title: Self-management education for cystic fibrosis.
abstract: BACKGROUND
  Self-management education may help patients with cystic fibrosis and their families to choose, monitor and adjust treatment requirements for their illness, and also to manage the effects of illness on their lives. Although self-management education interventions have been developed for cystic fibrosis, no previous systematic review of the evidence of effectiveness of these interventions has been conducted.
  
  
  OBJECTIVE
  To assess the effects of self-management education interventions on improving health outcomes for patients with cystic fibrosis and their caregivers
  
  
  METHODS
  We searched the Cochrane Cystic Fibrosis and Genetic Disorders Group Trials Register (date of the last search: 22 August 2013).We also searched databases through EBSCO (CINAHL; Psychological and Behavioural Sciences Collection; PsychInfo; SocINDEX) and Elsevier (Embase) and handsearched relevant journals and conference proceedings (date of the last searches: 01 February 2014 ).
  
  
  METHODS
  Randomised controlled trials, quasi-randomised controlled trials or controlled clinical trials comparing different types of self-management education for cystic fibrosis or comparing self-management education with standard care or no intervention.
  
  
  METHODS
  Two authors assessed trial eligibility and risk of bias. Three authors extracted data.
  
  
  RESULTS
  Four trials (involving a total of 269 participants) were included. The participants were children with cystic fibrosis and their parents or caregivers in three trials and adults with cystic fibrosis in one trial. The trials compared four different self-management education interventions versus standard treatment: (1) a training programme for managing cystic fibrosis in general; (2) education specific to aerosol and airway clearance treatments; (3) disease-specific nutrition education; and (4) general and disease-specific nutrition education. Training children to manage cystic fibrosis in general had no statistically significant effects on weight after six to eight weeks, mean difference -7.74 lb (i.e. 3.51 kg) (95% confidence interval -35.18 to 19.70). General and disease-specific nutrition education for adults had no statistically significant effects on: pulmonary function (forced expiratory volume at one second), mean difference -5.00 % (95% confidence interval -18.10 to 8.10) at six months and mean difference -5.50 % (95% confidence interval -18.46 to 7.46) at 12 months; or weight, mean difference - 0.70 kg (95% confidence interval -6.58 to 5.18) at six months and mean difference -0.70 kg (95% confidence interval -6.62 to 5.22) at 12 months; or dietary fat intake scores, mean difference 1.60 (85% confidence interval -2.90 to 6.10) at six months and mean difference 0.20 (95% confidence interval -4.08 to 4.48) at 12 months. There is some limited evidence to suggest that self-management education may improve knowledge in patients with cystic fibrosis but not in parents or caregivers. There is also some limited evidence to suggest that self-management education may result in positively changing a small number of behaviours in both patients and caregivers.
  
  
  CONCLUSIONS
  The available evidence from this review is of insufficient quantity and quality to draw any firm conclusions about the effects of self-management education for cystic fibrosis. Further trials are needed to investigate the effects of self-management education on a range of clinical and behavioural outcomes in children, adolescents and adults with cystic fibrosis and their caregivers.
authors.affiliation: Catherine McAuley School of Nursing & Midwifery Brookfield Health Sciences Complex, University College Cork, Cork, Ireland.
authors.forename: Eileen
authors.initials: E
authors.lastname: Savage
authors.forename: Paul V
authors.initials: PV
authors.lastname: Beirne
authors.forename: Muireann
authors.initials: M
authors.lastname: Ni Chroinin
authors.forename: Alistair
authors.initials: A
authors.lastname: Duff
authors.forename: Tony
authors.initials: T
authors.lastname: Fitzgerald
authors.forename: Dawn
authors.initials: D
authors.lastname: Farrell
mesh_terms: D000293:Adolescent; D000328:Adult; D017028:Caregivers / Q000193:education; D002648:Child; D003550:Cystic Fibrosis / Q000628:therapy*; D006801:Humans; D044623:Nutrition Therapy; D010290:Parents / Q000193:education; D010353:Patient Education as Topic / Q000379:methods*; D016032:Randomized Controlled Trials as Topic; D012648:Self Care; D055815:Young Adult