolescent Psychiatry/Psychotherapy, Krankenhausweg 3, 89075 Ulm, Germany E-mail address: [email protected]. 9 August 2016