The platform for open and practice-oriented research

product

Physical activity and physical fitness in children with heritable connective tissue disorders

Objectives: Health problems in patients with heritable connective tissue disorders (HCTD) are diverse and complex and might lead to lower physical activity (PA) and physical fitness (PF). This study aimed to investigate the PA and PF of children with heritable connective tissue disorders (HCTD).Methods: PA was assessed using an accelerometer-based activity monitor (ActivPAL) and the mobility subscale of the Pediatric Evaluation of Disability Inventory Computer Adaptive Test (PEDI-CAT). PF was measured in terms of cardiovascular endurance using the Fitkids Treadmill Test (FTT); maximal hand grip strength, using hand grip dynamometry (HGD) as an indicator of muscle strength; and motor proficiency, using the Bruininks-Oseretsky Test of Motor Proficiency-2 (BOTMP-2).Results: A total of 56 children, with a median age of 11.6 (interquartile range [IQR], 8.8–15.8) years, diagnosed with Marfan syndrome (MFS), n = 37, Loeys-Dietz syndrome (LDS), n = 6, and genetically confirmed Ehlers-Danlos (EDS) syndromes, n = 13 (including classical EDS n = 10, vascular EDS n = 1, dermatosparaxis EDS n = 1, arthrochalasia EDS n = 1), participated. Regarding PA, children with HCTD were active for 4.5 (IQR 3.5–5.2) hours/day, spent 9.2 (IQR 7.6–10.4) hours/day sedentary, slept 11.2 (IQR 9.5–11.5) hours/day, and performed 8,351.7 (IQR 6,456.9–1,0484.6) steps/day. They scored below average (mean (standard deviation [SD]) z-score −1.4 (1.6)) on the PEDI-CAT mobility subscale. Regarding PF, children with HCTD scored well below average on the FFT (mean (SD) z-score −3.3 (3.2)) and below average on the HGD (mean (SD) z-score −1.1 (1.2)) compared to normative data. Contradictory, the BOTMP-2 score was classified as average (mean (SD) z-score.02 (.98)). Moderate positive correlations were found between PA and PF (r(39) = .378, p < .001). Moderately sized negative correlations were found between pain intensity and fatigue and time spent actively (r(35) = .408, p < .001 and r(24) = .395 p < .001, respectively).Conclusion: This study is the first to demonstrate reduced PA and PF in children with HCTD. PF was moderately positively correlated with PA and negatively correlated with pain intensity and fatigue. Reduced cardiovascular endurance, muscle strength, and deconditioning, combined with disorder-specific cardiovascular and musculoskeletal features, are hypothesized to be causal. Identifying the limitations in PA and PF provides a starting point for tailor-made interventions.

PDF

Physical activity and physical fitness in children with heritable connective tissue disorders

product

Over het meten van gedragsaspecten in organisaties

De term soft control wordt gebruikt voor een keur aan sturings- en beheersmaatregelen die organisaties helpen op koers te blijven. Ze hebben vooral betrekking op gedrag en cultuur. Uit ons inventariserend onderzoek blijkt dat er geen eenduidigheid over de definitie van soft control is en al helemaal niet over de manier waarop soft control wordt uitgewerkt. Hierdoor zijn veel uitwerkingen en meetinstrumenten voor soft control in omloop. In dit artikel vragen we ons af hoe we de kwaliteit van meetinstrumenten voor soft control kunnen beoordelen. Op basis van een aantal methodologische criteria ontwikkelen we een ordeningskader van deze instrumenten. Hiermee scheppen we helderheid in de fascinerende wereld van sociaalwetenschappelijke meetinstrumenten.

PDF

Over het meten van gedragsaspecten in organisaties

product

Outreach governance

This book describes how policy workers and administrators of local councils and non-profit organisations can contribute to a social domain in which the people’s strengths are better utilized within the framework of the Social Support Act (Wmo). The book is built up around the three assignments a government sees itself faced with: - The transformation from less of a system world to more of a lifeworld. - The transformation from ‘steering’ in a less top-down to a more bottom-up way. - The transformation from less deductive to more inductive learning and development. In this book they describe how representatives of steering force can contribute to this transformation. In their conclusion, the authors state these representatives cannot ultimately fulfill the role of director in the transformation of the social domain geared to the strengths in the lifeworld. They can help to make the transformation less dependent on ‘higher powers’. The authors end their book with recommendations and suggestions for further research on the topic of WMO. This book is a translated version of “Outreachend besturen in tijden van transitie”, published by Movisie.

PDF

product

Low muscle quality on a procedural computed tomography scan assessed with deep learning as a practical useful predictor of mortality in patients with severe aortic valve stenosis

Background & aims: Accurate diagnosis of sarcopenia requires evaluation of muscle quality, which refers to the amount of fat infiltration in muscle tissue. In this study, we aim to investigate whether we can independently predict mortality risk in transcatheter aortic valve implantation (TAVI) patients, using automatic deep learning algorithms to assess muscle quality on procedural computed tomography (CT) scans. Methods: This study included 1199 patients with severe aortic stenosis who underwent transcatheter aortic valve implantation (TAVI) between January 2010 and January 2020. A procedural CT scan was performed as part of the preprocedural-TAVI evaluation, and the scans were analyzed using deep-learning-based software to automatically determine skeletal muscle density (SMD) and intermuscular adipose tissue (IMAT). The association of SMD and IMAT with all-cause mortality was analyzed using a Cox regression model, adjusted for other known mortality predictors, including muscle mass. Results: The mean age of the participants was 80 ± 7 years, 53% were female. The median observation time was 1084 days, and the overall mortality rate was 39%. We found that the lowest tertile of muscle quality, as determined by SMD, was associated with an increased risk of mortality (HR 1.40 [95%CI: 1.15–1.70], p < 0.01). Similarly, low muscle quality as defined by high IMAT in the lowest tertile was also associated with increased mortality risk (HR 1.24 [95%CI: 1.01–1.52], p = 0.04). Conclusions: Our findings suggest that deep learning-assessed low muscle quality, as indicated by fat infiltration in muscle tissue, is a practical, useful and independent predictor of mortality after TAVI.

PDF

Low muscle quality on a procedural computed tomography scan assessed with deep learning as a practical useful predictor of mortality in patients with severe aortic valve stenosis

product

Early high protein intake and mortality in critically ill ICU patients with low skeletal muscle area and -density

Background & aims: Optimal nutritional support during the acute phase of critical illness remains controversial. We hypothesized that patients with low skeletal muscle area and -density may specifically benefit from early high protein intake. Aim of the present study was to determine the association between early protein intake (day 2–4) and mortality in critically ill intensive care unit (ICU) patients with normal skeletal muscle area, low skeletal muscle area, or combined low skeletal muscle area and -density. Methods: Retrospective database study in mechanically ventilated, adult critically ill patients with an abdominal CT-scan suitable for skeletal muscle assessment around ICU admission, admitted from January 2004 to January 2016 (n = 739). Patients received protocolized nutrition with protein target 1.2–1.5 g/kg/day. Skeletal muscle area and -density were assessed on abdominal CT-scans at the 3rd lumbar vertebra level using previously defined cut-offs. Results: Of 739 included patients (mean age 58 years, 483 male (65%), APACHE II score 23), 294 (40%) were admitted with normal skeletal muscle area and 445 (60%) with low skeletal muscle area. Two hundred (45% of the low skeletal muscle area group) had combined low skeletal muscle area and -density. In the normal skeletal muscle area group, no significant associations were found. In the low skeletal muscle area group, higher early protein intake was associated with lower 60-day mortality (adjusted hazard ratio (HR) per 0.1 g/kg/day 0.82, 95%CI 0.73–0.94) and lower 6-month mortality (HR 0.88, 95%CI 0.79–0.98). Similar associations were found in the combined low skeletal muscle area and -density subgroup (HR 0.76, 95%CI 0.64–0.90 for 60-day mortality and HR 0.80, 95%CI 0.68–0.93 for 6-month mortality). Conclusions: Early high protein intake is associated with lower mortality in critically ill patients with low skeletal muscle area and -density, but not in patients with normal skeletal muscle area on admission. These findings may be a further step to personalized nutrition, although randomized studies are needed to assess causality.

PDF

Early high protein intake and mortality in critically ill ICU patients with low skeletal muscle area and -density

product

Wat maakt samen beslissen zo complex?

Inleiding Van praktijkondersteuners wordt verwacht dat zij samen met chronische zieke patiënten doelen en actieplannen formuleren. Dit vraagt een verandering van hun rol: van medisch expert naar coach. Wij onderzochten de ervaringen van praktijkondersteuners en patiënten met COACH, een nieuwe aanpak voor gezamenlijke besluitvorming, en hun mening over de implementatiemogelijkheden van deze aanpak. Methode Vijftien praktijkondersteuners in Noord-Limburg kregen een training in de nieuwe aanpak; 23 patiënten deden mee aan het onderzoek. De kwantitatieve en kwalitatieve procesevaluatie omvatte individuele interviews (n = 15), een focusgroep (n = 9) en vragenlijstonderzoek bij de praktijkondersteuners, interviews met patiënten (n = 10) en dertien audio-opnamen van een consult. Resultaten De praktijkondersteuners vonden COACH waardevol om tot persoonsgerichte doelen te komen, maar moeilijk te integreren in de bestaande werkroutines. Ze ervoeren een rolconflict ten aanzien van het medisch protocol en voelden zich daarin weinig ondersteund door de huisartsen. De helft van de geïnterviewde patiënten merkte geen verschil in de werkwijze van de praktijkondersteuner; de anderen meldden dat de praktijkondersteuner meer vragen had gesteld en dat zij meer inzicht in hun situatie hadden gekregen. Conclusie Om praktijkondersteuners daadwerkelijk te kunnen inschakelen bij gezamenlijke besluitvorming, zullen praktijkondersteuners en huisartsen samen moeten nadenken over een gezamenlijke rolopvatting.

PDF

product

Calculation of protein requirements

Background & aims: In dietary practice, it is common to estimate protein requirements on actual bodyweight, but corrected bodyweight (in cases with BMI <20 kg/m2 and BMI ≥30 kg/m2) and fat free mass (FFM) are also used. Large differences on individual level are noticed in protein requirements using these different approaches. To continue this discussion, the answer is sought in a large population to the following question: Will choosing actual bodyweight, corrected bodyweight or FFM to calculate protein requirements result in clinically relevant differences? Methods: This retrospective database study, used data from healthy persons ≥55 years of age and in- and outpatients ≥18 years of age. FFM was measured by air displacement plethysmography technology or bioelectrical impedance analysis. Protein requirements were calculated as 1) 1.2 g (g) per kilogram (kg) actual bodyweight or 2) corrected bodyweight or 3) 1.5 g per kg FFM. To compare these three approaches, the approach in which protein requirement is based on FFM, was used as reference method. Bland–Altman plots with limits of agreement were used to determine differences, analyses were performed for both populations separately and stratified by BMI category and gender. Results: In total 2291 subjects were included. In the population with relatively healthy persons (n = 506, ≥55 years of age) mean weight is 86.5 ± 18.2 kg, FFM is 51 ± 12 kg and in the population with adult in- and outpatients (n = 1785, ≥18 years of age) mean weight is 72.5 ± 18.4 kg, FFM is 51 ± 11 kg. Clinically relevant differences were found in protein requirement between actual bodyweight and FFM in most of the participants with overweight, obesity or severe obesity (78–100%). Using corrected bodyweight, an overestimation in 48–92% of the participants with underweight, healthy weight and overweight is found. Only in the Amsterdam UMC population, protein requirement is underestimated when using the approach of corrected bodyweight in participants with severe obesity. Conclusion: The three approaches in estimation of protein requirement show large differences. In the majority of the population protein requirement based on FFM is lower compared to actual or corrected bodyweight. Correction of bodyweight reduces the differences, but remain unacceptably large. It is yet unknown which method is the best for estimation of protein requirement. Since differences vary by gender due to differences in body composition, it seems more accurate to estimate protein requirement based on FFM. Therefore, we would like to advocate for more frequent measurement of FFM to determine protein requirements, especially when a deviating body composition is to be expected, for instance in elderly and persons with overweight, obesity or severe obesity.

PDF

product

Outreachend besturen in tijden van transitie

Dit boek beschrijft hoe beleidsmedewerkers en bestuurders van gemeenten en non-profitorganisaties kunnen bijdragen aan een sociaal domein dat de krachten van mensen beter benut. Het thema is outreachend werken: het vergroten van de kansen op preventie, herstel, sociale stijging en zelfredzaamheid van specifieke groepen mensen in zorgwekkende omstandigheden. Het onderzoek beschrijft vijf beloftevolle outreachende praktijken met/voor mensen in kwetsbare omstandigheden. De auteurs beschrijven de transitie van systeem- naar leefwereld, van top-down naar bottom-up aansturing van de sociale sector, van deductief naar inductief leren en ontwikkelen.

PDF

Outreachend besturen in tijden van transitie

product

The Participant Journey Map: Understanding the design of interactive Augmented Play Spaces

Augmented Play Spaces (APS) are (semi-) public environments where playful interaction isfacilitated by enriching the existing environment with interactive technology. APS canpotentially facilitate social interaction and physical activity in (semi-)public environments. Incontrolled settings APS show promising effects. However, people’s willingness to engagewith APSin situ, depends on many factors that do not occur in aforementioned controlledsettings (where participation is obvious). To be able to achieve and demonstrate thepositive effects of APS when implemented in (semi-)public environments, it is important togain more insight in how to motivate people to engage with them and better understandwhen and how those decisions can be influenced by certain (design) factors. TheParticipant Journey Map (PJM) was developed following multiple iterations. First,based on related work, and insights gained from previously developed andimplemented APS, a concept of the PJM was developed. Next, to validate and refinethe PJM, interviews with 6 experts with extensive experience with developing andimplementing APS were conducted. Thefirst part of these interviews focused oninfluential (design) factors for engaging people into APS. In the second part, expertswere asked to provide feedback on thefirst concept of the PJM. Based on the insightsfrom the expert interviews, the PJM was adjusted and refined. The Participant JourneyMap consists of four layers: Phases, States, Transitions and Influential Factors. There aretwo overarchingphases:‘Onboarding’and‘Participation’and 6statesa (potential)participant goes through when engaging with an APS:‘Transit,’‘Awareness,’‘Interest,’‘Intention,’‘Participation,’‘Finishing.’Transitionsindicate movements between states.Influential factorsare the factors that influence these transitions. The PJM supportsdirections for further research and the design and implementation of APS. Itcontributes to previous work by providing a detailed overview of a participant journeyand the factors that influence motivation to engage with APS. Notable additions are thedetailed overview of influential factors, the introduction of the states‘Awareness,’‘Intention’and‘Finishing’and the non-linear approach. This will support taking intoaccount these often overlooked, key moments in future APS research and designprojects. Additionally, suggestions for future research into the design of APS are given.

PDF

Search results

Products 55

Physical activity and physical fitness in children with heritable connective tissue disorders