Psychological interventions for people with cystic fibrosis and their families

Claire A. Glasscoe, Alexandra Quittner

Research output: Contribution to journalArticle

30 Citations (Scopus)

Abstract

Background: With increasing survival estimates for cystic fibrosis (CF) long-term management has become an important focus. Psychological interventions are largely concerned with adherence to treatment, emotional and social adjustments and quality of life. We are unaware of any relevant systematic reviews. Objectives: Assess whether psychological interventions for CF provide significant psychosocial and physical benefits in addition to standard care. Search strategy: Trials were identified from two Cochrane trial registers (CF and Genetic Disorders Group; Depression, Anxiety and Neurosis Group), Ovid MEDLINE and PsychINFO; unpublished trials were located through professional networks and Listserves.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: September 2007. Selection criteria: Randomised controlled trials of a broad range of psychological interventions in children and adults with CF and their immediate family. Data collection and analysis: Two authors independently selected relevant trials and assessed their methodological quality. Main results: The review includes 13 studies (five new at this update) representing data from 529 participants. Studies mainly assessed behavioural and educational interventions: 1. gene pre-test education counselling for relatives of those with CF; 2. biofeedback, massage and music therapy to assist physiotherapy; 3. behavioural and educational interventions to improve dietary intake and airway clearance; 4. self-administration of medication and education to promote independence, knowledge and quality of life; and 5. systemic interventions promoting psychosocial functioning. A substantial proportion of outcomes were educational or behavioural relating to issues of adherence, change in physical status or other specific treatment concerns during the chronic phase of the disease. Some evidence was found for relative's acceptance of a genetic test for carrier status when using home-based rather than clinic-based information leaflets and testing. There is some evidence that behavioural interventions improve emotional outcomes in people with CF and their carers, and that psychoeducational interventions improve knowledge in the short term. There was no consistent effect on lung function, although one small study showed that biofeedback-assisted breathing re-training helped improve some lung function measurements. Some studies point to educational and behavioural interventions aiding nutrition and growth in people with CF. Currently there is insufficient evidence for interventions aimed at other aspects of the disease process. Authors' conclusions: Currently no clear evidence exists on the best psychological interventions to help people with CF and their carers manage the disease. Trials of interventions to improve adherence to treatment are needed. Multicentre approaches, with consequent funding implications, will increase the sample size of trials and enhance the power and precision of their findings.

Original languageEnglish
Article numberCD003148
JournalCochrane Database of Systematic Reviews
Issue number4
DOIs
StatePublished - Dec 1 2009

Fingerprint

Cystic Fibrosis
Psychology
Caregivers
Quality of Life
Music Therapy
Education
Social Adjustment
Lung
Inborn Genetic Diseases
Self Administration
Massage
Heterozygote
Anxiety Disorders
MEDLINE
Sample Size
Patient Selection
Counseling
Respiration
Chronic Disease
Therapeutics

Keywords

  • Adult
  • Child
  • Humans

ASJC Scopus subject areas

  • Medicine(all)
  • Pharmacology (medical)

Cite this

Psychological interventions for people with cystic fibrosis and their families. / Glasscoe, Claire A.; Quittner, Alexandra.

In: Cochrane Database of Systematic Reviews, No. 4, CD003148, 01.12.2009.

Research output: Contribution to journalArticle

@article{ab922be7dcda4b899ec7697555d0d1aa,
title = "Psychological interventions for people with cystic fibrosis and their families",
abstract = "Background: With increasing survival estimates for cystic fibrosis (CF) long-term management has become an important focus. Psychological interventions are largely concerned with adherence to treatment, emotional and social adjustments and quality of life. We are unaware of any relevant systematic reviews. Objectives: Assess whether psychological interventions for CF provide significant psychosocial and physical benefits in addition to standard care. Search strategy: Trials were identified from two Cochrane trial registers (CF 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: September 2007. Selection criteria: Randomised controlled trials of a broad range of psychological interventions in children and adults with CF and their immediate family. Data collection and analysis: Two authors independently selected relevant trials and assessed their methodological quality. Main results: The review includes 13 studies (five new at this update) representing data from 529 participants. Studies mainly assessed behavioural and educational interventions: 1. gene pre-test education counselling for relatives of those with CF; 2. biofeedback, massage and music therapy to assist physiotherapy; 3. behavioural and educational interventions to improve dietary intake and airway clearance; 4. self-administration of medication and education to promote independence, knowledge and quality of life; and 5. systemic interventions promoting psychosocial functioning. A substantial proportion of outcomes were educational or behavioural relating to issues of adherence, change in physical status or other specific treatment concerns during the chronic phase of the disease. Some evidence was found for relative's acceptance of a genetic test for carrier status when using home-based rather than clinic-based information leaflets and testing. There is some evidence that behavioural interventions improve emotional outcomes in people with CF and their carers, and that psychoeducational interventions improve knowledge in the short term. There was no consistent effect on lung function, although one small study showed that biofeedback-assisted breathing re-training helped improve some lung function measurements. Some studies point to educational and behavioural interventions aiding nutrition and growth in people with CF. Currently there is insufficient evidence for interventions aimed at other aspects of the disease process. Authors' conclusions: Currently no clear evidence exists on the best psychological interventions to help people with CF and their carers manage the disease. Trials of interventions to improve adherence to treatment are needed. Multicentre approaches, with consequent funding implications, will increase the sample size of trials and enhance the power and precision of their findings.",
keywords = "Adult, Child, Humans",
author = "Glasscoe, {Claire A.} and Alexandra Quittner",
year = "2009",
month = "12",
day = "1",
doi = "10.1002/14651858.CD003148.pub2.",
language = "English",
journal = "The Cochrane database of systematic reviews",
issn = "1361-6137",
publisher = "John Wiley and Sons Ltd",
number = "4",

}

TY - JOUR

T1 - Psychological interventions for people with cystic fibrosis and their families

AU - Glasscoe, Claire A.

AU - Quittner, Alexandra

PY - 2009/12/1

Y1 - 2009/12/1

N2 - Background: With increasing survival estimates for cystic fibrosis (CF) long-term management has become an important focus. Psychological interventions are largely concerned with adherence to treatment, emotional and social adjustments and quality of life. We are unaware of any relevant systematic reviews. Objectives: Assess whether psychological interventions for CF provide significant psychosocial and physical benefits in addition to standard care. Search strategy: Trials were identified from two Cochrane trial registers (CF 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: September 2007. Selection criteria: Randomised controlled trials of a broad range of psychological interventions in children and adults with CF and their immediate family. Data collection and analysis: Two authors independently selected relevant trials and assessed their methodological quality. Main results: The review includes 13 studies (five new at this update) representing data from 529 participants. Studies mainly assessed behavioural and educational interventions: 1. gene pre-test education counselling for relatives of those with CF; 2. biofeedback, massage and music therapy to assist physiotherapy; 3. behavioural and educational interventions to improve dietary intake and airway clearance; 4. self-administration of medication and education to promote independence, knowledge and quality of life; and 5. systemic interventions promoting psychosocial functioning. A substantial proportion of outcomes were educational or behavioural relating to issues of adherence, change in physical status or other specific treatment concerns during the chronic phase of the disease. Some evidence was found for relative's acceptance of a genetic test for carrier status when using home-based rather than clinic-based information leaflets and testing. There is some evidence that behavioural interventions improve emotional outcomes in people with CF and their carers, and that psychoeducational interventions improve knowledge in the short term. There was no consistent effect on lung function, although one small study showed that biofeedback-assisted breathing re-training helped improve some lung function measurements. Some studies point to educational and behavioural interventions aiding nutrition and growth in people with CF. Currently there is insufficient evidence for interventions aimed at other aspects of the disease process. Authors' conclusions: Currently no clear evidence exists on the best psychological interventions to help people with CF and their carers manage the disease. Trials of interventions to improve adherence to treatment are needed. Multicentre approaches, with consequent funding implications, will increase the sample size of trials and enhance the power and precision of their findings.

AB - Background: With increasing survival estimates for cystic fibrosis (CF) long-term management has become an important focus. Psychological interventions are largely concerned with adherence to treatment, emotional and social adjustments and quality of life. We are unaware of any relevant systematic reviews. Objectives: Assess whether psychological interventions for CF provide significant psychosocial and physical benefits in addition to standard care. Search strategy: Trials were identified from two Cochrane trial registers (CF 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: September 2007. Selection criteria: Randomised controlled trials of a broad range of psychological interventions in children and adults with CF and their immediate family. Data collection and analysis: Two authors independently selected relevant trials and assessed their methodological quality. Main results: The review includes 13 studies (five new at this update) representing data from 529 participants. Studies mainly assessed behavioural and educational interventions: 1. gene pre-test education counselling for relatives of those with CF; 2. biofeedback, massage and music therapy to assist physiotherapy; 3. behavioural and educational interventions to improve dietary intake and airway clearance; 4. self-administration of medication and education to promote independence, knowledge and quality of life; and 5. systemic interventions promoting psychosocial functioning. A substantial proportion of outcomes were educational or behavioural relating to issues of adherence, change in physical status or other specific treatment concerns during the chronic phase of the disease. Some evidence was found for relative's acceptance of a genetic test for carrier status when using home-based rather than clinic-based information leaflets and testing. There is some evidence that behavioural interventions improve emotional outcomes in people with CF and their carers, and that psychoeducational interventions improve knowledge in the short term. There was no consistent effect on lung function, although one small study showed that biofeedback-assisted breathing re-training helped improve some lung function measurements. Some studies point to educational and behavioural interventions aiding nutrition and growth in people with CF. Currently there is insufficient evidence for interventions aimed at other aspects of the disease process. Authors' conclusions: Currently no clear evidence exists on the best psychological interventions to help people with CF and their carers manage the disease. Trials of interventions to improve adherence to treatment are needed. Multicentre approaches, with consequent funding implications, will increase the sample size of trials and enhance the power and precision of their findings.

KW - Adult

KW - Child

KW - Humans

UR - http://www.scopus.com/inward/record.url?scp=77950140721&partnerID=8YFLogxK

UR - http://www.scopus.com/inward/citedby.url?scp=77950140721&partnerID=8YFLogxK

U2 - 10.1002/14651858.CD003148.pub2.

DO - 10.1002/14651858.CD003148.pub2.

M3 - Article

JO - The Cochrane database of systematic reviews

JF - The Cochrane database of systematic reviews

SN - 1361-6137

IS - 4

M1 - CD003148

ER -