Measure what matters: considerations for outcome measurement of care coordination for children with neurodevelopmental disabilities and medical complexity.

Introduction: Care Coordination (CC) is a significant intervention to enhance family's capacity in caring for children with neurodevelopmental disability and medical complexity (NDD-MC). CC assists with integration of medical and behavioral care and services, partnerships with medical and community-based supports, and access to medical, behavioral, and educational supports and services. Although there is some consensus on the principles that characterize optimal CC for children with NDD-MC, challenges remain in measuring and quantifying the impacts of CC related to these principles. Two key challenges include: (1) identification of measures that capture CC impacts from the medical system, care provider, and family perspectives; and (2) recognition of the important community context outside of a hospital or clinical setting. Methods: This study used a multilevel model variant of the triangulation mixed methods design to assess the impact of a CC project implemented in Alberta, Canada, on family quality of life, resource use, and care integration at the broader environmental and household levels. At the broader environmental level, we used linked administrative data. At the household level we used quantitative pre-post survey datasets, and aggregate findings from qualitative interviews to measure group-level impacts and an embedded multiple-case design to draw comparisons, capture the nuances of children with NDD-MC and their families, and expand on factors driving the high variability in outcome measures. Three theoretical propositions formed the basis of the analytical strategy for our case study evidence to explore factors affecting the high variability in outcome measures. Discussion: This study expanded on the factors used to measure the outcomes of CC and adds to our understanding of how CC as an intervention impacts resource use, quality of life, and care integration of children with NDD-MC and their families. Given the heterogeneous nature of this population, evaluation studies that account for the variable and multi-level impacts of CC interventions are critical to inform practice, implementation, and policy of CC for children with NDD-MC.

An eHealth Program for Insomnia in Children With Neurodevelopmental Disorders (Better Nights, Better Days): Protocol for an Economic Evaluation of a Randomized Controlled Trial.

BACKGROUND: Children with neurodevelopmental disorders have a high risk of sleep disturbances, with insomnia being the most common sleep disorder (ie, chronic and frequent difficulties with going and staying asleep). Insomnia adversely affects the well-being of these children and their caregivers. Pediatric sleep experts recommend behavioral interventions as the first-line treatment option for children. Better Nights, Better Days for Children with Neurodevelopmental Disorders (BNBD-NDD) is a 5-session eHealth behavioral intervention delivered to parents to improve outcomes (eg, Pediatric Quality of Life Inventory [PedsQL]) for their children (ages 4-12 years) with insomnia and who have a diagnosis of mild to moderate attention-deficit/hyperactivity disorder, autism spectrum disorder, cerebral palsy, or fetal alcohol spectrum disorder. If cost-effective, BNBD-NDD can be a scalable intervention that provides value to an underserved population. OBJECTIVE: This protocol outlines an economic evaluation conducted alongside the BNBD-NDD randomized controlled trial (RCT) that aims to assess its costs, efficacy, and cost-effectiveness compared to usual care. METHODS: The BNBD-NDD RCT evaluates the impacts of the intervention on children's sleep and quality of life, as well as parents' daytime functioning and psychosocial health. Parent participants were randomized to the BNBD-NDD treatment or to usual care. The economic evaluation assesses outcomes at baseline and 8 months later, which include the PedsQL as the primary measure. Quality of life outcomes facilitate the comparison of competing interventions across different populations and medical conditions. Cost items include the BNBD-NDD intervention and parent-reported usage of private and publicly funded resources for their children's insomnia. The economic evaluation involves a reference case cost-effectiveness analysis to examine the incremental cost of BNBD-NDD per units gained in the PedsQL from the family payer perspective and a cost-consequence analysis from a societal perspective. These analyses will be conducted over an 8-month time horizon. RESULTS: Research funding was obtained from the Kids Brain Health Network in 2015. Ethics were approved by the IWK Health Research Ethics Board and the University of Calgary Conjoint Health Research Ethics Board in January 2019 and June 2022, respectively. The BNBD-NDD RCT data collection commenced in June 2019 and ended in April 2022. The RCT data are currently being analyzed, and data relevant to the economic analysis will be analyzed concurrently. CONCLUSIONS: To our knowledge, this will be the first economic evaluation of an eHealth intervention for insomnia in children with neurodevelopmental disorders. This evaluation's findings can inform users and stakeholders regarding the costs and benefits of BNBD-NDD. TRIAL REGISTRATION: ClinicalTrial.gov NCT02694003; https://clinicaltrials.gov/study/NCT02694003. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/46735.

Health care impact of implementing a clinical pathway for acute care of pediatric concussion: a stepped wedge, cluster randomised trial.

OBJECTIVES: To test the effects of actively implementing a clinical pathway for acute care of pediatric concussion on health care utilization and costs. METHODS: Stepped wedge, cluster randomized trial of a clinical pathway, conducted in 5 emergency departments (ED) in Alberta, Canada from February 1 to November 30, 2019. The clinical pathway emphasized standardized assessment of risk for persistent symptoms, provision of consistent information to patients and families, and referral for outpatient follow-up. De-identified administrative data measured 6 outcomes: ED return visits; outpatient follow-up visits; length of ED stay, including total time, time from triage to physician initial assessment, and time from physician initial assessment to disposition; and total physician claims in an episode of care. RESULTS: A total of 2878 unique patients (1164 female, 1713 male) aged 5-17 years (median 11.00, IQR 8, 14) met case criteria. They completed 3009 visits to the 5 sites and 781 follow-up visits to outpatient care, constituting 2910 episodes of care. Implementation did not alter the likelihood of an ED return visit (OR 0.77, 95% CI 0.39, 1.52), but increased the likelihood of outpatient follow-up visits (OR 1.84, 95% CI 1.19, 2.85). Total length of ED stay was unchanged, but time from physician initial assessment to disposition decreased significantly (mean change - 23.76 min, 95% CI - 37.99, - 9.52). Total physician claims increased significantly at only 1 of 5 sites. CONCLUSIONS: Implementation of a clinical pathway in the ED increased outpatient follow-up and reduced the time from physician initial assessment to disposition, without increasing physician costs. Implementation of a clinical pathway can align acute care of pediatric concussion more closely with existing clinical practice guidelines while making care more efficient. TRIAL REGISTRATION: ClinicalTrials.gov NCT05095012.

ABSTRAIT: OBJECTIFS: Mettre à l'essai les effets de la mise en œuvre active d'une voie clinique pour le traitement aigu des commotions cérébrales chez les enfants sur l'utilisation et les coûts des soins de santé. MéTHODES: Essai randomisé en grappes d'une voie clinique, échelonné, mené dans cinq services d'urgence en Alberta, au Canada, du 1 février au 30 novembre 2019. Le cheminement clinique mettait l'accent sur l'évaluation normalisée du risque de symptômes persistants, la fourniture de renseignements uniformes aux patients et aux familles, et l'aiguillage vers un suivi externe. Les données administratives dépersonnalisées ont permis de mesurer six résultats : visites de retour à l'urgence; visites de suivi en clinique externe; durée du séjour à l'urgence, y compris le temps total. le temps entre le triage et l'évaluation initiale du médecin, et le temps entre l'évaluation initiale du médecin et la décision; et le nombre total de demandes de remboursement du médecin dans un épisode de soins. RéSULTATS: Un total de 2878 patients uniques (1164 femmes, 1713 hommes) âgés de 5 à 17 ans (médiane 11,00, IQR 8, 14) répondaient aux critères de cas. Ils ont effectué 3009 visites aux 5 sites et 781 visites de suivi aux soins ambulatoires, ce qui représente 2910 épisodes de soins. La mise en œuvre n'a pas modifié la probabilité d'une visite de retour à l'urgence (RC 0,77, IC à 95 %, 0,39, 1,52), mais a augmenté la probabilité de visites de suivi en clinique externe (RC 1,84, IC à 95 %, 1,19, 2,85). La durée totale du séjour à l'urgence est demeurée inchangée, mais le temps écoulé entre l'évaluation initiale du médecin et la décision a diminué considérablement (changement moyen : -23,76 minutes, IC à 95 %, -37,99, -9,52). Le nombre total de demandes de règlement de médecins a augmenté de façon significative à seulement 1 site sur 5. CONCLUSIONS: La mise en œuvre d'un cheminement clinique à l'urgence a augmenté le suivi des patients externes et réduit le temps entre l'évaluation initiale du médecin et son élimination, sans augmenter les coûts des médecins. La mise en œuvre d'un cheminement clinique peut harmoniser davantage les soins de courte durée en cas de commotion cérébrale pédiatrique avec les lignes directrices de pratique clinique existantes tout en rendant les soins plus efficaces. ENREGISTREMENT D'ESSAI: ClinicalTrials.gov NCT05095012.

Factors affecting implementation of patient-reported outcome and experience measures in a pediatric health system.

BACKGROUND: The use of patient-reported outcome measures (PROMs) and patient-reported experience measures (PREMs) in pediatric clinical practice can enhance clinical care and bring children and families' perspectives into evaluations of healthcare services. Implementing these measures is complex and requires a thorough assessment of the context of implementation The purpose of this study is to describe the barriers and facilitators to PROMs and PREMs implementation and to recommend strategies for implementing these measures in a pediatric health system. METHODS: We used a qualitative descriptive approach to analyse data from interviews to understand the experiences of PROMs and PREMs users across different pediatric settings in a single Canadian healthcare system. RESULTS: There were 23 participants representing a variety of roles within the healthcare system and pediatric populations. We found five main factors that affected implementation of PROMs and PREMs in pediatric settings: 1) Characteristics of PROMs and PREMs; 2) Individual's beliefs; 3) Administering PROMs and PREMs; 4) Designing clinical workflows; and 5) Incentives for using PROMs and PREMs. Thirteen recommendations for integrating PROMs and PREMs in pediatric health settings are provided. CONCLUSIONS: Implementing and sustaining the use of PROMs and PREMs in pediatric health settings presents several challenges. The information presented will be useful for individuals who are planning or evaluating the implementation of PROMs and PREMs in pediatric settings.

Patient-reported outcome measures used to improve youth mental health services: a systematic review.

BACKGROUND: Patient-reported outcome measures (PROMs) are standardized and validated self-administered questionnaires that assess whether healthcare interventions and practices improve patients' health and quality of life. PROMs are commonly implemented in children and youth mental health services, as they increasingly emphasize patient-centered care. The objective of this study was to identify and describe the PROMs that are currently in use with children and youth living with mental health conditions (MHCs). METHODS: Three databases (MEDLINE, EMBASE, and PsycINFO) were systematically searched that used PROMs with children and youth < 18 years of age living with at least one diagnosed MHC. All methods were noted according to Preferred Reporting Items for Systematic reviews and Meta-Analysis. Four independent reviewers extracted data, which included study characteristics (country, year), setting, the type of MHC under investigation, how the PROMs were used, type of respondent, number of items, domain descriptors, and the psychometric properties. RESULTS: Of the 5004 articles returned by the electronic search, 34 full-texts were included in this review. This review identified both generic and disease-specific PROMs, and of the 28 measures identified, 13 were generic, two were generic preference-based, and 13 were disease-specific. CONCLUSION: This review shows there is a diverse array of PROMs used in children and youth living with MHCs. Integrating PROMs into the routine clinical care of youth living with MHCs could improve the mental health of youth. Further research on how relevant these PROMs are children and youth with mental health conditions will help establish more uniformity in the use of PROMs for this population.

Pan-Canadian caregiver experiences in accessing government disability programs: A mixed methods study.

BACKGROUND: At present, little is known about the factors that contribute to the relatively low uptake of government-funded disability programs in Canada. AIM: Understand how parents/caregivers of Canadian youth with neurodevelopmental disability (NDD) experience the process of applying for and accessing disability programs. METHODS AND PROCEDURES: This mixed methods sequential explanatory study utilized two phases: an online survey (quantitative), followed by semi-structured interviews (qualitative). The quantitative phase gathered sociodemographic information and preliminary information about participant experiences applying for and accessing programs. The qualitative phase provided greater depth by asking participants to describe barriers and facilitators to program access. OUTCOMES AND RESULTS: 499 participants completed the online survey and 81 participants completed an interview. Analysis of survey data revealed that many participants are not accessing disability programs and experience difficulty when applying. Regression analyses revealed that factors relating to the process of applying and applicant/family attributes are significantly associated with program access. Inductive thematic analysis of interview data revealed four barriers and three facilitators to access. Integration of findings provided an overview of the multi-faceted journey to program access. CONCLUSIONS AND IMPLICATIONS: The results of this study highlight policy changes that are needed to ensure disability programs adequately support Canadian families.

Employment, Education, and Income for Canadians with Developmental Disability: Analysis from the 2017 Canadian Survey on Disability.

This study assessed needs and outcomes for people with developmental disability (DD) to understand the socioeconomic status of this group prior to implementation of the Accessible Canada Act in June 2019. The 2017 Canadian Survey on Disability (CSD) was used to analyze data for a sample of individuals with self-reported disability. Data related to employment, education, income, housing, caregivers, and use of government benefits is reported. Compared to the general Canadian public, persons with DD are less likely to: finish high-school or post-secondary education; participate in the labor force or be employed; and earn on average less/year in total income. To align with recent accessibility legislation, significant progress is needed to address disparities for people with DD.

Youth engagement in mental health research: A systematic review.

INTRODUCTION: Patient engagement in youth mental health research has the potential to inform research on the interventions, services and policies that will benefit youth. At present, there is little evidence to guide mental health researchers on youth engagement. This systematic review aims to describe the impacts of youth engagement on mental health research and to summarize youth engagement in mental health research. METHODS: We searched the following databases: MEDLINE, EMBASE and PsycINFO, using a combination of subject headings, keywords and synonyms for the concepts 'patient engagement', 'youth' and 'mental health'. Articles that described engaging youth in mental health research were included. Two reviewers performed the study selection. Study characteristics, research activities performed by youth, impacts of youth engagement, challenges, and facilitators to engagement and recommendations for youth engagement described by authors were extracted. Quality appraisal involved determining the level of engagement of youth and the stage(s) of research where youth were involved. RESULTS: The database search returned 2836 citations, 151 full-text articles were screened and 16 articles, representing 14 studies, were selected for inclusion. Youth were involved at nearly all stages of the research cycle, in either advisory or co-production roles. Youth engagement impacts included enhancing relevant research findings, data collection and analysis and dissemination to academic and stakeholder audiences. Both youth and academic researchers reported personal development across many domains. One negative impact reported was the increase in funding and resources needed for engagement. We produced a list of 35 recommendations under the headings of training, youth researcher composition, strategy, expectations, relationships, meeting approaches and engagement conditions. CONCLUSIONS: This study provides an understanding of the impacts and recommendations of youth engagement in mental health research. The findings from this study may encourage researchers to engage youth in their mental health research and support youth engagement in funding applications. PATIENT AND PUBLIC CONTRIBUTION: We consulted three youths with experience being engaged in mental health research about the review findings and the discussion. One youth designed a visual representation of the results and provided feedback on the manuscript. All youth's input informed the way the findings were presented and the focus of the discussion.

Longitudinal trends in incidence and health care use for pediatric concussion in Alberta, Canada.

BACKGROUND: We described longitudinal trends in the incidence of episodes of care (EOC) and follow-up care for pediatric concussion in relation to age, sex, rurality of patient residence, point of care, and area-based socioeconomic status (SES) in Alberta, Canada. METHODS: A retrospective population-based cohort study was conducted using linked, province-wide administrative health data for all patients <18 years of age who received a diagnosis of concussion, other specified injuries of head, unspecified injury of head, or post-concussion syndrome between April 1, 2004 and March 31, 2018. Data were geospatially mapped. RESULTS: Concussion EOCs increased 2.2-fold over the study period, follow-up visits 5.1-fold. Care was increasingly received in physician office (PO) settings. Concussion diagnoses in rural and remote areas occurred in emergency department (ED) settings more often than in metro centres or urban areas (76%/75% vs. 52%/60%). Proportion of concussion diagnoses was positively related to SES and age. Diagnosis and point of care varied geographically. CONCLUSIONS: The shift in care to PO settings, increased incidence of all diagnoses, and the higher use of the ED by some segments of the population all have important implications for appropriate clinical management and the efficient provision of health care for pediatric concussion. IMPACT: This is the first study to use EOC to describe longitudinal trends in incidence and follow-up care for pediatric concussion in relation to age, sex, rurality, point of care, and area-based SES. We report increased incidence of concussion in both emergency and outpatient settings and the proportion of diagnoses was positively related to SES and age. Patients increasingly received care for concussion in PO over time. Geospatial mapping indicated that the incidence of concussion and unspecified injury of head varied geographically and temporally. Results have important implications for appropriate clinical management and efficient provision of health care following pediatric concussion.

Income assistance use among young adults who were in British Columbia special education: A longitudinal cohort study.

BACKGROUND: Persons with disability (PWD) experience disproportionately high poverty rates in Canada. This trend is apparent especially among youth compared to those who develop disabilities later in life. PWD in poverty have additional needs that increase barriers to full participation in society and translate to higher basic costs for daily living. Despite the existence of income assistance programs in Canada to mitigate income inequalities faced by PWDs, access to these programs can be limited. OBJECTIVE: To describe use of income assistance for young adults with disability in British Columbia for the development of potential approaches to improve realized access to these programs. METHODS: We conducted a population-based retrospective cohort study using British Columbia linked administrative data. We described differences in income assistance use among PWD by the level of special education funding received during primary school education (from most to least; Level 1, Level 2, Level 3, Unfunded, and no special education) and family composition. We also provided longitudinal patterns of income assistance use. RESULTS: Of 218,324 young adults, 88% received no special education, 0.1% used Level One, 1.6% used Level Two, 2.9% used Level Three, and 7.1% used Unfunded special education coding. Young adults with Level One special education funding had the highest rates of hospitalizations and continuing care, with no hospitalization due to homelessness. Those with Level Three special education coding had higher rates of hospitalization and hospitalization due to homelessness than Level Two young adults. When transitioning to adulthood initially, Level One and Two funded individuals used relatively more disability income assistance than individuals from the other funding levels. Nearly all BCEA users with higher funded special education codes used this disability-specific program, while lesser funded special education codes used the Temporary Assistance more frequently, for a longer duration and were more likely to be persistent Temporary Assistance users. CONCLUSIONS: Sustainable and reliable access to income assistance programs remains an issue across the heterogeneity of needs faced by young adults with disability.

Parent-therapist partnership to ELEVATE gross motor function in children with perinatal stroke: protocol for a mixed methods randomized controlled trial.

BACKGROUND: There is increasing evidence for early, active rehabilitation to enhance motor function following early brain injury. This is clear for interventions targeting the upper extremity, whereas passive treatment approaches for the lower extremity persist. The purpose of this trial is to evaluate the effectiveness of early, intensive rehabilitation targeting the lower extremity and delivered in a parent-therapist partnership model for children with perinatal stroke. METHODS: We describe a protocol for a waitlist-control, single-blind, mixed methods effectiveness randomized controlled trial, with an embedded qualitative study using interpretative description. Participants are children with perinatal stroke aged eight months to three years with signs of hemiparesis. Participants will be randomly allocated to an immediate ELEVATE (Engaging the Lower Extremity Via Active Therapy Early) intervention group, or a waitlist-control group, who will receive usual care for six months. The ELEVATE intervention involves one hour of training four days per week for 12 weeks, with a pediatric therapist and a parent or guardian each delivering two sessions per week. The intervention targets the affected lower extremity by progressively challenging the child while standing and walking. The primary outcome measure is the Gross Motor Function Measure-66. Secondary outcomes include the Pediatric Quality of Life Inventory™, Young Children's Participation and Environment Measure, and an instrumented measure of spasticity. A cost-effectiveness analysis and qualitative component will explore benefit to costs ratios and parents' perspectives of early, intensive rehabilitation, and their role as a partner in the rehabilitation, respectively. DISCUSSION: This study has the potential to change current rehabilitation for young children with perinatal stroke if the ELEVATE intervention is effective. The parent interviews will provide further insight into benefits and challenges of a partnership model of rehabilitation. The mixed methods design will enable optimization for transfer of this collaborative approach into physical therapy practice. TRIAL REGISTRATION: ClinicalTrials.gov NCT03672864 . Registered 17 September 2018.

The transition to adult income supports for youth that received special education in British Columbia, Canada: A cohort study.

Youth in special education have complex needs that are supported across multiple systems. Our research investigates the use of adult income assistance, as one structure that supports youth as they transition to adulthood. We created a cohort of youth (5-22 years old) using linked administrative data from British Columbia government ministries from 1996 to 2018. Youth were grouped by their special education funding (most to least; Level 1, Level 2, Level 3, Unfunded, and no special education). We investigated (1) youth characteristics and service use patterns, (2) which youth used income supports after the child-to-adult transition (19-22 years old), and what youth characteristics and service use patterns were associated with use, and (3) how much income support they used (CAD$). Of 174,527 youth, 254 (0.1%) were Level 1, 6020 (3.4%) were Level 2, 4409 (2.5%) were Level 3, 21,232 (12.2%) were Unfunded, and 142,612 (81.7%) were not in special education. Youth assigned higher funding levels, compared to lower levels, generally had increased service use, and in the transition to adult services were more likely to use income supports, and received more income support. An important exception was youth with serious behavioural/mental health special education funding (Level 3), who had increased service use for their level of funding, but received less income support due to a reliance on Temporary versus Disability Assistance. Youth that received an accredited diploma were less likely to use income supports. Factors related to the use of income supports are further described. This study highlights differences in access to income support when youth transition to adult services and considerations around equitable access to support.

Budget Impact Analysis of an Epigenetic Test Used for Diagnosing Fetal Alcohol Spectrum Disorder from the Perspective of a Laboratory Budget Holder in Manitoba, Canada.

BACKGROUND AND AIMS: Fetal alcohol spectrum disorder (FASD) is a condition that results from prenatal alcohol exposure. Though diagnosis is important for individuals with FASD to receive appropriate care, diagnosis can be difficult to obtain. Accurate diagnoses can be impeded because of an inability to confirm prenatal alcohol exposure. This is particularly problematic in instances when family cannot confirm prenatal alcohol exposure. DNA methylation testing represents a novel approach to identifying prenatal alcohol exposure via epigenetic biomarkers. The objective was to assess the impact on laboratory expenditures from adopting DNA methylation additively to the diagnostic workup for patients suspected of having FASD for whom prenatal alcohol exposure cannot be otherwise confirmed. METHODS: A budget impact model was developed that incorporates laboratory cost data, population data for Manitoba Canada, literature, and expert opinion. Probabilistic analysis was conducted for the primary analysis and deterministic sensitivity analyses were conducted to assess the sensitivity of the budget impact to changes in model parameters. The perspective of the present study is that of the laboratory budget holder at a centralized laboratory in Manitoba, Canada. RESULTS: Over a 5-year period, it was estimated that there would be 500 DNA methylation tests and the predicted budget impact to the laboratory budget holder was $207,574 (95% credible interval: 70,208-408,161) in Canadian dollars (CAD). Over a 10-year period, it was estimated that there would be 1017 DNA methylation tests and the predicted budget impact to the laboratory budget holder was CAD$439,470 (95% credible interval: 148,902-867,328). CONCLUSIONS: Findings provide insight into the impact that DNA methylation testing would have on laboratory budgets if used in the diagnostic workup for FASD in individuals for whom prenatal alcohol exposure cannot be confirmed otherwise.

Acceptability of employment readiness measures in youth and young adults on the autism spectrum: a mixed-methods study.

PURPOSE: Reliable, valid, and pragmatic measures are essential for monitoring and evaluating employment readiness and comparing the effectiveness of alternative implementation strategies. The Work Readiness Inventory (WRI) and Ansell-Casey Life Skills Assessment (ACLSA) are valid measures of employment readiness in neurotypical populations; however, their acceptability (i.e., user perception of measure as agreeable/satisfactory) for persons on the autism spectrum is not yet known. This investigation assesses the acceptability of the WRI and a modified ACLSA (ACLSA-M) in measuring employment readiness in youth/young adults on the spectrum. METHODS: A concurrent triangulation mixed-methods study design utilizing quantitative pre-post measurement of a community-based employment readiness program alongside qualitative survey assessment was employed to determine concurrent acceptability. For robustness, further explication through peer debriefing of experts evaluated the retrospective acceptability via interview and acceptability-rate assessment. RESULTS: Findings indicated that both measures are acceptable, although individual- and job-specific item modifications are advised, particularly due to disability-specific needs. Significant change in employment readiness in youth/young adults on the spectrum supports concurrent acceptability. Peer debriefing provided rich data on retrospective acceptability. Acceptability-rates of 0.84 and 0.91 confirm broad acceptability of these measures. CONCLUSIONS: Implications are presented for clinicians and researchers, highlighting the relevance for autism-specific measurement development and acceptability.Implications for rehabilitationGiven the lower labor force participation of persons on the autism spectrum, a combination of measures should be used in the assessment of an individual's employment readiness.In youth and young adults on the spectrum, employment readiness can be measured using the Work Readiness Inventory (WRI) and a modified version of the Ansell-Casey Life Skills Assessment (ACLSA-M).In clinical practice and research, modifying the contents of these measures may be advised to minimize language complexity, and maximize ease in self report.When designing, developing, and testing new measures in rehabilitation practice or research, the intent should be broadened by involving diverse representation from the project outset, by engaging both those on the spectrum and neurotypical populations.

Factors associated with follow-up care after pediatric concussion: A longitudinal population-based study in Alberta, Canada.

Background: Concussion is a common injury in children and adolescents. Current best practice guidelines indicate that recovery should be supervised through recurrent follow-up visits. A more detailed understanding of the system-level and individual factors that are associated with follow-up care is a critical step towards increasing evidence-based practice. The objective of this study was to identify predisposing, enabling, and need-based factors associated with follow-up care after pediatric concussion. Materials and methods: A retrospective population-based cohort study was conducted using linked, province-wide administrative health data for all patients <18 years of age with a diagnosis of concussion, other specified injuries of the head, unspecified injury of head, or post-concussion syndrome (PCS) between April 1, 2004 and March 31, 2018 in Alberta, Canada. The association between predisposing, enabling, and need-based factors and the receipt of follow-up care within a defined episode of care (EOC) was analyzed using logistic regression models for the entire cohort and for EOC that began with a concussion diagnosis. Predisposing factors included age and sex. Enabling factors included the community type of patient residence, area-based socioeconomic status (SES), and visit year. Need-based factors included where the EOC began (outpatient vs. emergency settings) and history of previous concussion-related EOC. Results: 194,081 EOCs occurred during the study period but only 13% involved follow-up care (n = 25,461). Males and adolescents were more likely to receive follow-up care. Follow-up was less likely among patients who lived in remote communities or in areas of lower SES, while EOCs beginning in 2011 or later were more likely to involve follow-up care. Patients whose EOC began in outpatient settings, had more than one EOC, or a diagnosis of concussion were more likely to receive follow-up care. Conclusion: Follow-up care for pediatric concussion has increased over time and is associated with patient age and sex, history of concussion-related EOC, where a patient lives (community type and area-based SES), and when and where the index visit occurs. A better understanding of which children are more likely to receive follow-up care, as well as how and when they do, is an important step in aligning practice with follow-up guidelines.

Cross-ministry data on service use and limitations faced by children in special education.

BACKGROUND: Children with disabilities often face limitations that cross support sectors. OBJECTIVE: Our aim was to measure cross-ministry service use, outcomes, and functional limitations faced by children who qualified for special education. METHODS: We used longitudinal British Columbia ministry data linked to children (0-18y) registered in K-12 education. Children were grouped by special education funding (most to least; Level 1, Level 2, Level 3, Unfunded, and no special education), and related to 1) service use patterns, 2) the age they first used disability services, and 3) functional limitations reported in health visits. We also reported how length of special education use related to disability service use. RESULTS: Of 111,274 children, 154(0.1%) were Level 1, 4427(4.0%) Level 2, 2897(2.6%) Level 3, 13472(12.1%) Unfunded, and 90324(81.2%) not in special education. Children with higher funding levels, compared to lower levels of funding, generally were more likely to experience poorer outcomes, have functional limitations, have service needs, and receive early support. One exception was children with serious behavioral/mental health special education coding, which had poorer outcomes for their level of funding. Children received child disability supports early (about half of users started by 4y), but use was mostly limited to those with many years (9+years) of funded special education (70.7% of the all users) and biased to certain special education codes (i.e., Level 1, severe intellectual disability, and autism). CONCLUSIONS: This study provides evidence of the long-term, diverse needs of children in special education and may be used to inform decisions surrounding their support.

Protocol for a cost-utility analysis of neurostimulation and intensive camp-based therapy for children with perinatal stroke and hemiparesis based on a multicentre clinical trial.

INTRODUCTION: Perinatal stroke leads to cerebral palsy (CP) and lifelong disability for thousands of Canadian children. Hemiparesis, referring to impaired functionality in one side of the body, is a common complication of perinatal stroke. Standard long-term care for hemiparetic CP focuses on rehabilitation therapies. Early research suggests that patients with hemiparesis may benefit from adjunctive neuromodulation treatments such as transcranial direct current stimulation (tDCS). tDCS uses electric current to stimulate targeted areas of the brain non-invasively, potentially enhancing the effects of motor learning therapies. This protocol describes an economic evaluation to be conducted alongside a randomised controlled trial (RCT) to assess the incremental cost of tDCS added to a camp-based therapy compared with camp-based therapy alone per quality-adjusted life year (QALY) gained in children with hemiparetic CP. METHODS AND ANALYSIS: The Stimulation for Perinatal Stroke Optimising Recovery Trajectories (SPORT) trial is a multicentre RCT evaluating tDCS added to a 2-week camp-based therapy for children aged 6-18 years with perinatal ischaemic stroke and disabling hemiparetic CP affecting the upper limb. Outcomes are assessed at baseline, 1 week, 2 months and 6 months following intervention. Cost and quality of life data are collected at baseline and 6 months and results will be used to conduct a cost-utility analysis (CUA). The evaluation will be conducted from the perspectives of the public healthcare system and society. The CUA will be conducted over a 6-month time horizon. ETHICS AND DISSEMINATION: Ethical approval for the SPORT trial and the associated economic evaluation has been given by the research ethics boards at each of the study sites. The findings of the economic evaluation will be submitted for publication in a peer reviewed academic journal and submitted for presentation at conference. TRIAL REGISTRATION NUMBER: NCT03216837; Post-results.

Use of family disability service by families with young children with disabilities.

AIM: To investigate which families with young children with disabilities used disability services and when they used services to inform policy on service delivery. METHOD: We used linked administrative data from different ministries in Alberta to describe families' use of disability services when their children were between the ages of 3 and 8 years old. Disability was investigated on the basis of the presence of a severe special education code for children, and level of special education code. The outcome was the use of family disability services. RESULTS: Of 31 346 children, 24 761 (79.0%) had no special education code, 3982 (12.7%) had a mild special education code, and 2603 (8.3%) had a severe special education code. Level of special education code was associated with child characteristics and service use. Children with severe special education codes generally were more likely to report service use and have poor outcomes than those with less severe codes. Of note, 26% of children with severe special education codes used family disability services. In addition, among children with severe special education codes, many years of severe coding (compared with fewer years) had the strongest association with family disability service use (prevalence ratio 5.50; 95% confidence interval 4.10-7.37). Associations with family disability service use were seen with mental health, health care, and educational achievement. Interactions between child characteristics and service use were observed. INTERPRETATION: This study provides evidence that families were more likely to use disability services when they were involved with other services, and that use interacts with various factors. The findings highlight the importance of considering service eligibility, referral, and integration.

Stakeholders' engagement in co-producing policy-relevant knowledge to facilitate employment for persons with developmental disabilities.

BACKGROUND: Persons with developmental disabilities (PWDD) face a number of individual, environmental and societal barriers when seeking employment. Integrated knowledge translation (IKT) involves ongoing and dynamic interactions between researchers and stakeholders for the purpose of engaging in mutually beneficial research to address these types of multi-faceted barriers. There is a knowledge gap in the IKT literature on effective stakeholder engagement strategies outside of the dissemination stage to inform policy. In this paper, we report on a number of engagement strategies employed over a 2-year period to engage a wide range of stakeholders in different stages of an IKT project that aimed to investigate the 'wicked' problem of employment for PWDD. METHOD: Our engagement plan included multiple linked strategies and was designed to ensure the meaningful engagement of, and knowledge co-production with, stakeholders. We held two participatory consensus-building stakeholder policy dialogue events to co-produce knowledge utilising the nominal group technique and the modified Delphi technique. A total of 31 and 49 stakeholders engaged in the first and second events, respectively, from six key stakeholder groups. Focused engagement strategies were employed to build on the stakeholder dialogues for knowledge mobilisation and included a focus group attended only by PWDD, a stakeholder workshop attended only by policy/decision-makers, a webinar attended by human resources professionals and employers, and a current affairs panel attended by the general public. RESULTS: Our findings suggest that the level of engagement for each stakeholder group varies depending on the goal and need of the project. Our stakeholder dialogue findings highlight the inherent challenges in co-framing and knowledge co-production through the meaningful engagement of multiple stakeholders who hold different ideas and interests. Focused outreach is needed to foster relationships and trust for meaningful engagement. CONCLUSIONS: In addition to providing guidance on how to implement adaptable meaningful engagement strategies, these findings contribute to discussions on how IKT projects are planned and funded. More studies to explore effective mechanisms for engaging a wide range of stakeholders in IKT research are needed. More evidence of successful engagement strategies employed by researchers to achieve meaningful knowledge co-production is also key to advancing the discipline.