Publications by authors named "Annette Majnemer"

158 Publications

Developing a Canadian evaluation framework for patient and public engagement in research: study protocol.

Res Involv Engagem 2021 Feb 25;7(1):10. Epub 2021 Feb 25.

Center of Excellence for Partnership with patients and the public, University of Montreal Hospital Research Center (CRCHUM), Montreal, Canada.

Background: Patient and public engagement (PPE) in research is growing internationally, and with it, the interest for its evaluation. In Canada, the Strategy for Patient-Oriented Research has generated national momentum and opportunities for greater PPE in research and health-system transformation. As is the case with most countries, the Canadian research community lacks a common evaluation framework for PPE, thus limiting our capacity to ensure integrity between principles and practices, learn across projects, identify common areas for improvement, and assess the impacts of engagement.

Objective: This project aims to build a national adaptable framework for the evaluation of PPE in research, by: 1. Building consensus on common evaluation criteria and indicators for PPE in research; 2. Defining recommendations to implement and adapt the framework to specific populations.

Methods: Using a collaborative action-research approach, a national coalition of patient-oriented research leaders, (patient and community partners, engagement practitioners, researchers and health system leaders) will co-design the evaluation framework. We will develop core evaluation domains of the logic model by conducting a series of virtual consensus meetings using a nominal group technique with 50 patient partners and engagement practitioners, identified through 18 national research organizations. We will then conduct two Delphi rounds to prioritize process and impact indicators with 200 participants purposely recruited to include respondents from seldom-heard groups. Six expert working groups will define recommendations to implement and adapt the framework to research with specific populations, including Indigenous communities, immigrants, people with intellectual and physical disabilities, caregivers, and people with low literacy. Each step of framework development will be guided by an equity, diversity and inclusion approach in an effort to ensure that the participants engaged, the content produced, and the adaptation strategies proposed are relevant to diverse PPE.

Discussion: The potential contributions of this project are threefold: 1) support a national learning environment for engagement by offering a common blueprint for collaborative evaluation to the Canadian research community; 2) inform the international research community on potential (virtual) methodologies to build national consensus on common engagement evaluation frameworks; and 3) illustrate a shared attempt to engage patients and researchers in a strategic national initiative to strengthen evaluation capacity for PPE.
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http://dx.doi.org/10.1186/s40900-021-00255-4DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7905422PMC
February 2021

Patient engagement in an online coaching intervention for parents of children with suspected developmental delays.

Dev Med Child Neurol 2021 Jan 22. Epub 2021 Jan 22.

School of Physical and Occupational Therapy, McGill University, Faculty of Medicine and Health Sciences, Montreal, Quebec, Canada.

Aim: To evaluate patient engagement processes in the development of a new health coaching intervention for parents of children with suspected developmental delays.

Method: A cross-sectional mixed-method study design was used. Researchers (n=18) and patient-partners (n=9) were surveyed using the Public and Patient Engagement Evaluation Tool (PPEET) in areas of: (1) communication/supports for participation; (2) sharing views/perspectives; (3) impacts/influence of engagement initiative; and (4) final thoughts/satisfaction. Descriptive statistics and an inductive thematic-based approach were used to analyse the data.

Results: For both study groups, high agreement, with responses largely ranging between 'agree' to 'strongly agree', was noted on all four sections of the PPEET. Qualitative reports reflected that patient engagement was important, meaningful, and had a significant impact on the quality of the project and on the professional development of researchers in their understanding and use of patient-oriented methodology. Patient-partners noted challenges related to having realistic deadlines in providing feedback and a lack of a broader range of representation among members.

Interpretation: The benefits and challenges of applying patient-oriented strategies to a multicentre trial were highlighted. These will be used to enhance our engagement processes.
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http://dx.doi.org/10.1111/dmcn.14810DOI Listing
January 2021

Motor Impairment in Children With Congenital Heart Defects: A Systematic Review.

Pediatrics 2020 12;146(6)

School of Physical and Occupational Therapy,

Context: With improvements in survival rates in newborns with congenital heart defects (CHDs), focus has now shifted toward enhancing neurodevelopmental outcomes across their life span.

Objective: To systematically review the prevalence and extent of motor difficulties in infants, children, and adolescents with CHD requiring open-heart surgery.

Data Sources: Data sources included Embase, Medline and the Cumulative Index to Nursing and Allied Health Literature.

Study Selection: Original studies published between 1997 and 2019 examining gross and/or fine motor skills in children born with a CHD requiring open-heart surgery were selected.

Data Extraction: The prevalence of motor impairments and mean scores on standardized motor assessments were extracted. Findings were grouped in 5 categories on the basis of the age of the children.

Results: Forty-six original studies were included in this systematic review. The prevalence of mild to severe motor impairments (scores <-1 SD below normative data or controls) across childhood ranged from 12.3% to 68.6%, and prevalence ranged from 0% to 60.0% for severe motor impairments (<-2 SDs). Although our results suggest that the overall prevalence of motor impairments <-1 SD remains rather constant across childhood and adolescence, severe motor impairments (<-2 SDs) appear to be more prevalent in younger children.

Limitations: Variability in sampling and methodology between the reviewed studies is the most important limitation of this review.

Conclusions: The results of this review highlight that infants with CHD have an increased risk of motor impairments across infancy, childhood, and adolescence. These findings stress the importance of systematic screening or evaluation of motor skills across childhood and adolescence in children with CHD.
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http://dx.doi.org/10.1542/peds.2020-0083DOI Listing
December 2020

Complementary and Alternative Therapy Use in Children with Cerebral Palsy.

Can J Neurol Sci 2020 Aug 28:1-7. Epub 2020 Aug 28.

Centre for Outcomes Research and Evaluation, Research Institute of the McGill University Health Centre, Montreal, QC, Canada.

Objective: To describe complementary and alternative medicine (CAM) use amongst children with cerebral palsy (CP) in Canada and to identify factors associated with CAM use.

Methods: We conducted a cross-sectional study, utilising data from the Canadian CP Registry. We explored the association between CAM use and regional, socioeconomic and CP phenotypic variables, and parental perception of the family-centredness of clinical care using the Measures of Process of Care-56 (MPOC-56). Chi-square analyses were performed, and odds ratios (OR) and 95% confidence intervals (CI) were obtained. Mann-Whitney U tests were used to compare MPOC-56 scores between CAM users and non-CAM users.

Results: The study sample consisted of 313 families of which 27% reported CAM use in the past year. Children with CP using CAM were more likely to reside in Western Canada (OR 3.3, 95% CI 1.6-6.7), live in a two-parent household (OR 3.5, 95% CI 1.5-8.4), have an ataxic/hypotonic or dyskinetic CP subtype (OR 3.0, 95% CI 1.5-6.1) and have a greater motor impairment (OR 2.8, 95% CI 1.7-4.9). MPOC-56 subscale scores were not significantly associated with CAM use.

Conclusion: Physicians need to be aware of existing CAM therapies, the level of evidence supporting their efficacy (beneficence), their associated risks of adverse events (non-maleficence) and enable fair access to care that may be of benefit to each child.
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http://dx.doi.org/10.1017/cjn.2020.188DOI Listing
August 2020

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

Paediatr Child Health 2020 Aug 8;25(5):300-307. Epub 2019 May 8.

School of Physical and Occupational Therapy, McGill University, Montreal, Quebec.

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 '' and ', 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.
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http://dx.doi.org/10.1093/pch/pxz061DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7395325PMC
August 2020

Knowledge Empowers: Responding to the Knowledge Needs of Youth with Disabilities and Families during the Pandemic.

Phys Occup Ther Pediatr 2020 4;40(5):487-490. Epub 2020 Aug 4.

Department of Pediatrics, University of Toronto, Toronto, Canada.

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http://dx.doi.org/10.1080/01942638.2020.1801298DOI Listing
February 2021

Associations Between Postoperative Management in the Critical Care Unit and Adolescent Developmental Outcomes Following Cardiac Surgery in Infancy: An Exploratory Study.

Pediatr Crit Care Med 2020 11;21(11):e1010-e1019

Child Health and Human Development Program, Research Institute of the McGill University Health Centre, Montreal, QC, Canada.

Objectives: Children with congenital heart disease are at high risk for developmental sequelae. Most studies focus on preoperative and intraoperative predictors of developmental impairment, with less attention to the postoperative period. The relationship between patient-related factors specific to the postoperative course in the PICU following cardiac surgery with long-term neurodevelopmental outcomes in adolescence was examined.

Design: Retrospective chart review of patients previously recruited to a study describing their developmental outcomes in adolescence.

Setting: Single tertiary care pediatric hospital in Canada.

Patients: Eighty adolescents, born between 1991 and 1999, with congenital heart disease who required open-heart surgery before 2 years old.

Measurements And Main Results: Several variables related to acuity of illness and complexity of postoperative course in the PICU were collected. Outcome measures included the Movement-Assessment Battery for Children-2 (motor), Leiter Brief Intelligence Quotient (cognition), and Strength and Difficulties Questionnaire (behavior). Analyses examined associations between PICU variables and long-term outcomes. Longer mechanical ventilation (β = -0.49; p = 0.013) and dopamine use (β = -14.41; p = 0.012) were associated with lower motor scores. Dopamine use was associated with lower cognitive scores (β = -14.02; p = 0.027). Longer PICU stay (β = 0.18; p = 0.002), having an open chest postoperatively (β = 3.83; p = 0.017), longer mechanical ventilation (β = 0.20; p = 0.001), longer inotrope support (β = 0.27; p = 0.002), hours on dopamine (β = 0.01; p = 0.007), days to enteral feeding (β = 0.22; p = 0.012), lower hemoglobin (β = -0.11; p = 0.004), and higher creatinine (β = 0.05; p = 0.014) were all associated with behavioral difficulties.

Conclusions: Several important developmental outcomes in adolescents were associated with factors related to their postoperative course in the PICU as infants. Findings may highlight those children at highest risk for neurodevelopmental sequelae and suggest new approaches to critical care management following open-heart surgery, with the aim of mitigating or preventing adverse long-term outcomes.
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http://dx.doi.org/10.1097/PCC.0000000000002398DOI Listing
November 2020

Contextualized Autonomy in Transitional Care for Youth With Neurologic Conditions: The Role of the Pediatric Neurologist.

J Child Neurol 2020 07 26;35(8):536-542. Epub 2020 Apr 26.

Pragmatic Health Ethics Research Unit, Institut de recherches cliniques de Montréal, Montréal, Quebec, Canada.

Youth with neurologic conditions experience multiple life transitions. The transfer from pediatric to adult health care systems exemplifies one such complex and multifaceted transition that occurs in parallel with developmental, legal, and social changes that may influence the roles and responsibilities of youth and their caregivers. As a result, ethical situations, questions, and challenges may surface in transition care to which pediatric neurologists may be confronted. In this article, we focus on the topic of autonomy and situations that may arise in transition care in the context of pediatric neurology. Building from a clinical case, we present the concept of contextualized autonomy to work through the questions that arise in the case and propose ways of thinking through those challenging situations in transition care.
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http://dx.doi.org/10.1177/0883073820918454DOI Listing
July 2020

Current Referral Practices for Diagnosis and Intervention for Children with Cerebral Palsy: A National Environmental Scan.

J Pediatr 2020 01;216:173-180.e1

School of Physical and Occupational Therapy, McGill University, Montreal, Quebec, Canada; Centre for Interdisciplinary Research in Rehabilitation of Greater Montreal, Montreal, Quebec, Canada; Research Institute of the McGill University Health Centre, Montreal, Quebec, Canada. Electronic address:

Objectives: To describe current physician referral practices with respect to age at referral to medical specialists for initial diagnosis of cerebral palsy (CP) and rehabilitation specialists for intervention and to identify factors associated with delayed referral.

Study Design: National environmental scan of 455 children diagnosed with CP who were born in Canada between 2008 and 2011, selected from 4 sites within the Canadian CP Registry (Edmonton, Calgary, Toronto, and Montreal). Two sources of information were used-children's medical charts and the population-based registry, which provided corresponding data for each child. Primary outcomes extracted from the charts were age at referral for diagnostic assessment, age at diagnosis, age at referral for rehabilitation services, and age at initial rehabilitation intervention. Twelve variables were explored as potential predictors. Descriptive statistics, bivariate analyses, and multiple linear regressions were conducted.

Results: Median age (in months) at referral for diagnostic assessment was 8 (mean: 12.7 ± 14.3), diagnosis 16 (mean: 18.9 ± 12.8), referral for rehabilitation services 10 (mean: 13.4 ± 13.5), and rehabilitation initiation 12 (mean: 15.9 ± 12.9). Lower maternal education, mild severity of motor dysfunction, type of CP, early discharge after birth, and region of residence explained between 20% and 32% of the variance in age at referral for assessment, diagnosis, referral for rehabilitation, and rehabilitation initiation.

Conclusions: Findings suggest wide variability exists in the age at which young children with CP are referred to specialists for diagnosis and intervention. User-friendly tools are therefore needed to enhance early detection and referral strategies by primary care practitioners, to ensure early interventions to optimize developmental outcomes and enhance opportunities for neural repair at a younger age.
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http://dx.doi.org/10.1016/j.jpeds.2019.09.035DOI Listing
January 2020

Participation in leisure activities in adolescents with congenital heart defects.

Dev Med Child Neurol 2020 08 3;62(8):946-953. Epub 2019 Dec 3.

Douglas Hospital, Montreal, Quebec, Canada.

Aim: To describe leisure participation in adolescents with congenital heart defects (CHD) and identify factors associated with intensity of participation.

Method: Eighty adolescents with CHD were recruited (39 males, 41 females; mean age [SD] 15y 8mo [1y 8mo] range 11y 5mo-19y 11mo) of whom 78 completed the Children's Assessment of Participation and Enjoyment (CAPE) outcome measure of leisure participation. The measure has five subscales: recreational, active-physical, social, skill-based, and self-improvement. Associations between the CAPE and age, sex, and development were examined. Motor ability (Movement Assessment Battery for Children, Second Edition), cognition (Leiter International Performance Scale-Revised), behavior (Strengths and Difficulties Questionnaire), and motivation (Dimensions of Mastery Questionnaire) were assessed.

Results: Participants exhibited impaired motor (43.5%), behavioral (23.7%), and cognitive (29.9%) development. The most intense participation was in social (mean [SD] 3.3 [0.99]) and recreational (2.9 [0.80]) activity types on the CAPE. Male sex (p<0.05) and younger age were associated with greater physical activity (<15y: 1.87; ≥15y: 1.31, p<0.05). Greater engagement in social activities was related to better cognition (r=0.28, p<0.05), higher motor function (r=0.30-0.36, p<0.01), and fewer behavioral difficulties (r=-0.32 to -0.47, p<0.01). Cognitive ability (r=0.27, p<0.05), dexterity and aiming/catching (r=0.27-0.33, p<0.05), and behavior problems (r=0.38-0.49, p=0.001) were correlated with physical activity participation. Persistence in tasks, an aspect of motivation, correlated with physical (r=0.45, p<0.001) and social activity involvement (r=0.28, p<0.05).

Interpretation: Ongoing developmental impairments in adolescents with CHD are associated with decreased active-physical and social engagement, putting them at risk of poor physical and mental health. Health promotion strategies should be considered.

What This Paper Adds: Adolescents with congenital heart defects (CHD) have limited engagement in active-physical leisure activities. Cognitive, motor, and behavioral impairments are associated with decreased participation in leisure in children with CHD. Female sex and older age are associated with less engagement in leisure. Mastery motivation correlates with participation, suggesting an avenue for intervention.
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http://dx.doi.org/10.1111/dmcn.14422DOI Listing
August 2020

Online peer mentorship programmes for children and adolescents with neurodevelopmental disabilities: A systematic review.

Child Care Health Dev 2020 01 9;46(1):132-148. Epub 2019 Dec 9.

School of Physical & Occupational Therapy, McGill University, Quebec, Canada.

Background: Children and adolescents with neurodevelopmental disabilities may be less well integrated into their community than their peers. Online groups can be particularly accessible for individuals with neurodevelopmental disabilities, as individuals may be able to connect with a larger network than they would in their local community. This systematic review aimed at estimating the effectiveness of online peer mentorship programmes on children and adolescent's participation in life situations.

Methods: A systematic review was conducted to search Medline, PsycINFO, Embase, CINAHL, and Education Research Complete (ERIC) electronic databases. Thematic analysis was done for studies that used qualitative methodology.

Results: Eleven articles were included, and they examined the influences of five different structured online peer mentorship intervention programmes and six different online support groups. The disabilities included cerebral palsy (n = 3), autism spectrum disorder (n = 3), spina bifida (n = 2), attention deficit hyperactivity disorder (n = 2), and other neurodevelopmental disorders. The mentors included in the studies were caregivers of children with disabilities, youth and adults with disabilities, and a virtual peer actor. The mentees included in the studies were youth with disabilities (age 10-19 years) and their families. Intervention characteristics varied across the studies but consistently showed a unique potential to facilitate social networking and support. Intervention programmes with specific content and structure showed better participation outcomes than unstructured interventions. Presence of a moderator and participant characteristics (age and sociocultural background) was suggested to influence the outcomes of interventions.

Conclusions: Online peer mentorship programmes appear to have positive influence on social engagement and participation in life situation for children and adolescents with disabilities. This paper discusses several areas that should be considered in future research studies to improve potential effectiveness and use of study designs that help to establish not only if interventions work but also for whom they work best and why.
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http://dx.doi.org/10.1111/cch.12726DOI Listing
January 2020

Quantification of apparent axon density and orientation dispersion in the white matter of youth born with congenital heart disease.

Neuroimage 2020 01 9;205:116255. Epub 2019 Oct 9.

Advances in Brain & Child Development (ABCD) Research Laboratory, Research Institute of the McGill University Health Centre, Montreal, QC, Canada; Department of Neurology & Neurosurgery, Faculty of Medicine, McGill University, Montreal, QC, Canada; School of Physical & Occupational Therapy, McGill University, Montreal, QC, Canada; Department of Pediatrics, Division of Neonatology, Montreal Children's Hospital, Montreal, QC, Canada. Electronic address:

Background: White matter alterations have previously been demonstrated in adolescents born with congenital heart disease (CHD) using diffusion tensor imaging (DTI). However, due to the non-specific nature of DTI metrics, it is difficult to interpret these findings in terms of their microstructural implications. This study investigated the use of neurite orientation dispersion and density imaging (NODDI), which involves the acquisition of advanced multiple b-value data over two shells and provides proxy measures of apparent axon density and orientation dispersion within white matter, as a complement to classic DTI measures.

Study Design: Youth aged 16 to 24 years born with complex CHD and healthy peers underwent brain magnetic resonance imaging. White matter tract volumes and tract-average values of DTI and NODDI metrics were compared between groups. Tract-average DTI and NODDI results were spatially confirmed using tract-based spatial statistics.

Results: There were widespread regions of lower tract-average neurite density index (NDI) in the CHD group as compared to the control group, particularly within long association tracts and in regions of the corpus callosum, accompanied by smaller white matter tract volumes and isolated clusters of lower fractional anisotropy (FA). There were no significant differences in orientation dispersion index (ODI) between groups.

Conclusion: Lower apparent density of axonal packing, but not altered axonal orientation, is a key microstructural factor in the white matter abnormalities observed in youth born with CHD. These impairments in axonal packing may be an enduring consequence of early life brain injury and dysmaturation and may explain some of the long-term neuropsychological difficulties experienced by this at-risk group.
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http://dx.doi.org/10.1016/j.neuroimage.2019.116255DOI Listing
January 2020

BRIGHT Coaching: A Randomized Controlled Trial on the Effectiveness of a Developmental Coach System to Empower Families of Children With Emerging Developmental Delay.

Front Pediatr 2019 7;7:332. Epub 2019 Aug 7.

University of Manitoba, Winnipeg, MB, Canada.

In preschool-aged children with, or at elevated risk for, developmental disabilities, challenges and needs arise from vulnerabilities linked to critical and newly emerging cognitive, speech, motor, behavioral, and social skills. For families, this can be a stressful period as they witness the gradual unfolding of their child's differences and await to receive care. Nationally and internationally, service delivery models during this critical period are not standardized nor are they nimble or sufficient enough, leading to long wait times, service gaps and duplications. Given these struggles, there is a need to examine whether "health coaching", a structured educational program that is deliverable by different and more accessible means, can be effective in empowering families, by delivering information, providing social supports, and decreasing the demands on the overwhelmed health and developmental services. The primary objective is to evaluate the feasibility and the effectiveness of a coaching intervention (in comparison to usual and locally available care), for parents of children with emerging developmental delays. A multi-centered pragmatic randomized controlled trial design will be used. Families will be recruited from a representative sample of those awaiting publicly-funded regional child health services for children with developmental delays in four Canadian provinces. The target sample size is 392 families with children aged 1.5 to 4.5 years at recruitment date. Families will be randomly assigned to receive either the BRIGHT Coaching intervention (coach supported, hardcopy and online self-managed educational resources: 14 sessions, 2 sessions every 4 weeks for 6-9 months) or usual care that is locally available. In addition to the feasibility and acceptability measures, outcomes related to family empowerment, parental satisfaction and efficacy with caregiver competency will be evaluated at baseline, post-treatment (8 months), and follow-up (12 months). This manuscript presents the background information, design, description of the interventions and of the protocol for the randomized controlled trial on the effectiveness of BRIGHT Coaching intervention for families of children with emerging developmental delays. ClinicalTrials.gov, U.S. National Library of Medicine, National Institutes of Health #NCT03880383, 03/15/2019. Retrospectively registered.
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http://dx.doi.org/10.3389/fped.2019.00332DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6694748PMC
August 2019

Early Clinical Features of Cerebral Palsy in Children Without Perinatal Risk Factors: A Scoping Review.

Pediatr Neurol 2020 01 19;102:56-61. Epub 2019 Jul 19.

Department of Pediatrics, McGill University, Montreal, Quebec, Canada; School of Physical & Occupational Therapy, McGill University, Montreal, Quebec, Canada. Electronic address:

Background: The early identification of cerebral palsy (CP) in the primary care context is often problematic and referral for diagnosis often delayed. This study aimed to identify clinical features associated with the early detection of CP that can be used by the primary care provider.

Methods: We performed a scoping review by searching six electronic databases. We included English language articles that addressed the diagnosis of CP and/or its differential diagnosis in children and ways of detecting CP before the diagnosis is established (i.e., early clinical signs of CP) via (1) questions on the patient's clinical history, (2) developmental screening and/or health questionnaires, or (3) physical or neurological examination.

Results: Included studies (n = 41; 27 overview studies and 14 original studies) were grouped into the three themes. Most of the overview articles relied on expert opinion, and all original studies included patients at high risk of developing CP. The most commonly identified features from each theme were early hand preference on clinical history, delayed or absent achievement of motor developmental milestones on developmental screening, and persistent primitive reflexes on neurological examination.

Conclusions: Overall, the literature on the early observable clinical signs that should prompt referral for investigation of possible CP in the specific context of well-baby care surveillance was sparse and inconsistent. Further research should focus on evaluating the contribution of readily identifiable clinical features.
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http://dx.doi.org/10.1016/j.pediatrneurol.2019.07.006DOI Listing
January 2020

Preterm children with suspected cerebral palsy at 19 months corrected age in the Canadian neonatal follow-up network.

Early Hum Dev 2019 09 1;136:7-13. Epub 2019 Jul 1.

University of Toronto, 600 University Avenue, Room 19-231, Toronto, Ontario M5G 1X5, Canada. Electronic address:

Background: The ability to definitively diagnose cerebral palsy (CP) at 18-24 months is unknown.

Aims: To describe very preterm children who, at 19 months, have suspected CP defined as neither having a definitive diagnosis of CP nor no CP and compare them with children with and without CP.

Study Design And Methods: Longitudinal national cohort study of births <29 weeks' gestation with linked Canadian Neonatal Network and Canadian Neonatal Follow-up Network data with 19 month assessments and 3-year questionnaires (Ages and Stages-3 and Health Status Classification System-Preschool). CP, no CP and suspected CP groups, classified at 19 months, were compared using chi square and ANOVA.

Results: Of 3086 survivors, 2280 had complete 19-month corrected age (CA) and 1261 had 3-year CA data. Suspected CP (3.6%), CP (6.4%) and no CP (90%) groups differed (p < 0.05) in birth weight, gestational age, complications of prematurity and NICU length of stay. Children with suspected CP had Bayley-III motor, cognitive and language composite scores at 18 months midway between CP and no CP, had the lowest sensory impairment rates and highest hospital readmission rates. At 3 years, gross motor, fine motor, problem-solving, communication and social skill abilities differed: abnormal outcomes were intermediate for children with suspected CP (p < 0.01).

Conclusions: CP incidence varied from 6.4% to 10% with exclusion or inclusion of children with suspected CP. Children with suspected CP have characteristics mostly midway between those with and without CP and developmental concerns persist to 3 years and require surveillance beyond 19 months.
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http://dx.doi.org/10.1016/j.earlhumdev.2019.06.009DOI Listing
September 2019

Gymnastic-Based Movement Therapy for Children With Neurodevelopmental Disabilities: Results From a Pilot Feasibility Study.

Front Pediatr 2019 14;7:186. Epub 2019 May 14.

Department of Pediatrics, University of British Columbia, Vancouver, BC, Canada.

Developmental and behavioral issues often limit the participation of children with neurodevelopmental disabilities (NDD) in community-based activities with their peers, which decreases opportunities for their social learning and development. Parents of children with NDD seek out programs that address physical and psychosocial development. Several studies already support the positive effects for the child to attend physical activity programs (PAPs). However, these studies are highly prone to biases and Hawthorne effect. In the planning stage of a large prospective study to assess the effectiveness of PAPs we reviewed the records of children who participated in a gymnastic-based program, the Empowering Steps Movement Therapy (ESMT). Besides generating useful data for developing the prospective study we thought these data reflect the rate of changes in context of normal practice in a naturalistic environment; therefore protected from Hawthorne effect and other biases. This is a historical cohort: the files of 67 children with NDD were examined across a 2-year period (Jan 2011 to Jan 2013). As part of standard practice, the ESMT therapists document changes in motor function every 6 months, using the ESMT's proprietary motor scale. Parents also completed a parental questionnaire in June 2011 regarding their perceptions of changes in their child's physical and psychosocial function, as well as family functioning since their child started the program. Linear Mixed Effects Model clearly identified three groups according to changes in motor function: the ones with rapid changes (mostly functional children with autism spectrum disorder: = 13), the ones with moderate changes (different types of NDD diagnoses: = 41) and the ones that did not change or even decreased motor skills over the follow-up (children with complex diseases or uncontrolled epilepsy despite treatment: = 13). Parental questionnaires ( = 39) reported improvement in most of the children's physical and psychosocial abilities; they also indicated improvement in some of the family parameters. There was no association between the changes in children's motor functions and parents' responses to the questionnaire. Despite limitations due to the retrospective nature of the study, the absence of a control group and the absence of validated measurement tools, the observed positive effects of attending movement therapy center on motor performance and psychosocial development confirm in a naturalistic environment what has been shown in context of clinical trials or quasi-experimental studies. These results are not conclusive. They warrant further, rigorous investigation using validated instruments, independent assessors, and control groups.
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http://dx.doi.org/10.3389/fped.2019.00186DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6527593PMC
May 2019

Hippocampal alterations and functional correlates in adolescents and young adults with congenital heart disease.

Hum Brain Mapp 2019 08 9;40(12):3548-3560. Epub 2019 May 9.

Advances in Brain and Child Health Development Research Laboratory, Research Institute of the McGill University Health Centre, Montreal, Quebec, Canada.

There is a high prevalence of neurodevelopmental impairments in individuals living with congenital heart disease (CHD) and the neural correlates of these impairments are not yet fully understood. Recent studies have shown that hippocampal volume and shape differences may provide unique biomarkers for neurodevelopmental disorders. The hippocampus is vulnerable to early life injury, especially in populations at risk for hypoxemia or hemodynamic instability such as in neonates with CHD. We compared hippocampal gray and white matter volume and morphometry between youth born with CHD (n = 50) aged 16-24 years and healthy peers (n = 48). We also explored whether hippocampal gray and white matter volume and morphometry are associated with executive function and self-regulation deficits. To do so, participants underwent 3T brain magnetic resonance imaging and completed the self-reported Behavior Rating Inventory of Executive Function-Adult version. We found that youth with CHD had smaller hippocampal volumes (all statistics corrected for false discovery rate; q < 0.05) as compared to controls. We also observed significant smaller surface area bilaterally and inward displacement on the left hippocampus predominantly on the ventral side (q < 0.10) in the CHD group that were not present in the controls. Left CA1 and CA2/3 were negatively associated with working memory (p < .05). Here, we report, for the first-time, hippocampal morphometric alterations in youth born with CHD when compared to healthy peers, as well as, structure-function relationships between hippocampal volumes and executive function. These differences may reflect long lasting alterations in brain development specific to individual with CHD.
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http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6865495PMC
August 2019

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

Dev Med Child Neurol 2020 01 25;62(1):89-96. Epub 2019 Apr 25.

School of Physical and Occupational Therapy, McGill University, Montréal, QC, Canada.

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.
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http://dx.doi.org/10.1111/dmcn.14252DOI Listing
January 2020

Health coaching for parents of children with developmental disabilities: a systematic review.

Dev Med Child Neurol 2019 11 18;61(11):1259-1265. Epub 2019 Mar 18.

School of Physical and Occupational Therapy, McGill University Faculty of Medicine, Montreal, Quebec, Canada.

Aim: To determine the level of evidence on the effectiveness of health coaching for parents of children with disabilities.

Method: A systematic review approach, comprised of a comprehensive, librarian-guided literature search; transparent study selection and data extraction; quality assessment; and synthesis of sufficiently similar data (per population, intervention nature, and overall level of evidence for each outcome using standard definitions) was undertaken.

Results: Twenty-eight studies (13 randomized clinical trials) were included. Three health coaching approaches were identified: child-targeted (most commonly applied), parent-targeted, and a mixed approach. Overall, there is an insufficient-to-limited level of evidence regarding the effectiveness of these approaches.

Interpretation: High-quality clinical trials using the parent-targeted coaching approach are warranted.

What This Paper Adds: Health coaching parents of children with disabilities is an emergent practice. Child-targeted, parent-targeted, or mixed health coaching approaches exist. The child-targeted health coaching approach is currently most applied. Parents of children with autism spectrum disorder are the most common recipients.
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http://dx.doi.org/10.1111/dmcn.14206DOI Listing
November 2019

A Comparison of Developmental Outcomes of Adolescent Neonatal Intensive Care Unit Survivors Born with a Congenital Heart Defect or Born Preterm.

J Pediatr 2019 04 6;207:34-41.e2. Epub 2018 Dec 6.

Research Institute of the McGill University Health Centre, Montreal, Québec, Canada; School of Physical and Occupational Therapy, McGill University, Montreal, Québec, Canada; Department of Pediatrics, Division of Child Neurology, McGill University, Montreal, Québec, Canada. Electronic address:

Objective: To compare cognitive, motor, behavioral, and functional outcomes of adolescents born with a congenital heart defect (CHD) and adolescents born preterm.

Study Design: Adolescents (11-19 years old) born with a CHD requiring open-heart surgery during infancy (n = 80) or born preterm ≤29 weeks of gestational age (n = 128) between 1991 and 1999 underwent a cross-sectional evaluation of cognitive (Leiter International Performance Scale-Revised), motor (Movement Assessment Battery for Children-II), behavioral (Strengths and Difficulties Questionnaire), and functional (Vineland Adaptive Behavior Scale-II) outcomes. Independent samples t tests and Pearson χ or Fisher exact tests were used to compare mean scores and proportions of impairment, respectively, between groups.

Results: Adolescents born with a CHD and adolescents born preterm had similar cognitive, motor, behavioral, and functional outcomes. Cognitive deficits were detected in 14.3% of adolescents born with a CHD and 11.8% of adolescents born preterm. Motor difficulties were detected in 43.5% of adolescents born with a CHD and 50% of adolescents born preterm. Behavioral problems were found in 23.7% of adolescents in the CHD group and 22.9% in the preterm group. Functional limitations were detected in 12% of adolescents born with a CHD and 7.3% of adolescents born preterm.

Conclusions: Adolescents born with a CHD or born preterm have similar profiles of developmental deficits. These findings highlight the importance of providing long-term surveillance to both populations and guide the provision of appropriate educational and rehabilitation services to better ameliorate long-term developmental difficulties.
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http://dx.doi.org/10.1016/j.jpeds.2018.11.002DOI Listing
April 2019

A cross-sectional analysis on the effects of age on dual tasking in typically developing children.

Psychol Res 2019 Feb 1;83(1):104-115. Epub 2018 Dec 1.

School of Physical and Occupational Therapy, Faculty of Medicine, McGill University, Montreal, Canada.

Dual tasking is an integral part of everyday activities for children. Therefore, as with the other aspects of child development-motor, cognitive, perceptual, psychological, and behavioral-it is important to understand the maturation process of dual-tasking skills in children. Characterizing age-related changes in children's dual-task performance has been problematic, because differences in dual-tasking ability are confounded by age differences in abilities in the relevant single-task performances. The effect of age on dual-tasking ability was examined in 221 typically developing children aged 5-8 years using two motor-cognitive dual-task paradigms: walking while performing an n-back cognitive task, and drawing a trail while performing an n-back cognitive task. The test-retest reliability of the dual-task paradigm was examined by re-assessing 50 participants after 1 month. Individual differences in single-task performance were controlled for, so that any age differences in dual-task costs could not be attributed to differences in single-task performance. There were no age-related differences in dual-task cost of any task (p > 0.05). However, the dual-task cost of trail-making was significantly greater than the dual-task cost of walking when performed under similar cognitive loads (p < 0.0001). The intra-class correlation coefficient ranged from 0.71 to 0.92 for all dual-task performances. The results suggest that previously reported age differences in dual-task costs in young children may have been driven by developmental differences in single-task ability, and that general task coordination ability is comparable in children 5-8 years of age.
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http://dx.doi.org/10.1007/s00426-018-1126-0DOI Listing
February 2019

Coach, Care Coordinator, Navigator or Keyworker? Review of Emergent Terms in Childhood Disability.

Phys Occup Ther Pediatr 2019 20;39(2):119-123. Epub 2018 Nov 20.

b Faculty of Medicine, School of Physical and Occupational Therapy , McGill University , Montreal , Quebec , Canada.

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http://dx.doi.org/10.1080/01942638.2018.1521891DOI Listing
April 2019

Family-centred health care for children with cerebral palsy.

Dev Med Child Neurol 2019 01 7;61(1):62-68. Epub 2018 Oct 7.

School of Physical and Occupational Therapy, McGill University, Montreal, QC, Canada.

Aim: To identify characteristics of young children with cerebral palsy (CP), and intrinsic and extrinsic factors, that may be associated with parental perceptions regarding family-centred health care services.

Method: We conducted a cross-sectional study, drawing our sample from the Canadian Cerebral Palsy Registry (CCPR). Parents rated the extent of family-centred care provided by their child's health care teams using the 56-item Measures of Process of Care (MPOC) questionnaire. Environmental and CP phenotypic variables were extracted from the CCPR for group comparisons. Low and high MPOC-56 raters were also compared.

Results: Valid responses were obtained from 282 families (90%). All MPOC-56 subscales were highly rated (median ≥6.0), indicating satisfaction with health care services, with the exception of the Providing General Information subscale (median 4.8, interquartile range 3.2-6.0). Parents from Nova Scotia rated all subscales significantly higher than parents from other regions. CP subtype and severity were not significantly associated with MPOC-56 subscale scores. Higher socio-economic status was associated with lower MPOC-56 subscale scores. Higher paternal educational attainment and household income were significantly associated with lower scores on the Providing General Information and Providing Specific Information about the Child subscales respectively.

Interpretation: Participants affirmed the provision of family-centred services from Canadian pediatric rehabilitation centres. Sociodemographic factors were associated with parental perceptions of family-centred services.

What This Paper Adds: Sociodemographic factors were associated with parental perceptions of family-centred care. Factors intrinsic to the child's cerebral palsy were not associated with parental perceptions.
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http://dx.doi.org/10.1111/dmcn.14053DOI Listing
January 2019

Age at referral for diagnosis and rehabilitation services for cerebral palsy: a scoping review.

Dev Med Child Neurol 2019 08 1;61(8):908-914. Epub 2018 Oct 1.

School of Physical and Occupational Therapy, McGill University, Montreal, QC, Canada.

Aim: This study sought to: (1) determine what is known about age at referral for diagnosis and rehabilitation services for children suspected of having cerebral palsy (CP); and (2) identify factors associated with earlier referral.

Method: A scoping review was conducted to summarize existing literature. We systematically searched Allied and Complementary Medicine, CINAHL, Cochrane Library, Embase, and PsycINFO for evidence published between 1979 and 2017 on age at referral for diagnosis or age at referral to rehabilitation services for children suspected of having CP. Quantitative and thematic analyses of the literature were performed.

Results: Our search yielded 777 articles, of which 15 met the inclusion criteria. Only one study focused on age at referral for diagnosis of CP (mean 16.6mo±19.2mo), with two on age at referral to rehabilitation services (means 13.9mo±15.8mo and 12.4mo). Potential predictors of earlier referral identified include referral source, type of CP, and a complicated birth history.

Interpretation: Evidence is sparse; however, available studies suggest high variation in the age at which children are being referred for diagnosis, typically ranging from 10 months to 21 months. Evidence indicates that subgroups of children with CP might be experiencing prolonged delays. Findings highlight the need to better understand what contributes to delays in referral for diagnosis and rehabilitation.

What This Paper Adds: Evidence on age at referral for diagnosis of cerebral palsy is sparse. Potential predictors of delayed referral represent targets to minimize delays in diagnosis. A subset of children may be experiencing unnecessary delays in referral.
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http://dx.doi.org/10.1111/dmcn.14034DOI Listing
August 2019

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

Phys Occup Ther Pediatr 2019 28;39(1):33-47. Epub 2018 Sep 28.

c School of Physical & Occupational Therapy , McGill University , Montreal , QC , Canada.

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.
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http://dx.doi.org/10.1080/01942638.2018.1490846DOI Listing
March 2019

Health-Related Quality of Life for Patients With Genetically Determined Leukoencephalopathy.

Pediatr Neurol 2018 07 9;84:21-26. Epub 2018 Apr 9.

Department of Medical Genetics, Montreal Children's Hospital, McGill University Health Centre, Montreal, Quebec, Canada; Department of Neurology and Neurosurgery, McGill University, Montreal, Quebec, Canada; Department of Pediatrics, McGill University, Montreal, Quebec, Canada; Child Health and Human Development Program, Research Institute of the McGill University Health Centre, Montreal, Quebec, Canada. Electronic address:

Background: We attempted to characterize the health-related quality of life in patients with genetically determined leukoencephalopathies as it relates to the severity of clinical features and the presence or absence of a precise molecular diagnosis.

Methods: Health-related quality of life was assessed using the Pediatric Quality of Life Inventory model (Pediatric Quality of Life Inventory 4.0 Self- and Proxy-reports) on 59 patients diagnosed with genetically determined leukoencephalopathies. In total, 38 male and 21 female patients ranging from one to 32 years of age (mean nine years), as well as their parents, completed the Pediatric Quality of Life Inventory health-related quality of life measures. In addition, participants completed detailed standardized clinical assessments or questionnaires. The correlation between health-related quality of life results and the severity of the clinical features, as well as the presence or absence of a molecular diagnosis, were analyzed.

Results: Patients with more severe clinical features showed statistically significant lower total Pediatric Quality of Life Inventory scores. More specifically, lower health-related quality of life was noted in children with sialorrhea, gastrostomy, and dystonia and in children who use a wheelchair.

Conclusions: Patients with more severe clinical features experience a lower quality of life. Our study further highlights the importance of addressing both physical and psychosocial issues and discussing perception of quality of life with both parents and children. A larger multicenter prospective study will be needed to further define the burden of these diseases and to identify modifiable factors.
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http://dx.doi.org/10.1016/j.pediatrneurol.2018.03.015DOI Listing
July 2018

A Pilot Randomized Controlled Trial of an Intervention to Promote Psychological Well-Being in Critically Ill Children: Soothing Through Touch, Reading, and Music.

Pediatr Crit Care Med 2018 07;19(7):e358-e366

Department of Pediatrics, The Montreal Children's Hospital, McGill University Health Centre, Montreal, Quebec, Canada.

Objectives: To examine the feasibility and acceptability of a PICU Soothing intervention using touch, reading, and music.

Design: Nonblinded, pilot randomized controlled trial.

Setting: The PICU and medical-surgical wards of one Canadian pediatric hospital.

Patients: Twenty PICU patients age 2-14 years old and their parents, randomized to an intervention group (n = 10) or control group (n = 10).

Intervention: PICU Soothing consisted of: 1) parental comforting (touch and reading), followed by 2) a quiet period with music via soft headbands, administered once daily throughout hospitalization.

Measurements And Main Results: Acceptability and feasibility of the intervention and methods were assessed via participation rates, observation, measurement completion rates, semistructured interviews, and telephone calls. Psychological well-being was assessed using measures of distress, sleep, and child and parent anxiety in the PICU, on the wards and 3 months post discharge. Forty-four percent of parents agreed to participate. Seventy percent and 100% of intervention group parents responded positively to comforting and music, respectively. Most intervention group parents (70%) and all nurses felt children responded positively. All nurses found the intervention acceptable and feasible. Measurement completion rates ranged from 70% to 100%. Pilot data suggested lower intervention group child and parent anxiety after transfer to hospital wards.

Conclusions: PICU Soothing is acceptable and feasible to conduct. Results support the implementation of a full-scale randomized controlled trial to evaluate intervention effectiveness.
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http://dx.doi.org/10.1097/PCC.0000000000001556DOI Listing
July 2018

The effectiveness of the Pathways and Resources for Engagement and Participation (PREP) intervention: improving participation of adolescents with physical disabilities.

Dev Med Child Neurol 2018 05 6;60(5):513-519. Epub 2018 Feb 6.

Avery Information Services Ltd., Orilla, ON, Canada.

Aim: This study examined the effectiveness of the Pathways and Resources for Engagement and Participation (PREP) intervention in improving the participation of adolescents in community-based activities.

Method: Twenty-eight adolescents (14 males, 14 females), aged 12 to 18 years (mean 14y 6mo, SD 21.6mo) with moderate physical disabilities participated in a 12-week PREP intervention. An interrupted time series design with multiple baselines was employed, replicating the intervention effect across three chosen activities and all participants. An occupational therapist worked individually with adolescents and parents to identify and implement strategies to remove environmental barriers that impede participation in selected activities. Activity performance was repeatedly measured using the Canadian Occupational Performance Measure (COPM) at baseline, intervention, and follow-up (20wks). For each activity, the trajectory representing change in performance was analyzed descriptively. Segmented regression combined with a mixed-effects modeling approach was used to statistically estimate the overall effectiveness of the intervention within and across 79 activities.

Results: A statistically significant improvement (B=2.08, p<0.001) was observed across all activities, 59 per cent of which also indicated a clinically significant change of more than 2 points on the COPM scale. Levels of performance were maintained during follow-up with an additional increase of 0.66 points on the COPM scale (t=3.04, p=0.004). Intervention was most effective for males and those with a higher number of functional issues.

Interpretation: Findings illustrate that participation can be improved by changing the environment only. Such evidence further supports emerging therapeutic approaches that are activity-based, goal-oriented, and ecological in nature.

What This Paper Adds: Environment-based intervention strategies, guided by the Pathways and Resources for Engagement and Participation, are effective in improving and maintaining adolescent participation. Intervention was most effective for males and those with a higher number of functional issues. The study design serves as an example for future pragmatic studies accounting for individual-based changes and contexts.
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http://dx.doi.org/10.1111/dmcn.13682DOI Listing
May 2018

Educational and rehabilitation service utilization in adolescents born preterm or with a congenital heart defect and at high risk for disability.

Dev Med Child Neurol 2017 10 17;59(10):1056-1062. Epub 2017 Aug 17.

Department of Psychiatry, Faculty of Medicine, McGill University, Montreal, QC, Canada.

Aim: This historical cohort study describes the use of educational and rehabilitation services in adolescents born preterm or with a congenital heart defect (CHD).

Method: Parents of 76 young people (mean age 15y 8mo [SD 1y 8mo]) with CHD and 125 born ≤29 weeks gestational age (mean age 16y [SD 2y 5mo]) completed a demographics questionnaire including educational and rehabilitation resource utilization within the previous 6 months. Rehabilitation services included occupational therapy, physical therapy, speech language pathology, psychology. Developmental (Leiter Brief IQ, Movement-ABC, Strengths and Difficulties Questionnaire) and functional (Vineland) status of the young people was assessed. Pearson χ tests were used to perform simple pairwise comparisons of categorical outcomes across the two groups (CHD, preterm). Univariate logistic regression was used to examine predictors of service utilization.

Results: Developmental profiles of the two groups (CHD/preterm) were similar (29.9%/30% IQ<80; 43.5%/50.0% motor difficulties; 23.7%/22.9% behavior problems). One-third received educational supports or attended segregated schools. Only 16% (preterm) and 26.7% (CHD) were receiving rehabilitation services. Services were provided predominantly in the school setting, typically weekly. Few received occupational therapy or physical therapy (1.3-7.6%) despite functional limitations. Leiter Brief IQ<70 was associated with receiving educational supports (CHD: OR 5.53, 95% CI 1.29-23.68; preterm: OR 14.63, 3.10-69.08) and rehabilitation services (CHD: OR 4.46, 1.06-18.88; preterm: OR 5.11, 1.41-18.49). Young people with motor deficits were more likely to require educational (CHD: OR 5.72, 1.99-16.42; preterm: OR 3.11, 1.43-6.77) and rehabilitation services (preterm: OR 3.97, 1.21-13.03).

Interpretation: Although young people with impairments were more likely to receive educational and rehabilitation services, many may not be adequately supported, particularly by rehabilitation specialists. Rehabilitation services at this important transition phase could be beneficial in optimizing adaptive functioning in the home, school, and community.
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http://dx.doi.org/10.1111/dmcn.13520DOI Listing
October 2017

Current Practice "Constraints" in the Uptake and Use of Intensive Upper Extremity Training: A Canadian Perspective.

Phys Occup Ther Pediatr 2018 05 16;38(2):143-156. Epub 2017 May 16.

a School of Physical & Occupational Therapy , McGill University , Montreal , Quebec , Canada.

Background: Intensive upper extremity training (IUET) has demonstrated efficacy in clinical and functioning outcomes in children with hemiplegia. However, implementation in the clinical context requires novel service models and knowledge translation.

Aims: To map implementation of IUET in Canada, to identify factors associated with the implementation and best practices for implementation.

Methods: Mixed-methods design; descriptive statistics, chi-square tests. Individual phone interviews and focus groups with purposeful sampling. Thematic analysis; telephone surveys with managers of 31 pediatric rehabilitation centers across Canada. Four focus groups across Canada and one in the Netherlands.

Results: Implementation of IUET group interventions is limited in Canada (7/31). Barriers included beliefs and values related to evidence-based practice, opportunities for continuing education, researchers-clinicians partnerships, access to scientific literature, and the presence of a champion. Pressure from parents and media presenting IUET as a novel and effective therapy, support and flexibility of families, having the critical mass of clients and a managerial willingness to accommodate new ideas and restructure service provision were some facilitators.

Conclusions: Uptake of the evidence requires many steps described in the knowledge translation cycle. Factors identified in the study could be considered in most clinical settings to facilitate the uptake of research evidence for IUET.
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http://dx.doi.org/10.1080/01942638.2017.1303802DOI Listing
May 2018