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Intervention Review

Psychological interventions for people with cystic fibrosis and their families

  1. Claire A Glasscoe1,*,
  2. Alexandra L Quittner2

Editorial Group: Cochrane Cystic Fibrosis and Genetic Disorders Group

Published Online: 16 JUL 2008

Assessed as up-to-date: 28 FEB 2008

DOI: 10.1002/14651858.CD003148.pub2


How to Cite

Glasscoe CA, Quittner AL. Psychological interventions for people with cystic fibrosis and their families. Cochrane Database of Systematic Reviews 2008, Issue 3. Art. No.: CD003148. DOI: 10.1002/14651858.CD003148.pub2.

Author Information

  1. 1

    Alder Hey Children's Foundation Trust, Academic Child Mental Health Unit, Liverpool, UK

  2. 2

    University of Miami, Department of Psychology, Miami, Florida, USA

*Claire A Glasscoe, Academic Child Mental Health Unit, Alder Hey Children's Foundation Trust, Eaton Road, Liverpool, L12 2AP, UK. glassc@liverpool.ac.uk.

Publication History

  1. Publication Status: Edited (no change to conclusions)
  2. Published Online: 16 JUL 2008

SEARCH

This is not the most recent version of the article. View current version (18 JUN 2014)

 

Abstract

  1. Top of page
  2. Abstract
  3. Plain language summary
  4. 摘要

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 methods

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trial registers (CF and Genetic Disorders Group; Depression, Anxiety and Neurosis Group), Ovid MEDLINE and PsychINFO; unpublished trials were located through professional networks and Listserves.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.

 

Plain language summary

  1. Top of page
  2. Abstract
  3. Plain language summary
  4. 摘要

Psychological treatments to help people with cystic fibrosis and their carers manage the disease

Cystic fibrosis is a genetic disorder that damages many of the body's organs and shortens life expectancy. Often people with cystic fibrosis and family members need help to adjust psychologically and emotionally. They also need help to manage the demands of treatment. We looked for trials of psychological treatments in people with cystic fibrosis and their families. The review includes 13 studies with 529 people of mainly behavioural and educational treatments. Some treatments aimed to improve people's ability to cope with the disease or genetic risk. Other treatments aimed to improve dietary intake and boost the effectiveness of chest physiotherapy. Some evidence showed that behavioural treatments can improve emotional outcomes for people with cystic fibrosis and their carers. We also found some evidence that psychoeducational treatments can improve knowledge in the short term. In addition, educational and behavioural treatments can help nutrition and growth in people with cystic fibrosis. However, at the moment there is no clear evidence to show the best psychological treatments to help people with cystic fibrosis and their carers. There should be multicentre trials to improve adherence to treatment.

 

摘要

  1. Top of page
  2. Abstract
  3. Plain language summary
  4. 摘要

背景

囊性纖維化(cystic fibrosis)病人及家屬的心理治療

在囊性纖維化病人預估壽命(survival estimate)逐漸增加之下,長期的處置成了重要的重要焦點。心理治療主要關注於對醫療處置的遵從、情緒及社會層面的調適和生活品質。我們沒有看到相關的系統性回顧文獻。

目標

針對囊性纖維化患者,評估心理治療是否能在標準的醫療照護之外提供顯著的社會心理及生理上的利益。

搜尋策略

相關試驗來自2個Cochrane trial registers資料庫(CF and Genetic Disorders Group資料庫和Depression, Anxiety and Neurosis Group資料庫)、Ovid MEDLINE資料庫、PsychINFO資料庫;未發表的試驗則透過專業網路和伺服器找出。最新搜尋時間為2007年9月。

選擇標準

針對囊性纖維化的成人和兒童患者及其直系親屬,研究廣範圍心理治療的隨機對照試驗(randomised controlled trial)。

資料收集與分析

兩位作者獨立地選取相關試驗並評估方法品質。

主要結論

這篇回顧文章共收納了13個研究(其中5個研究是最新一次更新時加入),總共有529位參與者的資料。這些研究主要評估行為和教育療法:1.對於囊性纖維化患者的家屬進行遺傳檢測前諮詢;2.生物回饋輔助治療、按摩和音樂療法;3.增進飲食攝取和呼吸道清理的行為和教育療法;4.自行服藥和增進獨立性、知識與生活品質的教育;5.增進社會心理功能的系統性治療。絕大部分的結果是與遵從醫囑、身體狀態改變以及在疾病慢性期之特殊醫療考量等議題相關的教育或行為預後,有些證據指出使用以家庭為基礎的衛教單和檢測相較於以臨床為基礎更能增加家屬對帶原者狀態(carrier status)的基因檢測之接受度,也有些證據顯示行為療法能改善囊性纖維化患者及其照顧者的情緒預後,且心理教育療法短期內可以增加知識。肺功能方面則沒有一致的效果,雖然有一個小型研究顯示生物回饋輔助的呼吸再訓練(biofeedbackassisted breathing retraining)能幫助改善一些肺功能指標。有些研究指向了幫助囊性纖維化患者營養和生長的行為療法。以疾病進程的其他面向為目標的療法,在目前並沒有足夠的證據。

作者結論

在幫助囊性纖維化患者及其照顧者控制病情上,目前並沒有清楚的證據顯示何種心理治療方法是最好的。我們需要各種療法的試驗結果以增進患者或家屬對醫療處置的遵從度。多中心的研究,伴隨著資金的投入,將會增加試驗的樣本數(sample size)並提高試驗結果的檢力(power)和準確率(precision)。

翻譯人

本摘要由臺灣大學附設醫院郭百曾翻譯。

此翻譯計畫由臺灣國家衛生研究院(National Health Research Institutes, Taiwan)統籌。

總結

囊性纖維化是會損害身體許多器官並減少預期壽命(life expectancy)的遺傳疾病,患者和家屬在心理及情緒的調適上通常需要協助,他們在處理醫療需求上也通常需要幫忙。我們針對囊性纖維化患者及家屬尋找了心理治療的試驗,這篇回顧文章收納了13個研究,總共529位參與者,主要研究行為和教育療法。有些療法的目標是增進人們處理疾病和遺傳風險的能力,其他療法的目標則是改善飲食攝取和增加胸腔生理治療(chest physiotherapy)的效果。有些證據顯示行為療法能改善囊性纖維化患者及其照顧者的情緒預後,我們也找到證據指出心理教育療法能在短期內增加知識,此外,教育和行為療法能協助囊性纖維化患者的營養和生長。然而,目前沒有清楚的證據指出何種心理治療在幫助囊性纖維化患者及其照顧者是最好的。應該進行多中心的試驗以增進患者及家屬對治療的遵從度。