A parent-administered sensorimotor intervention for oral feeding in infants born preterm: A randomized clinical study.

AIM: To evaluate the effect of a parent-administered sensorimotor intervention (PASI) program on developmental outcomes of infants born preterm during their stay in the neonatal intensive care unit (NICU). METHOD: A randomized clinical study was conducted with 94 infants (mean gestational age 31 weeks [SD 2.2 weeks]; 1658 g [SD 478 g]; 49 males, 45 females) initially enrolled and randomly assigned to an experimental or a control group. Infants in the experimental group received a PASI, consisting of tactile input to oral structures, trunk/limbs, and non-nutritive sucking for 15 minutes, once a day, for 10 days. Infants in the control group received standard care. Outcomes included attainment of complete oral feeds, occurrence of direct breastfeeding at hospital discharge, and motor function assessed using the Test of Infant Motor Performance (TIMP). RESULTS: A total of 80 infants completed the study. Infants in the experimental group achieved complete oral feeds sooner (11.9 [SD 4.3] vs 15.3 [SD 6.5] days, p = 0.013), and a greater number of them received direct breastfeeds (22 vs 12, p = 0.010) than controls. Infants in both groups had equivalent motor functions scores on the TIMP (46.9 [SD 4.8], 46.8 [SD 8.4], p = 0.961). INTERPRETATION: A PASI program may enhance an infant's oral feeding skills. These findings provide evidence to advocate for the institution of PASI in NICUs.

Creating synergies among education/research, practice, and policy environments to build capacity for the scholar role in occupational therapy and physiotherapy in the Canadian context.

Scholarly practice (SP) is considered a key competency of occupational therapy and physiotherapy. To date, the three sectors-education/research, practice, and policy/regulation-that support SP have been working relatively independently. The goals of this project were to (a) understand how representatives of the three sectors conceptualize SP; (b) define each sector's individual and collective roles in supporting SP; (c) identify factors influencing the enactment of SP and the specific needs of how best to support SP; and (d) co-develop goals and strategies to support SP across all sectors. We used interpretive description methodology. Consistent with an integrated knowledge translation approach, partners representing the three sectors across Canada recruited individuals from each sector, developed the content and questions for three focus groups, and collected and analyzed the data. Inspired by the Consolidated Framework for Implementation Research, we developed the questions for the second focus group. We analyzed the data using an inductive thematic analysis method. Thirty-nine participants from the three sectors participated. Themes related to participants' conceptualization of SP included (a) ongoing process, (b) reflective process, (c) broad concept, and (d) collective effort. Themes describing factors influencing and supporting SP were (a) recognition, (b) appropriate conceptualization, (c) social network, (d) accessibility to resources, and (e) forces outside of practitioners' effort. Goals to support SP included (a) further recognizing SP, (b) sustaining SP competency, and (c) ensuring access to information. SP requires collaborative and integrated intersectoral support and further recognition of its importance through the collaboration of multiple stakeholders.

International expert recommendations of clinical features to prompt referral for diagnostic assessment of cerebral palsy.

AIM: To establish international expert recommendations on clinical features to prompt referral for diagnostic assessment of cerebral palsy (CP). METHOD: An online Delphi survey was conducted with international experts in early identification and intervention for children with CP, to validate the results obtained in two previous consensus groups with Canadian content experts and knowledge users. We sent two rounds of questionnaires by e-mail. Participants rated their agreement using a 4-point Likert scale, along with optional open-ended questions for additional feedback. Additionally, a panel of experts and knowledge-users reviewed the results of each round and determined the content of subsequent surveys. RESULTS: Overall, there was high-level of agreement on: (1) six clinical features that should prompt referral for diagnosis; (2) two 'warning sign' features that warrant monitoring rather than immediate referral for diagnosis; and (3) five referral recommendations to other healthcare professionals to occur simultaneously with referral for diagnosis. INTERPRETATION: There was high agreement among international experts, suggesting that the features and referral recommendations proposed for primary care physicians for early detection of CP were broadly generalizable. These results will inform the content of educational tools to improve the early detection of CP in the primary care context. WHAT THIS PAPER ADDS: International experts provide strong agreement on clinical features to detect cerebral palsy. Consensus on clinical 'warning signs' to monitor over time. Referral recommendations from primary care to specialized health services are identified.

RECOMENDACIONES DE EXPERTOS INTERNACIONALES SOBRE CARACTERÍSTICAS CLÍNICAS PARA UNA DERIVACIÓN RÁPIDA PARA LA EVALUACIÓN DIAGNÓSTICA DE LA PARÁLISIS CEREBRAL: OBJETIVO: Establecer recomendaciones de expertos internacionales sobre características clínicas para iniciar derivación para la evaluación diagnóstica de la parálisis cerebral (PC). MÉTODO: Se realizó una encuesta online tipo Delphi con expertos en identificación e intervención temprana de niños con PC a fin de validar los resultados obtenidos en dos grupos de consenso realizados previamente en Canadá con expertos en contenidos y usuarios. Se enviaron dos rondas de cuestionarios por correo electrónico. Los participantes calificaron su acuerdo con un puntaje de 4 puntos en una escala Likert y con preguntas opcionales de respuesta abierta para comentarios adicionales. Además, un panel de expertos y usuarios revisaron los resultados de cada ronda y determinaron el contenido de las encuestas subsiguientes. RESULTADOS: En general, hubo un alto nivel de acuerdo sobre: ​​(1) seis características clínicas que requieren derivación rápida para el diagnóstico, (2) dos características de "señales de advertencia" que requieren monitoreo en lugar de referencia inmediata para el diagnóstico, y (3) cinco recomendaciones de referencia a otros profesionales de la salud que deben realizarse simultáneamente con la derivación para el diagnóstico. INTERPRETACIÓN: Hubo gran acuerdo entre los expertos internacionales, sugiriendo que las características y recomendaciones de referencia propuestas para los médicos de atención primaria para la detección de PC fue ampliamente generalizable. Estos resultados informarán el contenido de herramientas educativas para mejorar la detección precoz de PC en el contexto de atención primaria.

RECOMENDAÇÕES DE ESPECIALISTAS INTERNACIONAIS SOBRE ASPECTOS CLÍNICOS DISPARADORES DE ENCAMINHAMENTO PARA AVALIAÇÃO DIAGNÓSTICA EM PARALISIA CEREBRAL: OBJETIVO: Estabelecer recomendações de especialistas internacionais sobre os aspectos clínicos disparadores de encaminhamento para avaliação diagnóstica em paralisia cerebral (PC). MÉTODO: Um levantamento online internacional do tipo Delphi foi realizado com especialistas em identificação e intervenção precoce para crianças com PC, para validar os resultados obtidos em dois consensos prévios com especialistas no conteúdo e usuários canadenses. Enviamos duas rodadas de questionários por email. Os participantes pontuaram sua concordância usando uma escala Likert de 4 pontos, junto com questões abertas opcionais para informações adicionais. Além disso, um painel de especialistas e usuários revisaram os resultados de cada rodada, e determinaram o conteúdo das pesquisas subsequentes. RESULTADOS: Em geral, houve alto nível de concordância em: 1) seis aspectos clínicos que devem disparar encaminhamento para diagnóstico. 2) dois 'sinais de alerta' que merecem monitoramento mas não encaminhamento imediato para diagnóstico, e 3) cinco recomendações de encaminhamento para outros profissionais da saúde simultaneamente ao encaminhamento para diagnóstico. INTERPRETAÇÃO: Houve alta concordância entre especialistas internacionais, sugerindo que os aspectos e recomendações para encaminhamento propostos para médicos na atenção básica para a identificação precoce da PC foram amplamente generalizáveis. Estes resultados informarão o conteúdo de ferramentas educacionais para melhorar a detecção precoce de PC no contexto da atenção básica.

Participation among Children with Arthrogryposis Multiplex Congenita: A Scoping Review.

AIM: To explore what is currently known regarding participation among children and youth with arthrogryposis multiplex congenita (AMC) using empirical studies, gray literature, and YouTube videos. The secondary objectives included identifying activity types, outcome measures used, interventions provided, and barriers and facilitators to participation. METHOD: Empirical studies and gray literature were searched through electronic databases and videos were searched on YouTube. Articles and videos pertaining to participation and youth with AMC were included by two reviewers. Data regarding activity types, location, outcomes measures, interventions, and barriers and facilitators to participation was extracted. Data was critically appraised using specific evaluation criteria. RESULT: Eleven empirical studies, six gray literature articles and 71 videos met the inclusion criteria. The most common activity types reported in the empirical studies and YouTube videos were active-physical, social, and skill-based activities. Outcome measures included evaluations and questionnaires, none of which were designed to address participation. Interventions did not target participation although the environments could affect participation. CONCLUSION: The paucity of research indicates a need for future studies of participation in this population. Interventions should target participation and address environmental barriers. Videos provide insight for clinicians, youth, and families to help promote participation in the natural environment.

Use of consensus methods to determine the early clinical signs of cerebral palsy.

OBJECTIVES: To develop expert-informed content regarding the early motor attributes of cerebral palsy (CP) that should prompt physician referral for diagnostic assessment of CP, as well as concurrent referral recommendations. This content will be used in the creation of knowledge translation (KT) tools for primary care practitioners and parents. METHODS: Two nominal group processes were conducted with relevant stakeholders, representing Canadian 'content experts' and 'knowledge-users', using an integrated KT approach. RESULTS: Six attributes were identified that should prompt referral for diagnosis. If the child demonstrates: Early handedness <12 months; stiffness or tightness in the legs between 6 and 12 months; persistent fisting of the hands >4 months; persistent head-lag >4 months; inability to sit without support >9 months; any asymmetry in posture or movement. Five referral recommendations were agreed upon: Motor intervention specialist (physical therapy and/or occupational therapy) for ALL; speech-language pathology IF there is a communication delay; audiology IF there is parental or healthcare professional concern regarding a communication delay; functional vision specialist (e.g., optometrist or occupational therapist) IF there is a vision concern (e.g., not fixating, following, or tracking); feeding specialist (e.g., occupational therapist, speech-language pathologist) IF there are feeding difficulties (e.g., poor sucking, poor swallowing, choking, and/or not gaining weight). CONCLUSION: Rigorous consensus methods provided the initial evidence necessary to inform the content of tools to assist primary care providers in the early detection of CP. Results will be validated through a Delphi process with international experts, and user-friendly formats of this KT tool will be developed collaboratively with stakeholders.

The Role of Rehabilitation Specialists in Canadian NICUs: A 21st Century Perspective.

Rehabilitation specialists are an integral part of the team in the neonatal intensive care unit (NICU). New approaches to rehabilitation practice in the NICU have evolved over the past decade that aim to promote child health and development. AIMS: The aim of this study was to describe the current roles of the occupational therapist (OT), physical therapist (PT) and speech-language pathologist (SLP) in Canadian NICUs as compared to the roles documented in an earlier national survey conducted 15 years ago. METHODS: A telephone survey was conducted across Canadian NICUs and each telephone interview was recorded by a research assistant. In total, 42 questionnaires were completed across 25 health care institutions. RESULTS: Eighty percent of the PT, 93.7% of OT and 50% of SLP provided direct services to neonates in the NICU. The results demonstrated that the therapists were involved with case discussion (85.7%), decision-making (97.6%), referrals to other services (97.6%) and discharge planning (97.6%). Splinting (87.5%) and feeding (100%) were most often carried out by OT, whereas chest physiotherapy (65%) and range of motion (100%) were predominantly provided by PT. Changes in the role of rehabilitation specialists over the last decade predominantly included enhanced collaboration with the NICU team, more frequent use of standardized outcome measures and use of interventions supported by evidence. CONCLUSION: In comparison with results of the previous survey of rehabilitation practices in Canadian NICUs, rehabilitation specialists now have more dedicated time in the NICU and more frequently use standardized measures and apply interventions that are supported by recent scientific studies.

Current Rehabilitation Practices for Children with Cerebral Palsy: Focus and Gaps.

AIMS: To describe the focus of therapy practices in occupational and physical therapy for school-aged children with cerebral palsy, and better understand whether it is congruent with recommended practices. METHODS: A Canada-wide Web-based survey was completed by 62 occupational and 61 physical therapists to identify problems, assessments, and treatment interventions for two case-based scenarios. Data were coded using the International Classification of Functioning, Disability and Health (ICF) definitions for "body functions and structure," "activity and participation," and "environment." RESULTS: Physical therapists, in comparison to occupational therapists, were more likely to select interventions classed in the "body functions and structure" category (34-42% and 18-20%, respectively). Both professions focused on "activity and participation" (34-61%) when identifying problems, assessing, and intervening; attention, however, was mainly directed towards task-oriented activities such as activities of daily living and mobility. Participation in leisure or community-based activities received less attention (2-15%). The environment received limited attention for problems and assessments (4-25%), though it was an important focus of intervention (19-37%). CONCLUSIONS: While body functions and structure are well-addressed, other ICF elements, specifically participation, are poorly integrated into practice. The emerging focus on the environment in therapy intervention, by modifying the context rather than changing aspects of the child, is consistent with current approaches and evidence. Knowledge translation implementation initiatives are recommended to bridge identified gaps.

Self-regulation workshop and Occupational Performance Coaching with teachers: A pilot study.

BACKGROUND: Teachers' occupational role and performance can be undermined when working with students with disruptive classroom behaviours. PURPOSE: This pilot study aimed to explore the impact of school-based occupational therapy intervention on teachers' classroom management self-efficacy and perceived performance/satisfaction in their management of students with disruptive behaviours. METHOD: This pilot study used a multiple-case replication study design. A cohort of regular classroom elementary school teachers (n = 11) participated in a 1-day workshop on sensorimotor strategies for supporting student self-regulation followed by eight individual sessions of Occupational Performance Coaching (OPC). Measurement tools were the Canadian Occupational Performance Measure, Goal Attainment Scaling (GAS), and Teachers' Self-Efficacy Scale-Classroom Management. FINDINGS: Improvement in teachers' perception of performance, satisfaction, and classroom management was seen. GAS showed clinically significant improvement. Improvements were sustained at 7 weeks follow-up. IMPLICATIONS: Preliminary results support the use of sensorimotor education combined with OPC to enable teachers' occupational performance.

Pediatric Performance-Based Outcome Measures for Upper Extremity Function: A Scoping Review and Linking to the International Classification of Functioning, Disability, and Health.

Background. Performance-based outcome measures (PBOMs) are objective measures that assess physical capacity or performance in specific tasks or movements. Purpose. 1) to identify which PBOMs are most frequently reported to evaluate upper extremity (UE) function in pediatric rehabilitation 2) to determine the link between constructs of the ICF and meaningful concepts extracted from each identified PBOM. Methods. Pediatric UE PBOMs were searched in four databases. The selection of outcome measures included an initial title and abstract screening, followed by full-text review of the articles to be included based on identified selection criteria. Two reviewers were appointed to link the meaningful concepts identified in the outcome measures independently and a third reviewer was consulted in case of ambiguity to make a final decision. Findings. After the initial screening, 1786 full-text articles were reviewed, 1191 met the inclusion criteria, in which 77 outcome measures were identified and 32 were included in the linking process. From the included 32 outcome measures, 538 items were extracted and linked to the ICF. The most commonly cited measures included Assisting Hand Assessment, Jebsen-Taylor Hand Function Test, Melbourne Assessment of Unilateral Upper Limb. The Activity and Participation domain represented 364 codes followed by the Body Functions domain domain which represented 174 codes. Implications. A majority of the outcome measures identified were linked with the Mobility, Fine Hand Use of the ICF. Therefore, when selecting a PBOM, careful considerations need to be made regarding which concept of health is to be assessed.

Assessments used to diagnose developmental coordination disorder: do their underlying constructs match the diagnostic criteria?

This study examined the constructs underlying the Movement Assessment Battery for Children-2 (M-ABC-2), Bruninks-Oseretsky Test of Motor Proficiency (BOTMP) and Vineland Adaptive Behavior Scale-2 (VABS-2) using the framework of the International Classification of Functioning Disability and Health-Child Youth version (ICF-CY) and the diagnostic criteria of developmental coordination disorder (DCD). Two independent raters coded and matched items to ICF-CY codes as per the eight ICF linking rules developed by Cierza and colleagues. Content density and inter-rater reliability were also calculated. The majority of codes assigned to the M-ABC-2 and BOTMP related to body functions (54% and 64% respectively). For the VABS-2, 91% of codes pertained to activities and participation. The M-ABC-2, BOTMP, and the VABS-2 emphasize the ICF-CY constructs differently. The VABS-2 may be useful in the evaluation of performance of daily life activities and participation in children with DCD.

A Portrait of the Rights of Children with Disabilities in Nigeria: A Policy Review.

Worldwide, 200 million children experience disability, with the vast majority living in low- and middle-income countries. The United Nations Convention on the Rights of the Child (CRC) places great importance on the rights of all children for the opportunities for survival, growth, health, and development. A subsequent document, the UN Convention on the Rights of Persons with Disabilities (CRPD), identifies children with disabilities as rights bearers who should be considered in all policies and programming worldwide. Nigeria, in 1991 and 2010, ratified the CRC and the CRPD, respectively. Nonetheless, knowledge of the extent to which their disability and child-directed policies considers these two key conventions, in ensuring that children and children with disabilities have access to care within their right remains limited. This study examined the extent to which Nigeria's current disability and childhood policies have integrated the two child and disability related conventions from the UN. Using a structured search of databases and Nigerian federal and state government websites, we conducted a policy review to identify their disability and child-related disability policies. We also included the CRC and CRPD reports submitted by the Nigerian government to the United Nations Office of the High Commissioner for Human Rights (OHCHR) (2008 and 2010 cyclical year). A thematic analysis, based on the CRC and CRPD report, identified the following six themes: participation, support systems, awareness raising, factors associated with adherence to the CRC, laws and rights, and services. The review showed that the available Nigerian disability policies were federal, with some state policies which aligned with the CRC and CRPD. Also identified was the lack of disability policies specific to children and their families. We concluded that, to ensure proper inclusion of the rights of all children, including those with disabilities, in Nigeria there is a need for a more optimal uptake of recommendations of the CRC and CRPD as laid out by the UN.

Stakeholder engagement in the development of an upper extremity outcome measure for children with rare musculoskeletal conditions.

BACKGROUND: Upper extremity (UE) involvement is prevalent in 73% of individuals with arthrogryposis multiplex congenita (AMC), yet no AMC-specific outcome measure exists. When developing a measure specific to a population with a rare musculoskeletal condition, clinicians' and patients' perspectives and involvement is a crucial and necessary step. This study sought to determine the most clinically useful items for an outcome measure of UE function for children with AMC as defined by caregivers and clinicians. METHODS: To ensure the perspectives and needs of caregivers of children with AMC and clinicians were considered in the development of the UE measure for AMC, a Nominal Group technique (NGT) with caregivers of children with AMC (phase 1) followed by a three-round survey with clinicians (phase 2) were carried out. RESULTS: Phase 1: Eleven individuals participated in the nominal group technique and identified 32 items. The most important items were Picking up an object (n = 11), Eating (n = 10), Reaching mouth (n = 10), Getting out of bed (n = 10). Phase 2: Invitations to participate to an online survey was sent to 47 experts in the field of AMC, 20 participants completed round 1, 15 completed round 2 and 13 completed round 3. Throughout the survey, participants were asked about movement required to screen the UE, essential domains to be included in the measure, establishing a scoring guide and identifying tasks associated with joint motion and position. CONCLUSION: A preliminary version of an UE AMC-specific outcome measure was developed with the help of caregivers' perspectives and expert opinions.

Arthrogryposis multiplex congenita (AMC) is a rare musculoskeletal condition affects the joints and muscles of the body. In about 70% of the cases, it affects the upper extremities (UE). However, there is no specific outcome measure for UE function in children with AMC. An outcome measure refers to a tool or method used to assess and measure the results or effects of a particular treatment, intervention, or condition. It helps healthcare professionals and researchers understand the impact or outcome of a specific situation, such as the level of improvement or changes in a person's health or function. The goal of this study was to develop such a measure while accounting for the perspectives of youth with AMC, their caregivers and clinicians. To achieve this, a study was conducted in two phases. In the first phase, a Nominal Group technique (NGT) was used to gather input from caregivers of children with AMC. Eleven individuals participated and identified 32 items, with the most important being picking up an object, eating, reaching the mouth, and getting out of bed. In the second phase, a three-round survey was sent to 47 experts in the field of AMC, with 20 participants completing the first round, 15 completing the second round, and 13 completing the third round. The survey asked participants about screening UE movement, essential domains to include in the measure, establishing a scoring guide, and identifying tasks associated with joint motion and position. With the help of caregivers' perspectives and expert opinions, a preliminary version of an UE AMC-specific outcome measure was developed. This measure will be useful in assessing the UE function in children with AMC and will aid clinicians in developing appropriate treatment plans for this rare condition.

Evidence-based practice behaviours: a comparison amongst occupational therapy students and clinicians.

BACKGROUND: Occupational therapy graduates are expected to demonstrate entry-level competencies in evidence-based practice. To support students during the course of professional education in developing the knowledge, skills, and attitudes for integrating scientific findings into clinical practice, educators must identify the process by which these competencies are developed. PURPOSE: To identify the differences in evidence-based practice decisions amongst occupational therapy students and experienced clinicians. METHODS: Using a vignette depicting an older client with a history of falls, participants' evidence-based practice decisions were compared to a reference model. RESULTS: In the initial steps of the process, knowledge of evidence-based practice concepts appeared to be dependent upon formal instruction, whereas expert-like behaviours in the integration of evidence for decision-making seemed to be a function of clinical experience. IMPLICATIONS: Academic and clinical educators can use identified gaps in knowledge and synthesis of concepts to update the evidence-based practice content in occupational therapy curricula and fieldwork.

Predictive validity of Prechtl's Method on the Qualitative Assessment of General Movements: a systematic review of the evidence.

AIM: The aim of this systematic review was to examine the evidence for the predictive validity of Prechtl's Method on the Qualitative Assessment of General Movements (GMsA) with respect to neurodevelopmental outcomes. METHOD: Six electronic databases (PsychINFO, Embase, Health and Psychosocial Instruments, PubMed, and AMED) were searched using the following keywords to identify all studies that examined the predictive validity of the GMsA: 'general movements', 'assessment', 'movement', 'child development', 'infant', and 'predictive value of test'. Only English- and French-language studies were included, whereas studies that focused on spontaneous mobility in preterm infants, but not necessarily the GMsA, or which did not report on the predictive value of the GMsA were excluded. A total of 39 studies were included in the final analysis. RESULTS: Studies were separated according to the age at follow-up: 12 to 23 months, 2 to 3, 4 to 11, and 12 to 18 years. All used a longitudinal cohort study design; however, the outcome measures differed greatly amongst the studies. Values for sensitivity, specificity, positive predictive value, and negative predictive value varied amongst studies. The overall trend indicated that the presence of abnormalities in the quality of fidgety movements at 12 weeks adjusted age is more predictive of adverse outcomes than abnormal writhing movements. INTERPRETATION: The GMsA demonstrates potential as a cost-effective, non-intrusive means of infant examination. However, current studies include important sources of bias. Future methodologically rigorous studies with functional outcomes are suggested.

Feeding interventions for children with cerebral palsy: a review of the evidence.

AIM: To examine the evidence of the effectiveness of different feeding interventions for children with cerebral palsy. METHODS: A search of 12 electronic databases identified all relevant studies. For each study, the quality of the methods was assessed according to the study design. A total of 33 articles were retrieved, and 21 studies were included in the final analysis. RESULTS: Feeding interventions were separated into five main categories: oral sensorimotor facilitation, food consistency, positioning, oral appliances, and adaptive equipment. Five studies were randomized controlled trials. Outcomes were mainly reported on feeding safety and efficiency. One study documented positive results in height and weight change. Nineteen of the 21 studies presented positive outcomes in eating efficiency and/or safety. INTERPRETATION: Feeding interventions demonstrate potential benefits for children with cerebral palsy. However, the current level of evidence is poor, and empirical data are lacking. Methodologically, rigorous studies are required particularly investigating multimodal approaches.

Clinical decision making regarding intervention needs of infants with torticollis.

PURPOSE: Although conservative care is the standard intervention for infants with torticollis, the variation in intervention content and format proposed in the literature reflects the lack of clear understanding of this population's needs. The objective was to identify factors assessed by pediatricians and physical therapists influencing the determination of intervention needs for infants with torticollis. METHODS: Focus groups and surveys were used to generate a list of factors influencing determination of intervention needs. These factors were mapped to the International Classification of Functioning, Disability and Health-Children and Youth (ICF-CY). RESULTS: Health care professionals report that all infants presenting with torticollis require intervention. They determine needs according to factors encompassing all ICF-CY domains. An important subset of factors relates to family and environment. CONCLUSION: Health care professionals should rely on a family-centered assessment encompassing all domains of the ICF-CY to adequately identify intervention needs of infants with torticollis.

Rehabilitation needs of youth with arthrogryposis multiplex congenita: Perspectives from key stakeholders.

Background: Arthrogryposis multiplex congenita is a term used to describe congenital contractures in at least two body parts with an overall prevalence of 1 in 3000 live births. It is often caused by lack of fetal movement in utero and presents as contractures of varying severity, which may affect the upper and lower extremities, the spine and jaw. Currently, no practice recommendations exist to inform best clinical practice for arthrogryposis multiplex congenita.Purpose: To identify the needs surrounding rehabilitation as experienced by youth with arthrogryposis multiplex congenita, caregivers, and clinicians and to propose solutions to develop family- and client-centred rehabilitation recommendations.Materials and methods: A modified experience-based co-design methodology was used where qualitative interviews were conducted with key stakeholders.Results: Twenty-seven participants completed the interviews and demographic information was collected where early-active rehabilitation began at birth in most cases and became less frequent through adolescence. Three overarching themes were determined for each stakeholder group.Conclusions: All participants reported that early-active rehabilitation is beneficial as it helps determine future treatments. Transition times and participation need to be at the center of interventions to ensure that the needs of youth with arthrogryposis multiplex congenita are being met. The development a condition-specific outcome-measure and rehabilitation practice recommendations will assist clinicians in addressing the needs of youth with arthrogryposis multiplex congenita.Implications for rehabilitationArthrogryposis multiplex congenita presents in at least two different areas of the body as multiple congenital contractures of varying severity which may affect the upper and lower extremities, spine and jaw.Youth with arthrogryposis multiplex congenita identified participation as an essential component of their life, however caregivers and clinicians did not emphasize this need.Gathering information from different stakeholders is important to ensure varying needs are addressed.Rehabilitation was reported to be beneficial from early childhood to late adolescence by youth, caregivers, and clinicians.Frequency of rehabilitation diminished over time, emphasizing the need for continued follow-up into adolescence.

Prediction of motor and functional outcomes in infants born preterm assessed at term.

PURPOSE: To compare 3 different assessment approaches at term to infants born preterm to predict motor and functional outcomes at 12 months adjusted age. METHODS: Infants (n = 100) born at less than 32 weeks postconceptional age were assessed at term using the General Movements Assessment, Einstein Neonatal Neurobehavioral Assessment Scales, Test of Infant Motor Performance, and at 12 months adjusted age using the Alberta Infant Motor Scales, Peabody Developmental Motor Scales-2, Vineland Adaptive Behavior Scales-Daily Living Skills, and Battelle Developmental Inventory. RESULTS: The General Movements Assessment (r2 = 0.04; p = 0.05) and the Test of Infant Motor Performance (r2 = 0.05; p = 0.04) predicted outcomes on the Peabody Developmental Motor Scales-2. The Test of Infant Motor Performance predicted outcomes on the Alberta Infant Motor Scales (r2 = 0.05; p = 0.04) and Vineland Adaptive Behavior Scales-Daily Living Skills (odds ratio: 0.93). Delays in functional performance were found. CONCLUSIONS: Neonatal tests at term explained a small but significant proportion of the variance in gross motor and daily living skills at 12 months adjusted age.

Handwriting performance in children with attention deficit hyperactivity disorder (ADHD).

Attention deficit hyperactivity disorder (ADHD) is the most common neurobehavioral condition of childhood. Consequences are multifaceted and include activity limitations in daily-living skills, academic challenges, diminished socialization skills, and motor difficulties. Poor handwriting performance is an example of an affected life skill that has been anecdotally observed by educators and clinicians for this population and can negatively impact academic performance and self-esteem. To guide health and educational service delivery needs, the authors reviewed the evidence in the literature on handwriting difficulties in children with ADHD. Existing evidence would suggest that children with ADHD have impaired handwriting performance, characterized by illegible written material and/or inappropriate speed of execution compared to children without ADHD. Studies with larger sample sizes using standardized measures of handwriting performance are needed to evaluate the prevalence of the problem and to better understand the nature of handwriting difficulties and their impact in this population.

A comparison of the general movements assessment with traditional approaches to newborn and infant assessment: concurrent validity.

BACKGROUND: Assessment of the quality of general movements (GMs) is an early clinical marker for prediction of cerebral palsy. AIMS: To explore how the General Movements Assessment (GMsA) relates to traditional newborn and infant measures currently in use. STUDY DESIGN: A prospective cohort design was used to examine concurrent validity of the GMsA in Neonatal Intensive Care (NICU) survivors (n=100) at three age points: preterm (34 weeks gestational age GA), term (38-40 weeks GA), and post term (12 weeks adjusted age [AA]) with traditional assessments (see below). Correlation analysis was used to determine the strength of the associations between tests at each age point. SUBJECTS: Preterm infants born at