29 results
Search Results
2. Electronic participation-focused care planning support for families: a pilot study.
- Author
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Jarvis, Jessica M, Kaelin, Vera C, Anaby, Dana, Teplicky, Rachel, and Khetani, Mary A
- Subjects
PILOT projects ,FAMILY planning ,INTERNET access ,STANDARD deviations ,PARTICIPATION ,RESEARCH ,PATIENT participation ,CAREGIVERS ,CLINICAL trials ,RESEARCH methodology ,FAMILIES ,EVALUATION research ,MEDICAL cooperation ,BURDEN of care ,MEDICAL protocols ,COMPARATIVE studies ,IMPACT of Event Scale ,QUESTIONNAIRES ,RESEARCH funding ,REHABILITATION ,TELEMEDICINE - Abstract
Aim: To evaluate the feasibility, acceptability, and preliminary effects of Participation and Environment Measure-Plus (PEM+) 2.0, an optimized version of a web-based, participation-focused, care-planning tool.Method: Twenty-two caregivers of children aged 0 to 5 years receiving rehabilitation services, who reported dissatisfaction with their child's participation, had internet access, and could read and write English, were recruited for this 2-week, single-arm pilot trial. Feasibility was assessed through retention rates, completion time, percentage of care plans developed relative to caregiver reported need, and independent completion of PEM+ 2.0. Acceptability was assessed by the Usefulness, Satisfaction, and Ease of Use Questionnaire. Preliminary effects were assessed by two items on caregiver reported impact of PEM+ 2.0 on confidence for addressing their child's participation.Results: Eighteen caregivers completed at least one iteration of PEM+ 2.0; of those, 17 were female and 15 were 30 to 39 years old. The median completion time was 12.99 minutes (quartile 1, 6.30; quartile 3, 17.33), mean care plan creation relative to need was 50% (standard deviation [SD] 31), and 17 completed PEM+ 2.0 independently. Mean acceptability scores were 3.80 to 4.97 (SD 1.25-1.97) and mean preliminary effect scores were 4.61 to 4.72 (SD 1.85-2.24), out of 7.0. There were strong and significant positive associations between two of the three estimates of PEM+ 2.0 acceptability and caregiver confidence (r=0.577-0.793, p<0.01).Interpretation: Electronic health tools have the potential for facilitating family-centered care in pediatric rehabilitation. PEM+ 2.0 is a feasible tool within pediatric rehabilitation and has potential to be an acceptable tool for improving caregiver confidence for promoting their child's participation in valued activities.What This Paper Adds: Participation and Environment Measure-Plus (PEM+) 2.0 is feasible for collaboratively engaging caregivers in the care-planning process. Caregivers perceived PEM+ 2.0 as helpful for thinking about their child's participation and what can be done to improve it. Feasibility and acceptability results will inform PEM+ 2.0 optimizations. [ABSTRACT FROM AUTHOR]- Published
- 2020
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3. Participation in leisure activities in adolescents with congenital heart defects.
- Author
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Majnemer, Annette, Rohlicek, Charles, Dahan‐Oliel, Noemi, Sahakian, Sossy, Mazer, Barbara, Maltais, Désirée B, Schmitz, Norbert, and Dahan-Oliel, Noemi
- Subjects
CONGENITAL heart disease ,LEISURE ,TEENAGERS ,SOCIAL participation ,PARTICIPATION ,RESEARCH ,SOCIAL support ,RESEARCH methodology ,EVALUATION research ,MEDICAL cooperation ,NEUROPSYCHOLOGICAL tests ,COMPARATIVE studies ,EXERCISE ,QUESTIONNAIRES ,RESEARCH funding - 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
- 2020
- Full Text
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4. Self-perceived gait quality in young adults with cerebral palsy.
- Author
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Bonnefoy‐Mazure, Alice, De Coulon, Geraldo, Armand, Stephane, and Bonnefoy-Mazure, Alice
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CEREBRAL palsy ,YOUNG adults ,WALKING speed ,PEOPLE with cerebral palsy ,DIAGNOSIS of neurological disorders ,SELF diagnosis ,EXERCISE tests ,RESEARCH ,NEUROLOGICAL disorders ,RESEARCH methodology ,EVALUATION research ,MEDICAL cooperation ,HEALTH surveys ,SEVERITY of illness index ,GAIT disorders ,COMPARATIVE studies ,RESEARCH funding ,QUESTIONNAIRES ,DISEASE complications - Abstract
Aim: To explore how patients with cerebral palsy (CP) perceive their gait and evaluate associations between subjective gait perception and: objective gait parameters, endurance, pain, and fatigue.Method: Sixty-two patients (21 females and 41 males; mean [SD] age 20y [5y 1mo], range 15-29y) performed a clinical gait analysis. Self-selected walking speed, Gait Profile Score, and Gait Variable Score were calculated. Subjective gait perception was assessed with a visual analogue scale using the question: 'On a scale from 0 (worst) to 10 (optimal), how would you describe your walking today?'. A 6-minute walk test (6MWT) measured endurance; the 36-Item Short Form Health Survey (SF-36) evaluated quality of life. T-tests, Pearson correlations, and univariate and multiple linear regression models were used to compare and find associations between the data.Results: Overall mean (SD) subjective gait perception was 7.5 (1.8) and was significantly higher for patients in Gross Motor Function Classification System (GMFCS) level I (7.9 [1.5]) than for patients in GMFCS levels II and III (5.9 [2.0]). Positive correlations were found between subjective gait perception and gait scores, walking speed, 6MWT distance, and SF-36 score. Only walking speed was a significant predictor of subjective gait perception.Interpretation: Subjective gait perception was influenced by GMFCS level and linked partially with the walking speed. The gait quality did not explain subjective gait perception. It is important to combine subjective and objective gait scores to develop personalized therapeutic goals.What This Paper Adds: Subjective gait perception is influenced by the physical impairment levels of patients with cerebral palsy. Subjective gait perception and objective gait scores are associated. Walking speed is the only predictor of gait perception. [ABSTRACT FROM AUTHOR]- Published
- 2020
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5. Seizure freedom improves health-related quality of life after epilepsy surgery in children.
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Jain, Puneet, Smith, Mary Lou, Speechley, Kathy, Ferro, Mark, Connolly, Mary, Ramachandrannair, Rajesh, Almubarak, Salah, Andrade, Andrea, Widjaja, Elysa, and Pepsqol Study Team
- Subjects
EPILEPSY surgery ,QUALITY of life ,CHILDHOOD epilepsy ,PEDIATRIC surgery ,SEIZURES (Medicine) ,TEMPORAL lobectomy ,ANTICONVULSANTS ,RESEARCH ,RESEARCH methodology ,EVALUATION research ,MEDICAL cooperation ,TREATMENT effectiveness ,COMPARATIVE studies ,RESEARCH funding ,QUESTIONNAIRES ,LONGITUDINAL method - 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
- 2020
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6. Health-related quality of life, pain, and fatigue in young adults with cerebral palsy.
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Jacobson, Dan N O, Löwing, Kristina, Tedroff, Kristina, and Jacobson, Dan No
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QUALITY of life ,YOUNG adults ,CEREBRAL palsy ,FATIGUE (Physiology) ,PHYSICAL activity ,PAIN diagnosis ,RESEARCH ,PAIN ,PAIN measurement ,CROSS-sectional method ,RESEARCH methodology ,HEALTH status indicators ,EVALUATION research ,MEDICAL cooperation ,HEALTH surveys ,SEVERITY of illness index ,COMPARATIVE studies ,BRIEF Pain Inventory ,RESEARCH funding ,QUESTIONNAIRES ,DISEASE complications - 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
- 2020
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7. Sitting in patients with spinal muscular atrophy type 1 treated with nusinersen.
- Author
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Aragon‐Gawinska, Karolina, Daron, Aurore, Ulinici, Ana, Vanden Brande, Laura, Seferian, Andreea, Gidaro, Teresa, Scoto, Mariacristina, Deconinck, Nicolas, Servais, Laurent, Benezit, Audrey, Mathieu, Marie‐Laure, Cances, Claude, Durigneux, Julien, Ropars, Juliette, Chouchane, Mondher, Forey, Peggy, Lazaro, Leila, Hughes, Imelda, Illingworth, Marjorie, and Marini‐Bettolo, Chiara
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SPINAL muscular atrophy ,SITTING position ,NEUROMUSCULAR diseases ,CHILDREN'S hospitals ,GROSS motor ability ,TRAUMA registries ,MUSCULAR atrophy ,RESEARCH ,RESEARCH methodology ,ACQUISITION of data ,EVALUATION research ,MEDICAL cooperation ,NUCLEOTIDES ,COMPARATIVE studies ,QUESTIONNAIRES ,RESEARCH funding ,MOTOR ability ,NEUROLOGIC examination - Abstract
Aim: To determine factors associated with acquisition of a sitting position in patients with spinal muscular atrophy type 1 (SMA1) treated with nusinersen.Method: Using data from the registry of patients with SMA1 treated with nusinersen, we compared the subgroups of sitters and non-sitters after 14 months of therapy as a function of baseline level, SMN2 copy number, age at treatment initiation, and improvement at 2 and 6 months post-treatment initiation. We used Hammersmith Infant Neurological Examination, Section 2 (HINE-2) and Children's Hospital of Philadelphia Infant Test of Neuromuscular Disorders for motor evaluation.Results: Fifty children (22 females, 28 males), mean age 22 months (SD 20.7; range 2.5-102.8mo) were treated. Data on sitting position acquisition were collected for 47 patients at month 14. Fifteen patients were able to sit unassisted; 11 of 15 had a baseline HINE-2 score of at least 2 points and 11 of 14 had an improvement over baseline of at least 2 points at month 6. Patients who improved by 2 or more points at month 6 were three times more likely to be sitters at month 14 than those who did not.Interpretation: High baseline motor function and improvement in HINE-2 score after 6 months of treatment are associated with the probability of acquiring a sitting position in patients with SMA1 treated with nusinersen.What This Paper Adds: Fifteen of 47 patients with spinal muscular atrophy could sit unaided 14 months after treatment with nusinersen. The number of SMN2 copies were not predictive of acquisition of a sitting position. Baseline condition and clinical response after 6 months of treatment were most predictive of sitting position acquisition. [ABSTRACT FROM AUTHOR]- Published
- 2020
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8. Spasticity and pain in adults with cerebral palsy.
- Author
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Flanigan, Megan, Gaebler‐Spira, Deborah, Kocherginsky, Masha, Garrett, Ariane, Marciniak, Christina, and Gaebler-Spira, Deborah
- Subjects
CEREBRAL palsy ,SPASTICITY ,BRIEF Pain Inventory ,PAIN ,SPASMS ,RESEARCH ,PAIN measurement ,AGE distribution ,CROSS-sectional method ,RESEARCH methodology ,EVALUATION research ,MEDICAL cooperation ,COMPARATIVE studies ,RESEARCH funding ,QUESTIONNAIRES ,DISEASE complications - 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
- 2020
- Full Text
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9. Health care service for families with children at early risk of developmental delay: an All Our Families cohort study.
- Author
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Russell, Matthew J, Premji, Shainur, Mcdonald, Sheila, Zwicker, Jennifer D, and Tough, Suzanne
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MEDICAL care ,DEVELOPMENTAL delay ,CHILD care services ,MEDICAL care use ,CHILDREN with developmental disabilities ,LABOR supply ,RESEARCH ,RESEARCH methodology ,DEVELOPMENTAL disabilities ,EVALUATION research ,MEDICAL cooperation ,PATIENTS' attitudes ,COMPARATIVE studies ,DYADIC Adjustment Scale ,IMPACT of Event Scale ,QUESTIONNAIRES ,RESEARCH funding ,LONGITUDINAL method - 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
- 2020
- Full Text
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10. Fatigue in children with perinatal stroke: clinical and neurophysiological associations.
- Author
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Wrightson, James G, Zewdie, Ephrem, Kuo, Hsing‐Ching, Millet, Guillaume Y, Kirton, Adam, and Kuo, Hsing-Ching
- Subjects
FATIGUE (Physiology) ,MANN Whitney U Test ,GRIP strength ,CEREBRAL palsy ,STROKE ,RESEARCH ,NEURAL pathways ,RESEARCH methodology ,EVALUATION research ,MEDICAL cooperation ,COMPARATIVE studies ,HAND ,BODY movement ,RESEARCH funding ,QUESTIONNAIRES ,LONGITUDINAL method ,HEMIPLEGIA ,DISEASE complications - Abstract
Aim: To characterize fatigue in children with hemiparesis with perinatal stroke and explore associations with measures of motor performance and corticospinal excitability.Method: Forty-five children (16 females, 29 males), aged 6 to 18 years (mean [SD] 12y [4]), with magnetic resonance imaging-confirmed perinatal stroke participated. Associations between fatigue (Pediatric Quality of Life Inventory Version 3.0 cerebral palsy module fatigue subscale), motor performance (Assisting Hand Assessment [AHA], Box and Blocks Test, grip strength), and excitability of corticospinal projections to both hands were examined using ranked tests of correlation, robust regression, and the Mann-Whitney U test.Results: Nearly half of the participants (n=21) reported experiencing fatigue in the previous month. Function in the less affected hand (Box and Blocks Test, grip strength) was correlated with fatigue scores. Participants with preserved ipsilateral projections to the more affected hand had less fatigue, and scores correlated with the excitability of these projections. Fatigue scores were not associated with age, sex, or AHA score.Interpretation: Fatigue is common in children with hemiparesis with perinatal stroke and is associated with motor performance and the presence and excitability of ipsilateral corticospinal projections from the contralesional hemisphere to the more affected hand.What This Paper Adds: Fatigue is common in children with hemiparesis with perinatal stroke. Fatigue was associated with motor performance and strength in the less affected, but not the more affected, hand. Fatigue was associated with the presence and excitability of ipsilateral corticospinal projections from the contralesional hemisphere. [ABSTRACT FROM AUTHOR]- Published
- 2020
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11. Fatigue, depression, and quality of life in children with multiple sclerosis: a comparative study with other demyelinating diseases.
- Author
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Florea, Anca, Maurey, Helene, Le Sauter, Melanie, Bellesme, Celine, Sevin, Caroline, and Deiva, Kumaran
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MULTIPLE sclerosis ,QUALITY of life ,POOR children ,FATIGUE (Physiology) ,SPINE diseases ,MYELIN sheath diseases ,MENTAL health ,RESEARCH ,RESEARCH methodology ,EVALUATION research ,MEDICAL cooperation ,COMPARATIVE studies ,SEVERITY of illness index ,MENTAL depression ,QUESTIONNAIRES - 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
- 2020
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12. Child and Adolescent Intellectual Disability Screening Questionnaire to identify children with intellectual disability.
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McKenzie, Karen, Murray, George, Hutton, Linda, Murray, Aja, Delahunty, Lauren, O'Hare, Anne, and Murray, Kara
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INTELLECTUAL disabilities ,CHILDREN with disabilities ,AGE groups ,INTER-observer reliability ,STATISTICAL reliability ,RESEARCH ,RESEARCH evaluation ,PREDICTIVE tests ,AGE distribution ,RESEARCH methodology ,MEDICAL screening ,EVALUATION research ,MEDICAL cooperation ,PSYCHOMETRICS ,COMPARATIVE studies ,RESEARCH funding ,QUESTIONNAIRES ,PEOPLE with intellectual disabilities - 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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13. Child neurodevelopment and mental health after surgical ventricular septal defect repair: risk and protective factors.
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Eichler, Anna, Köhler-Jonas, Nicola, Stonawski, Valeska, Purbojo, Ariawan, Moll, Gunther H, Heinrich, Hartmut, Cesnjevar, Robert A, and Kratz, Oliver
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HEART abnormalities ,ANXIETY ,SYMPTOMS ,QUALITY of life ,QUESTIONNAIRES ,MENTAL health ,ANALYSIS of variance ,COMPARATIVE studies ,DEVELOPMENTAL disabilities ,EMOTIONS ,LANGUAGE acquisition ,RESEARCH methodology ,MEDICAL cooperation ,MENTAL illness ,MOTHERHOOD ,PSYCHOLOGY of movement ,PARENTING ,RESEARCH ,RESEARCH funding ,SURGICAL complications ,VENTRICULAR septal defects ,EVALUATION research ,RETROSPECTIVE studies ,CASE-control method - 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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14. Family-centred health care for children with cerebral palsy.
- Author
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Shevell, Michael, Oskoui, Maryam, Wood, Ellen, Kirton, Adam, Van Rensburg, Esias, Buckley, David, Ng, Pamela, and Majnemer, Annette
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CHILDREN with cerebral palsy ,CARE of children with disabilities ,MEDICAL care of children with disabilities ,FAMILY medicine ,MEDICAL quality control ,CEREBRAL palsy ,CHILD health services ,COMMUNICATION ,COMPARATIVE studies ,HEALTH care teams ,RESEARCH methodology ,MEDICAL cooperation ,PSYCHOLOGY of parents ,PATIENT satisfaction ,QUESTIONNAIRES ,REHABILITATION centers ,RESEARCH ,RESEARCH funding ,CHILDREN with disabilities ,SOCIOECONOMIC factors ,EVALUATION research ,ACQUISITION of data ,CROSS-sectional method ,SEVERITY of illness index ,PATIENT-centered care - 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
- Full Text
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15. Neurodevelopmental difficulties in children with idiopathic clubfoot.
- Author
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Lööf, Elin, Andriesse, Hanneke, Broström, Eva W, André, Marie, and Bölte, Sven
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CLUBFOOT ,FOOT abnormalities ,MOTOR ability ,SENSORY perception ,DEVELOPMENTAL disabilities ,NEUROLOGICAL disorders ,COMPARATIVE studies ,RESEARCH methodology ,MEDICAL cooperation ,QUESTIONNAIRES ,RESEARCH ,RESEARCH funding ,EVALUATION research ,CROSS-sectional method ,DISEASE complications ,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
- 2019
- Full Text
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16. Development and content validation of the Muscular Dystrophy Child Health Index of Life with Disabilities questionnaire for children with Duchenne muscular dystrophy.
- Author
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Propp, Roni, McAdam, Laura, Davis, Aileen M, Salbach, Nancy M, Weir, Shannon, Encisa, Clarissa, and Narayanan, Unni G
- Subjects
DUCHENNE muscular dystrophy ,MUSCULAR dystrophy in children ,HEALTH status indicators ,QUALITY of life ,PSYCHOMETRICS ,DIAGNOSIS of Duchenne muscular dystrophy ,TREATMENT of Duchenne muscular dystrophy ,CAREGIVERS ,COMPARATIVE studies ,INTERVIEWING ,RESEARCH methodology ,MEDICAL cooperation ,MEDICAL personnel ,PARENTS ,PSYCHOLOGY of children with disabilities ,QUESTIONNAIRES ,RESEARCH ,RESEARCH funding ,CHILDREN with disabilities ,EVALUATION research - 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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17. Responsiveness of the ACTIVLIM-CP questionnaire: measuring global activity performance in children with cerebral palsy.
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Paradis, Julie, Arnould, Carlyne, Thonnard, Jean‐Louis, Houx, Laëtitia, Pons‐Becmeur, Christelle, Renders, Anne, Brochard, Sylvain, Bleyenheuft, Yannick, Thonnard, Jean-Louis, and Pons-Becmeur, Christelle
- Subjects
PEDIATRIC intensive care ,ACTIVITIES of daily living ,BOTULINUM A toxins ,QUESTIONNAIRES ,QUALITY of life ,CEREBRAL palsy treatment ,BOTULINUM toxin ,CEREBRAL palsy ,COMPARATIVE studies ,INJECTIONS ,LONGITUDINAL method ,RESEARCH methodology ,MEDICAL cooperation ,MOTOR ability ,MUSCLE relaxants ,PHYSICAL therapy ,RESEARCH ,RESEARCH funding ,EVIDENCE-based medicine ,PROFESSIONAL practice ,EVALUATION research ,TREATMENT effectiveness ,SEVERITY of illness index ,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
- 2018
- Full Text
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18. Children with cerebral palsy in Ghana: malnutrition, feeding challenges, and caregiver quality of life.
- Author
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Polack, Sarah, Zuurmond, Maria, Adams, Mel, O'banion, David, Baltussen, Marjolein, Asante, Sandra, Kerac, Marko, and Gladstone, Melissa
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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
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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19. Minor neurological dysfunction and associations with motor function, general cognitive abilities, and behaviour in children born extremely preterm.
- Author
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Broström, Lina, Vollmer, Brigitte, Bolk, Jenny, Eklöf, Eva, and Ådén, Ulrika
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NEUROLOGICAL disorders ,MOTOR ability ,PREMATURE infants ,CEREBRAL palsy ,COGNITIVE ability ,BEHAVIOR disorders in children ,CHILD development ,CHILD behavior ,COMPARATIVE studies ,DEVELOPMENTAL disabilities ,INTELLECT ,LONGITUDINAL method ,NEUROPSYCHOLOGICAL tests ,RESEARCH methodology ,MEDICAL cooperation ,PEOPLE with intellectual disabilities ,MOVEMENT disorders ,QUESTIONNAIRES ,RESEARCH ,EVALUATION research - 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
- Full Text
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20. Health-related quality of life and peer relationships in adolescents with developmental coordination disorder and attention-deficit-hyperactivity disorder.
- Author
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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
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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21. Evolution of self-care and functional mobility after single-event multilevel surgery in children and adolescents with spastic diplegic cerebral palsy.
- Author
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Dequeker, Griet, Van Campenhout, Anja, Feys, Hilde, and Molenaers, Guy
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CHILDREN with cerebral palsy ,DEVELOPMENTAL disabilities ,PEDIATRIC orthopedics ,MOVEMENT disorders in children ,QUALITY of life ,CEREBRAL palsy ,COMPARATIVE studies ,FUNCTIONAL assessment ,RESEARCH methodology ,MEDICAL cooperation ,NEUROSURGERY ,PROGNOSIS ,QUESTIONNAIRES ,RESEARCH ,HEALTH self-care ,SPASTICITY ,TIME ,EVALUATION research ,TREATMENT effectiveness ,RETROSPECTIVE studies - 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
- Full Text
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22. Parent-reported health-related quality of life of children with Down syndrome: a descriptive study.
- Author
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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
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
- Full Text
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23. Long-term behavioural outcomes after paediatric convulsive status epilepticus: a population-based cohort study.
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Martinos, Marina M., Pujar, Suresh, Gillberg, Christopher, Cortina‐Borja, Mario, Neville, Brian G. R., De Haan, Michelle, Scott, Rod C., Chin, Richard F. M., and Cortina-Borja, Mario
- Subjects
SEIZURES in children ,HEALTH outcome assessment ,DIAGNOSIS of autism in children ,BEHAVIORAL assessment of children ,PUBLIC health surveillance ,DIAGNOSIS of developmental disabilities ,PSYCHIATRIC diagnosis ,PSYCHIATRIC epidemiology ,COMPARATIVE studies ,DEVELOPMENTAL disabilities ,HEALTH planning ,LONGITUDINAL method ,MAGNETIC resonance imaging ,RESEARCH methodology ,MEDICAL cooperation ,PSYCHOLOGICAL tests ,QUESTIONNAIRES ,REGRESSION analysis ,RESEARCH ,RESEARCH funding ,EVALUATION research ,STATUS epilepticus - 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
- Full Text
- View/download PDF
24. Quality of life and comorbidities associated with Dravet syndrome severity: a multinational cohort survey.
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Lagae, Lieven, Brambilla, Isabella, Mingorance, Ana, Gibson, Eddie, and Battersby, Alysia
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QUALITY of life ,COMORBIDITY ,CHILDHOOD epilepsy ,SPASMS ,CHILD patients ,COMPARATIVE studies ,EPILEPSY ,LONGITUDINAL method ,RESEARCH methodology ,MEDICAL cooperation ,QUESTIONNAIRES ,RESEARCH ,EVALUATION research ,SEVERITY of illness index - 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
- Full Text
- View/download PDF
25. Self-care performance in children with cerebral palsy: a longitudinal study.
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Burgess, Andrea, Boyd, Roslyn N, Chatfield, Mark D, Ziviani, Jenny, and Sakzewski, Leanne
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CHILDREN with cerebral palsy ,PERFORMANCE in children ,COMPUTER adaptive testing ,LONGITUDINAL method ,MOTOR ability ,RESEARCH ,CHILD development ,RESEARCH methodology ,EVALUATION research ,MEDICAL cooperation ,COMPARATIVE studies ,RESEARCH funding ,QUESTIONNAIRES ,CEREBRAL palsy ,HEALTH self-care - Abstract
Aim: To investigate self-care developmental trajectories in children with cerebral palsy (CP) across all functional ability levels, according to Manual Ability Classification System (MACS) levels.Method: This was a prospective longitudinal population-based study of 71 children aged from 2 years 6 months to 12 years, with CP (47 [66%] males, 24 [34%] females). Pediatric Evaluation of Disability Inventory (PEDI) measures were taken at 2 years 6 months, 3, 4, and 5 years, and the PEDI - Computer Adaptive Test (PEDI-CAT) between 8 and 12 years. At 8 to 12 years, children were classified in MACS levels I (21; 30%), II (22; 31%), III (16; 23%), IV (6; 8%), and V (6; 8%). Longitudinal analysis of the PEDI Functional Skills Scale self-care and PEDI-CAT daily activities domains used the published linking equation, and multilevel mixed-effects regression modelling with interaction between age and MACS.Results: Between 5 and 12 years of age, children classified in MACS levels I to III continued to show progress in self-care development (PEDI-CAT scaled scores estimated change per year: I, 0.72; II, 0.49; III, 0.48). Children classified in MACS level IV showed an upward non-significant trend between 5 and 8 to 12 years (estimated change 0.42; 95% confidence interval [CI] -0.04 to 0.88). Children in MACS level V showed a decline in self-care (estimated change: -0.65; 95% CI -1.16 to -0.14).Interpretation: Self-care development attained by 8 to 12 years of age was related to the severity of manual ability impairment. Application of the linking equation from PEDI to PEDI-CAT is somewhat uncertain at the extreme lower end of the scale. Our study supports recommendations for items to be added to the PEDI-CAT to address floor effect. [ABSTRACT FROM AUTHOR]- Published
- 2020
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26. Deep brain stimulation reduces pain in children with dystonia, including in dyskinetic cerebral palsy.
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Perides, Sarah, Lin, Jean‐Pierre, Lee, Geraldine, Gimeno, Hortensia, Lumsden, Daniel E, Ashkan, Keyoumars, Selway, Richard, Kaminska, Margaret, and Lin, Jean-Pierre
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DEEP brain stimulation ,CEREBRAL palsy ,PAIN management ,DROOLING ,SUBTHALAMIC nucleus ,MOVEMENT disorders ,PAIN ,MUSCLE contraction ,RESEARCH ,PAIN measurement ,RESEARCH methodology ,DYSTONIA ,EVALUATION research ,MEDICAL cooperation ,TREATMENT effectiveness ,SEVERITY of illness index ,COMPARATIVE studies ,QUESTIONNAIRES ,RESEARCH funding ,DISEASE complications - Abstract
Aim: To establish the prevalence of dystonic pain in children and their response to deep brain stimulation (DBS).Method: Dystonic pain was assessed in a cohort of 140 children, 71 males and 69 females, median age 11 years 11 months (range 3y-19y 1mo), undergoing DBS in our centre over a period of 10 years. The cohort was divided into aetiological dystonia groups: 1a, inherited; 1b, heredodegenerative; 2, acquired; and 3, idiopathic. Motor responses were measured with the Burke-Fahn-Marsden Dystonia Rating Scale (BFMDRS).Results: Dystonic pain was identified in 63 (45%) patients, 38% of whom had a diagnosis of cerebral palsy (CP). Dystonic pain improved in 90% of children and in all aetiological subgroups 1 year after DBS, while the BFMDRS motor score improved in 70%. Statistically significant improvement (p<0.01) was noted for the whole cohort on the Numerical Pain Rating Scale (n=27), Paediatric Pain Profile (n=17), and Caregivers Priorities and Child Health Index of Life with Disabilities questionnaire (n=48). There was reduction of pain severity, frequency, and analgesia requirement. Findings were similar for the whole cohort and aetiological subgroups other than the inherited heredodegenerative group where the improvement did not reach statistical significance.Interpretation: Dystonic pain is frequent in children with dystonia, including those with CP, who undergo DBS; this can be an important, realizable goal of surgery irrespective of aetiology. We encourage the use of multimodal approach in pain research to reduce the risk of bias. [ABSTRACT FROM AUTHOR]- Published
- 2020
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27. Development and psychometric properties of the Hand-Use-at-Home questionnaire to assess amount of affected hand-use in children with unilateral paresis.
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Geerdink, Yvonne, Aarts, Pauline, Holst, Menno, Lindeboom, Robert, Van Der Burg, Jan, Steenbergen, Bert, and Geurts, Alexander C
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PARALYSIS ,PEOPLE with cerebral palsy ,MOVEMENT disorders in children ,CHILDREN with cerebral palsy ,WOUNDS & injuries ,BRACHIAL plexus ,TEST validity ,CEREBRAL dominance ,CEREBRAL palsy ,COMPARATIVE studies ,HAND ,HEMIPLEGIA ,RESEARCH methodology ,MEDICAL cooperation ,PARENTS ,PSYCHOMETRICS ,QUESTIONNAIRES ,RESEARCH ,ACTIVITIES of daily living ,EVALUATION research ,BRACHIAL plexus neuropathies ,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
- Full Text
- View/download PDF
28. Mirror therapy in children with hemiparesis: a randomized observer-blinded trial.
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Bruchez, Roselyn, Jequier Gygax, Marine, Roches, Sylvie, Fluss, Joel, Jacquier, David, Ballabeni, Pierluigi, Grunt, Sebastian, and Newman, Christopher J
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HEMIPARESIS ,RANDOMIZED response ,BLIND experiment ,ARM ,PERFORMANCE evaluation ,COMPARATIVE studies ,FUNCTIONAL assessment ,EXERCISE therapy ,FACTOR analysis ,ILLUSION (Philosophy) ,HEMIPLEGIA ,INTENTION ,LONGITUDINAL method ,RESEARCH methodology ,MEDICAL cooperation ,QUESTIONNAIRES ,RESEARCH ,EVALUATION research ,RANDOMIZED controlled trials ,TREATMENT effectiveness ,PSYCHOLOGY - Abstract
Aim: To determine the efficacy of mirror therapy in children with hemiparesis.Method: The design was an observer-blinded parallel-group randomized controlled trial (International Standard Randomised Controlled Trial Number 48748291). Randomization was computer-generated, 1:1 allocation to mirror therapy or comparison groups. The settings were home-based intervention and tertiary centre assessments. Participants were 90 children with hemiparesis aged 7 to 17 years. Intervention was 15 minutes per day of simultaneous arm training, 5 days a week, for 5 weeks. The mirror therapy group used a mirror; those in the comparison group looked at their paretic limb. Assessments comprised measures of upper limb strength, function (Melbourne Assessment 2), daily performance (ABILHAND-Kids), and sensory function at weeks 0 (T0 ), 5 (T1 ), and 10 (T2 ).Results: There were no significant differences in outcomes and their progression over time between the mirror therapy and comparison groups. Post-hoc intention-to-treat analyses showed significant improvements in both groups for grasp strength (T0 -T1 +12.6%), pinch strength (T0 -T2 +9.1%), upper limb function in terms of accuracy (T0 -T2 +2.7%) and fluency (T0 -T2 +5.0%), as well as daily performance (T0 -T2 +16.6%). Per protocol analyses showed additional improvements in dexterity (T0 -T2 +4.0%).Interpretation: The use of the mirror illusion during therapy had no significant effect on treatment outcomes. However, 5 weeks of daily simultaneous arm training significantly improved paretic upper limb strength, function, and daily use. [ABSTRACT FROM AUTHOR]- Published
- 2016
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29. Motor skills of children with unilateral visual impairment in the Infant Aphakia Treatment Study.
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Celano, Marianne, Hartmann, E Eugenie, DuBois, Lindreth G, and Drews‐Botsch, Carolyn
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MOTOR ability ,VISION disorders ,APHAKIA ,INFANTS ,MONOCULARS ,CHILD development ,COMPARATIVE studies ,DEPTH perception ,RESEARCH methodology ,MEDICAL cooperation ,QUESTIONNAIRES ,RESEARCH ,RESEARCH funding ,VISION ,VISUAL acuity ,EVALUATION research ,RANDOMIZED controlled trials ,DISEASE complications - Abstract
Aim: To assess motor functioning in children aged 4 years 6 months enrolled in the Infant Aphakia Treatment Study, and to determine contributions of visual acuity and stereopsis to measured motor skills.Method: One hundred and four children (53% female) with unilateral aphakia randomized to intraocular lens or contact lens treatment were evaluated at 4 years 6 months (age range 4y 6mo-4y 11mo) for monocular recognition visual acuity, motor skills, and stereopsis by a traveling examiner masked to treatment condition. Motor skills were assessed with the Movement Assessment Battery for Children--Second Edition (MABC-2). Visual acuity was operationalized as log10 of the minimum angle of resolution (logMAR) value for treated eye, best logMAR value for either eye, and intraocular logMAR difference.Results: Student's t-tests showed no significant differences in MABC-2 scores between the intraocular lens and contact lens groups. The mean total score was low (6.43; 18th centile) compared with the normative reference group. Motor functioning was not related to visual acuity in the treated eye or to intraocular logMAR difference, but was predicted in a regression model by the better visual acuity of either eye (usually the fellow eye), even after accounting for the influence of age at surgery, examiner, orthotropic ocular alignment, and stereopsis.Interpretation: Children with unilateral congenital cataract may have delayed motor functioning at 4 years 6 months, which may adversely affect their social and academic functioning. [ABSTRACT FROM AUTHOR]- Published
- 2016
- Full Text
- View/download PDF
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