Self-management education for cystic fibrosis

We set out to review the effects of self-management education for cystic fibrosis on a range of health outcomes in individuals of all ages with cystic fibrosis and their caregivers. Our search for available evidence identified four trials, and all four compared a form of self-management education to standard treatment. The precise focus of self management differed between trials and included a training programme for managing cystic fibrosis, education on chest treatments, education on nutrition specific to cystic fibrosis, and education on general and disease-specific nutrition. Self-management education had no positive effects on lung function, weight, or intake of fatty food. There is some evidence to suggest that self-management education improves knowledge about cystic fibrosis and its management in patients with this condition and some self-management behaviours in patients and caregivers. However, due to the small number of trials in this review, and because of concerns about the quality of these trials, we are unable to reach any firm conclusions about the effects of self-management education for cystic fibrosis. We recommend that further trials are conducted to evaluate the effects of self-management education interventions.

Authors' 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.

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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.

Objectives: 

To assess the effects of self-management education interventions on improving health outcomes for patients with cystic fibrosis and their caregivers

Search strategy: 

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 ).

Selection criteria: 

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.

Data collection and analysis: 

Two authors assessed trial eligibility and risk of bias. Three authors extracted data.

Main 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.

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