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Cystic fibrosis (CF) has been transformed from a fatal diagnosis in infancy to a chronic disease of children and young adults. Symptom patterns and disease burden in CF may be shifting to reflect the relatively healthier, older population with the disease. Self-management of symptoms is a hallmark of chronic illness, and yet we do not have a good understanding of how CF patients monitor or manage their symptoms. Children and adults were recruited through clinics in three Canadian provinces. Questionnaires with open-ended and close-ended questions in English and French, designed to assess the frequency, severity, and self-management of pain, breathlessness, and cough, were mailed to all the eligible participants. One hundred twenty-three respondents completed the survey, for a response rate of 64%. Eighty-four percent (103 of 123) of participants reported having pain. They reported an average of 2.1 locations of pain, with headache and abdominal pain most frequently described. Sixty-four percent (76 of 123) of participants reported having breathlessness, and 83% (99 of 123) of participants reported experiencing cough. Sixty-three percent (62 of 99) of participants with cough reported that cough always or sometimes interfered with their sleep. A variety of pharmacological and nonpharmacological treatments were used to manage symptoms. Pain and dyspnea are more common than suspected and a wide variety of pharmacological and nonpharmacological measures are used to treat symptoms. Cough is difficult to assess, but disturbed sleep may be an indicator of cough severity and an important symptom to consider when evaluating the overall burden of illness in those with CF.

CONTEXTS: Preterm infants are at an increased risk of neurodevelopmental delay. Some studies report positive intervention effects on motor outcomes, but it is currently unclear which motor activities are most effective in the short and longer term. OBJECTIVE: The aim of the study was to identify interventions that improve the motor development of preterm infants. DATA SOURCES: An a priori protocol was agreed upon. Seventeen electronic databases from 1980 to April 2015 and gray literature sources were searched. STUDY SELECTION: Three reviewers screened the articles. DATA EXTRACTION: The outcome of interest was motor skills assessment scores. All data collection and risk of bias assessments were agreed upon by the 3 reviewers. RESULTS: Forty-two publications, which reported results from 36 trials (25 randomized controlled trials and 11 nonrandomized studies) with a total of 3484 infants, met the inclusion criteria. A meta-analysis was conducted by using standardized mean differences on 21 studies, with positive effects found at 3 months (mean 1.37; confidence interval 0.48–2.27), 6 months (0.34; 0.11–0.57), 12 months (0.73; 0.20–1.26), and 24 months (0.28; 0.07–0.49). At 3 months, there was a large and significant effect size for motor-specific interventions (2.00; 0.28–3.72) but not generic interventions (0.33; –0.03 to –0.69). Studies were not excluded on the basis of quality; therefore, heterogeneity was significant and the random-effects model was used. LIMITATIONS: Incomplete or inconsistent reporting of outcome measures limited the data available for meta-analysis beyond 24 months. CONCLUSIONS: A positive intervention effect on motor skills appears to be present up to 24 months’ corrected age. There is some evidence at 3 months that interventions with specific motor components are most effective.

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