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OBJECTIVE: To study physical activity and sleep in Fontan patients and healthy controls before and after an endurance training program, and after 1 year. METHOD: Fontan patients (n = 30) and healthy controls (n = 25) wore accelerometers for seven consecutive days and nights during a school week before and after a 12-week endurance training program and after 1 year. RESULTS: Patients had similar sleep duration and sleep efficiency as healthy controls. Latency to sleep onset in minutes was longer for patients than controls (22.4 (4.3-55.3) minutes versus 14.8 (8.6-29.4) minutes, p < 0.01). More time in moderate-to-vigorous activity daytime was correlated with increased sleep time (p < 0.05; r2 = 0.20), improved sleep efficiency (p < 0.01; r2 = 0.24) and less time as wake after sleep onset (p < 0.05; r2 = 0.21) for patients but not controls. Sleep variables did not change after the exercise intervention for patients or controls. After 1 year, patients had decreased total sleep time, decreased sleep efficiency, increased accelerometer counts during sleep and more time as wake after sleep onset during sleep time, but not controls. CONCLUSIONS: Fontan patients have prolonged latency to sleep onset compared with controls. More time in physical activities was correlated with better sleep quality for the patients. Also, subjects with low sleep efficiency and long latency to sleep onset may benefit most from physical exercise. These patients should be encouraged to engage in individually designed physical exercise as this could improve sleep quality.

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BACKGROUND: Joint contractures are the main characteristics for children with arthrogryposis multiplex congenita. Orthoses are often used to enable or facilitate walking. OBJECTIVES: To describe health-related quality of life in children with arthrogryposis multiplex congenita and satisfaction with orthoses in those using orthoses. STUDY DESIGN: Cross-sectional study. METHODS: A total of 33 children with arthrogryposis multiplex congenita participated in the study. Questionnaires were used which measured health-related quality of life (Child Health Questionnaire-Parent Form and EQ-5D youth), mobility and self-care (Paediatric Evaluation of Disability Inventory) and satisfaction with orthoses (Quebec User Evaluation of Satisfaction with Assistive Technology 2.0). Children were divided into groups based on the use of orthoses: Ort-D were dependent on orthoses for walking, Ort-ND used orthoses but were not dependent on them for walking and Non-Ort did not use orthoses. RESULTS: Children with arthrogryposis multiplex congenita had significantly lower Child Health Questionnaire scores in 9 of 12 subscales compared to healthy controls. The children's reported perceived health with EQ-5D youth did not show any difference between children using orthoses or children using only shoes. Paediatric Evaluation of Disability Inventory showed less mobility in Ort-D than in Non-Ort. In total, both orthosis groups were 'quite satisfied' with their orthoses. CONCLUSION: Child Health Questionnaire-physical functioning was lowest in children who were dependent on orthoses (Ort-D) for walking. Both Ort-D and Ort-ND were similar satisfied with their orthoses. Clinical relevance This study contributes to knowledge about health-related quality of life in a group of ambulatory children with arthrogryposis multiplex congenita. For children using orthoses, it is relevant to capture their opinion about their orthoses but a questionnaire specifically for children should be developed.

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More than 400 acquired and genetic diseases are labeled as arthrogryposis. Because of their rarity and complexity coordinated patient management is often lacking. Multidisciplinary clinics are the ideal setting to provide coordinated and comprehensive care to patients with special needs. Two similar experiences of multidisciplinary clinics for the care of patients with arthrogryposis were reported at the Symposium on Arthrogryposis held in Saint Petersburg in September 2014. These clinics are organized to bring together professionals from several disciplines, with the aim to provide patient-centered, comprehensive clinical care, and reduce the burden of multiple medical appointments for the families.

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AIM: A growing number of patients with Fontan circulation are reaching adulthood, and there is increasing concern about their physical performance and quality of life. This study compared self-reported exercise and measured activity with quality of life in patients after Fontan palliation and healthy controls. METHODS: Physical exercise during an average school week was reported by 30 Fontan circulation patients aged eight to 20 years, and 25 healthy controls, followed by accelerometer recordings over seven days. All subjects and their parents answered a questionnaire on quality of life. RESULTS: Patients reported spending less time exercising each week than the controls (114 ± 66 minutes vs. 228 ± 147 minutes, p < 0.001). However, the overall measured activity and moderate-to-vigorous activity was similar for patients and controls. Patients reported a lower quality of life score than the controls (70.9 ± 9.9 vs. 85.7 ± 8.0, p < 0.001). CONCLUSION: In spite of similar measured total activity, Fontan patients reported less time engaged in regular physical exercise than healthy controls and their quality of life was lower than the controls. We speculate that promoting structured regular physical exercise could improve the quality of life of Fontan patients.

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PURPOSE: Excessive movements during walking have been observed by gait analysis in children with arthrogryposis (AMC) using orthoses compared to children using only shoes. The aim of this study was to evaluate energy expenditure and functional exercise capacity in children with AMC. METHODS: Twenty-four children with AMC and 25 typically developing (TD) children underwent oxygen measurement and the 6-minute walk test (6MWT). Children were divided into AMC1 using knee-ankle-foot orthoses with locked knee joints (KAFO-LK); AMC2 KAFOs with open knee joints (KAFO-O) or ankle-foot orthoses (AFO); and AMC3 using shoes. RESULTS: The net non-dimensional oxygen cost (NNcost) was lower in TD (0.308) than in AMC2 (0.455, n = 10) (p = 0.002). There were no differences in the net non-dimensional consumption (NNconsumption) or normalised walking velocity. The lowest NNconsumption (0.082), NNcost (0.385) and normalised walking velocity (0.214) were found in AMC1 (n = 3), but no statistical calculation was performed. In the 6MWT, both AMC2 (402.7, n = 11) and AMC3 (476.8, n = 10) walked shorter distances (m) than TD (565.1) (p < 0.001 and p = 0.043, respectively). AMC2 (0.435) had lower normalised walking velocity than TD (0.564) (p < 0.001). CONCLUSIONS: Children with AMC using open KAFOs or AFOs (AMC2) had higher energy effort represented by significantly higher NNcost than TD, whereas AMC children requiring only shoes (AMC3) did not differ significantly from TD. To maintain the NNconsumption at an acceptable level, children using locked KAFOs (AMC1) slowed down their walking velocity. Compared to TD, the exercise capacity was lower in children with AMC using open KAFOs or AFOs and shoes, represented by lower walking velocity and shorter distance walked during the 6MWT.

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AIM: To evaluate the impact of predictors of adopting a healthy lifestyle in Swedish schoolchildren. METHODS: A sample of 1409 Swedish schoolchildren (mean age 12.5 years) representative of different socio-economic and geographical living areas participated in a questionnaire-based survey on healthy habits and knowledge of healthy behaviour. A logistic regression analysis was performed to identify intrapersonal, social and environmental predictors of healthy habits. RESULTS: A normal body mass index (intrapersonal determinant) was connected to refraining from tobacco (P<0.05). For children to perceive family (P<0.001), themselves (P<0.001), or someone else (P<0.01) as a source of inspiration (social determinant) to be physically active was related to a high physical activity level. Paternal (P=0.01) and maternal (P<0.001) attention to the use of tobacco (social determinant) was of importance for children to refrain from such habits. To live in a socio-economically wealthy area (environmental determinant) was of importance for healthy food choices (P<0.01) and physical activity (P<0.05). Children from rural (P<0.01) areas (environmental determinant) were more physically active than children from urban areas. CONCLUSION: Social aspects such as parental support for physical activity and refraining from tobacco were found to be important for healthy behaviours. Moreover, environmental factors such as socio-economic and geographical living area favourably influenced food choices and physical activity. Parental attitudes and economy are therefore important for physical activity, healthy food choices and refraining from tobacco in children. Consequently, future interventions need to address the psychological and environmental influences of the home environment through the active involvement of parents, even in school-based interventions.

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BACKGROUND: Information on trends in healthy and unhealthy habits among children are important for the development of programmes intended to foster and consolidate a healthy lifestyle. This report studied the importance of time and age on the health behaviour of Swedish school children. METHODS: A comparison between health behaviours derived from repeated evaluations of Swedish school children aged 11-13 years was performed. RESULTS: Significant positive time trends were found in the form of increased physical activity and decreased sedentary behaviours, whereas negative time trends were observed in dietary habits and smoking. An analysis of the impact of increasing age demonstrated a negative influence including less physical activity and deteriorating dietary habits and increased smoking at the young age groups in this study. CONCLUSION: Time trends and age are both important determinants of health behaviour in pre-teen children. Even the small age increase from 11 to 13 years had an important negative influence. The results of the present study underline that the window of opportunities to promote a healthy lifestyle in children is narrow. It is evident that a successful health intervention programme must be initiated at an early age, continued and repeated over time, and structured to counteract trends in age as well as time.

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