Growth and development after oesophageal atresia surgery: Need for long-term multidisciplinary follow-up

Abstract Survival rates in oesophageal atresia patients have reached over 90%. In long-term follow-up studies the focus has shifted from purely surgical or gastrointestinal evaluation to a multidisciplinary approach. We reviewed the literature on the long-term morbidity of these patients and discuss mainly issues of physical growth and neurodevelopment. We conclude that growth problems–both stunting and wasting–are frequently seen, but that sufficient longitudinal data are lacking. Therefore, it is unclear whether catch-up growth into adolescence and adulthood occurs. Data on determinants of growth retardation are also lacking in current literature. Studies on neurodevelopment beyond preschool age are scarce but oesophageal atresia patients seem at risk for academic problems and motor function delay. Many factors contribute to the susceptibility to growth and development problems and we propose a multidisciplinary follow-up schedule into adulthood future care which may help improve quality of life

Quality improvement intervention to stimulate early mobilization of critically ill children

Background: Immobility during hospital stay is associated with muscle weakness, delirium, and delayed neurocognitive recovery. Early mobilization of critically ill adults improves their physical functioning and shortens the duration of mechanical ventilation. However, comparable research in children is lacking. Aims: To determine the effects of the implementation of an early mobilization (EM) program on mobility activities for critically ill children and to explore barriers and facilitators and clinical outcomes before and after implementation. Study design: A prospective single-centre before-and-after study. Methods: This study was conducted in a PICU of a large tertiary hospital. Children aged from 3 months to 18 years, with an expected stay of ≥3 days were eligible to participate. In the “before” phase, participants received usual care; in the “after” phase we implemented a multicomponent, multidisciplinary EM protocol. The primary outcome was a change in the process outcome “mobilization activities”. Secondary outcomes were PICU staff opinions on mobilization (survey), safety, process measures, involvement of parents and physical therapist, and clinical outcomes (sedative use and prevalence of delirium). Results: A total of 113 children were included; 55 before and 58 after, with a median age of 31 months (IQR: 10–103) and 35 months (IQR: 7–152), respectively. The number of mobilization activities (per patient per day) had significantly increased from 5 (IQR: 2–7) to 6 (IQR: 4–8) (U = 272185.0; p &lt;.001). PT consultations for mobilization had significantly increased from 23.6% (13/55) to 46.5% (27/58) (X2 = 6.48; p =.011). In both phases, no mobilization-related adverse events were documented. The survey showed that PICU staff found EM of critically ill children useful and feasible. In the after phase, PICU staff rated the perceived benefit of the support of the physical therapist during mobilization activities significantly higher than in the before phase (X2 = 34.80; p &lt;.001). Conclusions: Implementation of a structured EM program for critically ill children is feasible and safe. Relevance to clinical practice: It is suggested to start the implementation of a structed EM program with the idendentification of local barriers and facilitators by an interdisciplinary PICU team. Further, an increased presence of physiotherapists on the PICU would improve mobilisation levels, and facilitate mobilisation in critically ill children. Also, they can support and advice PICU nurses and parents in mobilising children.</p

A parent-reported standardised checklist is not sensitive to screen for motor problems at school age following neonatal critical illness

Aim: As nowadays more children survive neonatal critical illness, evaluation of long-term morbidities becomes more important. We determined whether the parent-reported Movement Assessment Battery for Children-Second Edition (MABC-2) Checklist is a proper tool to screen for motor problems in school-aged chi

Fatigue and physical functioning in children with multiple sclerosis and acute disseminated encephalomyelitis

Background and Objective: Fatigue and physical impairments are a major concern in children with multiple sclerosis (MS) and after acute disseminated encephalomyelitis (post-ADEM). We here aimed to evaluate the interaction between fatigue, exercise capacity, motor performance, neurological status, and quality of life (HRQoL). Methods: In this cross-sectional study, data of 38 children (MS n = 22, post-ADEM n = 16), aged 4–17 years attending our national pediatric MS center, were studied. Fatigue was measured with the Pediatric Quality of Life Multidimensional Fatigue Scale, exercise capacity with the Bruce Protocol, motor performance with the Movement Assessment Battery for Children second edition, HRQoL with the Pediatric Quality of Life Questionnaire, and extent of disability with the Expanded Disability Status Scale (EDSS). Results: Children with MS and post-ADEM experienced more fatigue (p < 0.001), reduced exercise capacity (p < 0.001), and impaired motor performance (p < 0.001), despite low scores on the EDSS. Fatigue, but not the other parameters, was significantly correlated with HRQoL. Fatigue was not correlated with exercise capacity. Conclusion: We confirm the major impact of fatigue on quality of life in children with MS and post-ADEM. Fatigue was not explained by reduced exercise capacity or impaired motor performance. An important finding for clinical practice is that the low EDSS score did not reflect the poor physical functioning

Improvement of exercise capacity following neonatal respiratory failure: A randomized controlled trial

Exercise capacity deteriorates in school-aged children born with major anatomical foregut anomalies and/or treated with extracorporeal membrane oxygenation. The aim of the present study was to evaluate whether exercise capacity can be improved in the short term and long term in children born with anatomical foregut anomalies and/or treated with extracorporeal membrane oxygenation. Therefore, we evaluated two different interventions in this single-blinded randomized controlled trial. Forty participants were randomly assigned to group A: standardized anaerobic high-intensity interval training plus online lifestyle coaching program, B: online lifestyle coaching program only, or C: standard of care. Inclusion criteria were as follows: score ≤−1 standard deviation (SD) on the Bruce protocol. Exercise capacity was assessed at baseline (T0), after 3 months (T1), and after 12 months (T2). Exercise capacity improved over time: mean (SD) standard deviation score (SDS) endurance time: T0 −1.91 (0.73); T1 −1.35 (0.94); T2 −1.20 (1.03): both P <.001. No significant differences in maximal endurance time were found at T1 (group A-C: estimated mean difference (SDS): 0.06 P =.802; group B-C: −0.17 P =.733) or T2 (group A-C: −0.13 P =.635; group B-C: −0.18 P =.587). Exercise capacity improved significantly over time, irrespective of the study arm. Not only residual morbidities may be responsible for reduced exercise capacity. Parental awareness of reduced exercise capacity rather than specific interventions may have contributed. Monitoring of exercise tolerance and providing counseling on lifestyle factors that improve physical activity should be part of routine care, and aftercare should be offered on an individual basis

Together in Motion : Long-term morbidity in children with congenital foregut anomalies

With the increased survival of children with congenital foregut anomalies and/or having undergone neonatal extracorporeal membrane oxygenation treatment, the focus of attention should be directed towards improvement of long-term morbidity. The findings presented in this thesis demonstrate the importance of long-term evaluation of morbidity in these children - from childhood into adulthood. Early risk stratification and targeted interventions are recommended

Growth and development after oesophageal atresia surgery: Need for long-term multidisciplinary follow-up

Survival rates in oesophageal atresia patients have reached over 90%. In long-term follow-up studies the focus has shifted from purely surgical or gastrointestinal evaluation to a multidisciplinary approach. We reviewed the literature on the long-term morbidity of these patients and discuss mainly issues of physical growth and neurodevelopment. We conclude that growth problems - both stunting and wasting - are frequently seen, but that sufficient longitudinal data are lacking. Therefore, it is unclear whether catch-up growth into adolescence and adulthood occurs. Data on determinants of growth retardation are also lacking in current literature. Studies on neurodevelopment beyond preschool age are scarce but oesophageal atresia patients seem at risk for academic problems and motor function delay. Many factors contribute to the susceptibility to growth and development problems and we propose a multidisciplinary follow-up schedule into adulthood future care which may help improve quality of life. (C) 2015 Elsevier Ltd. All rights reserved

Perceived Motor Competence Differs From Actual Performance in 8-Year-Old Neonatal ECMO Survivors

OBJECTIVE: To assess perceived motor competence, social competence, self-worth, health-related quality of life, and actual motor performancein 8-year-old survivors of neonatal extracorporeal membrane oxygenation (ECMO). METHODS: In a prospective nationwide study, 135 children completed the extended version of the "athletic competence" domain of the Self Perception Profile for Children (SPPC) called the m-CBSK (Motor supplement of the Competentie BelevingsSchaal voor Kinderen) to assess perceived motor competence, the SPPC, and the Pediatric Quality of Life Inventory (PedsQL), andwere tested with the Movement Assessment Battery for Children. SD scores (SDS) were used to compare with the norm. RESULTS: The mean (SD) SDS for perceived motor competence, social competence, and self-worth were all significantly higher than the norm: 0.18 (0.94), P = .03; 0.35 (1.03), P < .001; and 0.32 (1.08), P < .001, respectively. The total PedsQL score was significantly below the norm: mean (SD) SDS: -1.26 (1.53), P < .001. Twenty-two percent of children had actual motor problems. The SDS m-CBSK and actual motor performance did not correlate (r = 0.12; P = .17). The SDS m-CBSK significantly correlated with the athletic competence domain of the SPPC (r = 0.63; P < .001). CONCLUSIONS: Eight-year-old ECMO survivors feel satisfied with their motor-and social competence, despite impaired PedsQL scores and motor problems. Because motor problems in ECMO survivorsdeteriorate throughout childhood, clinicians should be aware that these patients may tend to "overrate" their actual motor performance. Education and strict monitoring of actual motor performance are important to enable timely intervention