Children with CDH-whether or not treated with neonatal ECMO-are at risk for long-term morbidity especially in the areas of motor function and concentration. Despite their impairment, children with CDH have a well-developed feeling of self-competence.
OBJECTIVE: To assess perceived motor competence, social competence, self-worth, healthrelated 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 selfworth 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 andstrict monitoring of actual motor performanceare important to enable timelyintervention.a Department of Orthopedics, Section of Physical Therapy, and b Intensive Care and Department of Pediatric Surgery, Erasmus Medical Center-Sophia Children's Hospital, Rotterdam, Netherlands; c Department of Rehabilitation, Pediatric Physical Therapy and Donders Institute, Radboud University Medical Center, Nijmegen, Netherlands; and d Department of Neonatology, Radboud University Medical Center-Amalia Children's Hospital, Nijmegen, Netherlands Ms Toussaint contributed to the conception and design, acquisition of data, analysis and interpretation of data, and writing of the fi rst draft; Dr van der Cammen-van Zijp contributed to the conception and design, acquisition of data, analysis and interpretation of data, writing of the fi rst draft, and critically revising the manuscript; Dr Janssen contributed to the conception and design, acquisition of data, and critically revising the manuscript; Dr Tibboel contributed to the conception and design and critically revising the manuscript; Dr Heijst contributed to conception and design and to acquisition of data and critically revised the manuscript; Dr IJsselstijn contributed to the conception and design, acquisition of data, interpretation of data, writing of the fi rst draft, and critically revising the manuscript; and all authors approved the fi nal manuscript as submitted. Currently, t...
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.
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