Ana Lucia Yaeko da Silva Santos, Flaviana Kelly de Lima Maciel, Francis Meire Fávero, Luis Fernando Grossklauss, Cristina Dos Santos Cardoso de Sá
{"title":"Trunk Control and Upper Limb Function of Walking and Non-walking Duchenne Muscular Dystrophy Individuals.","authors":"Ana Lucia Yaeko da Silva Santos, Flaviana Kelly de Lima Maciel, Francis Meire Fávero, Luis Fernando Grossklauss, Cristina Dos Santos Cardoso de Sá","doi":"10.1080/17518423.2020.1869337","DOIUrl":"https://doi.org/10.1080/17518423.2020.1869337","url":null,"abstract":"<p><p><b>Aim</b>: To verify and compare trunk control and upper limb functionality (ULs) in walking and non-walking DMD individuals, with that of individuals without dystrophinopathies.<b>Method</b>: Cross-sectional study, with children without dystrophinopathy (healthy control group) and in walking and non-walking DMD children evaluated by the following scales: Segmental Control Evaluation Trunk (SATCo); Performance of Upper Limb (PUL) and Jebsen-Taylor Test (JTT).<b>Results</b>: There was a difference between the groups in trunk control and ULs function by the PUL scale, but there was no difference between walking and the reference group in all JTT subtests; The JTT writing subtest was not different between groups. There was a strong correlation between PUL and SATCo, both had a strong correlation with disease staging and a weak correlation with JTT.<b>Conclusions</b>: There is relevance to the evaluation of trunk control and ULs function of walking and non-walking DMD.</p>","PeriodicalId":51227,"journal":{"name":"Developmental Neurorehabilitation","volume":"24 7","pages":"435-441"},"PeriodicalIF":1.3,"publicationDate":"2021-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1080/17518423.2020.1869337","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"39141519","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Vivienne Travlos, Shane Patman, Jenny Downs, Dana Hince, Andrew C Wilson
{"title":"Parent Carer Quality of Life and Night-Time Attendance in Non-Ambulant Youth with Neuromuscular Disorders.","authors":"Vivienne Travlos, Shane Patman, Jenny Downs, Dana Hince, Andrew C Wilson","doi":"10.1080/17518423.2021.1908440","DOIUrl":"https://doi.org/10.1080/17518423.2021.1908440","url":null,"abstract":"<p><p><b>Purpose</b>: To describe and explore carer quality of life (QoL) and night-time attendance to their child in parents of non-ambulant youth with Neuromuscular Disorders.<b>Methods:</b> A cross-sectional population-based, comprehensive survey including the Adult Carer QoL (AC-QoL) questionnaire, measures of social context and youths' physical status. Associations between carer-QoL or frequency of parents' night-time attendance with independent variables were explored using linear and logistic regression models, respectively.<b>Results:</b> Parents' perceived lower carer-QoL (mean 76.5/120, SD 18.5) when they attended to their child twice a night or more (n = 17/35) and with shorter time since their child was prescribed noninvasive ventilation (NIV). Parental night-time attendance was not associated with youth's actual use of NIV, but was more likely when youth required assistance to turn in bed, reported frequent sleep discomfort and had more severe joint contractures.<b>Conclusions:</b> To optimize parent carer-QoL, interventions must address parents' frequency of night-time attendance and youths' sleep comfort.</p>","PeriodicalId":51227,"journal":{"name":"Developmental Neurorehabilitation","volume":"24 7","pages":"456-465"},"PeriodicalIF":1.3,"publicationDate":"2021-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1080/17518423.2021.1908440","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"38879536","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Hilary E Miller, Kirrie J Ballard, Jenna Campbell, Madison Smith, Amy S Plante, Semra A Aytur, Donald A Robin
{"title":"Improvements in Speech of Children with Apraxia: The Efficacy of Treatment for Establishing Motor Program Organization (TEMPO<sup>SM</sup>).","authors":"Hilary E Miller, Kirrie J Ballard, Jenna Campbell, Madison Smith, Amy S Plante, Semra A Aytur, Donald A Robin","doi":"10.1080/17518423.2021.1916113","DOIUrl":"https://doi.org/10.1080/17518423.2021.1916113","url":null,"abstract":"<p><p><b>Purpose</b>: This study investigated the efficacy of Treatment for Establishing Motor Program Organization (TEMPO<sup>SM</sup>) in childhood apraxia of speech (CAS).<b>Method:</b> A mixed between- and within-participant design with multiple baselines across participants and behaviors was used to examine acquisition, generalization, and maintenance of skills. TEMPO<sup>SM</sup> was administered in four one-hour sessions a week over a four-week period for eleven participants (ages 5 to 8), allocated to either an immediate treatment group or a wait-list control group. Acoustic and perceptual variables were measured at baseline, immediate post-treatment, and one-month post-treatment.<b>Results:</b> Children demonstrated significant improvements in specific acoustic measures of segmentation and lexical stress, as well as perceptual measures of fluency, lexical stress, and speech-sound accuracy. Treatment and generalization effects were maintained one-month post-treatment with generalization to untreated stimuli.<b>Conclusion:</b> TEMPO<sup>SM</sup> was efficacious in improving segmental and suprasegmental impairments in the speech of children with CAS.</p>","PeriodicalId":51227,"journal":{"name":"Developmental Neurorehabilitation","volume":"24 7","pages":"494-509"},"PeriodicalIF":1.3,"publicationDate":"2021-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1080/17518423.2021.1916113","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"39167800","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Could Lumbar Lordosis Angle Be A Predictor of Functionality in Children with Spina Bifida? A Cross-Section Study.","authors":"Osman Karaca, Muhammed Kılınç","doi":"10.1080/17518423.2020.1869853","DOIUrl":"https://doi.org/10.1080/17518423.2020.1869853","url":null,"abstract":"<p><p><b>Aims</b>: This study aimed to investigate the relationship between lumbar lordosis angle (LLA) and trunk functions, sitting balance, functional independence, and lesion level in children with spina bifida (SB).<b>Methods</b>: Thirty children with SB were included. LLA was measured with a flexible ruler. The Pediatric Functional Reach Test (PRT), Trunk Impairment Scale (TIS), Functional Independence Measure for Children (WeeFIM), and International Myelodysplasia Study Group Criteria were used to evaluate sitting balance, trunk functions, functional independence, and motor lesion level respectively. The correlations were performed by using Spearman's correlation test.<b>Results</b>: There were significant correlations between the LLA and PRT, TIS, and WeeFIM results. Also, a significant correlation was found between the LLA and lesion level (<i>p</i> < .05).<b>Conclusions</b>: The development of the LLA in the normal range should be supported in rehabilitation approaches aiming to increase sitting balance, functional independence, and trunk functions in children with SB.<b>Abbreviations</b>: SB: Spina Bifida; LLA: Lumbar Lordosis Angle; MMS: Meningomyelocele; WeeFIM: Functional Independence Measure for Children; TIS: Trunk Impairment Scale; PRT: Pediatric Functional Reach Test.</p>","PeriodicalId":51227,"journal":{"name":"Developmental Neurorehabilitation","volume":"24 7","pages":"442-447"},"PeriodicalIF":1.3,"publicationDate":"2021-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1080/17518423.2020.1869853","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"39109668","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Sonia Khurana, Megan E Evans, Claire E Kelly, Deanne K Thompson, Jennifer C Burnsed, Amy D Harper, Karen D Hendricks-Muñoz, Mary S Shall, Richard D Stevenson, Ketaki Inamdar, Gregory Vorona, Stacey C Dusing
{"title":"Longitudinal Changes in the Sensorimotor Pathways of Very Preterm Infants During the First Year of Life With and Without Intervention: A Pilot Study.","authors":"Sonia Khurana, Megan E Evans, Claire E Kelly, Deanne K Thompson, Jennifer C Burnsed, Amy D Harper, Karen D Hendricks-Muñoz, Mary S Shall, Richard D Stevenson, Ketaki Inamdar, Gregory Vorona, Stacey C Dusing","doi":"10.1080/17518423.2021.1903602","DOIUrl":"https://doi.org/10.1080/17518423.2021.1903602","url":null,"abstract":"<p><p><b>Objective</b>: Evaluate longitudinal changes in brain microstructure and volumes in very preterm infants during the first year of life with and without intervention.<b>Design</b>: Descriptive pilot study.<b>Methods</b>: Five preterm infants in a three-arm clinical trial, one SPEEDI Early, two SPEEDI Late, and two usual care. Brain structural and diffusion MRI's were acquired within 72 hours after neonatal intensive care unit discharge (n = 5), three months post-baseline (n = 5), and six months post-baseline (n = 3). Fractional anisotropy (FA), Mean diffusivity (MD), and volume metrics were computed for five brain regions.<b>Results</b>: More than 60% of eligible participants completed 100% of the scheduled MRIs. FA and volume increased from baseline to six months across all brain regions. Rate of white matter volume change from baseline to six months was highest in SPEEDI Early.<b>Conclusions</b>: Non-sedated longitudinal MRI is feasible in very preterm infants and appears to demonstrate longitudinal changes in brain structure and connectivity.</p>","PeriodicalId":51227,"journal":{"name":"Developmental Neurorehabilitation","volume":"24 7","pages":"448-455"},"PeriodicalIF":1.3,"publicationDate":"2021-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1080/17518423.2021.1903602","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"39099414","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Séverine Estival, Virginie Laurier, Fabien Mourre, Virginie Postal
{"title":"Improvement of Planning Abilities in Adults with Prader-Willi Syndrome: A Randomized Controlled Trial.","authors":"Séverine Estival, Virginie Laurier, Fabien Mourre, Virginie Postal","doi":"10.1080/17518423.2021.1915405","DOIUrl":"https://doi.org/10.1080/17518423.2021.1915405","url":null,"abstract":"<p><p>Prader-Willi Syndrome (PWS) is a neurodevelopmental genetic disorder with executive deficits. Planning is one of the impaired executive functions implied in the regulation of behavior and everyday actions. We aimed to explore the feasibility and the effectiveness of a metacognitive strategy training designed to improve planning in adults with PWS using a double-blind between-group (training versus usual care) randomized controlled trial, with computerized tests and paper-pencil ecological outcome measures targeting planning, other executive functions, and achievement of personalized goal. Results showed better performances in several executive tasks and in achievement of personalized goals after both interventions, but better improvement for the experimental group (n = 27) compared to control (n = 26) only on the task assessing planning abilities. Interviews with occupational therapists demonstrated the feasibility of this training with this population. Despite a small number of sessions, the metacognitive strategy training showed encouraging results on planning abilities of patients.</p>","PeriodicalId":51227,"journal":{"name":"Developmental Neurorehabilitation","volume":"24 7","pages":"478-493"},"PeriodicalIF":1.3,"publicationDate":"2021-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1080/17518423.2021.1915405","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"39118800","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Shiyao Gao, Anthony Fabio, Bedda L Rosario, M Kathleen Kelly, Sue R Beers, Michael J Bell, Stephen R Wisniewski
{"title":"Characteristics Associated with the Use of an Inpatient Rehabilitation or Skilled Nursing Facility after Acute Care in Children with Severe Traumatic Brain Injury.","authors":"Shiyao Gao, Anthony Fabio, Bedda L Rosario, M Kathleen Kelly, Sue R Beers, Michael J Bell, Stephen R Wisniewski","doi":"10.1080/17518423.2021.1908441","DOIUrl":"https://doi.org/10.1080/17518423.2021.1908441","url":null,"abstract":"<p><p>To characterize inpatient rehabilitation services for children with severe traumatic brain injury (TBI), we included 254 children, whose parents/guardians reported receipt of rehabilitation within a 12-month follow-up period, from a multinational observational study. Children discharged to an inpatient rehabilitation or skilled nursing facility after acute care were classified into the \"inpatient rehabilitation\" group, and children discharged home after acute care were classified into the \"non-inpatient rehabilitation\" group. Multivariable regression analyses determined the associations of sociodemographic and clinical characteristics with rehabilitation groups. Children receiving inpatient rehabilitation had a shorter length of acute hospitalization. Children from the UK were less likely to receive inpatient rehabilitation compared to children from the US. Future studies are warranted to extend current findings by identifying the reasons behind differential access to inpatient rehabilitation among children with severe TBI.</p>","PeriodicalId":51227,"journal":{"name":"Developmental Neurorehabilitation","volume":"24 7","pages":"466-477"},"PeriodicalIF":1.3,"publicationDate":"2021-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1080/17518423.2021.1908441","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"38808812","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"A Pilot Study Delivering Physiotherapy Support for Rett Syndrome Using a Telehealth Framework Suitable for COVID-19 Lockdown.","authors":"Meir Lotan, Jenny Downs, Cochavit Elefant","doi":"10.1080/17518423.2021.1914762","DOIUrl":"https://doi.org/10.1080/17518423.2021.1914762","url":null,"abstract":"<p><p><b>Background</b>: Rett syndrome (RTT) is a genetically caused neurodevelopmental disorder associated with severe disability. We assessed the feasibility of a telehealth program supporting gross motor skills in RTT.<b>Methods</b>: Five girls with RTT were assessed and a home-based exercise program developed in response to functional goals. Families then participated in monthly Skype sessions for 6 months, guided by a physiotherapist to monitor progress and adjust the program as necessary. Goal Attainment Scaling was used to evaluate progress and a parental satisfaction questionnaire was administered.<b>Results</b>: Four goals were established for each participant and progress was greater than would be expected in 16 of 20 goals. Parents evaluated the program as feasible and useful for their daughters.<b>Discussion</b>: A telehealth model of home-based intervention supported individuals with RTT to achieve gross motor skills and was found to be feasible. This model is important at present times during COVID-19 outbreak and lockdown.</p>","PeriodicalId":51227,"journal":{"name":"Developmental Neurorehabilitation","volume":"24 6","pages":"429-434"},"PeriodicalIF":1.3,"publicationDate":"2021-08-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1080/17518423.2021.1914762","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"25588800","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Maia Thornton, Diana Harcourt, Toity Deave, James Kiff, Heidi Williamson
{"title":"\"Have We Done Enough?\" A Cross-condition Exploration of the Experiences of Parents Caring for A Child with an Appearance-affecting Condition or Injury.","authors":"Maia Thornton, Diana Harcourt, Toity Deave, James Kiff, Heidi Williamson","doi":"10.1080/17518423.2021.1901150","DOIUrl":"https://doi.org/10.1080/17518423.2021.1901150","url":null,"abstract":"<p><p>Children and young people (CYP) with appearance-affecting conditions/injuries report common pervasive psychosocial difficulties, regardless of cause, nature or extent of their visible differences. Parents or carers can also experience psychosocial difficulties and challenges specific to having CYP with a visible difference. Current literature is confined to exploring condition-specific concerns of parents, typically in more prevalent appearance-affecting conditions/injuries, whilst the experiences of parents of CYP with other visible differences are unknown. Thirty-one interviews (parents n = 20, health and support professionals n = 11) and 4 parent focus groups (n = 25) were conducted. Three overarching themes were constructed: \"Appearance does(n't) matter\" describes the impact of having a child with a socially undesirable appearance; \"Being 'battle' ready\" reflects parents' desire to arm their child with resources to manage challenges, whilst \"Walking the tightrope\" reflects parents' lack of clarity about how best to approach this. Findings highlight shared and common cross-condition psychosocial difficulties among parents and carers.</p>","PeriodicalId":51227,"journal":{"name":"Developmental Neurorehabilitation","volume":"24 6","pages":"418-428"},"PeriodicalIF":1.3,"publicationDate":"2021-08-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1080/17518423.2021.1901150","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"25608263","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Understanding the Five-Year Outcomes of Abusive Head Trauma in Children: A Retrospective Cohort Study.","authors":"Jaimi Manfield, Karen Oakley, Julie-Anne Macey, Mary-Clare Waugh","doi":"10.1080/17518423.2020.1869340","DOIUrl":"https://doi.org/10.1080/17518423.2020.1869340","url":null,"abstract":"<p><p>Understanding the long-term medical and developmental outcomes for children who survive abusive head trauma (AHT) is important to ensure necessary supports and services are available. This study examined the retrospective global and specific medical and developmental outcomes of 55 children with AHT who were treated at The Children's Hospital at Westmead. Global outcomes were assessed using the Kings Outcome Scale of Childhood Head Injury (KOSCHI). Five years post-injury, one child had died and two had made a complete recovery. Forty-five children (81.8%) had a moderate or severe disability, an increase from 64.5% at acute discharge. At follow-up, the main impairments were behavioral problems (53%), vision impairment (44%), fine motor difficulties (26%), gross motor problems (26%), communication problems (24%) and 16% had seizures. A Spearman's Rank correlation revealed that only 41% of variance in KOSCHI scores five years post-injury could be accounted for KOSCHI scores at the time of acute discharge (rs(55) = 0.638, <i>p</i> < .001), and many children's presentation was worse at follow-up. Therefore, all children presenting with AHT need long term follow up regardless of early indications of good recovery.</p>","PeriodicalId":51227,"journal":{"name":"Developmental Neurorehabilitation","volume":"24 6","pages":"361-367"},"PeriodicalIF":1.3,"publicationDate":"2021-08-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1080/17518423.2020.1869340","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"38849975","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}