Psychological interventions for individuals with cystic fibrosis and their families

Goldbeck, Lutz; Fidika, A.; Herle, Marion; Quittner, Alexandra L.

doi:10.1002/14651858.cd003148.pub3

Cited by 67 publications

(59 citation statements)

References 135 publications

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“…It is important in developing a collaborative care model for patients with CF that we consider the use of evidence-based interventions because they relate directly to staffing and delivery of quality mental health care. A 2014 Cochrane review of psychological interventions targeting psychosocial adjustment, adherence, and decision making for patients with CF found insufficient evidence to support the use of these interventions in part due to the heterogeneity of the studies [38]. In our study, less than half of the centers report using evidence-based interventions and those that did diverse interventions for multiple outcomes such as transition, adherence and parent training.…”

Section: Translating Collaborative Mental Health Care For Patients Wimentioning

confidence: 69%

Survey of collaborative mental health providers in cystic fibrosis centers in the United States

García

Oliva

Smith

2015

General Hospital Psychiatry

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Section: Translating Collaborative Mental Health Care For Patients Wimentioning

confidence: 69%

Survey of collaborative mental health providers in cystic fibrosis centers in the United States

García

Oliva

Smith

2015

General Hospital Psychiatry

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“…For an individual with CF it is vital that the interaction of normal life events, the psychological consequences of their disease and coping with complex therapies is considered holistically and managed appropriately [36,37]. Specific disciplines involved may include clinical psychologists, social workers and/or specialist nurses [34].…”

Section: Psychosocial Supportmentioning

confidence: 99%

Report of the European Respiratory Society/European Cystic Fibrosis Society task force on the care of adults with cystic fibrosis

et al. 2015

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The improved survival in people with cystic fibrosis has led to an increasing number of patients reaching adulthood. This trend is likely to be maintained over the next decades, suggesting a need to increase the number of centres with expertise in the management of adult patients with cystic fibrosis. These centres should be capable of delivering multidisciplinary care addressing the complexity of the disease, in addition to addressing the psychological burden on patients and their families. Further issues that require attention are organ transplantation and end of life management.Lung disease in adults with cystic fibrosis drives most of the clinical care requirements, and major lifethreatening complications, such as respiratory infection, respiratory failure, pneumothorax and haemoptysis, and the management of lung transplantation require expertise from trained respiratory physicians. The taskforce therefore strongly reccommends that medical leadership in multidisciplinary adult teams should be attributed to a respiratory physician adequately trained in cystic fibrosis management.The task force suggests the implementation of a core curriculum for trainees in adult respiratory medicine and the selection and accreditation of training centres that deliver postgraduate training to the standards of the HERMES programme. @ERSpublications Respiratory physicians, trained in adult CF management, should lead multidisciplinary teams taking care of patients http://ow.ly/SgRgj

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“…Psychological interventions or approaches to support CF people and their caregivers are of importance, even though their benefit is still unclear [35]. Adolescents and children with CF report a sense of vulnerability, loss of independence and opportunities, isolation, and disempowerment.…”

Section: Patient Health Outcomesmentioning

confidence: 99%

A model for active and healthy ageing with a rare genetic disease: cystic fibrosis

et al. 2016

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@ERSpublications Cystic fibrosis management today: an example of active and healthy ageing in patients suffering from a rare genetic disease http://ow.ly/V3JXtCystic fibrosis (CF), the most common life-limiting genetic condition in Caucasians, affects many organ systems. Specialised medical care, aggressive treatments [1] and proper nutrition both lengthen and improve quality of life for CF patients. Advances achieved over the last four decades have transformed CF from a fatal childhood disease to a long-term chronic condition. CF patients can now reach adulthood [2][3][4][5], although most of them still have a reduced life expectancy, and the adult population has passed from 44.55% in 2005 to 49.3% in 2010 (figure 1), the oldest patient being aged >80 years, from the 2010 European CF registry [6]. In the near future, even though CF paediatric care will remain crucial to assure the best growth for patients and transition to adulthood, CF centres may largely be considered as adult oriented [7], and we should, therefore, aim for the new concept of active and healthy ageing (AHA) in CF patients. Important controversies exist concerning the early-and long-term management of CF, which should be carefully considered when proposing a strategy for ageing well with CF [8].Health is a multidimensional concept, capturing how people feel and function. It includes at least three dynamic components: first, survival to old age; second, delay in chronic diseases onset and disability; and third, optimal functioning for the maximal period of time. AHA includes functioning, activities and participation, diseases, and resilience (the ability to adapt).

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Psychological interventions for individuals with cystic fibrosis and their families

Cited by 67 publications

References 135 publications

Survey of collaborative mental health providers in cystic fibrosis centers in the United States

Survey of collaborative mental health providers in cystic fibrosis centers in the United States

Report of the European Respiratory Society/European Cystic Fibrosis Society task force on the care of adults with cystic fibrosis

A model for active and healthy ageing with a rare genetic disease: cystic fibrosis

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