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Abstract Youth with complex health care needs, defined as those requiring specialized health care and services for physical, developmental, and/or mental health conditions, are often cared for by paediatricians and paediatric specialists. In Canada, the age at which provincial/territorial funders mandate the transfer of paediatric care to adult services varies, ranging between 16 and 19 years. The current configuration of distinct paediatric and adult care service boundaries is fragmentary, raising barriers to continuity of care during an already vulnerable developmental period. For youth, the lack of care integration across sectors can negatively impact health engagement and jeopardize health outcomes into adulthood. To address these barriers and improve transition outcomes, paediatric and adult care providers, as well as family physicians and other community partners, must collaborate in meaningful ways to develop system-based strategies that streamline and safeguard care for youth transitioning to adult services across tertiary, community, and primary care settings. Flexible age cut-offs for transfer to adult care are recommended, along with considering each youth’s developmental stage and capacity as well as patient and family needs and circumstances. Specialized training and education in transitional care issues are needed to build capacity and ensure that health care providers across diverse disciplines and settings are better equipped to accept and care for young people with complex health care needs.

IntroductionMultimorbidity, the co-occurrence of a chronic physical condition and mental disorder, affects a substantial number of children and youth and can lead to compromised quality of life, hardship for families, and an increased burden on the healthcare system. We are conducting a study to document the course of mental disorder in children and youth diagnosed with a chronic physical condition; identify predictors of child and youth multimorbidity; examine whether the effects of these predictors are moderated by relevant psychosocial and biological factors; explore potential inflammatory and stress biomarkers that mediate the onset of child and youth multimorbidity; and, assess whether multimorbidity in children and youth alters patterns of mental health service use.Methods and analysisMultimorbidity in Children and Youth Across the Life-course (MY LIFE) is a prospective study. Two hundred and fifty children and youth aged 2–16 years diagnosed with a chronic physical condition along with one parent will be recruited from the outpatient clinics at a paediatric tertiary care centre. Data will be collected using a multi-informant, multimethod design at four time-points (at recruitment, and at 6, 12 and 24 months postrecruitment). Parents will provide reports for all children/youth. In addition, youth ≥10 years will self-report. Mental disorder will be assessed using structured interviews. On completion of data collection, participant-reported data will be linked to provincial health records to identify mental health services use. Multilevel analyses (survival, proportional hazard, structural equation modelling) will be used to address MY LIFE objectives.Ethics and disseminationThis study has been approved by the University of Waterloo Human Research Ethics Board and the Hamilton Integrated Research Ethics Board. Findings will be disseminated to key stakeholders using a number of outlets (peer-reviewed publications and conferences, lay informational pamphlets, social media).

While principles of neuroplasticity and motor learning emphasise the potential of high dosage of physical rehabilitation in children and adolescents with acquired brain injury (ABI) during the subacute phase, we lack empirical evidence to demonstrate its impact in terms of meaningful outcomes. Clinical research is needed to investigate adequate dosage of physical rehabilitation and its effects on outcomes with reliable and validated outcome measurements. In this study we will investigate the feasibility of a highly intensive physical rehabilitation intervention and outcomes with reliable and valid outcome measurements. Our study with a prospective case-series design will evaluate (1) The safety and feasibility of a high-intensive physical rehabilitation programme to improve functioning and participation in children and adolescents with ABI, and (2) The feasibility of a core set of clinical outcome measures to assess recovery on relevant International Classification of Functioning, Disability, and Health domains during the subacute phase. We aim to include 10-15 children and adolescents aged 6-20 years with moderate-severe ABI during subacute rehabilitation in a specialised youth department for inpatient rehabilitation in The Netherlands. In the rehabilitation programme, we aim at a highly intensive approach of 3-5 hours physical rehabilitation per day during inpatient rehabilitation. Frequent and systematic assessment (baseline, each consecutive 6 weeks -if applicable- and at discharge) through a core set of outcome measures will provide insights into the degree of recovery of motor and cognitive functioning. We use descriptive and inferential statistics and thematic content analysis for analysis of the data. The study has been approved by the Medical Ethics Research Committee of the University Medical Hospital, Utrecht (reference number: 23U-0628). We aim to disseminate our findings in peer-reviewed journals and present at national and international conferences.

To analyze needs and requirements of Pediatric Physical Therapists (PPTs), parents, children and adolescents with and without developmental disabilities in the future use of an activity monitor prototype (AM-p) in everyday clinical practice. Qualitative exploratory study with a thematic analysis approach, based on Braun and Clarke's six steps. Codes derived from the analysis and central themes were collated, based on Fleuren et al.'s groupings of determinants. We interviewed 25 PPTs, 12 parents, and 12 children and adolescents. Within four groupings of determinants, we found nine themes: 1) development of information materials; 2) application: output visualization and ease of use; 3) design; 4) relevance and acceptance; 5) shared decision-making; 6) compatibility in daily living; 7) finances, 8) time, and 9) legislation and regulations. End-users have similar basic needs, with individual fine-tuning to be addressed during further development of the AM-p. A child-friendly design, information material, and an easy-to-use application to read and interpret results, need to be developed. Efficient training for PPTs is important for the use of the AM-p and analysis of results. Communication between PPTs and children as well as parents enhances shared decision-making. We recommend involving diverse end-users to enable maximum customization of the AM-p.

Resistance training of the lower limbs is now commonly used in clinical practice in children and adolescents with spastic cerebral palsy (CP). However, the effectiveness of this type of training is still disputed. The most recently published systematic review with meta-analysis included interventions such as electrical stimulation and resistance training and found insufficient evidence to support or refute the efficacy of these exercises in children with CP. Thus, the aim of this article is to evaluate the extent to which training protocols from the most recent randomized controlled trials are in keeping with the evidence for effective resistance training in children who are developing typically, as reflected in the training guidelines of the National Strength and Conditioning Association. for resistance training protocols, based on this evidence and appropriate to children with CP, are provided to help guide both future research and clinical practice for resistance training in children with CP.

Background Pediatric healthcare professionals facilitate children to enhance and maintain a physically active lifestyle. Activity monitors (AM) can help pediatric healthcare professionals assess physical activity in everyday life. However, validation research of activity monitors has often been conducted in laboratories and insight into physical activity of children in their own everyday environment is lacking. Our goal was to study the criterion validity of a prototype AM (AM-p) model in a natural setting. Methods Cross-sectional community-based study with ambulatory children (2-19 years) with and without developmental disability. Children wore the AM-p on the ankle and were filmed (gold standard) while performing an activity protocol in a natural setting. We labelled all videos per 5-second epoch with individual activity labels. Raw AM-p data were synchronized with activity labels. Using machine learning techniques, activity labels were subdivided in three pre-defined categories. Accuracy, recall, precision, and F1 score were calculated per category. Results We analyzed data of 93 children, of which 28 had a developmental disability. Mean age was 11 years (SD 4.5) with 55% girls. The AM-p model differentiated between ‘stationary’, ‘cycling’ and ‘locomotion’ activities with an accuracy of 82%, recall of 78%, precision of 75%, and F1 score of 75%, respectively. Children older than 13 years with typical development can be assessed more accurately than younger children (2-12 years) with and without developmental disabilities. Conclusion The single ankle-worn AM-p model can differentiate between three activity categories in children with and without developmental disabilities with good accuracy (82%). Because the AM-p can be used for a heterogenous group of ambulatory children with and without developmental disabilities, it may support the clinical assessment for pediatric healthcare professionals in the future.

Background In the management of hypertonicity in children with cerebral palsy (CP), goals should be clearly identified in order to evaluate the effectiveness of botulinum toxin A (BoNT-A) treatment, specifically in non-ambulatory children and adolescents, Gross Motor Function Classification System (GMFCS), level IV or V. A retrospective chart review (Mesterman et al., 2013) identified the need for the development of a set of specific and meaningful goals linked to the International Classification of Functioning, Disability and Health (ICF) for future goal setting and evaluation in this population. Our objective is to create an inventory of goals based on the ICF framework that captures the needs and values of families with children with CP. Methods This cross-sectional observational study recruited parents of twenty children and youths with CP in GMFCS levels IV or V (mean age 11.2 years, SD 4.3, 13 males) who were assessed for BoNT-A treatment at the Spasticity Management Clinic at McMaster Children’s Hospital (Hamilton, ON). A previous inventory of goals was developed by a group of experts at a national botulinum toxin conference held in January 2014 (Montreal, Canada). The inventory of goals was further refined by asking the parents to select goals from the inventory list that they would like their child to accomplish after receiving BoNT-A treatment, and asking healthcare professionals for clarity and phrasing of goals in the inventory list. Results All parents identified body structure and function goals, with more than 75% of parents selecting reduction in muscle tone and increased range of movements in the upper and lower extremities. More than 50% of parents identified activity goals related to ease of caregiving. Two activity goals and three participation goals were missing from the inventory. Participation goals were identified by less than 5% of parents. Conclusion The inventory may be a helpful tool to facilitate a discussion about goal setting between healthcare professionals and families in the context of BoNT-A treatment. A future study is needed to conduct qualitative interviews to better understand the information that families may require about setting goals during BoNT-A treatment and to evaluate the usefulness of the inventory.

We aimed to identify activity limitations and participation restrictions encountered by children and youth with disabilities for which assistive products and technology could be helpful. We used a convergent, parallel, mixed-methods design involving a nationwide, French survey composed of closed questions (quantitative) and open questions (qualitative) that enlightened the quantitative data. A total of 1055 responses were received, and 962 included: 92 from children and youth with disabilities, 493 from relatives and 377 from professionals. Difficulties frequently checked and described in detail were participation in recreational activities, leaving the house and traveling, participating in a group, and getting ready. Transversal explanations for difficulties were spontaneously provided (e.g., lack of accessibility and mobility). Solutions proposed included personal assistive devices to facilitate home life, high-tech devices, devices to compensate for impaired body functions, and adaptation of the familiar environment and daily activities. Few public solutions were proposed. The necessity of human assistance was emphasized. The mixed-methods design and involvement of different stakeholders identified common, macroscopic trends in difficulties encountered and desired solutions. Products and technology are required in the following domains: the familiar environment, accessibility and mobility, sports and leisure, high-technology, and family support. We provide suggestions to facilitate the development of innovative solutions.

IntroductionTransition from paediatric to adult care is a complex process, which poses significant challenges for adolescents with chronic physical and mental illnesses. For many, transfer to adult care is associated with poor health and psychosocial outcomes. Quality indicators to evaluate transition to adult care are needed to benchmark and compare performance across conditions and health systems. This systematic review aims to identify quality indicators for successful transition to adult care which can be applied across chronic physical and/or mental illnesses.MethodsPublished literature will be searched using MEDLINE, Embase and CINHAL from earliest available date to July 2021. Grey literature will be searched using the Grey Matters tool. Using a set of inclusion/exclusion criteria, two independent reviewers will screen titles and abstracts, followed by full-text review. Disagreements will be resolved by a third reviewer. Study selection and data extraction will follow the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Protocols. Study appraisal will be completed using the Appraisal of Guidelines for Research and Evaluation for Quality Indicators instrument. Extracted quality indicators will be categorised into a conceptual framework.Ethics and disseminationResults from this review will offer novel insights into quality indicators that may be used to measure and evaluate transition success across conditions, which will be disseminated via a Canadian transition collaborative, workshops and peer-reviewed publication. Extracted quality indicators will be further prioritised in a Delphi study with patients, caregivers and providers. This is a critical step in developing a core set of metrics to evaluate transitions to adult care. Ethics approval is not required as this review will identify and synthesise findings from published literature.PROSPERO registration numberCRD42020198030.

IntroductionSiblings share a lifelong bond in their relationship, and they may choose to provide support to their brother or sister with a neurodisability. Previous reviews summarised programmes that only focused on the behavioural, emotional and psychological outcomes of the siblings. There is a need to synthesise existing evidence and enhance our understanding about programmes for siblings to acquire knowledge, develop skills and become empowered that can help them to provide support to their brother or sister with a neurodisability. The objective of this review is to identify and map the characteristics and outcomes of programmes designed to prepare siblings in their future roles to support their brother or sister with a neurodisability.Methods and analysisThis review will be conducted using the Joanna Briggs Institute methodology for scoping reviews. An integrated knowledge translation approach will be used by partnering with the Sibling Youth Advisory Council comprised of siblings of individuals with a disability throughout all review phases. Databases to be searched include PsycINFO, Cumulative Index of Nursing and Allied Health Literature, Sociological Abstracts, Education Resources Information Center, EMBASE, Web of Science, MEDLINE (Ovid) and SPORTDiscus, from date of inception to November 2020. Studies of programmes designed for siblings of individuals with neurodisabilities, with no exclusion on the age of siblings or context, and published in English will be included. Extracted data will include details of programme structure and content, eligibility criteria and participants, context, study methods and outcomes. A summary of the results will be presented in a tabular form to provide an overview of the programmes with an accompanying narrative summary to address the research questions of this review.DisseminationFindings from this review will be shared using dissemination strategies in partnership with the Sibling Youth Advisory Council. We will share the findings with key stakeholders such as healthcare providers, researchers, and patient and family advocacy groups.