The psychosocial consequences of growing up with Heritable Connective Tissue Disorders (HCTD) are largely unknown. We aimed to assess Health-Related Quality of Life (HRQoL) and mental health of children and adolescents with HCTD. This observational multicenter study included 126 children, aged 4–18 years, with Marfan syndrome (MFS, n = 74), Loeys–Dietz syndrome (n = 8), molecular confirmed Ehlers–Danlos syndromes (n = 15), and hypermobile Ehlers–Danlos syndrome (hEDS, n = 29). HRQoL and mental health were assessed through the parent and child-reported Child Health Questionnaires (CHQ-PF50 and CHQ-CF45, respectively) and the parent-reported Strengths and Difficulties Questionnaire. Compared with a representative general population sample, parent-reported HRQoL of the HCTD-group showed significantly decreased Physical sum scores (p < 0.001, d = 0.9) and Psychosocial sum scores (p = 0.024, d = 0.2), indicating decreased HRQoL. Similar findings were obtained for child-reported HRQoL. The parent-reported mental health of the HCTD-group showed significantly increased Total difficulties sum scores (p = 0.01, d = 0.3), indicating decreased mental health. While the male and female MFS- and hEDS-subgroups both reported decreased HRQoL, only the hEDS-subgroup reported decreased mental health. In conclusion, children and adolescents with HCTD report decreased HRQoL and mental health, with most adverse outcomes reported in children with hEDS and least in those with MFS. These findings call for systematic monitoring and tailored interventions.
from the article: Abstract Based on a review of recent literature, this paper addresses the question of how urban planners can steer urban environmental quality, given the fact that it is multidimensional in character, is assessed largely in subjective terms and varies across time. The paper explores three questions that are at the core of planning and designing cities: ‘quality of what?’, ‘quality for whom?’ and ‘quality at what time?’ and illustrates the dilemmas that urban planners face in answering these questions. The three questions provide a novel framework that offers urban planners perspectives for action in finding their way out of the dilemmas identified. Rather than further detailing the exact nature of urban quality, these perspectives call for an approach to urban planning that is integrated, participative and adaptive. ; ; sustainable urban development; trade-offs; quality dimensions
Given the growing number of older people, society as a whole should ideally provide a higher quality of life (QoL) for its ageing citizens through the concept of personalised ageing. Information and communication technologies (ICT) are subject to constant and rapid development, and can contribute to the goal of an improved QoL for older adults. In order to utilise future ICT solutions as a part of an age-friendly smart environment that helps achieve personalised ageing with an increased QoL, one must first determine whether the existing ICT solutions are satisfying the needs of older people. In order to accomplish that, this study contributes in three ways. First, it proposes a framework for the QoL of older adults, in order to provide a systematic review of the state-of-the-art literature and patents in this field. The second contribution is the finding that selected ICT solutions covered by articles and patents are intended for older adults and are validated by them. The third contribution of the study are the six recommendations that are derived from the review of the literature and the patents which would help move the agenda concerning the QoL of older people and personalised ageing with the use of ICT solutions forward. Original article at MDPI; DOI: http://dx.doi.org/10.3390/ijerph17082940 (This article belongs to the Special Issue Feature Papers "Age-Friendly Cities & Communities: State of the Art and Future Perspectives")
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Regular physical activity is considered to be an important component of a healthy lifestyle that decreases the risk of coronary heart disease, diabetes mellitus type 2, hypertension, colon and breast cancer, obesity and other debilitating conditions. Physical activity can also improve functional capacity and therefore also the quality of life in older adults. Despite all these favorable aspects, a substantial part of the Dutch older adult population is still underactive or even sedentary. To change this for the better, the Groningen Active Living Model (GALM) was developed.Aim of GALM is to stimulate recreational sports activities in sedentary and underactive older adults in the 55-65 age band. After a door-to-door visit as part of an intensive recruitment phase, a fitness test was conducted followed by the GALM recreational sports program. This program was based on principles from evolutionary-biological play theory and insights fromsocial cognitive theory. The program was versatile in nature (e.g. softball, dance, self-defense, swimming, athletics, etc.) in two main ways: a) to improve compliance with the program different sports were offered, which was reported to be more appealing for older adults; b) by aiming at more components of motor fitness (e.g. strength, flexibility, speed, endurance and coordination). Between 1997 and 2005 more than 552,000 persons were visited door-to-door, over 55,700 were tested, and 41,310 participated in the GALM recreational sports program. The aim of the present thesis is to determine the effects of participation in the GALM recreational sports program on physical activity, health and fitness outcomes.Chapter 2 describes the effectiveness of the GALM recruitment in selecting and recruiting sedentary and underactive older adults. Three municipalities in the Netherlands were selected, and in every municipality four neighborhoods were included. Two of each of the four neighborhoods were randomly assigned as intervention and the others as control neighborhoods. In total, 8,504 persons were mailed and received a home visit. During this home visit the GALM recruitment questionnaire was collected on which the selection between sedentary/underactive and physically active older adults was based. Ultimately we succeeded inincluding 12.3% (315 of the 2,551 qualifying) of the older adults, 79.4% of whom could be indeed considered sedentary or underactive. The cost of successfully recruiting an older adult was estimated at $84.To assess the effects of a physical activity intervention on health and fitness and explain the results, it is necessary to know program characteristics regarding frequency, intensity, time and content of the activities. With respect to the GALM recreational sports activity program, the only unknown characteristic was intensity. Chapter 3 describes the intensity of this program systematically. Using heart rate monitors, data of 97 persons (mean age 60.1 yr) were collected in three municipalities. The mean intensity of all 15 GALM sessions was 73.7% of the predicted maximal heart rate. Six percent of the monitored heart rate time could be classified as light, 33% as moderate and 61% as hard. In summary, the GALM recreational sports program meets the 1998 ACSM recommendations for intensity necessary to improve cardiorespiratory fitness.Chapters 4 and 5 describe the effects of 6 and 12 months of participation in the GALM recreational sports program, and 181 persons were followed over time. Results after 6 months revealed only few significant between-group differences favoring the intervention group (i.e. sleep, diastolic blood pressure, perceived fitness score and grip strength). Changes in energyexpenditure for leisure-time physical activities (EELTPA) showed an increase in both study groups. From 6 to 12 months a decrease in EELTPA occurred in the intervention group and an increase in the control group. The significant positive time effects for the health outcomes (diastolic blood pressure, BMI, percentage of body fat) that were found after 6 months were diminishedfrom 6 to 12 months. However, the energy expenditure for recreational sports activities (EERECSPORT) demonstrated a continuous increase over 12 months. Parallel to this, significant main effects for time were found in performance-based fitness outcomes (i.e. simple reaction time, leg strength, flexibility of hamstrings and lower back, and aerobic endurance). After 12 months only a significant between-group difference for flexibility of the hamstrings andlower back was found, favoring the control group. In conclusion, a short-term increase in EELTPA was found with accompanying improvements in health outcomes that more or less disappeared in 6 to 12 months. In the long term, results showed a continuous increase in EERECSPORT and performance-based fitness. This latter increase is probably a reflection of the significantimprovement over time in EERECSPORT and the fact that recreational sports activities are of a higher intensity.Aerobic endurance is regarded as the most important component of motor fitness that is relevant for older adults to function independently. In Chapter 6, the development in aerobic endurance after 18 months of participation in the GALM recreational sports program was assessed by means of changes in heart rate during fixed submaximal exercise. Since both groups were comparable regarding changes in energy expenditure for physical activity after 6 months and testing confirmed this, both groups were combined and considered as one group. Multilevel analyses were conducted and models for change were developed. A significant decrease in heart rate over time was found at all walking speeds (4, 5, 6 and 7 km/h). The average decrease in heart rate was 5.5, 6.0, 10.0 and 9.0 beats/min for the 4, 5, 6 and 7 km/h walking speeds, respectively. The relative decrease varied from 5.1 to 7.4% relative to average heart rates at baseline. These results illustrate that participation in the GALM recreational sports program has a positive significant effect on aerobic endurance, and that the participants are able to perform at submaximal intensity more easily.Based on the overall results it can be concluded that this study contributes to the field in how to effectively recruit sedentary and underactive older adults and stimulate them to become and stay active in recreational sports activities. As far as we know, this recruitment in combination with the recreational sport program is not only unique but also effective toward increasing performance-based fitness in the long term. Short-term effects were found in other leisure-time activities and health outcomes. To further stimulate other leisure-time and probably health outcomes besides the favorable effects that were already seen, additional interventions that pay more attention to behavioral change in terms of how to integrate other activities besides sports activities are recommended.
