Parents' information needs during the first year at home with their very premature born child; a qualitative study.

Objective: To obtain insights into parents' information needs during the first year at home with their very preterm (VP) born infant. Methods: We conducted semi-structured interviews with parents of VP infants participating in a post-discharge responsive parenting intervention (TOP program). Online interviews were audiotaped and transcribed verbatim. Inductive thematic analysis was performed by two independent coders. Results: Ten participants were interviewed and had various and changing information needs during the developmental trajectory of their infant. Three main themes emerged; (1) Help me understand and cope, (2) Be fully responsible for my baby, and (3) Teach me to do it myself. Available and used sources, such as the Internet, did not meet their information needs. Participants preferred their available and knowledgeable healthcare professionals for reassurance, tailored information, and practical guidance. Conclusion: This study identified parents' information needs during the first year at home with their VP infant and uncovered underlying re-appearing needs to gain confidence in child-caring abilities and autonomy in decision-making about their infants' care. Innovation: This study provides valuable information for healthcare professionals and eHealth developers to support parental self-efficacy during the first year after preterm birth.

Physical fitness in children with Marfan and Loeys-Dietz syndrome: associations between cardiovascular parameters, systemic manifestations, fatigue, and pain.

Children with Marfan (MFS) and Loeys-Dietz syndrome (LDS) report limitations in physical activities, sports, school, leisure, and work participation in daily life. This observational, cross-sectional, multicenter study explores associations between physical fitness and cardiovascular parameters, systemic manifestations, fatigue, and pain in children with MFS and LDS. Forty-two participants, aged 6-18 years (mean (SD) 11.5(3.7)), diagnosed with MFS (n = 36) or LDS (n = 6), were enrolled. Physical fitness was evaluated using the Fitkids Treadmill Test's time to exhaustion (TTE) outcome measure. Cardiovascular parameters (e.g., echocardiographic parameters, aortic surgery, cardiovascular medication) and systemic manifestations (systemic score of the revised Ghent criteria) were collected. Pain was obtained by visual analog scale. Fatigue was evaluated by PROMIS® Fatigue-10a-Pediatric-v2.0-short-form and PROMIS® Fatigue-10a-Parent-Proxy-v2.0-short-form. Multivariate linear regression analyses explored associations between physical fitness (dependent variable) and independent variables that emerged from the univariate linear regression analyses (criterion p < .05). The total group (MFS and LDS) and the MFS subgroup scored below norms on physical fitness TTE Z-score (mean (SD) -3.1 (2.9); -3.0 (3.0), respectively). Univariate analyses showed associations between TTE Z-score aortic surgery, fatigue, and pain (criterion p < .05). Multivariate analyses showed an association between physical fitness and pediatric self-reported fatigue that explained 48%; 49%, respectively, of TTE Z-score variance (F (1,18) = 18.6, p ≤ .001, r2 = .48; F (1,15) = 16,3, p = .01, r2 = .49, respectively).    Conclusions: Physical fitness is low in children with MFS or LDS and associated with self-reported fatigue. Our findings emphasize the potential of standardized and tailored exercise programs to improve physical fitness and reduce fatigue, ultimately enhancing the physical activity and sports, school, leisure, and work participation of children with MFS and LDS. What is Known: • Marfan and Loeys-Dietz syndrome are heritable connective tissue disorders and share cardiovascular and systemic manifestations. • Children with Marfan and Loeys-Dietz syndrome report increased levels of disability, fatigue and pain, as well as reduced levels of physical activity, overall health and health-related quality of life. What is New: • Physical fitness is low in children with Marfan and Loeys-Dietz syndrome and associated with self-reported fatigue. • Our findings emphasize the potential of standardized and tailored exercise programs to improve physical fitness and reduce fatigue, ultimately enhancing the physical activity and sports, school, leisure, and work participation of children with Marfan and Loeys-Dietz syndrome.

Metabolic load during morning care and active bed exercises in critically ill patients: An explorative study.

BACKGROUND: To avoid overexertion in critically ill patients, information on the physical demand, i.e., metabolic load, of daily care and active exercises is warranted. OBJECTIVE: The objective of this study was toassess the metabolic load during morning care activities and active bed exercises in mechanically ventilated critically ill patients. METHODS: This study incorporated an explorative observational study executed in a university hospital intensive care unit. Oxygen consumption (VO2) was measured in mechanically ventilated (≥48 h) critically ill patients during rest, routine morning care, and active bed exercises. We aimed to describe and compare VO2 in terms of absolute VO2 (mL) defined as the VO2 attributable to the activity and relative VO2 in mL per kilogram bodyweight, per minute (mL/kg/min). Additional outcomes achieved during the activity were perceived exertion, respiratory variables, and the highest VO2 values. Changes in VO2 and activity duration were tested using paired tests. RESULTS: Twenty-one patients were included with a mean (standard deviation) age of 59 y (12). Median (interquartile range [IQR]) durations of morning care and active bed exercises were 26 min (21-29) and 7 min (5-12), respectively. Absolute VO2 of morning care was significantly higher than that of active bed exercises (p = 0,009). Median (IQR) relative VO2 was 2.9 (2.6-3.8) mL/kg/min during rest; 3.1 (2.8-3.7) mL/kg/min during morning care; and 3.2 (2.7-4) mL/kg/min during active bed exercises. The highest VO2 value was 4.9 (4.2-5.7) mL/kg/min during morning care and 3.7 (3.2-5.3) mL/kg/min during active bed exercises. Median (IQR) perceived exertion on the 6-20 Borg scale was 12 (10.3-14.5) during morning care (n = 8) and 13.5 (11-15) during active bed exercises (n = 6). CONCLUSION: Absolute VO2 in mechanically ventilated patients may be higher during morning care than during active bed exercises due to the longer duration of the activity. Intensive care unit clinicians should be aware that daily-care activities may cause intervals of high metabolic load and high ratings of perceived exertion.

"Your brain can't wait": perspectives of children and adolescents with acquired brain injury and their parents on physical rehabilitation during the subacute phase.

PURPOSE: Physical interventions during subacute rehabilitation have potential to improve functional recovery. This study explored the perspectives of children and adolescents with acquired brain injury (ABI) and their parents with respect to physical rehabilitation during the subacute phase. METHODS: Thirteen children and adolescents with ABI and their parents were included and interviewed using semi-structured interviews. Interview transcripts were analysed using inductive thematic analysis approach. RESULTS: Six themes were identified: 1) beliefs of physical rehabilitation, 2) content of physical rehabilitation, 3) tailored care, 4) impact of context, 5) communication and 6) transition. The importance of intensive physical practice was widely supported. The positive can-do mentality was emphasised to create an atmosphere of hope, meaning that every effort would be made to achieve maximum recovery. Intensive involvement of parents is considered essential during subacute rehabilitation including an open and mutual dialogue about the focus of rehabilitation, therapy goals and future participation in their own environment. CONCLUSIONS: Our findings highlight the need for an intensive rehabilitation approach, tailored to the individual's needs. The perspectives of children and adolescents and their parents in our study contribute to a better understanding of factors that are important for optimal recovery through physical rehabilitation during the subacute phase.

Children with acquired brain injury and their parents indicate the potential and thus the importance of intensive physical practice to enhance optimal recovery.Involvement of parents and the potential of their continuous presence during subacute rehabilitation may have a positive impact on the effect of rehabilitation efforts.The positive can-do mentality of rehabilitation professionals creates an atmosphere of hope and is an important requisite to achieve maximum recovery.Open dialogue between clinicians and the family is warranted about the focus of interventions.

Development of expert consensus to guide physical rehabilitation in children and adolescents with acquired brain injury during the subacute phase.

OBJECTIVE: To develop consensus among experts to guide physical rehabilitation in children and adolescents with acquired brain injury during the subacute phase. DESIGN: International Delphi study. METHODS: A 3-round online Delphi study was conducted with 11 international experts in rehabilitation for children and adolescents with acquired brain injury. The first round consisted of open-ended questions; the second and third round consisted of ranking 139 statements on a 5-point Likert scale. RESULTS: The panel reached consensus on 116/139 statements. Consensus was reached on the importance of age, pre-injury developmental stage and the clinical presentation of the child when determining content and focus of physical rehabilitation. In addition, consensus was reached on the importance of participation-focused interventions, and involvement of family members in goal-setting and therapeutic activities. Although dosage was deemed very important, no consensus was reached for determination of dose-response variables to suit and influence the child's needs. CONCLUSION: This study provides a framework for clinicians to design physical rehabilitation interventions in children with acquired brain injury in the sub-acute recovery phase. The promotion of physical activity in meaningful contexts and involvement of family members are considered as important components to optimize recovery.

Development and evaluation of a fidelity tool in a post-discharge responsive parenting intervention program for very preterm born children.

The TOP program is a fully implemented responsive parenting intervention for very preterm born infants. Fidelity monitoring of interventions is important for preserving program adherence, impact outcomes and to make evidence-based adaptations. The aim of this study was to develop a fidelity tool for the TOP program following an iterative and co-creative process and subsequently evaluate the reliability of the tool. Three consecutive phases were carried out. Phase I: Initial development and pilot testing two methods namely self-report and video based observation. Phase II: Adaptations and refinements. Phase III: Evaluation of the psychometric properties of the tool based on 20 intervention videos rated by three experts.The interrater reliability of the adherence and competence subscales was good (ICC.81 to .84) and varied from moderate to excellent for specific items (ICC between .51 and .98). The FITT displayed a high correlation (Spearman's rho.79 to.82) between the subscales and total impression item. The co-creative and iterative process resulted in a clinical useful and reliable tool for evaluating fidelity in the TOP program. This study offers insights in the practical steps in the development of a fidelity assessment tool which can be used by other intervention developers.

Somatic symptoms, pain, catastrophizing and the association with disability among children with heritable connective tissue disorders.

The aim of the present study was to investigate the nature and prevalence of nonspecific somatic symptoms, pain and catastrophizing in children with Heritable Connective Tissue Disorders (HCTD), and to determine their association with disability. This observational, multicenter study included 127 children, aged 4-18 years, with Marfan syndrome (MFS) (59%), Loeys-Dietz syndrome (LDS) (8%), Ehlers-Danlos syndromes (EDS) (12%) and hypermobile Ehlers-Danlos syndrome (hEDS) (23%). The assessments included the Children's Somatization Inventory or parent proxy (CSI, PCSI), pain visual-analogue scale (VAS), SUPERKIDZ body diagram, Pain Catastrophizing Scale Child or parent proxy (PCS-C, PCS-P) and Childhood Health Assessment Questionnaire (CHAQ-30). Data from children aged ≥8 years were compared to normative data. In children ≥ 8 years (n = 90), pain was present in 59%, with a median of 4 (IQR = 3-9) pain areas. Compared to normative data, the HCTD group reported significantly higher on the CSI (p ≤ 0.001, d = 0.85), VAS pain intensity (p ≤ 0.001, d = 1.22) and CHAQ-30 (p ≤ 0.001, d = 1.16) and lower on the PCS-C (p = 0.017, d = -0.82) and PCS-P (p ≤ 0.001, d = -0.49). The intensity of nonspecific somatic symptoms and pain explained 45% of the variance in disability (r2 = 0.45 F(2,48) = 19.70, p ≤ 0.001). In children ≤ 7 years (n = 37), pain was present in 35% with a median of 5(IQR = 1-13) pain areas. The mean(SD) VAS scores for pain intensity was 1.5(2.9). Functional disability was moderately correlated to the number of pain areas (r = 0.56, p ≤ 0.001), intensity of nonspecific somatic symptoms (r = 0.63, p ≤ 0.001) and pain (r = 0.83, p ≤ 0.001). In conclusion, this study supports the need for comprehensive assessment of nonspecific somatic symptoms, pain, and disability in children with HCTD to allow tailored treatment.

Pediatric joint hypermobility: a diagnostic framework and narrative review.

BACKGROUND: Hypermobile Ehlers-Danlos syndrome (hEDS) and hypermobility spectrum disorders (HSD) are debilitating conditions. Diagnosis is currently clinical in the absence of biomarkers, and criteria developed for adults are difficult to use in children and biologically immature adolescents. Generalized joint hypermobility (GJH) is a prerequisite for hEDS and generalized HSD. Current literature identifies a large proportion of children as hypermobile using a Beighton score ≥ 4 or 5/9, the cut off for GJH in adults. Other phenotypic features from the 2017 hEDS criteria can arise over time. Finally, many comorbidities described in hEDS/HSD are also seen in the general pediatric and adolescent population. Therefore, pediatric specific criteria are needed. The Paediatric Working Group of the International Consortium on EDS and HSD has developed a pediatric diagnostic framework presented here. The work was informed by a review of the published evidence. OBSERVATIONS: The framework has 4 components, GJH, skin and tissue abnormalities, musculoskeletal complications, and core comorbidities. A Beighton score of ≥ 6/9 best identifies children with GJH at 2 standard deviations above average, based on published general population data. Skin and soft tissue changes include soft skin, stretchy skin, atrophic scars, stretch marks, piezogenic papules, and recurrent hernias. Two symptomatic groups were agreed: musculoskeletal and systemic. Emerging comorbid relationships are discussed. The framework generates 8 subgroups, 4 pediatric GJH, and 4 pediatric generalized hypermobility spectrum disorders. hEDS is reserved for biologically mature adolescents who meet the 2017 criteria, which also covers even rarer types of Ehlers-Danlos syndrome at any age. CONCLUSIONS: This framework allows hypermobile children to be categorized into a group describing their phenotypic and symptomatic presentation. It clarifies the recommendation that comorbidities should be defined using their current internationally accepted frameworks. This provides a foundation for improving clinical care and research quality in this population.

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.

Course of recovery of respiratory muscle strength and its associations with exercise capacity and handgrip strength: A prospective cohort study among survivors of critical illness.

BACKGROUND: Mechanical ventilation affects the respiratory muscles, but little is known about long-term recovery of respiratory muscle weakness (RMW) and potential associations with physical functioning in survivors of critical illness. The aim of this study was to investigate the course of recovery of RMW and its association with functional outcomes in patients who received mechanical ventilation. METHODS: We conducted a prospective cohort study with 6-month follow-up among survivors of critical illness who received ≥ 48 hours of invasive mechanical ventilation. Primary outcomes, measured at 3 timepoints, were maximal inspiratory and expiratory pressures (MIP/MEP). Secondary outcomes were functional exercise capacity (FEC) and handgrip strength (HGS). Longitudinal changes in outcomes and potential associations between MIP/MEP, predictor variables, and secondary outcomes were investigated through linear mixed model analysis. RESULTS: A total of 59 participants (male: 64%, median age [IQR]: 62 [53-66]) were included in this study with a median (IQR) ICU and hospital length of stay of 11 (8-21) and 35 (21-52) days respectively. While all measures were well below predicted values at hospital discharge (MIP: 68.4%, MEP 76.0%, HGS 73.3% of predicted and FEC 54.8 steps/2m), significant 6-month recovery was seen for all outcomes. Multivariate analyses showed longitudinal associations between older age and decreased MIP and FEC, and longer hospital length of stay and decreased MIP and HGS outcomes. In crude models, significant, longitudinal associations were found between MIP/MEP and FEC and HGS outcomes. While these associations remained in most adjusted models, an interaction effect was observed for sex. CONCLUSION: RMW was observed directly after hospital discharge while 6-month recovery to predicted values was noted for all outcomes. Longitudinal associations were found between MIP and MEP and more commonly used measures for physical functioning, highlighting the need for continued assessment of respiratory muscle strength in deconditioned patients who are discharged from ICU. The potential of targeted training extending beyond ICU and hospital discharge should be further explored.

Recommendations for an exercise intervention and core outcome set for older patients after hospital discharge: Results of an international Delphi study.

For older adults, acute hospitalization is a high-risk event with poor health outcomes, including functional decline. In absence of practical guidelines and high quality randomized controlled trials, this Delphi study was conducted. The aim of this study was to obtain consensus on an exercise intervention program, a core outcome set (COS) and handover information to prevent functional decline or restore physical function in acutely hospitalized older patients transitioning from hospital to home. An internal panel of experts in the field of exercise interventions for acutely hospitalized older adults were invited to join the study. In the Delphi study, relevant topics were recognized, statements were formulated and ranked on a 9-point Likert scale in two additional rounds. To reaching consensus, a score of 7-9 was classified as essential. Results were expressed as median and semi-interquartile range (SIQR), and consensus threshold was set at SIQR≤0.5. Fifteen international experts from eight countries participated in the panel. The response rate was 93%, 93% and 80% for the three rounds respectively. After three rounds, consensus was reached on 167 of the 185 (90.3%) statements, of which ninety-five (51.4%) were ranked as essential (median Likert-score ≥7.0, SIQR ≤0.5). This Delphi study provides starting points for developing an exercise intervention, a COS and handover information. The results of this Delphi study can assist physical therapists to provide a tailored exercise intervention for older patients with complex care needs after hospital discharge, to prevent functional decline and/or restore physical function.

An exploratory study of clinical characteristics and gait features of adolescents with hypermobility disorders.

BACKGROUND: In adolescents with non-pathological and pathological joint hypermobility, gait deviations have been associated with pain and fatigue. It remains unclear what distinguishes the non-pathological form of joint hypermobility (JH) from pathological forms (i.e. hypermobile Ehlers-Danlos syndrome (hEDS) or hypermobility spectrum disorders (HSD). Our objective was to identify discriminative clinical characteristics and biomechanical gait features between adolescents with hEDS/HSD, JH, and healthy controls (HC). METHODS: Thirty-two adolescents were classified into three subgroups (hEDS/HSD=12, JH=5, HC=15). Clinical characteristics (e.g. pain intensity and surface, fatigue, functional disability) were inventoried. The gait pattern was assessed using a three-dimensional, eight-camera VICON MX1.3 motion capture system, operating at a sample rate of 100 Hz (VICON, Oxford, UK). Spatiotemporal parameters, joint angles (sagittal plane), joint work, joint impulse, ground reaction force and gait variability expressed as percentage using Principal Component Analysis (PCA) were assessed and analysed using multivariate analysis. Multivariate analysis data is expressed in mean differences(MD), standard error(SE) and P-values. RESULTS: The hEDS/HSD-group had significantly higher fatigue score (+51.5 points, p = <0.001) and functional disability (+1.6, p < .001) than the HC-group. Pain intensity was significantly higher in the hEDS/HSD-group than the other subgroups (JH; +37 mm p = .004, HC; +38 mm, p = .001). The hEDS/HSD-group showed significantly more gait variability (JH; +7.2(2.0)% p = .003, HC; + 7.8(1.4)%, p = <0.001) and lower joint work (JH; -0.07(0.03)J/kg, p = .007, HC; - 0.06(0.03)J/kg, p = .013) than the other subgroups. The JH-group showed significantly increased ankle dorsiflexion during terminal stance (+5.0(1.5)degree, p = .001) compared to hEDS/HSD-group and knee flexion during loading response compared to HC-group (+5.7(1.8) degree, p = .011). SIGNIFICANCE: A distinctive difference in gait pattern between adolescents with non-pathological and pathological joint hypermobility is found in gait variability, rather than in the biomechanical features of gait. This suggests that a specific gait variability metric is more appropriate than biomechanical individual joint patterns for assessing gait in adolescents with hEDS/HSD.

The additional value of e-Health for patients with a temporomandibular disorder: a mixed methods study on the perspectives of orofacial physical therapists and patients.

PURPOSE: To assess the experience and perceived added value of an e-Health application during the physical therapy treatment of patients with temporomandibular disorders (TMD). MATERIALS AND METHODS: A mixed-methods study including semi-structured interviews was performed with orofacial physical therapists (OPTs) and with TMD patients regarding their experience using an e-Health application, Physitrack. The modified telemedicine satisfaction and usefulness questionnaire and pain intensity score before and after treatment were collected from the patients. RESULTS: Ten OPTs, of which nine actively used Physitrack, described that the e-Health application can help to provide personalised care to patients with TMD, due to the satisfying content, user-friendliness, accessibility, efficiency, and ability to motivate patients. Ten patients, of which nine ended up using Physitrack, felt that shared decision-making was very important. These patients were positive towards the application as it was clear, convenient, and efficient, it helped with reassurance and adherence to the exercises and overall increased self-efficacy. This was mostly built on their experience with exercise videos, as this feature was most used. None of the OPTs or patients used all features of Physitrack. The overall satisfaction of Physitrack based on the telemedicine satisfaction and usefulness questionnaire (TSUQ) was 20.5 ± 4.0 and all patients (100%) showed a clinically relevant reduction of TMD pain (more than 2 points and minimally 30% difference). CONCLUSION: OPTs and patients with TMD shared the idea that exercise videos are of added value on top of usual physical therapy care for TMD complaints, which could be delivered through e-Health.Implications for RehabilitationPhysical therapists and patients with temporomandibular disorders do not use all features of the e-Health application Physitrack in a clinical setting.Exercise videos were the most often used feature and seen as most valuable by physical therapists and patients.Based on a small number of participants, e-Health applications such as Physitrack may be perceived as a valuable addition to the usual care, though this would need verification by a study designed to evaluate the therapeutic effect (e.g., a randomised clinical trial).

Translating Promoting Factors and Behavior Change Principles Into a Blended and Technology-Supported Intervention to Stimulate Physical Activity in Children With Asthma (Foxfit): Design Study.

BACKGROUND: Children with asthma can decrease the impact of their disease by improving their physical activity (PA). However, health care providers lack interventions for children with asthma that effectively increase their PA levels and achieve behavior change. A technology-supported approach can positively influence PA and physical functioning in children. OBJECTIVE: The aims of this study were to develop a technology-supported intervention that facilitates health care providers in promoting PA for children (aged 8 to 12 years) with asthma and to systematically describe this developmental process. METHODS: Intervention mapping (IM) was applied to develop a blended and technology-supported intervention in cocreation with children with asthma, their parents, and health care providers. In accordance with the IM framework, the following steps were performed: conduct a needs assessment; define the intervention outcome, performance objectives, and change objectives; select theory-based intervention methods and strategies; create components of the intervention and conduct pilot tests; create an implementation plan; and create an evaluation plan. RESULTS: We developed the blended intervention Foxfit that consists of an app with a PA monitor for children (aged 8 to 12 years) with asthma and a web-based dashboard for their health care provider. The intervention focuses on PA in everyday life to improve social participation. Foxfit contains components based on behavior change principles and gamification, including goal setting, rewards, action planning, monitoring, shaping knowledge, a gamified story, personal coaching and feedback, and a tailored approach. An evaluation plan was created to assess the intervention's usability and feasibility for both children and health care providers. CONCLUSIONS: The IM framework was very useful for systematically developing a technology-supported intervention and for describing the translational process from scientific evidence, the needs and wishes of future users, and behavior change principles into this intervention. This has led to the technology-supported intervention Foxfit that facilitates health care providers in promoting PA in children with asthma. The structured description of the development process and functional components shows the way behavior change techniques are incorporated in the intervention. TRIAL REGISTRATION: International Clinical Trial Registry Platform NTR6658; https://tinyurl.com/3rxejksf.

Bio-Electrical Impedance Analysis: A Valid Assessment Tool for Diagnosis of Low Appendicular Lean Mass in Older Adults?

Background: The diagnosis of sarcopenia is essential for early treatment of sarcopenia in older adults, for which assessment of appendicular lean mass (ALM) is needed. Multi-frequency bio-electrical impedance analysis (MF-BIA) may be a valid assessment tool to assess ALM in older adults, but the evidences are limited. Therefore, we validated the BIA to diagnose low ALM in older adults. Methods: ALM was assessed by a standing-posture 8 electrode MF-BIA (Tanita MC-780) in 202 community-dwelling older adults (age ≥ 55 years), and compared with dual-energy X-ray absorptiometry (DXA) (Hologic Inc., Marlborough, MA, United States; DXA). The validity for assessing the absolute values of ALM was evaluated by: (1) bias (mean difference), (2) percentage of accurate predictions (within 5% of DXA values), (3) the mean absolute error (MAE), and (4) limits of agreement (Bland-Altman analysis). The lowest quintile of ALM by DXA was used as proxy for low ALM (< 22.8 kg for men, < 16.1 kg for women). Sensitivity and specificity of diagnosing low ALM by BIA were assessed. Results: The mean age of the subjects was 72.1 ± 6.4 years, with a BMI of 25.4 ± 3.6 kg/m2, and 71% were women. BIA slightly underestimated ALM compared to DXA with a mean bias of -0.6 ± 1.2 kg. The percentage of accurate predictions was 54% with a MAE of 1.1 kg, and limits of agreement were -3.0 to + 1.8 kg. The sensitivity for ALM was 80%, indicating that 80% of subjects who were diagnosed as low ALM according to DXA were also diagnosed low ALM by BIA. The specificity was 90%, indicating that 90% of subjects who were diagnosed as normal ALM by DXA were also diagnosed as normal ALM by the BIA. Conclusion: This comparison showed a poor validity of MF-BIA to assess the absolute values of ALM, but a reasonable sensitivity and specificity to recognize the community-dwelling older adults with the lowest muscle mass.

The Better By Moving study: A multifaceted intervention to improve physical activity in adults during hospital stay.

OBJECTIVE: 'Better By Moving' is a multifaceted intervention developed and implemented in collaboration with patients and healthcare professionals to improve physical activity in hospitalized adults. This study aimed to understand if, how and why 'Better By Moving' resulted in higher levels of physical activity by evaluating both outcomes and implementation process. DESIGN: Mixed-methods study informed by the Medical Research Council guidance. SETTING: Tertiary hospital. PARTICIPANTS: Adult patients admitted to surgery, haematology, infectious diseases and cardiology wards, and healthcare professionals. MEASURES: Physical activity was evaluated before and after implementation using the Physical Activity Monitor AM400 on one random day during hospital stay between 8 am and 8 pm. Furthermore, the time spent lying on bed, length of stay and discharge destination was investigated. The implementation process was evaluated using an audit trail, surveys and interviews. RESULTS: There was no significant difference observed in physical activity (median [IQR] 23 [12-51] vs 27 [17-55] minutes, P = 0.107) and secondary outcomes before-after implementation. The intervention components' reach was moderate and adoption was low among patients and healthcare professionals. Patients indicated they perceived more encouragement from the environment and performed exercises more frequently, and healthcare professionals signalled increased awareness and confidence among colleagues. Support (priority, resources and involvement) was perceived a key contextual factor influencing the implementation and outcomes. CONCLUSION: Although implementing 'Better By Moving' did not result in significant improvements in outcomes at our centre, the process evaluation yielded important insights that may improve the effectiveness of implementing multifaceted interventions aiming to improve physical activity during hospital stay.

Heritable connective tissue disorders in childhood: Decreased health-related quality of life and mental health.

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.

Generalized Joint Hypermobility and Anxiety Are Serious Risk Factors for Dysfunctioning in Dance Students: A One-Year Follow-Up Study.

Young professional dancers find themselves in a demanding environment. GJH within dancers is often seen as aesthetically beneficial and a sign of talent but was found to be potentially disabling. Moreover, high-performing adolescents and young adults (HPAA), in this specific lifespan, might be even more vulnerable to anxiety-related disability. Therefore, we examined the development of the association between the presence of Generalized Joint Hypermobility (GJH) and anxiety within HPAA with a one-year follow-up. In 52.3% of the HPAA, anxiety did not change significantly over time, whereas GJH was present in 28.7%. Fatigue increased significantly in all HPAA at one year follow-up (respectively, females MD (SD) 18(19), p < 0.001 and males MD (SD) 9(19), p < 0.05). A significantly lower odds ratio (ß (95% CI) 0.4 (0.2−0.9); p-value 0.039) for participating in the second assessment was present in HPAA with GJH and anxiety with a 55% dropout rate after one year. This confirms the segregation between GJH combined with anxiety and GJH alone. The fatigue levels of all HPAA increased significantly over time to a serious risk for sick leave and work disability. This study confirms the association between GJH and anxiety but especially emphasizes the disabling role of anxiety. Screening for anxiety is relevant in HPAA with GJH and might influence tailored interventions.