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Start Over Topic psychology Publication Year Range Last 10 years Journal developmental medicine & child neurology
137 results

1. Abstract papers

Author

B Buchignani, Elisa Sicola, Hilde Feys, O Iacono, Giuseppina Sgandurra, Elena Beani, Giovanni Cioni, and Emanuela Inguaggiato

Subjects
0301 basic medicine, medicine.medical_specialty, Rehabilitation, medicine.medical_treatment, 030209 endocrinology & metabolism, Lower limb, 03 medical and health sciences, 030104 developmental biology, 0302 clinical medicine, Physical medicine and rehabilitation, Developmental Neuroscience, Pediatrics, Perinatology and Child Health, Action observation, medicine, Neurology (clinical), Psychology
Published
2018

2. Behaviour in Cornelia de Lange syndrome: a systematic review.

Author

Mulder, Paul A, Huisman, Sylvia A, Hennekam, Raoul C, Oliver, Chris, Balkom, Ingrid D C, and Piening, Sigrid

Subjects
AUTISM, AUTISM spectrum disorders, AGGRESSION (Psychology), SOCIAL anxiety, DATA extraction, DE Lange's syndrome, MENTAL illness, QUALITY of life, SYSTEMATIC reviews, BIBLIOGRAPHIC databases, DISEASE complications, PSYCHOLOGY
Abstract

Aim: Careful study and accurate description of behaviour are important to understand developmental challenges for individuals with Cornelia de Lange syndrome (CdLS). Here we present a systematic review of current understanding of behaviour in CdLS.Method: A systematic search was performed for articles published between January 1946 and December 2015 evaluating autism, self-injury, and/or cognition in CdLS. After study-selection, 43 papers were included. The Cochrane quality criteria were adjusted to assign quality scores to the included studies.Results: Participants were mostly categorized in the severe/profound developmental level. Methodology and quality were very heterogeneous, as well as reporting occurrence of autism. Self-injurious behaviour was reported in 15 papers. Physical conditions were reported in 21 studies, mostly related to hearing and vision. Only nine studies mentioned details about medication.Interpretation: Comparison of presented results was hindered by heterogeneous assessment methods. Improving our understanding of behavioural characteristics in CdLS requires more uniform methodology. We propose a criterion standard of instruments that can ideally be used in assessment of behaviour and development. This will improve understanding of behaviour in the context of developmental level and daily functioning. [ABSTRACT FROM AUTHOR]

Published
2017
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3. Practical tools and strategies for researchers to increase replicability.

Author

Nuijten, Michèle B

Subjects
INFERENTIAL statistics, TECHNICAL reports, BEST practices, PSYCHOLOGY
Abstract

Copyright of Developmental Medicine & Child Neurology is the property of Wiley-Blackwell and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)

Published
2019
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4. Health-related quality of life of children and adolescents with cerebral palsy in low- and middle-income countries: a systematic review.

Author

Power, Rosalie, King, Catherine, Muhit, Mohammad, Heanoy, Eamin, Galea, Claire, Jones, Cheryl, Badawi, Nadia, and Khandaker, Gulam

Subjects
CHILDREN with cerebral palsy, DEVELOPMENTAL disabilities, CHILD development, CEREBRAL palsy, PEDIATRIC neurology, DIAGNOSIS, POVERTY & psychology, MENTAL health, QUALITY of life, QUESTIONNAIRES, SYSTEMATIC reviews, BIBLIOGRAPHIC databases, PSYCHOLOGY
Abstract

Copyright of Developmental Medicine & Child Neurology is the property of Wiley-Blackwell and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)

Published
2018
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5. Patient-reported outcome measures for young people with developmental disabilities: incorporation of design features to reduce cognitive demands.

Author

Schwartz, Ariel E., Kramer, Jessica M., and Longo, Angela L.

Subjects
PEOPLE with developmental disabilities, DEVELOPMENTAL disabilities, COGNITION disorder patients, CHILDREN with developmental disabilities, PERVASIVE child development disorders, DIAGNOSIS of developmental disabilities, COGNITION, COGNITION disorders, MOTIVATION (Psychology), HEALTH self-care, SYSTEMATIC reviews, RETROSPECTIVE studies, PSYCHOLOGICAL factors, PSYCHOLOGY
Abstract

Copyright of Developmental Medicine & Child Neurology is the property of Wiley-Blackwell and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)

Published
2018
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6. Psychometric properties of parent and child reported sleep assessment tools in children with cerebral palsy: a systematic review.

Author

Bautista, Manuel, Whittingham, Koa, Edwards, Priya, and Boyd, Roslyn N.

Subjects
CEREBRAL palsy, PSYCHOMETRICS, SLEEP disorders, CHILDREN with cerebral palsy, JUVENILE diseases, PSYCHOLOGY of parents, SYSTEMATIC reviews, DISEASE complications, PSYCHOLOGY
Abstract

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Published
2018
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7. Psychosocial and functional outcomes in young adults with childhood-onset epilepsy: a 10-year follow-up.

Author

Friefeld Kesselmayer, Rachel, McMillan, Taylor, Lee, Beatrice, Almane, Dace, Hermann, Bruce P, and Jones, Jana E

Subjects
YOUNG adults, EPILEPSY, ATTENTION-deficit hyperactivity disorder, ANXIETY disorders, MENTAL depression, EPILEPSY & psychology, PSYCHOLOGY, AGE factors in disease, RESEARCH funding, LONGITUDINAL method, DISEASE complications
Abstract

Aim: To compare long-term psychosocial and functional outcomes of young adults with uncomplicated childhood-onset epilepsy (COE) to population norm controls utilizing a controlled prospective cohort study.Method: Psychosocial and functional outcomes were assessed at 10-year follow-up. Fifty-three young adults (27 males, 26 females) with COE (n=21 remission; 18y 1mo-30y 9mo; mean age 23y 4mo [SD 3y 4mo]; mean age of epilepsy onset 12y [SD 3y 2mo]) were compared to 55 (23 males, 32 females) first-degree cousin controls (18y 5mo-29y 8mo; mean age 23y 6mo [SD 3y]). Seizure remission status and baseline comorbidities (attention-deficit/hyperactivity disorder [ADHD], depressive disorders, anxiety disorders, and academic problems) were examined as possible risk factors for significant differences in functional outcomes.Results: Poorer functional outcomes, indicated by patient rated cognition and overall disability, were evident among young adults with epilepsy compared to controls (all p<0.05). These difficulties were due to baseline comorbid ADHD and academic problems. Remission status was not related to measured cognition and overall disability.Interpretation: Psychosocial outcomes of young adults with COE were similar to controls. In contrast, functional outcomes were worse in epilepsy across cognition and overall disability. Baseline comorbid ADHD and academic problems were identified as risk factors at 10-year follow-up suggesting that these early recognized comorbidities at or near diagnosis have long-term impacts.What This Paper Adds: Young adults with childhood-onset epilepsy (COE) and controls have similar psychosocial outcomes 10 years after diagnosis. Young adults with COE report greater limitations in cognition and overall disability than controls. Baseline presence of attention-deficit/hyperactivity disorder and academic problems significantly affect cognitive and overall disability scores. [ABSTRACT FROM AUTHOR]

Published
2020
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8. Long-term course of difficulty in participation of individuals with cerebral palsy aged 16 to 34 years: a prospective cohort study.

Author

Gorp, Marloes, Van Wely, Leontien, Dallmeijer, Annet J, Groot, Vincent, Ketelaar, Marjolijn, Roebroeck, Marij E, van Gorp, Marloes, de Groot, Vincent, and Perrin-Decade study group

Subjects
PEOPLE with cerebral palsy, INTELLECTUAL disabilities, EMPLOYMENT, DISEASES in young adults, INTERPERSONAL relations, AGE distribution, CEREBRAL palsy, COMPARATIVE studies, FUNCTIONAL assessment, LEARNING, LONGITUDINAL method, RESEARCH methodology, MEDICAL cooperation, RESEARCH, RESEARCH funding, SOCIAL skills, ACTIVITIES of daily living, EVALUATION research, DISEASE complications, PSYCHOLOGY
Abstract

Copyright of Developmental Medicine & Child Neurology is the property of Wiley-Blackwell and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)

Published
2019
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9. Motor function daily living skills 5 years after paediatric arterial ischaemic stroke: a prospective longitudinal study.

Author

Cooper, Anna N, Anderson, Vicki, Greenham, Mardee, Hearps, Stephen, Hunt, Rod W, Mackay, Mark T, Ditchfield, Michael, Coleman, Lee, Monagle, Paul, and Gordon, Anne L

Subjects
STROKE patients, PEDIATRIC diagnosis, MOTOR ability in children, QUALITY of life, ACTIVITIES of daily living, FATIGUE (Physiology), NEONATAL diseases, HEALTH outcome assessment, MENTAL health, PHYSIOLOGICAL adaptation, CEREBRAL ischemia, DEVELOPMENTAL disabilities, LONGITUDINAL method, MOVEMENT disorders, NEUROLOGIC examination, CROSS-sectional method, STROKE, DISEASE complications, PSYCHOLOGY
Abstract

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Published
2019
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10. From childhood to adulthood: health care use in individuals with cerebral palsy.

Author

Roquet, Marion, Garlantezec, Ronan, Remy‐Neris, Olivier, Sacaze, Elise, Gallien, Philippe, Ropars, Juliette, Houx, Laetitia, Pons, Christelle, Brochard, Sylvain, and Remy-Neris, Olivier

Subjects
CHILDREN with cerebral palsy, OUTPATIENT medical care, MEDICAL care, REHABILITATION centers, DEVELOPMENTAL disabilities, AGE distribution, CEREBRAL palsy, EVALUATION of medical care, QUESTIONNAIRES, RESEARCH funding, LOGISTIC regression analysis, RETROSPECTIVE studies, DISEASE progression, PATIENTS' attitudes, PSYCHOLOGY
Abstract

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Published
2018
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11. Setting a patient-centered research agenda for cerebral palsy: a participatory action research initiative.

Author

Gross, Paul H, Bailes, Amy F, Horn, Susan D, Hurvitz, Edward A, Kean, Jacob, Shusterman, Michele, and cerebral palsy research network

Subjects
NONPROFIT organizations, PATIENT-centered care, CEREBRAL palsy, QUALITY of life, PUBLIC health administration, CEREBRAL palsy treatment, ACTION research, DELPHI method, MEDICAL care research, MEDICAL personnel, RESEARCH funding, RESIDENTIAL patterns, CROSS-sectional method, PSYCHOLOGY
Abstract

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Published
2018
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12. Manual dexterity, but not cerebral palsy, predicts cognitive functioning after neonatal stroke.

Author

Thébault, Guillaume, Martin, Sophie, Brouillet, Denis, Brunel, Lionel, Dinomais, Mickaël, Presles, Émilie, Fluss, Joel, Chabrier, Stéphane, and AVCnn Study Group

Subjects
STROKE diagnosis, CEREBRAL dominance, CEREBRAL ischemia, COGNITION, CEREBRAL palsy, COMPARATIVE studies, HAND, LONGITUDINAL method, RESEARCH methodology, MEDICAL cooperation, MOTOR ability, REGRESSION analysis, RESEARCH, RESEARCH funding, SEX distribution, SOCIOECONOMIC factors, STROKE, EVALUATION research, DISEASE complications, PSYCHOLOGY, DIAGNOSIS
Abstract

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Published
2018
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13. Effect of mindfulness yoga programme MiYoga on attention, behaviour, and physical outcomes in cerebral palsy: a randomized controlled trial.

Author

Boyd, Roslyn N., Mak, Catherine, Whittingham, Koa, and Cunnington, Ross

Subjects
YOGA, ATTENTION, BEHAVIOR modification, CEREBRAL palsy, RANDOMIZED controlled trials, CHILD behavior, NEUROPSYCHOLOGICAL tests, MOTOR ability, PARENT-child relationships, QUALITY of life, TREATMENT effectiveness, EXECUTIVE function, MINDFULNESS, PSYCHOLOGY
Abstract

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Published
2018
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14. International Classification of Functioning, Disability and Health Core Sets for cerebral palsy, autism spectrum disorder, and attention-deficit-hyperactivity disorder.

Author

Schiariti, Verónica, Mahdi, Soheil, and Bölte, Sven

Subjects
CEREBRAL palsy, AUTISM spectrum disorders, ATTENTION-deficit hyperactivity disorder, HEALTH impact assessment, AGE distribution, CHILD behavior, FUNCTIONAL assessment, MOTOR ability, NOSOLOGY, THOUGHT & thinking, DIAGNOSIS, PSYCHOLOGY
Abstract

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Published
2018
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15. Children with cerebral palsy in Ghana: malnutrition, feeding challenges, and caregiver quality of life.

Author

Polack, Sarah, Zuurmond, Maria, Adams, Mel, O'banion, David, Baltussen, Marjolein, Asante, Sandra, Kerac, Marko, and Gladstone, Melissa

Subjects
CEREBRAL palsy, MALNUTRITION, BURDEN of care, QUALITY of life, PSYCHOLOGY of caregivers, COMPARATIVE studies, HEALTH status indicators, RESEARCH methodology, MEDICAL cooperation, QUESTIONNAIRES, RESEARCH, RURAL health, SOCIOECONOMIC factors, EVALUATION research, DISEASE prevalence, DISEASE complications, PSYCHOLOGY
Abstract

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Published
2018
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16. Nutritional intervention and neurodevelopmental outcome in infants with suspected cerebral palsy: the Dolphin infant double-blind randomized controlled trial.

Author

Andrew, Morag J., Montague‐Johnson, Christine, Laler, Karen, Baker, Bonny, Sullivan, Peter B., Parr, Jeremy R., Qi, Cathy, and Montague-Johnson, Christine

Subjects
NEURODEVELOPMENTAL treatment for infants, CEREBRAL palsy, DOCOSAHEXAENOIC acid, NUTRITION, RANDOMIZED controlled trials, CEREBRAL palsy treatment, NUCLEOTIDES, CHOLINE, CHILD development, COMPARATIVE studies, DIET therapy, RESEARCH methodology, MEDICAL cooperation, RESEARCH, STATISTICAL sampling, EVALUATION research, BLIND experiment, DISEASE complications, PSYCHOLOGY, THERAPEUTICS
Abstract

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Published
2018
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17. Experiences of living with fetal alcohol spectrum disorders: a systematic review and synthesis of qualitative data.

Author

Domeij, Helena, Fahlström, Gunilla, Bertilsson, Göran, Hultcrantz, Monica, Munthe‐Kaas, Heather, Gordh, Christina Nehlin, Helgesson, Gert, and Munthe-Kaas, Heather

Subjects
FETAL alcohol syndrome, JUVENILE diseases, PAIN tolerance, AGGRESSION (Psychology) in children, HYPERACTIVITY, SCHOOL attendance, BEM Sex-Role Inventory, SYSTEMATIC reviews, PSYCHOLOGY
Abstract

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Published
2018
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18. Health-related quality of life and peer relationships in adolescents with developmental coordination disorder and attention-deficit-hyperactivity disorder.

Author

Dewey, Deborah and Volkovinskaia, Anna

Subjects
MOVEMENT disorders, QUALITY of life, HUMAN behavior, SELF-perception, SCHOOL environment, LEISURE & psychology, MENTAL health, ATTENTION-deficit hyperactivity disorder, COMPARATIVE studies, DEVELOPMENTAL disabilities, FRIENDSHIP, LONGITUDINAL method, RESEARCH methodology, MEDICAL cooperation, PSYCHOMOTOR disorders, QUESTIONNAIRES, RESEARCH, RESEARCH funding, EVALUATION research, DISEASE complications, PSYCHOLOGICAL factors, PSYCHOLOGY
Abstract

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Published
2018
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19. Development and validation of the Pediatric Stroke Quality of Life Measure.

Author

Fiume, Andrea, Deveber, Gabrielle, Jang, Shu‐Hyun, Fuller, Colleen, Viner, Shani, Friefeld, Sharon, and Jang, Shu-Hyun

Subjects
STROKE, QUALITY of life, INTRACLASS correlation, TEST reliability, CEREBRAL embolism & thrombosis, MENTAL health, AGE distribution, PEDIATRICS, PSYCHOMETRICS, QUESTIONNAIRES, RESEARCH evaluation, SOCIAL classes, PSYCHOLOGY
Abstract

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Published
2018
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20. Economic evaluation and cost of interventions for cerebral palsy: a systematic review.

Author

Shih, Sophy T. F., Tonmukayakul, Utsana, Imms, Christine, Reddihough, Dinah, Graham, H. Kerr, Cox, Liz, and Carter, Rob

Subjects
CEREBRAL palsy, MEDICAL care costs, META-analysis, RANDOMIZED controlled trials, BOTULINUM toxin, CEREBRAL palsy treatment, QUALITY of life, MENTAL health, ALGORITHMS, COST effectiveness, HEALTH outcome assessment, SYSTEMATIC reviews, DISEASE management, PSYCHOLOGY
Abstract

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Published
2018
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21. Neurodevelopmental outcome in very preterm and very-low-birthweight infants born over the past decade: a meta-analytic review.

Author

Pascal, Aurelie, Govaert, Paul, Oostra, Ann, Naulaers, Gunnar, Ortibus, Els, and Van den Broeck, Christine

Subjects
PREMATURE labor, SYSTEMATIC reviews, HEALTH outcome assessment, NEONATOLOGY, CHILDREN with cerebral palsy, DIAGNOSIS, CEREBRAL palsy, LOW birth weight, COGNITION disorders, PREMATURE infants, PREMATURE infant diseases, LONGITUDINAL method, META-analysis, BIBLIOGRAPHIC databases, BEHAVIOR disorders, PSYCHOLOGY
Abstract

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Published
2018
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22. Parent-reported health-related quality of life of children with Down syndrome: a descriptive study.

Author

Shields, Nora, Leonard, Helen, Munteanu, Shannon, Bourke, Jennifer, Lim, Polly, Taylor, Nicholas F., and Downs, Jenny

Subjects
PEOPLE with Down syndrome, PSYCHOLOGICAL well-being, DOWN syndrome, MENTAL health, PATHOLOGICAL psychology, AGE distribution, ANTHROPOMETRY, COMPARATIVE studies, HEALTH status indicators, RESEARCH methodology, MEDICAL cooperation, PSYCHOLOGY of parents, QUALITY of life, QUESTIONNAIRES, RESEARCH, EVALUATION research, CROSS-sectional method, PSYCHOLOGY
Abstract

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Published
2018
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23. Intrathecal baclofen therapy in children: an analysis of individualized goals.

Author

Liew, Peck Yee, Stewart, Kirsty, Khan, Debra, Arnup, Sarah Jane, and Scheinberg, Adam

Subjects
BACLOFEN, GROSS motor ability, CHILDREN with cerebral palsy, CEREBRAL palsy treatment, SPASTICITY, CEREBRAL palsy, COMPARATIVE studies, GOAL (Psychology), SPINAL infusions, LONGITUDINAL method, RESEARCH methodology, MEDICAL cooperation, MUSCLE relaxants, MUSCLE rigidity, HEALTH outcome assessment, RESEARCH, TIME, EVALUATION research, PSYCHOLOGY
Abstract

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Published
2018
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24. Educational outcomes for children with cerebral palsy: a linked data cohort study.

Author

Gillies, Malcolm B., Bowen, Jennifer R., Patterson, Jillian A., Roberts, Christine L., and Torvaldsen, Siranda

Subjects
CHILDREN with cerebral palsy, CEREBRAL palsy, EDUCATIONAL outcomes, CEREBRAL palsy treatment, COHORT analysis, DIAGNOSIS, AGE distribution, COMPARATIVE studies, HEALTH planning, LONGITUDINAL method, RESEARCH methodology, MEDICAL cooperation, RESEARCH, EVALUATION research, EDUCATIONAL attainment, PSYCHOLOGY
Abstract

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Published
2018
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25. Parenting stress, anxiety, and depression in mothers with visually impaired infants: a cross-sectional and longitudinal cohort analysis.

Author

Sakkalou, Elena, Sakki, Hanna, O'reilly, Michelle A., Salt, Alison T., Dale, Naomi J., and O'reilly, Michelle A

Subjects
PARENTING & psychology, PSYCHOLOGICAL stress, ANXIETY, MENTAL depression, CHILDREN with visual disabilities, VISION disorders, COMPARATIVE studies, LONGITUDINAL method, RESEARCH methodology, MEDICAL cooperation, MOTHER-child relationship, PSYCHOLOGY of mothers, NONPARAMETRIC statistics, PSYCHOLOGICAL tests, RESEARCH, EVALUATION research, CROSS-sectional method, PSYCHOLOGY
Abstract

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Published
2018
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26. Long-term outcomes after selective dorsal rhizotomy: a retrospective matched cohort study.

Author

Munger, Meghan E, Aldahondo, Nanette, Krach, Linda E, Novacheck, Tom F, and Schwartz, Michael H

Subjects
RHIZOTOMY, SPINAL nerve root surgery, CEREBRAL palsy, QUALITY of life, ORTHOPEDIC surgery, MENTAL health, GAIT in humans, RANGE of motion of joints, LONGITUDINAL method, TREATMENT effectiveness, CASE-control method, PSYCHOLOGY
Abstract

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Published
2017
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27. The relationship between quality of life and health-related quality of life in young males with Duchenne muscular dystrophy.

Author

Wei, Yi, Speechley, Kathy Nixon, Zou, Guangyong, and Campbell, Craig

Subjects
QUALITY of life, DUCHENNE muscular dystrophy, MEDICAL terminology, YOUNG men, PATIENTS, DISEASES, HEALTH, MENTAL health, HEALTH status indicators, PSYCHOLOGY of parents, PSYCHOMETRICS, QUESTIONNAIRES, CROSS-sectional method, PSYCHOLOGY
Abstract

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Published
2017
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28. Interrater reliability of two gait performance measures in children with neuromotor disorders across two different settings.

Author

Ammann‐Reiffer, Corinne, Bastiaenen, Caroline H G, Bie, Rob A, and Hedel, Hubertus J A

Subjects
NEUROMUSCULAR diseases, PARENTS of children with disabilities, GAIT disorders in children, INPATIENT care, FRIEDMAN test (Statistics), GAIT disorders, MOVEMENT disorders, NEUROLOGICAL disorders, PSYCHOLOGY of nurses, PSYCHOLOGY of parents, PHYSICAL therapists, QUESTIONNAIRES, REGRESSION analysis, CROSS-sectional method, DISEASE complications, PSYCHOLOGY
Abstract

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Published
2017
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29. Parent-reported indicators for detecting feeding and swallowing difficulties and undernutrition in preschool-aged children with cerebral palsy.

Author

Benfer, Katherine A, Weir, Kelly A, Ware, Robert S, Davies, Peter S W, Arvedson, Joan, Boyd, Roslyn N, and Bell, Kristie L

Subjects
MALNUTRITION in children, CHILDREN with cerebral palsy, DEGLUTITION disorders in children, PRESCHOOL children, CEREBRAL palsy, HEALTH, MALNUTRITION diagnosis, MALNUTRITION, DEGLUTITION disorders, HEALTH planning, LONGITUDINAL method, PSYCHOLOGY of parents, BODY mass index, CROSS-sectional method, DISEASE complications, DIAGNOSIS, PSYCHOLOGY
Abstract

Copyright of Developmental Medicine & Child Neurology is the property of Wiley-Blackwell and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)

Published
2017
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30. Coaction of individual and environmental factors: a review of intensive therapy paradigms for children with unilateral spastic cerebral palsy.

Author

Ferre, Claudio L and Gordon, Andrew M

Subjects
CHILDREN with cerebral palsy, BRAIN damage, PYRAMIDAL tract, CEREBRAL palsy treatment, CAREGIVERS, ARM physiology, CEREBRAL palsy, NEURAL pathways, CEREBRAL dominance, ECOLOGY, PHYSICAL therapy, SOCIAL skills, PSYCHOLOGY, PHYSIOLOGY
Abstract

Copyright of Developmental Medicine & Child Neurology is the property of Wiley-Blackwell and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)

Published
2017
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31. State‐of‐the‐art therapies for Rett syndrome

Author

Panayotis, Nicolas, Ehinger, Yann, Felix, Marie Solenne, and Roux, Jean‐Christophe

Subjects
Medical Biotechnology, Biomedical and Clinical Sciences, Rare Diseases, Neurosciences, Brain Disorders, Neurodegenerative, Genetics, Mental Health, Pediatric, Gene Therapy, Rett Syndrome, Development of treatments and therapeutic interventions, 5.2 Cellular and gene therapies, Congenital, Mice, Animals, Humans, Art Therapy, Methyl-CpG-Binding Protein 2, Brain, Mutation, Neurons, Medical and Health Sciences, Pediatrics, Biomedical and clinical sciences, Health sciences, Psychology
Abstract

Rett syndrome (RTT) is an X-linked neurogenetic disorder caused by mutations of the MECP2 (methyl-CpG-binding protein 2) gene. Over two decades of work established MeCP2 as a protein with pivotal roles in the regulation of the epigenome, neuronal physiology, synaptic maintenance, and behaviour. Given the genetic aetiology of RTT and the proof of concept of its reversal in a mouse model, considerable efforts have been made to design therapeutic approaches to re-express MeCP2. By being at the forefront of the development of innovative gene therapies, research on RTT is of paramount importance for the treatment of monogenic neurological diseases. Here we discuss the recent advances and challenges of promising genetic strategies for the treatment of RTT including gene replacement therapies, gene/RNA editing strategies, and reactivation of the silenced X chromosome. WHAT THIS PAPER ADDS: Recent advances shed light on the promises of gene replacement therapy with new vectors designed to control the levels of MeCP2 expression. New developments in DNA/RNA editing approaches or reactivation of the silenced X chromosome open the possibility to re-express the native MeCP2 locus at endogenous levels. Current strategies still face limitations in transduction efficiency and future work is needed to improve brain delivery.

Published
2023

32. Functional vision and cognition in infants with congenital disorders of the peripheral visual system.

Author

Dale, Naomi, Sakkalou, Elena, O'Reilly, Michelle, Springall, Clare, De Haan, Michelle, and Salt, Alison

Subjects
VISION, COGNITION, CONGENITAL disorders, VISION disorders in children, CHILD development, COGNITION disorders, LONGITUDINAL method, PSYCHOLOGICAL tests, RESEARCH funding, VISION testing, VISION disorders, CROSS-sectional method, SEVERITY of illness index, DISEASE complications, PSYCHOLOGY
Abstract

Copyright of Developmental Medicine & Child Neurology is the property of Wiley-Blackwell and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)

Published
2017
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33. Parents’ perspectives on nusinersen treatment for children with spinal muscular atrophy

Author

W. Ludo van der Pol, Inge Cuppen, Marijke C. Kars, Annette van der Geest, Maarten J. Fischer, Johanna M A Visser-Meily, Carin D. Schröder, Marjolijn Ketelaar, Mette van Kruijsbergen, and Fay-Lynn Asselman

Subjects
Male, Parents, 030506 rehabilitation, Databases, Factual, Decision Making, Oligonucleotides, MEDLINE, Disease, Muscular Atrophy, Spinal, 03 medical and health sciences, 0302 clinical medicine, Quality of life (healthcare), Developmental Neuroscience, Humans, Open communication, Child, Medical education, Original Articles, Variety (cybernetics), Treatment Outcome, Child, Preschool, Pediatrics, Perinatology and Child Health, Quality of Life, Life expectancy, Female, Original Article, Nusinersen, Neurology (clinical), Thematic analysis, 0305 other medical science, Psychology, 030217 neurology & neurosurgery
Abstract

Aim To gain insight into parents’ perspectives about their decision‐making process concerning nusinersen treatment for their child, including perceived needs and concerns, and to explore factors that influence this process. Method This was an exploratory qualitative interview study among parents of children with spinal muscular atrophy types 1 to 3. Data were analysed using inductive thematic analysis. Results Nineteen parents of 16 children representing 13 families participated. A wide variety of perspectives was reported ranging from a biomedical approach, which focused on battling the disease, to a holistic approach, which aimed for a good quality of life for their child. The most important factors that helped parents to decide were honest and neutral communication with their physician and access to available information. Interpretation It is important physicians understand that there are different perspectives influencing the decision‐making process. Physicians should create an environment that allows parents to accept or reject treatment by communicating honestly and openly with them and by discussing both options extensively. Clear information about pros and cons, recent developments in research, and the experiences of other parents should be made available to enable parents to make an informed decision. What this paper adds Parents perceived different needs and concerns about nusinersen treatment, which emphasized individual differences.Parents’ perspectives varied from battling the disease to preserving quality of life.Life expectancy, stopping deterioration, and improving quality of life were the perceived benefits of nusinersen treatment.Open communication about the pros and cons of treatment with clinicians facilitated decision‐making.Clear and honest information facilitated the alignment of values and goals., What this paper adds Parents perceived different needs and concerns about nusinersen treatment, which emphasized individual differences.Parents’ perspectives varied from battling the disease to preserving quality of life.Life expectancy, stopping deterioration, and improving quality of life were the perceived benefits of nusinersen treatment.Open communication about the pros and cons of treatment with clinicians facilitated decision‐making.Clear and honest information facilitated the alignment of values and goals. This article's abstract has been translated into Spanish and Portuguese. Follow the links from the abstract to view the translations.

Published
2021

34. The 'ouR-HOPE' approach for ethics and communication about neonatal neurological injury.

Author

Racine, Eric, Bell, Emily, Farlow, Barbara, Miller, Steven, Payot, Antoine, Rasmussen, Lisa Anne, Shevell, Michael I, Thomson, Donna, and Wintermark, Pia

Subjects
NEUROLOGICAL disorders, BRAIN injuries, QUALITY of life, MEDICAL ethics, NEWBORN infants, DECISION making, BRAIN injury treatment, MEDICAL personnel, COMMUNICATION, ETHICS, PROGNOSIS, PATIENTS' families, DIAGNOSIS, PSYCHOLOGY
Abstract

Predicting neurological outcomes of neonates with acute brain injury is an essential component of shared decision-making, in order to guide the development of treatment goals and appropriate care plans. It can aid parents in imagining the child's future, and guide timely and ongoing treatment decisions, including shifting treatment goals and focusing on comfort care. However, numerous challenges have been reported with respect to evidence-based practices for prognostication such as biases about prognosis among clinicians. Additionally, the evaluation or appreciation of living with disability can differ, including the well-known disability paradox where patients self-report a good quality of life in spite of severe disability. Herein, we put forward a set of five practice principles captured in the "ouR-HOPE" approach (Reflection, Humility, Open-mindedness, Partnership, and Engagement) and related questions to encourage clinicians to self-assess their practice and engage with others in responding to these challenges. We hope that this proposal paves the way to greater discussion and attention to ethical aspects of communicating prognosis in the context of neonatal brain injury. [ABSTRACT FROM AUTHOR]

Published
2017
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35. Participation, both a means and an end: a conceptual analysis of processes and outcomes in childhood disability.

Author

Imms, Christine, Granlund, Mats, Wilson, Peter H, Steenbergen, Bert, Rosenbaum, Peter L, and Gordon, Andrew M

Subjects
CHILDREN with disabilities, RESEARCH management, RESEARCH personnel, RESPONSIBILITY in children, PHYSICAL fitness for children, TREATMENT of developmental disabilities, PSYCHOLOGICAL adaptation, CONCEPTS, DEVELOPMENTAL disabilities, ECOLOGY, HEALTH promotion, HEALTH outcome assessment, PEOPLE with disabilities, PSYCHOLOGY of People with disabilities, PSYCHOLOGICAL tests, PSYCHOLOGY
Abstract

This review outlines a conceptual approach to inform research and practice aimed at supporting children whose lives are complicated by impairment and/or chronic medical conditions, and their families. 'Participation' in meaningful life activities should be an essential intervention goal, to meet the challenges of healthy growth and development, and to provide opportunities to help ensure that young people with impairments reach their full potential across their lifespan. Intervention activities and research can focus on participation as either an independent or dependent variable. The proposed framework and associated hypotheses are applicable to children and young people with a wide variety of conditions, and to their families. In taking a fresh 'non-categorical' perspective to health for children and young people, asking new questions, and exploring issues in innovative ways, we expect to learn lessons and to develop creative solutions that will ultimately benefit children with a wide variety of impairments and challenges, and their families, everywhere. [ABSTRACT FROM AUTHOR]

Published
2017
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36. Coaching approaches in early intervention and paediatric rehabilitation

Author

Schirin Akhbari Ziegler and Mijna Hadders-Algra

Subjects
030506 rehabilitation, Psychological intervention, CHILDREN, Review, Pediatrics, Early intervention, Coaching, 0302 clinical medicine, PARENTS, Professional-Family Relations, Early Intervention, Educational, Early childhood, Parent-Child Relations, Challenges, Child, Rehabilitation, 615.82: Physiotherapie, EXPERIENCES, FAMILY, Family Practice, 0305 other medical science, Psychology, STRATEGIES, PARTICIPATION, education, CEREBRAL-PALSY, MEDLINE, Reviews, Paediatric rehabilitation, Special needs, 03 medical and health sciences, Developmental Neuroscience, Intervention (counseling), CAREGIVER, 618.92: Pädiatrie, Humans, Medical education, business.industry, Mentoring, OCCUPATIONAL PERFORMANCE, Knowledge acquisition, HIGH-RISK, Implementation, Pediatrics, Perinatology and Child Health, Neurology (clinical), business, human activities, 030217 neurology & neurosurgery
Abstract

Currently, coaching is increasingly applied to foster the involvement of families with an infant or young child with special needs in early intervention and paediatric rehabilitation. Coaching practices are included in many forms of intervention and are regarded as essential to reach beneficial outcomes for the child and family. There are, however, many ambiguities that blur the concept of coaching and hamper its understanding and integration as an evidence‐based approach in early intervention and paediatric rehabilitation: lack of differentiation between coaching and training of families, for example. Challenges to incorporate coaching into professional practice relate to adult learning processes and knowledge acquisition, and transformation of attitudes, beliefs, and treatment habits. In this paper, we review the barriers encountered and the possibilities available to promote successful implementation of coaching in early childhood interventions. What this paper adds Literature defines coaching ambiguously, which hampers its implementation in early intervention.The term ‘coaching’ should be reserved for relationship‐directed, family‐centred intervention., What this paper adds Literature defines coaching ambiguously, which hampers its implementation in early intervention.The term ‘coaching’ should be reserved for relationship‐directed, family‐centred intervention. Video Podcast: https://youtu.be/mIrUbjwj-pw

Published
2020

37. Treatment and re/habilitation of children with cerebral palsy in India: a scoping review

Author

Sharada L Nayak, Joy C. MacDermid, Peter Rosenbaum, Briano DiRezze, Amitesh Narayan, and Pranay Jindal

Subjects
030506 rehabilitation, medicine.medical_specialty, education.educational_degree, Psychological intervention, India, Habilitation, 03 medical and health sciences, 0302 clinical medicine, Developmental Neuroscience, International Classification of Functioning, Disability and Health, Health care, Medicine and Health Sciences, medicine, Humans, Child, education, business.industry, Cerebral Palsy, Grey literature, Publication bias, Family medicine, Pediatrics, Perinatology and Child Health, Observational study, Neurology (clinical), 0305 other medical science, business, Psychology, 030217 neurology & neurosurgery, Qualitative research
Abstract

To describe the nature and extent of the literature addressing the medical and its re/habilitative management of cerebral palsy (CP) in India.Online worldwide scholarly databases, research hosting directories, Indian publishing houses, and grey literature were used to identify papers published between 2005 and 2016. We retrieved 144 English language papers that described the medical and rehabilitative management of Indian children with CP.Quantitative, qualitative, and mixed research designs are published by a variety of health care professionals in India. Intervention (45%) and observational studies (30%) predominate. Outcomes were categorized using the World Health Organization's International Classification of Functioning, Disability and Health framework, with body structure and function most reported and activity/participation least reported; 57% described its re/habilitation interventions and 43% were medical interventions.There is a substantial body of CP research in India that focuses on interventions to reduce impairments, with minimal attention given to activities and participation, environmental, and personal factors. Twenty-six per cent of studies are published in what appear to be 'predatory journals'. This paper serves as an alert about the presence of 'predatory journals' in medicine that may introduce publication bias, which can distort results reported in those studies individually, or from conclusions drawn in reviews that contain those studies.Cerebral palsy research in India focuses on interventions to reduce impairment. Activities, participation, and environmental factors are minimally addressed. Quantitative studies are more common than qualitative studies. Many Indian studies are published in journals that are not indexed in worldwide databases of scholarly journals.TRATAMIENTO Y REHABILITACIÓN DE NIÑOS CON PARÁLISIS CEREBRAL EN LA INDIA: REVISIÓN PANORÁMICA: OBJETIVO: Describir la naturaleza y extensión de la literatura que trata sobre el manejo médico y de rehabilitación de la parálisis cerebral (PC) en la India. METODO: Con el fin de identificar artículos publicados entre 2005 y 2016, se utilizaron bases de datos académicos en línea de todo el mundo, directorios de investigación, imprentas de publicación de la India, y literatura no convencional. Obtuvimos 144 publicaciones en el idioma inglés que describían el manejo médico y de rehabilitación de niños con PC en la India. RESULTADO: Diseños de investigación de tipo cuantitativos, cualitativos y mixtos fueron publicados por una variedad de profesionales de la salud en India. Predominan los estudios de intervención (45%) y de observación (30%). Los resultados fueron categorizados utilizando el marco de la Clasificación Internacional de Funcionamiento, Discapacidad y Salud de la Organización Mundial de la Salud (OMS) con más reportes sobre estructuras y funciones corporales y menos reportes sobre actividad y participación; 57% describieron intervenciones de rehabilitación y 43% fueron intervenciones médicas. INTERPRETACIÓN: En la India hay un inventario sustancial de investigaciones sobre PC que se focalizan en intervenciones destinadas a reducir limitaciones, dando mínima atención a actividades y participación, factores ambientales y factores personales. Se publican 26% de estudios en los que parecerían ser revistas de dudosa calidad científica llamadas “revistas depredadoras”. Este trabajo sirve como una alerta sobre la presencia en medicina de “revistas depredadoras” que pueden introducir publicaciones sesgadas, las que pueden distorsionar resultados publicados en esos estudios de manera individual, o sacar conclusiones erróneas en revisiones que contienen dichos estudios.TRATAMENTO E REABILITAÇÃO DE CRIANÇAS COM PARALISIA CEREBRAL NA ÍNDIA: UMA REVISÃO DE ESCOPO: OBJETIVO: Descrever a natureza e extensão da literatura abordando o manejo médico e de reabilitação da paralisia cerebral (PC) na Índia. MÉTODO: Bases de dados científicas online de todo o mundo, diretórios de pesquisa, casas de publicação indianas, e literatura cinzenta foram usadas para identificar artigos publicados entre 2005 e 2016. Obtivemos 144 artigos em língua inglesa que descreveram o manejo médico e de reabilitação de crianças indianas com PC. RESULTADOS: Desenhos de pesquisas quantitativos, qualitativos, e mistos foram publicados por uma variedade de profissionais da saúde na Índia. Estudos de intervenção (45%) e observacionais (30%) predominaram. Os resultados foram categorizados usando a estrutura da Classificação Internacional de Funcionalidade, Incapacidade e Saúde da Organização Mundial de Saúde, sendo que a estrutura e função do corpo foi o domínio mais reportado e atividades/participação o menos reportado; 57% descreveram intervenções de reabilitação e 43% eram intervenções médicas. INTERPRETAÇÃO: Há uma quantidade substancial de pesquisas em PC na Índia que focam em intervenções para reduzir deficiências, com atenção mínima dada a atividades e participação, e fatores pessoais e ambientais. Vinte e seis por cento dos estudos foram publicados em jornais médicos aparentemente predatórios, o que pode introduzir vieses de publicação, e distorcer os resultados relatados nestes estudos individualmente, ou em conclusões obtidas em revisões que contém este estudo.

Published
2019

38. Interactive media as a tool for reducing waiting anxiety at paediatric rehabilitation hospitals: a randomized controlled trial

Author

Darcy Fehlings, Elaine Biddiss, Patricia McKeever, Amy C. McPherson, Tara Joy Knibbe, and Ashley Cohen

Subjects
Male, medicine.medical_specialty, Adolescent, Decision Making, MEDLINE, Anxiety, law.invention, Appointments and Schedules, Young Adult, 03 medical and health sciences, 0302 clinical medicine, Developmental Neuroscience, Randomized controlled trial, 030202 anesthesiology, law, 030225 pediatrics, Health care, medicine, Humans, Outpatient clinic, Young adult, Child, business.industry, Hospitals, Pediatric, Disabled Children, Confidence interval, 3. Good health, Child, Preschool, Family medicine, Pediatrics, Perinatology and Child Health, Female, Health Facilities, Neurology (clinical), medicine.symptom, business, Psychology, Interactive media
Abstract

Aim To investigate the efficacy of waiting room media for reducing anxiety and increasing satisfaction at a paediatric rehabilitation hospital. Method In this clustered, parallel, randomized controlled trial, 310 young people with disabilities (age range 5-19y) and their parents attending outpatient clinics were assigned to interactive media (n=113), a silent nature video (n=97), or media-free comparison (n=100) groups. Young person and parent anxiety was reported using the State-Trait Anxiety Inventory (STAI) on arrival and after 10 minutes in the waiting space. Questionnaires measured young person, parent, and staff satisfaction. Results Young people exposed to interactive media reported a postexposure state anxiety that was 1.1 raw points (2.7 standardized points) lower on the STAI than the comparison group (95% confidence interval [CI] -1.9 to -0.22). There was no difference in postexposure state anxiety between the passive media and comparison groups (95% CI -0.64 to 1.1). Parents' state anxiety did not differ between conditions, but interactive media were associated with greater satisfaction (p=0.009). Of 120 staff, 119 reported that interactive media improved the clinic experience for families. Interpretation Interactive media designed for accessible, hands-free play mitigate waiting anxiety and increases satisfaction. This paper provides evidence to guide design and decision-making around the use of interactive media in health care spaces. What this paper adds Interactive media reduced preclinic waiting anxiety for young people with disabilities. Interactive media were accessible to young people with a range of mobility. Interactive media increased parental and staff satisfaction in the clinic. Guidelines for the design of hands-free, inclusive interactive media for health care facilities are presented.

Published
2017

39. Prognostic significance of neurological signs in high-risk infants - a systematic review

Author

Mijna Hadders-Algra and Elisa G Hamer

Subjects
Neurological signs, Primitive reflexes, Pediatrics, medicine.medical_specialty, CEREBRAL-PALSY, MEDLINE, CHILDREN, Cerebral palsy, PLANTAR GRASP RESPONSE, 03 medical and health sciences, AGE, 0302 clinical medicine, Developmental Neuroscience, Predictive Value of Tests, 030225 pediatrics, Tonic Neck Reflex, Moro reflex, medicine, Humans, PREDICTORS, Neurologic Examination, PRETERM, Cerebral Palsy, Infant, REFLEX PROFILE, Disorders of movement Donders Center for Medical Neuroscience [Radboudumc 3], medicine.disease, LIFE, Predictive value of tests, Pediatrics, Perinatology and Child Health, Neurology (clinical), Abnormality, FOLLOW-UP, Psychology, 030217 neurology & neurosurgery
Abstract

Item does not contain fulltext The aim of this paper was to systematically review the literature on the significance of specific neurological signs in infancy, in particular in infants at risk for developmental problems such as cerebral palsy (CP). A literature search was performed using the databases PubMed, Embase, Web of Science, and AMED. Papers on infantile reactions ('primitive reflexes') and postural reactions were included if data were available allowing for calculation of sensitivity, specificity, or positive and negative predictive value for CP or atypical developmental outcome. Our search identified 23 articles on 20 different neurological signs. Properties of six neurological signs were reported in at least three different papers. The data indicated that, in early infancy, an absent Moro or plantar grasp response may be predictive for adverse developmental outcome. After early infancy, persistence of the Moro response and asymmetric tonic neck reflex was clinically significant. Prediction of a delayed emergence of the parachute reaction increases with age. Abnormal performances on the pull-to-sit manoeuvre and vertical suspension test have predictive significance throughout infancy. The neurological signs reviewed have some predictive value in infants at risk. For most of the signs, criteria for abnormality and significance are age-dependent.

Published
2016

40. Deconstructing the autism concept and its semantics

Author

William D. Graf

Subjects
Cognitive science, Invited Review, Reviews, medicine.disease, Semantics, behavioral disciplines and activities, Developmental Neuroscience, mental disorders, Pediatrics, Perinatology and Child Health, medicine, Humans, Autism, Neurology (clinical), Autistic Disorder, Psychology
Abstract

Autism is a polysemous concept. It is defined as a neurodevelopmental disorder that is diagnosed based on an assessment of behaviour and dysfunction. Autism also refers to a specific way of information or sensorial processing. For those diagnosed with autism, it is a real and shared experience. In this paper, I sketch the moral work that biological conceptions of autism perform. They help to conceptualize the diagnosis and associated challenges as real and they remove some of the blame from the diagnosed person and/or their parents. But such approaches also risk neglecting the role of behaviour as a meaningful reaction to experiences. In thinking about the ethics of autism research, diagnosis of autism, and autism care, the recent findings of epigenetics and systems biology may help us overcome the dichotomy between biology and psyche, and point the way to a more nuanced and ethical view. What this paper adds The meaning of ‘autism’ has different layers and as such autism is a polysemous concept.The lived experience of autistic people matters in research., What this paper adds The meaning of ‘autism’ has different layers and as such autism is a polysemous concept.The lived experience of autistic people matters in research. This article is commented on by Graf on page 994 of this issue. This article's abstract has been translated into Spanish and Portuguese. Follow the links from the abstract to view the translations.

Published
2019

41. Participation‐based intervention in childhood disability: a family‐centred approach

Author

Dana Anaby and Kinga Pozniak

Subjects
Developmental Neuroscience, Nursing, Intervention (counseling), Pediatrics, Perinatology and Child Health, Family centred, Humans, Reviews, Systematic Review, Neurology (clinical), Child, Psychology, Disabled Children
Abstract

Aim The aim of this review was to synthesize empirical evidence of family factors associated with participation of children with disabilities aged 5 to 12 years to inform the development of family‐centred participation‐fostering interventions. Method A systematic search was performed for articles published in English between 2001 and 2017 in MEDLINE, PsycINFO, CINAHL, Scopus, and ASSIA following the Preferred Reporting Items for Systematic Review and Meta‐Analysis (PRISMA) guidelines. Quality of evidence was appraised using the Research Triangle Institute Item Bank. Family factors associated with participation were identified and assessed using a multistage ‘semi‐quantitative’ approach. Results Thirty studies were included in the review. Four non‐modifiable ‘status’ factors consistently associated with participation were parental ethnicity, parental education, family type, and family socio‐economic status. Six modifiable ‘process’ factors with consistent associations with participation were parental mental and physical health functioning, parental self‐efficacy beliefs, parental support, parental time, family preferences, and activity orientation. Interpretation Rehabilitation professionals should direct their focus towards modifiable family factors as primary targets for family‐centred interventions. Strategies that can improve families’ access to information, counselling, and community support services are likely to support children's participation by empowering families and optimizing their health and well‐being. What this paper adds Non‐modifiable ‘status’ and modifiable ‘process’ factors are important in participation of children with disabilities.Disadvantaged family circumstances shaped by status factors are associated with reduced participation.Key process factors for intervention are parental mental and physical health and parental self‐efficacy beliefs.Other important process factors for intervention are parental support and time, family preferences, and activity orientation., What this paper adds Non‐modifiable ‘status’ and modifiable ‘process’ factors are important in participation of children with disabilities.Disadvantaged family circumstances shaped by status factors are associated with reduced participation.Key process factors for intervention are parental mental and physical health and parental self‐efficacy beliefs.Other important process factors for intervention are parental support and time, family preferences, and activity orientation. This article is commented on by Anaby and Pozniak on page https://doi.org/10.1111/dmcn.14156 of this issue. This article's abstract has been translated into Spanish and Portuguese. Follow the links from the http://onlinelibrary.wiley.com/doi/10.1111/dmcn.14133/abstract to view the translations.

Published
2019

42. Patient perspectives in pediatric neurology: a critical shift in the paradigm of outcome measurement

Author

David L. Streiner, Peter Rosenbaum, and Gabriel M. Ronen

Subjects
030506 rehabilitation, media_common.quotation_subject, Psychological intervention, MEDLINE, Pediatrics, Outcome (game theory), 03 medical and health sciences, 0302 clinical medicine, Quality of life (healthcare), Developmental Neuroscience, Nursing, Health care, Content validity, Humans, Quality (business), Patient Reported Outcome Measures, Child, media_common, business.industry, Harm, Neurology, Pediatrics, Perinatology and Child Health, Neurology (clinical), 0305 other medical science, Psychology, business, 030217 neurology & neurosurgery
Abstract

This review explores children's self-reported outcome measurements in pediatric neurology. We examine the following questions: (1) What is meant by patient-reported health, functioning, and quality of life outcomes? (2) How can patients express whether the interventions they receive do more good than harm? (3) Why and how should pediatric neurology patients help determine the outcomes of interest? (4) What tools and recommendations are available to evaluate the outcomes of interest? Applying patients' perspectives across the processes of evaluation of medical interventions has become an important expectation. These developments, consistent with current healthcare goals, coincide with the evolution of pediatric neurology into a sophisticated diagnostic-interventional field that aims to prolong survival, decrease impairments and symptoms, and improve patients' well-being - the recognized essential endpoints of interest in all medicine. What this paper adds Health endpoint indicators are expanding beyond 'objective' parameters measured by professionals to include patient-reported outcomes. Evidence supports the capability of children as young as 8 years with impairments to report their own health and quality of life. Systematic use of patient-reported outcome measures (PROMs) can help patients and clinicians make better decisions. There is considerable variation in the quality of PROMs, mostly related to conceptual issues, content validity, or the way items are phrased.

Published
2021

43. Psychosocial function in the first year after childhood stroke.

Author

Greenham, Mardee, Anderson, Vicki, Hearps, Stephen, Ditchfield, Michael, Coleman, Lee, Mackay, Mark T, Monagle, Paul, and Gordon, Anne L

Subjects
STROKE, NEURAL development, NEURAL circuitry, MOTOR ability, COGNITIVE ability, LANGUAGE disorders, PSYCHOLOGY, CEREBRAL ischemia treatment, STROKE treatment, CEREBRAL ischemia, AGE factors in disease, ANALYSIS of variance, LONGITUDINAL method, MENTAL health, PSYCHOLOGY of parents, QUESTIONNAIRES, SOCIAL skills, TIME
Abstract

Aim: Childhood stroke disrupts brain development and emerging neural networks. Motor, cognitive, and language deficits are well recognized, yet little is known about psychosocial function after childhood stroke. This study aims to describe psychosocial function within the first year after childhood stroke, and to identify factors associated with outcome.Method: Thirty-seven children were involved in a prospective, longitudinal study investigating recovery over the first year after childhood stroke. Children's social functioning was assessed at 6-months and 12-months poststroke and psychological function at 12-months poststroke, using standardized measures.Results: Mean social function was poorer at both 6-months and 12-months poststroke, compared to prestroke. Psychological problems were more common than expected, with emotional difficulties and hyperactivity-inattention most significantly affected. Poorer social function was associated with older age at onset, acute neurological impairment, and prestroke social impairment. Social and psychological problems were associated with parent mental health.Interpretation: While not all children are affected, psychosocial impairment affects a significant minority after childhood stroke. Older age at onset, acute neurological impairment, prestroke social problems, and poorer parent mental health were associated with deficits. Identifying early predictors of poorer outcome will facilitate early intervention. Of particular importance is parent mental health, suggesting support for families may improve child outcome. [ABSTRACT FROM AUTHOR]

Published
2017
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44. Early predictors of psychosocial functioning 5 years after paediatric stroke.

Author

Greenham, Mardee, Anderson, Vicki, Cooper, Anna, Hearps, Stephen, Ditchfield, Michael, Coleman, Lee, Hunt, Rod W, Mackay, Mark T, Monagle, Paul, and Gordon, Anne L

Subjects
PEDIATRICS, STROKE, PSYCHOSOCIAL factors, COGNITIVE ability, EARLY medical intervention, PSYCHOLOGY, CEREBRAL ischemia treatment, STROKE diagnosis, STROKE treatment, CEREBRAL ischemia, LONGITUDINAL method, MENTAL health, PROGNOSIS, SOCIAL skills, TIME, TREATMENT effectiveness, DIAGNOSIS
Abstract

Copyright of Developmental Medicine & Child Neurology is the property of Wiley-Blackwell and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)

Published
2017
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45. Genotype-phenotype relationship in mucopolysaccharidosis II: predictive power of IDS variants for the neuronopathic phenotype.

Author

Vollebregt, Audrey A M, Hoogeveen‐Westerveld, Marianne, Kroos, Marian A, Oussoren, Esmee, Plug, Iris, Ruijter, George J, van der Ploeg, Ans T, and Pijnappel, W W M Pim

Subjects
MUCOPOLYSACCHARIDOSIS II, GENOTYPES, PHENOTYPES, SULFATASES, INTELLECTUAL disabilities, GLYCOSAMINOGLYCANS, EPILEPSY & psychology, EPILEPSY, GENETICS, GENETIC techniques, GLYCOPROTEINS, IMMUNOBLOTTING, INTELLECT, LONGITUDINAL method, MASS spectrometry, EDUCATIONAL attainment, PSYCHOLOGY
Abstract

Copyright of Developmental Medicine & Child Neurology is the property of Wiley-Blackwell and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)

Published
2017
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46. Mental health outcomes of developmental coordination disorder in late adolescence.

Author

Harrowell, Ian, Hollén, Linda, Lingam, Raghu, Emond, Alan, and Hollén, Linda

Subjects
MOVEMENT disorders, MENTAL health of teenagers, INTELLIGENCE levels, SOCIAL status, SELF-esteem in adolescence, LOGISTIC regression analysis, REGRESSION analysis, PSYCHIATRIC epidemiology, COMMUNICATIVE disorders, INTELLECT, LONGITUDINAL method, MENTAL health, QUESTIONNAIRES, RESEARCH funding, SELF-perception, SEX distribution, SOCIOECONOMIC factors, RELATIVE medical risk, SEVERITY of illness index, ODDS ratio, PSYCHOLOGY
Abstract

Copyright of Developmental Medicine & Child Neurology is the property of Wiley-Blackwell and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)

Published
2017
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47. Niemann-Pick type C as a cause of progressive intellectual and neurological deterioration in childhood.

Author

Winstone, Anne Marie, Stellitano, Lesley Ann, and Verity, Christopher Michael

Subjects
NIEMANN-Pick diseases, NEONATAL jaundice, GAIT disorders, MUSCLE hypotonia, DYSARTHRIA, AGE factors in disease, BRAIN, DIAGNOSIS, EPIDEMIOLOGY, GLYCOSIDASES, LONGITUDINAL method, MEDICAL errors, PEOPLE with intellectual disabilities, PIPERIDINE, TIME, DISEASE progression, CHEMICAL inhibitors, DISEASE complications, PSYCHOLOGY, THERAPEUTICS
Abstract

Copyright of Developmental Medicine & Child Neurology is the property of Wiley-Blackwell and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)

Published
2017
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48. Measurement properties of the Gross Motor Function Classification System, Gross Motor Function Classification System‐Expanded & Revised, Manual Ability Classification System, and Communication Function Classification System in cerebral palsy: a systematic review with meta‐analysis

Author

Sofia Verola, Daniele Piscitelli, Francesco Ferrarello, Alessandro Ugolini, Leonardo Pellicciari, Piscitelli, D, Ferrarello, F, Ugolini, A, Verola, S, and Pellicciari, L

Subjects
030506 rehabilitation, medicine.medical_specialty, Severity of Illness Index, Cerebral palsy, Disability Evaluation, 03 medical and health sciences, 0302 clinical medicine, Physical medicine and rehabilitation, Developmental Neuroscience, Health care, medicine, Content validity, Humans, COSMIN, Gross Motor Function Classification System-Expanded &amp, Reliability (statistics), business.industry, Cerebral Palsy, Construct validity, Gross Motor Function Classification System, Evidence-based medicine, medicine.disease, Revised, Manual Ability Classification System, Communication Function Classification System, Cerebral palsy, Motor Skills, Meta-analysis, Pediatrics, Perinatology and Child Health, Neurology (clinical), 0305 other medical science, business, Psychology, 030217 neurology & neurosurgery
Abstract

Aim: To systematically review and meta-analyse the measurement properties of the Gross Motor Function Classification System (GMFCS), Gross Motor Function Classification System-Expanded & Revised (GMFCS-E&R), Manual Ability Classification System (MACS), and Communication Function Classification System (CFCS) in children with cerebral palsy (CP). Method: Six databases were searched. Articles on the measurement properties of the GMFCS, GMFCS-E&R, MACS, and CFCS administered to children with CP were included. Quality was assessed by means of the COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) Risk of Bias checklist. The level and grading of evidence were defined for each measurement property. Results: Forty-four articles were included in the systematic review and 37 articles were included in the meta-analysis. The level (grading) of evidence was strong (positive) for reliability and construct validity. Content validity displayed an unknown level of evidence for the GMFCS, limited evidence (positive) for the MACS, and moderate evidence (positive) for the CFCS. There was moderate (positive) evidence for measurement error in the GMFCS and MACS. The level of evidence for responsiveness was unknown. No studies investigated cross-cultural validity. Interpretation: These instruments can be used by health care professionals and caregivers to quantify the constructs needed to measure ability in children with CP. Current high-quality evidence supports the use of these tools to classify ability in children with CP. Adopting the COSMIN guidelines, content, and cross-cultural validity should be investigated further. What this paper adds Strong evidence supports the reliability and construct validity of the GMFCS, GMFCS-E&R, MACS, and CFCS as functional classification systems in children with cerebral palsy. The GMFCS, GMFCS-E&R, MACS, and CFCS can be used by both health care professionals and caregivers. The GMFCS, GMFCS-E&R, MACS, and CFCS should not be used to detect change.

Published
2021

49. Fetal movements: the origin of human behaviour

Author

Christa Einspieler, Daniela Prayer, and Peter B. Marschik

Subjects
Fetus, Movement (music), Eye movement, Motor Activity, Movement assessment, General movements, Fetal Development, 03 medical and health sciences, 0302 clinical medicine, Developmental Neuroscience, Pregnancy, 030225 pediatrics, Pediatrics, Perinatology and Child Health, Fetal movement, Breathing, Humans, Head movements, Female, Neurology (clinical), Psychology, Fetal Movement, Neuroscience, 030217 neurology & neurosurgery
Abstract

The study of the onset and ontogeny of human behaviour has made it clear that a multitude of fetal movement patterns are spontaneously generated, and that there is a close association between activity and the development of peripheral and central structures. The embryo starts moving by 7.5 week's gestation; 2 to 3 weeks later, a number of movement patterns including general movements, isolated limb and head movements, hiccup, and breathing movements, appear. Some movements (e.g. yawning, smiling, 'pointing'; we show these in eight videos in this review) precede life-long patterns; others have intrauterine functions, such as sucking/swallowing for amniotic fluid regulation, breathing movements for lung development, or eye movements for retinal cell diversity. In cases of developmental brain dysfunction, fetal general movements alter their sequence and gestalt, which suggests a dysfunction of the developing nervous system. The scarcity of longitudinal studies calls for further comprehensive research on the predictive value of prenatal functional deviations. What this paper adds Motor output can occur in the absence of sensory input. Structural development is activity-dependent. Fetal general movements are among the first movement patterns to occur. Pregnancy-related and maternal factors impact quantity and modulation of fetal general movements. Prenatal general movement assessment has not yet brought the expected breakthrough.

Published
2021