Participation in physical activity of adolescents with congenital heart disease.

BACKGROUND: Participation in physical activity improves health in individuals with congenital heart disease. However, most do not sufficiently engage in physical activity. The aim of this study was to collect information regarding the experiences of adolescents with congenital heart disease who practiced physical activities. METHODS: French adolescents aged 13-18 years, diagnosed with congenital heart disease, class I or II dyspnoea on the NYHA scale and authorized physical activity were interviewed individually about their physical activity experiences using a semi-structured format. The qualitative interview transcript data were analysed using a phenomenological approach; data analysis was performed independently by three researchers and merged at each step until saturation. RESULTS: Eleven adolescents with congenital heart disease participated. Three main themes emerged: 'own representation', 'physical activity (PA) set-up' and 'environment'. Adolescents had a generally positive view of physical activity, which was associated with positive experiences. However, they reported that their physical condition limited PA, and they wished for adapted activities. The results revealed the importance of environmental factors, for example, within the social and school environments. The participants indicated that they appreciated the social interactions that PA afforded, but that integration into a group could be difficult, especially in school, with some participants describing feelings such as anxiety, frustration or guilt when they could not participate fully. PA facilitators included familial support. However, participants noted a lack of clear medical guidance to help them choose suitable activities based on their circumstances and personal preferences. They wished for the public to be better informed about congenital heart disease to reduce stigmatism. CONCLUSIONS: This study provides valuable information for clinicians, physical educators and policy makers to help them promote physical activity and support adolescents and their families in understanding their own condition, maximizing their potential and in their choice of activities.

The newborn infant parasympathetic evaluation index for acute procedural pain assessment in preterm infants.

BACKGROUND: Accurate assessments of pain in hospitalized preterm infants present a major challenge in improving the short- and long-term consequences associated with painful experiences. We evaluated the ability of the newborn infant parasympathetic evaluation (NIPE) index to detect acute procedural pain in preterm infants. METHODS: Different painful and stressful interventions were prospectively observed in preterm infants born at 25 + 0 to 35 + 6 weeks gestation. Pain responses were measured using the composite Premature Infant Pain Profile Revised (PIPP-R) scale, the NIPE index, and skin conductance responses (SCR). Outcome measures were correlations between the NIPE index, the PIPP-R score, and the SCR. Sensitivity/specificity analyses tested the accuracy of the NIPE index and SCR. RESULTS: Two hundred and fifty-four procedures were recorded in 90 preterm infants. No significant correlation was found between PIPP-R and the NIPE index. PIPP-R and SCR were positively correlated (r = 0.27, P < 0.001), with stronger correlations for painful procedures (r = 0.68, P < 0.001) and especially for skin-breaking procedures (r = 0.82, P < 0.001). The NIPE index and SCR had high sensitivity and high negative predictive values to predict PIPP-R > 10, especially for skin-breaking painful procedures. CONCLUSIONS: We found no significant correlation between the NIPE index and PIPP-R during routine painful or stressful procedures in preterm infants. IMPACT: Exposure to repetitive pain can lead to neurodevelopmental sequelae. Behavior-based pain scales have limited clinical utility, especially for preterm infants. New devices for monitoring physiological responses to pain have not been validated sufficiently in preterm infants. This study found that the NIPE index was not significantly correlated to the validated PIPP-R scale during acute procedural pain. Secondary analysis of this study showed that NIPE index and SCRs may help to exclude severe pain in preterm infants. In clinical practice, measurements of physiological parameters should be combined with behavior-based scales for multidimensional pain assessments.