Heritable Connective Tissue Disorders (HCTD) show an overlap in the physical features that can evolve in childhood. It is unclear to what extent children with HCTD experience burden of disease. This study aims to quantify fatigue, pain, disability and general health with standardized validated questionnaires.METHODS: This observational, multicenter study included 107 children, aged 4-18 years, with Marfan syndrome (MFS), 58%; Loeys-Dietz syndrome (LDS), 7%; Ehlers-Danlos syndromes (EDS), 8%; and hypermobile Ehlers-Danlos syndrome (hEDS), 27%. The assessments included PROMIS Fatigue Parent-Proxy and Pediatric self-report, pain and general health Visual-Analogue-Scales (VAS) and a Childhood Health Assessment Questionnaire (CHAQ).RESULTS: Compared to normative data, the total HCTD-group showed significantly higher parent-rated fatigue T-scores (M = 53 (SD = 12), p = 0.004, d = 0.3), pain VAS scores (M = 2.8 (SD = 3.1), p < 0.001, d = 1.27), general health VAS scores (M = 2.5 (SD = 1.8), p < 0.001, d = 2.04) and CHAQ disability index scores (M = 0.9 (SD = 0.7), p < 0.001, d = 1.23). HCTD-subgroups showed similar results. The most adverse sequels were reported in children with hEDS, whereas the least were reported in those with MFS. Disability showed significant relationships with fatigue (p < 0.001, rs = 0.68), pain (p < 0.001, rs = 0.64) and general health (p < 0.001, rs = 0.59).CONCLUSIONS: Compared to normative data, children and adolescents with HCTD reported increased fatigue, pain, disability and decreased general health, with most differences translating into very large-sized effects. This new knowledge calls for systematic monitoring with standardized validated questionnaires, physical assessments and tailored interventions in clinical care.
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Objectives: Promoting unstructured outside play is a promising vehicle to increase children’s physical activity (PA). This study investigates if factors of the social environment moderate the relationship between the perceived physical environment and outside play. Study design: 1875 parents from the KOALA Birth Cohort Study reported on their child’s outside play around age five years, and 1516 parents around age seven years. Linear mixed model analyses were performed to evaluate (moderating) relationships among factors of the social environment (parenting influences and social capital), the perceived physical environment, and outside play at age five and seven. Season was entered as a random factor in these analyses. Results: Accessibility of PA facilities, positive parental attitude towards PA and social capital were associated with more outside play, while parental concern and restriction of screen time were related with less outside play. We found two significant interactions; both involving parent perceived responsibility towards child PA participation. Conclusion: Although we found a limited number of interactions, this study demonstrated that the impact of the perceived physical environment may differ across levels of parent responsibility.
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Blood draws for laboratory investigations are essential for patient management in neonatal intensive care units (NICU). When blood samples clot before analysis, they are rejected, which delays treatment decisions and necessitates repeated sampling.
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Background: Intravenous (IV) therapy using short peripheral IV catheters (PIVC) is commonplace with neonatal patients. However, this therapy is associated with high complication rates including the leakage of infused fluids from the vasculature into the surrounding tissues; a condition referred to as, peripheral IV infiltration/extravasation (PIVIE). Objective: The quality improvement project aimed to identify the prevalence of known risk factors for PIVIE in the neonatal intensive care unit (NICU) and explore the feasibility of using novel optical sensor technology to aid in earlier detection of PIVIE events. Methods: The plan, do, study, act (PDSA) model of quality improvement (QI) was used to provide a systematic framework to identify PIVIE risks and evaluate the potential utility of continuous PIVC monitoring using the ivWatch model 400® system. The site was provided with eight monitoring systems and consumables. Hospital staff were supported with theoretical education and bedside training about the system operations and best use practices. Results: In total 113 PIVIE's (graded II-IV) were recorded from 3476 PIVCs, representing an incidence of 3.25%. Lower birth weight and gestational age were statistically significant factors for increased risk of PIVIE (p = 0.004); all other known risk factors did not reach statistical significance. Piloting the ivWatch with 21 PIVCs using high-risk vesicant solutions over a total of 523.9 h (21.83 days) detected 11 PIVIEs (graded I-II). System sensitivity reached 100%; 11 out of 11 PIVIEs were detected by the ivWatch before clinician confirmation. Conclusions: Prevailing risk factors for PIVIE in the unit were comparable to those published. Continuous infusion site monitoring using the ivWatch suggests this technology offers the potential to detect PIVIE events earlier than relying on intermittent observation alone (i.e. the current standard of care). However, large-scale study with neonatal populations is required to ensure the technology is optimally configured to meet their needs.
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Background: Knee and hip osteoarthritis (OA) among older adults account for substantial disability and extensive healthcare use. Effective pain coping strategies help to deal with OA. This study aims to determine the long-term relationship between pain coping style and the course of healthcare use in patients with knee and/or hip OA over 10 years. Methods: Baseline and 10-year follow-up data of 861 Dutch participants with early knee and/or hip OA from the Cohort Hip and Cohort Knee (CHECK) cohort were used. The amount of healthcare use (HCU) and pain coping style were measured. Generalized Estimating Equations were used, adjusted for relevant confounders. Results: At baseline, 86.5% of the patients had an active pain coping style. Having an active pain coping style was significantly (p = 0.022) associated with an increase of 16.5% (95% CI, 2.0–32.7) in the number of used healthcare services over 10 years. Conclusion: Patients with early knee and/or hip OA with an active pain coping style use significantly more different healthcare services over 10 years, as opposed to those with a passive pain coping style. Further research should focus on altered treatment (e.g., focus on self-management) in patients with an active coping style, to reduce HCU.
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Purpose To empirically define the concept of burden of neck pain. The lack of a clear understanding of this construct from the perspective of persons with neck pain and care providers hampers adequate measurement of this burden. An additional aim was to compare the conceptual model obtained with the frequently used Neck Disability Index (NDI). Methods Concept mapping, combining qualitative (nominal group technique and group consensus) and quantitative research methods (cluster analysis and multidimensional scaling), was applied to groups of persons with neck pain (n = 3) and professionals treating persons with neck pain (n = 2). Group members generated statements, which were organized into concept maps. Group members achieved consensus about the number and description of domains and the researchers then generated an overall mind map covering the full breadth of the burden of neck pain. Results Concept mapping revealed 12 domains of burden of neck pain: impaired mobility neck, neck pain, fatigue/concentration, physical complaints, psychological aspects/consequences, activities of daily living, social participation, financial consequences, difficult to treat/difficult to diagnose, difference of opinion with care providers, incomprehension by social environment, and how person with neck pain deal with complaints. All ten items of the NDI could be linked to the mind map, but the NDI measures only part of the burden of neck pain. Conclusion This study revealed the relevant domains for the burden of neck pain from the viewpoints of persons with neck pain and their care providers. These results can guide the identification of existing measurements instruments for each domain or the development of new ones to measure the burden of neck pain.
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Objective. There are no Dutch language disease-specific questionnaires for patients with patellofemoral pain syndrome available that could help Dutch physiotherapists to assess and monitor these symptoms and functional limitations. The aim of this study was to translate the original disease-specific Kujala Patellofemoral Score into Dutch and evaluate its reliability. Methods. The questionnaire was translated from English into Dutch in accordance with internationally recommended guidelines. Reliability was determined in 50 stable subjects with an interval of 1 week. The patient inclusion criteria were age between 14 and 60 years; knowledge of the Dutch language; and the presence of at least three of the following symptoms: pain while taking the stairs, pain when squatting, pain when running, pain when cycling, pain when sitting with knees flexed for a prolonged period, grinding of the patella and a positive clinical patella test. The internal consistency, test–retest reliability, measurement error and limits of agreement were calculated. Results. Internal consistency was 0.78 for the first assessment and 0.80 for the second assessment. The intraclass correlation coefficient (ICCagreement) between the first and second assessments was 0.98. The mean difference between the first and second measurements was 0.64, and standard deviation was 5.51. The standard error measurement was 3.9, and the smallest detectable change was 11. The Bland and Altman plot shows that the limits of agreement are 10.37 and 11.65. Conclusions. The results of the present study indicated that the test–retest reliability translated Dutch version of the Kujala Patellofemoral Score questionnaire is equivalent of the test– retest original English language version and has good internal consistency. Trial registration NTR (TC = 3258). Copyright © 2015 John Wiley & Sons, Ltd.
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Objective To evaluate the validity and reliability of the Dutch STarT MSK tool in patients with musculoskeletal pain in primary care physiotherapy. Methods Physiotherapists included patients with musculoskeletal pain, aged 18 years or older. Patients completed a questionnaire at baseline and follow-up at 5 days and 3 months, respectively. Construct validity was assessed by comparing scores of STarT MSK items with reference questionnaires. Pearson’s correlation coefficients were calculated to test predefined hypotheses. Test-retest reliability was evaluated by calculating quadratic-weighted kappa coefficients for overall STarT MSK tool scores (range 0–12) and prognostic subgroups (low, medium and high risk). Predictive validity was assessed by calculating relative risk ratios for moderate risk and high risk, both compared with low risk, in their ability to predict persisting disability at 3 months. Results In total, 142 patients were included in the analysis. At baseline, 74 patients (52.1%) were categorised as low risk, 64 (45.1%) as medium risk and 4 (2.8%) as high risk. For construct validity, nine of the eleven predefined hypotheses were confirmed. For test-retest reliability, kappa coefficients for the overall tool scores and prognostic subgroups were 0.71 and 0.65, respectively. For predictive validity, relative risk ratios for persisting disability were 2.19 (95% CI: 1.10–4.38) for the medium-risk group and 7.30 (95% CI: 4.11–12.98) for the highrisk group. Conclusion The Dutch STarT MSK tool showed a sufficient to good validity and reliability in patients with musculoskeletal pain in primary care physiotherapy. The sample size for high-risk patients was small (n = 4), which may limit the generalisability of findings for this group. An external validation study with a larger sample of high-risk patients (�50) is recommended.
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Background Anxiety and challenging behaviour (CB) often occur simultaneously in people with intellectual disabilities (ID). Understanding the associations between anxiety and CB may contribute to more accurate diagnoses and management of both anxiety and CB in this population. Aims To examine the relationship between anxiety and CB. Methods A literature review covering the period from January 2000 to January 2012. Results Seven studies about the relationship between psychiatric disorders, including anxiety, and CB were identified. These studies confirm the relationship between anxiety and CB in people with ID, although the precise nature of this relationship remains unclear. Conclusions The study points toward the existence of a moderate association between anxiety and CB. Further research is needed to clarify the complex nature of the association between anxiety and CB.
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