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The Six-Minute Walk Test (6MWT) is increasingly being used as a functional outcome measure for chronic pediatric conditions. Knowledge about its measurement properties is needed to determine whether it is an appropriate test to use. The purpose of this study was to systematically review all published clinimetric studies on the 6MWT in chronic pediatric conditions. The databases MEDLINE, EMBASE, CINAHL, PEDro, and SPORTDiscus were searched up to February 2012. Studies designed to evaluate measurement properties of the 6MWT in a chronic pediatric condition were included in the systematic review. The methodological quality of the included studies and the measurement properties of the 6MWT were examined. A best evidence synthesis was performed on 15 studies, including 9 different chronic pediatric conditions. Limited evidence to strong evidence was found for reliability in various chronic conditions. Strong evidence was found for positive criterion validity of the 6MWT with peak oxygen uptake in some populations, but negative criterion validity was found in other populations. Construct validity remained unclear in most patient groups because of methodological flaws. Little evidence was available for responsiveness and measurement error. Studies showed large variability in test procedures despite existing guidelines for the performance of the 6MWT. Unavailability of a specific checklist to evaluate the methodological quality of clinimetric studies on performance measures was a limitation of the study. Evidence for measurement properties of the 6MWT varies largely among chronic pediatric conditions. Further research is needed in all patient groups to explore the ability of the 6MWT to measure significant and clinically important changes. Until then, changes measured with the 6MWT should be interpreted with caution. Future studies or consensus regarding modified test procedures in the pediatric population is recommended.

Background To determine construct validity and test-retest reliability of Endurance Shuttle Tests as outcome measures for fatigability of remaining motor functions in children and adults with Spinal Muscular Atrophy (SMA) across the severity spectrum. Results We assessed the Endurance Shuttle - Nine Hole Peg Test (ESNHPT), − Box and Block Test (ESBBT) and – Walk Test (ESWT) in 61 patients with SMA types 2–4, 25 healthy controls (HC) and 15 disease controls (DC). Convergent validity, discriminative validity and test-retest reliability were investigated. Additionally, we compiled the Endurance Shuttle Combined Score (ESTCS) by selecting the most relevant endurance test of each individual. 54, 70 and 73% of patients with SMA demonstrated increased fatigability on the ESNHPT, ESBBT and the ESWT. Endurance response in SMA was characterized by a decrease in muscle strength, an increase in muscle fatigue and an increase in motor adaptions, thereby confirming convergent validity. Patients with SMA showed increased drop-out rates and a shorter endurance time compared to HC and DC demonstrating good discriminative validity. Test-retest reliability was moderate to excellent (ICC’s ranging from .78 to .91) with a trend towards better performance on retest. The ESTCS increased sample size and drop-out rate up to 100 and 85%. Conclusions Fatigability is an important additional dimension of physical impairments across the severity spectrum in children and adults with SMA. The EST’s are reliable and valid to document fatigability of walking, proximal- and distal arm function in SMA and thus are promising outcome measures for use in clinical trials.

Background Even though typically developing youth are already at risk for physical inactivity, youth with spina bifida may be even at higher risk as a consequence of their reduced mobility. No objective data is available for youth with spina bifida who use a manual wheelchair, so the seriousness of the problem is unknown. The purpose of this observational study was to quantify physical activity in wheelchair-using youth with spina bifida and evaluate the intensity of activities. Methods Fifty-three children and adolescents (5–19 years) with spina bifida who use a manual wheelchair for daily life, long distances or sports were included. To assess time spent in several types of activities VitaMove data of 34 participants were used and were presented as time spent sedentary and time spent physically active. This was compared to reference data of typically developing youth. To assess time spent in several intensities Actiheart data of 36 participants were used. The intensities were categorized according to the American College of Sports Medicine, ranging from very light intensity to near to maximal intensity. Data of 25 participants were used to combine type of activity and intensity. Results Children and adolescents with spina bifida who use a manual wheelchair were more sedentary (94.3% versus 78.0% per 24 h, p  < 0.000) and less physically active (5.0% versus 12.2% per 24 h, p  < 0.000) compared to typically developing peers. Physical activity during weekend days was worse compared to school days; 19% met the Guidelines of Physical Activity during school days and 8% during weekend days. The intensities per activity varied extensively between participants. Conclusions Children and adolescents with spina bifida who use a manual wheelchair are less physically active and more sedentary than typically developing youth. The physical activity levels on school days seem to be more favorable than the physical activity levels on a weekend day. The low levels of physical activity need our attention in pediatric rehabilitation practice. The different intensities during activities indicate the importance of individually tailored assessments and interventions.

Background Fatigability has emerged as an important dimension of physical impairment in patients with Spinal Muscular Atrophy (SMA). At present reliable and valid outcome measures for both mildly and severely affected patients are lacking. Therefore the primary aim of this study is the development of clinical outcome measures for fatigability in patients with SMA across the range of severity. Methods We developed a set of endurance tests using five methodological steps as recommended by the ‘COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN). In this iterative process, data from multiple sources were triangulated including a scoping review of scientific literature, input from a scientific and clinical multidisciplinary expert panel and three pilot studies including healthy persons ( N  = 9), paediatric patients with chronic disorders ( N  = 10) and patients with SMA ( N  = 15). Results Fatigability in SMA was operationalised as the decline in physical performance. The following test criteria were established; one method of testing for patients with SMA type 2–4, a set of outcome measures that mimic daily life activities, a submaximal test protocol of repetitive activities over a longer period; external regulation of pace. The scoping review did not generate suitable outcome measures. We therefore adapted the Endurance Shuttle Walk Test for ambulatory patients and developed the Endurance Shuttle Box and Block Test and the - Nine Hole Peg Test for fatigability testing of proximal and distal arm function. Content validity was established through input from experts and patients. Pilot testing showed that the set of endurance tests are comprehensible, feasible and meet all predefined test criteria. Conclusions The development of this comprehensive set of endurance tests is a pivotal step to address fatigability in patients with SMA.

ObjectivesSurgery in patients on anticoagulants requires careful monitoring and risk assessment to prevent harm. Required interruptions of anticoagulants and deciding whether to use bridging anticoagulation add further complexity. This process, known as perioperative anticoagulant management (PAM), is optimised by using guidelines. Optimal PAM prevents thromboembolic and bleeding complications. The purpose of this study was to assess the reliability of PAM practice in Dutch hospitals. Additionally, the variations between hospitals and different bridging dosages were studied.DesignA multicentre retrospective patient record review.Setting and participantsRecords from 268 patients using vitamin-K antagonist (VKA) anticoagulants who underwent surgery in a representative random sample of 13 Dutch hospitals were reviewed, 259 were analysed.Primary and secondary outcome measuresOur primary outcome measure was the reliability of PAM expressed as the percentage of patients receiving guideline compliant care. Seven PAM steps were included. Secondary outcome measures included different bridging dosages used and an analysis of practice variation on the hospital level.ResultsPreoperative compliance was lowest for timely VKA interruptions: 58.8% (95% CI 50.0% to 67.7%) and highest for timely preoperative assessments: 81% (95% CI 75.0% to 86.5%). Postoperative compliance was lowest for timely VKA restarts: 39.9% (95% CI 33.1% to 46.7%) and highest for the decision to apply bridging: 68.5% (95% CI 62.3% to 74.8%). Variation in compliance between hospitals was present for the timely preoperative assessment (range 41%–100%), international normalised ratio testing (range 21%–94%) and postoperative bridging (range 20%–88%). Subtherapeutic bridging was used in 50.5% of patients and increased with patients’ weight.ConclusionsUnsatisfying compliance for most PAM steps, reflect suboptimal reliability of PAM. Furthermore, the hospital performance varied. This increases the risk for adverse events, warranting quality improvement. The development of process measures can help but will be complicated by the availability of a strong supporting evidence base and integrated care delivery regarding PAM.

We aimed to develop a checklist to aid guideline developers in determining which scientific or societal cause (“triggers”) are relevant when considering to initiate a rapid recommendation procedure. We conducted a two-round modified Delphi procedure with a panel of Dutch guideline experts, clinicians, and patient representatives. A previously conducted systematic literature review and semistructured interviews with four science journalists were used to generate a list of potential items. This item list was submitted to the panel for discussion, reduction and refinement into a checklist. Thirteen experts took part. Two questionnaires were completed in which participants scored an initial list of 64 items based on relevance. During two online meetings, the scores were discussed, irrelevant items were removed, and relevant items were reformulated into seven questions. The final “quickscan assessment of the need for a rapid recommendation” covers user perspective, scientific evidence, clinical relevance, clinical practice variation, applicability, quality of care and public health outcomes, and ethical/legal considerations. The quickscan aids guideline developers in systematically assessing whether a trigger expresses a valid need for developing a rapid recommendation. Future research could focus on the applicability and validity of the checklist within guideline development programs.

To develop and internally validate prediction models for future hospital care utilization in patients with multiple chronic conditions. Retrospective cohort study. A teaching hospital in the Netherlands (542 beds) All adult patients (n = 18.180) who received care at the outpatient clinic in 2017 for two chronic diagnoses or more (including oncological diagnoses) and who returned for hospital care or outpatient clinical care in 2018. Development and validation using a stratified random split-sample (n = 12.120 for development, n = 6.060 for internal validation). These models showed promising results for further development of prediction models for future healthcare utilization using data from local electronic health records. This could be the first step in developing automated alert systems in electronic health records for identifying patients with multimorbidity with higher risk for high healthcare utilization, who might benefit from a more integrated care approach.

Antithrombotic drugs are consistently involved in medication-related adverse events (MRAEs) in hospitalized patients. We aimed to estimate the antithrombotic-related adverse event (ARAE) incidence between 2008 and 2016 and analyse their clinical context in hospitalized patients in The Netherlands. A post-hoc analysis of three national studies, aimed at adverse event (AE) identification, was performed. Previously identified AEs were screened for antithrombotic involvement. Crude and multi-level, case-mix adjusted ARAE and MRAE incidences were calculated. Various contextual ARAE characteristics were analysed. ARAE incidence between 2008 and 2016 decreased significantly in in-hospital deceased patients from 1.20% (95% confidence interval (CI): 0.63–2.27%) in 2008 to 0.54% (95% CI: 0.27–1.11%) in 2015/2016 (p = 0.02). In discharged patients ARAE incidence remained stable. By comparison, overall MRAE incidence remained stable for both deceased and discharged patients. Most ARAEs involved Vitamin-K antagonists (VKAs). Preventable ARAEs occurred more during weekends and with increasing multidisciplinary involvement. Antiplatelet and combined antithrombotic use seemed to be increasingly involved in ARAEs over time. ARAE incidence declined by 55% in deceased patients between 2008 and 2016. Opportunities for improving antithrombotic safety should target INR monitoring and care delivery aspects such as multidisciplinary involvement and weekend care. Future ARAE monitoring for the involvement of antiplatelet, combined antithrombotic and direct oral anticoagulant (DOAC) use is recommended.

To develop and internally validate prediction models for future hospital care utilization in patients with multiple chronic conditions. Retrospective cohort study. A teaching hospital in the Netherlands (542 beds). All adult patients (n = 18.180) who received care at the outpatient clinic in 2017 for two chronic diagnoses or more (including oncological diagnoses) and who returned for hospital care or outpatient clinical care in 2018. Development and validation using a stratified random split-sample (n = 12.120 for development, n = 6.060 for internal validation). ≥2 emergency department visits in 2018, ≥1 hospitalization in 2018 and ≥12 outpatient visits in 2018. Multivariable logistic regression with forward selection. Evaluation of the models' performance showed c-statistics of 0.70 (95% CI 0.69-0.72) for the hospitalization model, 0.72 (95% CI 0.70-0.74) for the ED visits model and 0.76 (95% 0.74-0.77) for the outpatient visits model. With regard to calibration, there was agreement between lower predicted and observed probability for all models, but the models overestimated the probability for patients with higher predicted probabilities. These models showed promising results for further development of prediction models for future healthcare utilization using data from local electronic health records. This could be the first step in developing automated alert systems in electronic health records for identifying patients with multimorbidity with higher risk for high healthcare utilization, who might benefit from a more integrated care approach.

Background Pediatric Early Warning Scores (PEWS) are commonly used for early recognition of clinical deterioration in hospitalized children and timely intervention. In 2019, a national Dutch PEWS was developed for pediatric hospital care in the Netherlands. To improve communication during interhospital transfers, using Dutch PEWS in interhospital ambulance care might be of added value in the chain of care. Therefore, this pilot study aimed to explore the feasibility and impact of the Dutch PEWS in interhospital ambulance care. Methods Using the Plan-Do-Study-Act cycle, a four-step model for carrying out change, the Dutch PEWS system was first adopted for use in interhospital ambulance care, resulting in Dutch-Ambulance-PEWS (DA-PEWS) (Plan). This system was implemented in one ambulance region: the Regional Ambulance Service Utrecht (RAVU) (Do). Feasibility for implementing DA-PEWS nationwide and impact were evaluated. To do so, one baseline questionnaire and semi-structured interviews at the start of and at three, six, and twelve months after implementation were used (Study). Based on the results, approaches were developed to disseminate the DA-PEWS to national ambulance care (Act). Results Main impact themes that emerged included the enhancement of situational awareness, communication in the chain of care through improvements in uniformity and handovers and improved protocol adherence. Using the system in the interhospital care setting was considered feasible, but for future upscaling of the implementation and efficacy, determinants such as variation in organizational structures, the limited frequency of pediatric interhospital transfers and differences in individual attitudes toward using one system are first steps to consider. Conclusion This pilot study showed impact of using the DA-PEWS in interhospital ambulance care in the Netherlands, while also revealing important lessons for the implementation of the DA-PEWS nationwide due to local contextual factors in the organization of ambulance care across regions.