Psychological interventions for individuals with cystic fibrosis and their families
Open accessAbstract
BACKGROUND: With increasing survival estimates for individuals with cystic fibrosis, long-term management has become an important focus. Psychological interventions are largely concerned with adherence to treatment, emotional and social adaptation and health-related quality of life. We are unaware of any relevant systematic reviews. OBJECTIVES: To determine whether psychological interventions for people with cystic fibrosis provide significant psychosocial and physical benefits in addition to standard medical care. SEARCH METHODS: Studies were identified from two Cochrane trials registers (Cystic Fibrosis and Genetic Disorders Group; Depression, Anxiety and Neurosis Group), Ovid MEDLINE and PsychINFO; unpublished trials were located through professional networks and Listserves. Most recent search of the Cystic Fibrosis and Genetic Disorders Group's register: 19 December 2013.Most recent search of the Depression, Anxiety and Neurosis Group's register: 12 November 2013. SELECTION CRITERIA: Randomised controlled studies of a broad range of psychological interventions evaluating subjective and objective health outcomes, such as quality of life or pulmonary function, in individuals of all ages with cystic fibrosis and their immediate family. We were interested in psychological interventions, including psychological methods within the scope of psychotherapeutic or psychosomatic mechanism of action (e.g. cognitive behavioural, cognitive, family systems or systemic, psycho-dynamic, or other, e.g. supportive, relaxation, or biofeedback), which were aimed at improving psychological and psychosocial outcomes (e.g. quality of life, levels of stress or distress, psychopathology, etc.), adaptation to disease management and physiological outcomes. DATA COLLECTION AND ANALYSIS: Three authors were involved in selecting the eligible studies and two of these authors assessed their risk of bias. MAIN RESULTS: The review includes 16 studies (eight new studies included in this update) representing data from 556 participants. Studies are diverse in their design and their methods. They cover interventions with generic approaches, as well as interventions developed specifically to target disease-specific symptoms and problems in people with cystic fibrosis. These include cognitive behavioural interventions to improve adherence to nutrition or psychosocial adjustment, cognitive interventions to improve adherence or those associated with decision making in lung transplantation, a community-based support intervention and other interventions, such as self-hypnosis, respiratory muscle biofeedback, music therapy, dance and movement therapy, and a tele-medicine intervention to support patients awaiting transplantation.A substantial proportion of outcomes relate to adherence, changes in physical status or other specific treatment concerns during the chronic phase of the disease.There is some evidence that behavioural interventions targeting nutrition and growth in children (4 to 12 years) with cystic fibrosis are effective in the short term. Evidence was found that providing a structured decision-making tool for patients considering lung transplantation improves patients' knowledge of and expectations about the transplant, and reduces decisional conflict in the short term. One study about training in biofeedback-assisted breathing demonstrated some evidence that it improved some lung function measurements. Currently there is insufficient evidence for interventions aimed at other aspects of the disease process. AUTHORS' CONCLUSIONS: Currently, insufficient evidence exists on psychological interventions or approaches to support people with cystic fibrosis and their caregivers, although some of the studies were promising. Due to the heterogeneity between studies, more of each type of intervention are needed to support preliminary evidence. Multicentre studies, with consequent funding implications, are needed to increase the sample size of these studies and enhance the statistical power and precision to detect important findings. In addition, multicentre studies could improve the generalisation of results by minimizing centre or therapist effects. Psychological interventions should be targeted to illness-specific symptoms or behaviours to demonstrate efficacy.
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The Goldbeck 2014 review was more general and focused on a range of outcomes, with adherence to treatment assessed as a secondary outcome.
“The Goldbeck 2014 review was more general and, although adherence to treatment was assessed as a secondary outcome, interventions were focused on a range of outcomes, e.g.well-being and functioning, lung function, weight and height or body mass index (BMI), adherence to treatment etc. (Goldbeck 2014).”
From Psychological interventions for improving adherence to inhaled therapies in people with cystic fibrosis (2023) · cites this paper as Goldbeck 2014
Other CF-related reviews and general adherence reviews have highlighted the limitations of many included trials in terms of having small sample sizes and being underpowered to detect a meaningful difference in adherence.
“This review is in agreement with other, CF-related reviews and general adherence reviews, which have highlighted the limitations of many included trials in terms of having small sample sizes and being underpowered to detect a meaningful difference in adherence (Goldbeck 2014; Nieuwlaat 2014).”
From Psychological interventions for improving adherence to inhaled therapies in people with cystic fibrosis (2023) · cites this paper as Goldbeck 2014
Our review was more specific and focused on adherence to inhaled therapies in CF in particular, more so than the Cochrane Review of psychological interventions for individuals with CF and their families (Goldbeck 2014).
“Our review was more specific and focused on adherence to inhaled therapies in CF in particular, more so than the Cochrane Review of psychological interventions for individuals with CF and their families (Goldbeck 2014).”
From Psychological interventions for improving adherence to inhaled therapies in people with cystic fibrosis (2023) · cites this paper as Goldbeck 2014
The authors in the Goldbeck 2014 review categorised the different types of interventions into cognitive behavioural, cognitive, family systems or systemic, psychodynamic, or other interventions.
“The authors in that review categorised the different types of interventions into 1.Cognitive behavioural; 2. Cognitive; 3. Family systems or systemic; 4. Psychodynamic; or 5. Other interventions.”
From Psychological interventions for improving adherence to inhaled therapies in people with cystic fibrosis (2023) · cites this paper as Goldbeck 2014
Previous Cochrane Reviews on adherence and CF-specific reviews have not used a coding framework, so this review has improved on existing methodologies.
“Previous Cochrane Reviews on adherence (Nieuwlaat 2014) and CF-specific reviews (Goldbeck 2014; Savage 2014) have not used a coding framework, so this review has improved on existing methodologies.”
From Psychological interventions for improving adherence to inhaled therapies in people with cystic fibrosis (2023) · cites this paper as Goldbeck 2014
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- Authors
- Goldbeck, L., Fidika, A., Herle, M., & Quittner, A. L.
- Affiliations
- University Hospital Ulm (DE)
- University of Miami (US)
- Venue
- Cochrane Database of Systematic Reviews
- Publisher
- Wiley
- Published
- 2014-06-18
- Volume
- 2020
- Issue
- 5
- Pages
- CD003148-CD003148
- ISSN
- 1361-6137 (ISSN-L)
- 1465-1858
- PMC
- PMC7388585
- OpenAlex
- W1890069815
- Cited by
- 94
- References
- 182
- Citations by year
- 2026: 2 · 2025: 7 · 2024: 7 · 2023: 10 · 2022: 7 · 2021: 10 · 2020: 10 · 2019: 11 · 2018: 7 · 2017: 4 · 2016: 6 · 2015: 12 · 2014: 1
- FWCI
- 1.31
- Type
- journal article
- Language
- en
- Open access
- green
- www.ncbi.nlm.nih.gov
- Locations
- Cochrane Database of Systematic Reviews (publishedVersion)
- PubMed Central (publishedVersion)
- PubMed (publishedVersion)
- Topics
- Health Sciences › Medicine › Pulmonary and Respiratory Medicine › Cystic Fibrosis Research Advances
- Health Sciences › Health Professions › Pharmacy › Nursing care and research
- Social Sciences › Psychology › Clinical Psychology › Family and Disability Support Research
- Keywords
- cystic fibrosis, psychological intervention, medication adherence, health-related quality of life, lung function, family caregivers, children with cystic fibrosis, cognitive-behavioural intervention, community-based support, self-hypnosis, biofeedback, music therapy, dance therapy, telemedicine, psychosocial adjustment, pulmonary rehabilitation
- MeSH terms
- Adult, Child, Cystic Fibrosis, Diet, Family, Family Therapy, Humans, Patient Compliance, Psychotherapy, Respiratory Therapy, Randomized Controlled Trials as Topic, Caregivers
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