A protocol for the formative evaluation of the implementation of patient-reported outcome measures in child and adolescent mental health services as part of a learning health system.

BACKGROUND: Mental health conditions affect one in seven young people and research suggests that current mental health services are not meeting the needs of most children and youth. Learning health systems are an approach to enhancing services through rapid, routinized cycles of continuous learning and improvement. Patient-reported outcome measures provide a key data source for learning health systems. They have also been shown to improve outcomes for patients when integrated into routine clinical care. However, implementing these measures into health systems is a challenging process. This paper describes a protocol for a formative evaluation of the implementation of patient-reported measures in a newly operational child and adolescent mental health centre in Calgary, Canada. The purpose is to optimize the collection and use of patient-reported outcome measures. Our specific objectives are to assess the implementation progress, identify barriers and facilitators to implementation, and explore patient, caregivers and clinician experiences of using these measures in routine clinical care. METHODS: This study is a mixed-methods, formative evaluation using the Consolidated Framework for Implementation Research. Participants include patients and caregivers who have used the centre's services, as well as leadership, clinical and support staff at the centre. Focus groups and semi-structured interviews will be conducted to assess barriers and facilitators to the implementation and sustainability of the use of patient-reported outcome measures, as well as individuals' experiences with using these measures within clinical care. The data generated by the patient-reported measures over the first five months of the centre's operation will be analyzed to understand implementation progress, as well as validity of the chosen measures for the centres' population. DISCUSSION: The findings of this evaluation will help to identify and address the factors that are affecting the successful implementation of patient-reported measures at the centre. They will inform the co-design of strategies to improve implementation with key stakeholders, which include patients, clinical staff, and leadership at the centre. To our knowledge, this is the first study of the implementation of patient-reported outcome measures in child and adolescent mental health services and our findings can be used to enhance future implementation efforts in similar settings.

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.

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.

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.

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.

Health care service for families with children at early risk of developmental delay: an All Our Families cohort study.

AIM: This study examined children's health care service use, mothers' workforce participation, and mothers' community engagement based on children's risk of developmental delay. METHOD: We used data from the All Our Families study, a prospective pregnancy cohort. Ages and Stages Questionnaire (ASQ) scores at year 2 indicated risk of developmental delay. To investigate the impact of risk of developmental delay when children were not diagnosed, a sensitivity analysis excluded reports of neurodevelopmental disorder (NDD) diagnosis at year 3. Outcomes were maternal reports of children's health and allied health visits (and estimated costs), and maternal workforce participation and community engagement from year 2 to 3. RESULTS: Among 1314 mother-child dyads, 209 (16%) children were classified as being at risk of developmental delay by the ASQ, and 42 (3%) had a reported diagnosis of NDD. Risk of developmental delay was related to increased use of allied health care services (incidence risk ratio 5.04 [year 3]; 95% confidence interval 2.49-10.2) and health visits (incidence risk ratio 1.33 [year 3]; 95% confidence interval 1.14-1.54). The average expected allied health costs were greater for children at risk versus not at risk of developmental delay. However, when excluding children with reported diagnoses of an NDD from this analysis, increased service use and costs in the remaining at-risk population were not observed. Community engagement and workplace participation among families did not differ on the basis of risk of developmental delay. INTERPRETATION: These results suggest increased health care service use by families of children at risk of developmental delay is driven by those receiving a diagnosis of an NDD in the subsequent year. WHAT THIS PAPER ADDS: Early developmental delay risk was related to health care service use and costs. Diagnosis of neurodevelopmental disorder drove increased health care service use and costs. Early developmental delay risk did not relate to parental workforce participation. Early developmental delay risk did not relate to community engagement participation.

SERVICIO DE ATENCIÓN MÉDICA PARA FAMILIAS CON NIÑOS EN RIESGO TEMPRANO DE RETRASO EN EL DESARROLLO: UN ESTUDIO DE COHORTE DE TODAS NUESTRAS FAMILIAS: OBJETIVO: Este estudio examinó el uso del servicio de atención médica de los niños en riesgo de retraso en el desarrollo, y a su vez la participación de las madres en el mercado laboral y su participación comunitaria basada en el riesgo de los niños de presentar retraso en el desarrollo. MÉTODO: Utilizamos datos del estudio All Our Families, una cohorte de embarazo longitudinal. Las puntuaciones del Cuestionario de edades y etapas (ASQ) a los 2 años se usaron para identificar riesgo de retraso en el desarrollo. Para investigar el impacto del riesgo de retraso del desarrollo cuando los niños no fueron diagnosticados, un análisis de sensibilidad excluyó los informes de diagnóstico de trastornos del neurodesarrollo (NDD) a los 3 años. Los resultados se recolectaron de informes maternos de salud infantil y visitas de salud a diferentes profesionales de la salud (y costos estimados), y la participación materna en el mercado laboral y la participación materna en la comunidad entre el 2 a 3 año de vida de sus hijos. RESULTADOS: Entre 1.314 díadas madre-hijo, 209 (16%) niños fueron clasificados como en riesgo de retraso en el neurodesarrollo por el ASQ, y 42 (3%) tenían un diagnóstico informado de NDD. El riesgo de retraso en el desarrollo se relacionó con un mayor uso de servicios de atención médica por diversos profesionales de la salud (incidencia cociente de riesgos 5.04 [año 3]; Intervalo de confianza del 95% 2.49-10.2) y visitas de salud (riesgo de incidencia relación 1,33 [año 3]; 95% intervalo de confianza 1.14-1.54). La proyección de los costos promedio de salud aliada esperada fueron mayores para los niños en riesgo versus no en riesgo de retraso en el desarrollo. Sin embargo, al excluir a los niños con diagnósticos informados de un NDD de este análisis, no se observaron un aumento en el uso del servicio y los costos en la población en riesgo restante. Cuando se comparó la participación en la comunidad y la participación en el mercado laboral entre las familias, los resultados no difirieron en función del riesgo de retraso en el desarrollo de los niños. INTERPRETACIÓN: Estos resultados sugieren que el mayor uso de servicios de atención médica por parte de las familias de los niños en riesgo de retraso del desarrollo son impulsados por aquellos que reciben un diagnóstico de NDD en el año siguiente.

SERVIÇOS DE SAÚDE PARA FAMÍLIAS COM CRIANÇAS EM RISCO PRECOCE PARA ATRASO NO DESENVOLVIMENTO: UM ESTUDO DE COORTE TODAS AS NOSSAS FAMÍLIAS: OBJETIVO: Este estudo examinou o uso de serviços de saúde por crianças, participação das mães na força de trabalho, e engajamento das mães na comunidade com base no risco da criança para atraso no desenvolvimento. MÉTODO: Usamos dados do estudo All Our Families, uma coorte prospectiva de gestantes. Os escores no Questionário Idades e Fases (QIF) na idade de 2 anos indicou risco de atraso no desenvolvimento. Para investigar o impacto do risco para atraso no desenvolviemnto quando crianças não tinham diagnóstico, uma análise de sensibilidade excluiu os relatos de desordem neurodesenvolvimental (DND) na idade de 3 anos. Os desfechos foram os relatos maternos sobre a saúde da criança e visitas a serviços de saúde (com custos estimados), e a participação das mães na força de trabalho e engajamento na comunidade nos anos 2 e 3. RESULTADOS: Entre 1314 díades mãe-criança, 209 (16%) crianças foram classificadas como tendo risco para atraso no desenvolvimento, e 42 (3%) tiveram diagnóstico de DND. O risco de atraso no desenvolvimento foi relacionado a um aumento no uso de serviços aliados de saúde (razão do risco de incidência 5,04 [ano 3]; intervalo de confiança a 95% 2,49-10,2) e consultas de saúde (razão do risco de incidência 1,33 [ano 3]; intervalo de confiança a 95% 1,14-1,54). A média esperada dos custos dos serviços aliados de saúde foi maior para crianças de risco versus aquelas sem risco para atraso no desenvolvimento. No entanto, quando excluídas da análise as crianças com diagnóstico reportado de DND, o maior uso dos serviços e custos no restante da população de risco não foram observados. O engajamento na comunidade e participação na força de trabalho entre famílias não diferiu com base no risco para atraso do desenvolvimento. INTERPRETAÇÃO: Os resultados sugerem que o uso aumentado de serviços de saúde por famílias com crianças com risco para atraso no desenvolvimento é causado por aqueles que receberam diagnóstico de DND no ano subsequente.

Generic preference-based health-related quality of life in children with neurodevelopmental disorders: a scoping review.

AIM: To describe how generic preference-based health-related quality of life (HRQoL) instruments have been used in research involving children with neurodevelopmental disorders (NDD). METHOD: A systematic search of nine databases identified studies that used generic preference-based HRQoL instruments in children with NDD. Data extracted following the Preferred Reporting Items for Systematic Review and Meta-Analyses extension for Scoping Review guidelines included type of NDD, instrument used, respondent type, justification, and critical appraisal for these selections. RESULTS: Thirty-six studies were identified: four cost-utility analyses; 15 HRQoL assessments; five economic burden studies; three intervention studies; and nine 'other'. The Health Utilities Index (Mark 2 and Mark 3) and EuroQoL 5D (EQ-5D; three-level EQ-5D, five-level EQ-5D, and the youth version of the EQ-5D) instruments were most frequently used (44% and 31% respectively). The relatively low use of these instruments overall may be due to a lack of psychometric evidence, inconsistency in justification for and lack of clarity on appropriate respondent type and age, and geographical challenges in applying preference weights. INTERPRETATION: This study highlights the dearth of studies using generic preference-based HRQoL instruments in children with NDD. The use of cost-utility analysis in this field is limited and validation of these instruments for children with NDD is needed. The quality of data should be considered before guiding policy and care decisions. WHAT THIS PAPER ADDS: Limited use of generic preference-based health-related quality of life (HRQoL) instruments in studies on children with neurodevelopmental disorders. Only 11% of studies were cost-utility analyses. Inconsistencies in justification for choosing generic preference-based HRQoL instruments and respondent types.

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.

The cost-effectiveness of screening tools used in the diagnosis of fetal alcohol spectrum disorder: a modelled analysis.

BACKGROUND: Fetal Alcohol Spectrum Disorder (FASD) is characterized by physical and neurological abnormalities resulting from prenatal alcohol exposure. Though diagnosis may help improve patient outcomes, the diagnostic process can be costly. Subsequently, screening children suspected of FASD prior to diagnostic testing has been suggested, to avoid administering testing to children who are unlikely to receive a diagnosis. The present study set out to assess the cost-effectiveness of currently recommended FASD screening tools. METHODS: The screenings tools evaluated were chosen from Children's Healthcare Canada's National Screening Toolkit for Children and Youth Identified and Potentially Affected by FASD and include meconium testing of fatty acid ethyl esters (meconium testing) and the neurobehavioral screening tool (NST). An economic model was constructed to assess cost-effectiveness. One-way and probabilistic sensitivity analyses were conducted to assess the robustness of findings. Costs reflect 2017 Canadian dollars and the perspective is the public healthcare system. RESULTS: Both screening tools evaluated resulted in reduced costs and fewer diagnosed years of life than a no screening strategy in which all children suspected of FASD receive diagnostic testing. The model predicts that screening newborns with meconium testing results in a reduced cost of $89,186 per 100 individuals screened and 38 fewer diagnosed years of life by age 18, corresponding to an incremental cost-effectiveness ratio (ICER) of $2359. Screening children with the NST resulted in a reduced cost of $183,895 per 100 individuals screened and 77 fewer diagnosed years of life by age 18, corresponding to an ICER of $2390. CONCLUSION: Findings suggest that screening is associated with less use of healthcare recourses but also fewer years of life with an FASD diagnosis over a no screening strategy. Since diagnosis can be key to children receiving timely and appropriate health and educational services, cost-savings must be weighed against the fewer years of life with a diagnosis associated with screening.

Release of ATP by pre-Bötzinger complex astrocytes contributes to the hypoxic ventilatory response via a Ca2+ -dependent P2Y1 receptor mechanism.

KEY POINTS: The ventilatory response to reduced oxygen (hypoxia) is biphasic, comprising an initial increase in ventilation followed by a secondary depression. Our findings indicate that, during hypoxia, astrocytes in the pre-Bötzinger complex (preBötC), a critical site of inspiratory rhythm generation, release a gliotransmitter that acts via P2Y1 receptors to stimulate ventilation and reduce the secondary depression. In vitro analyses reveal that ATP excitation of the preBötC involves P2Y1 receptor-mediated release of Ca2+ from intracellular stores. By identifying a role for gliotransmission and the sites, P2 receptor subtype, and signalling mechanisms via which ATP modulates breathing during hypoxia, these data advance our understanding of the mechanisms underlying the hypoxic ventilatory response and highlight the significance of purinergic signalling and gliotransmission in homeostatic control. Clinically, these findings are relevant to conditions in which hypoxia and respiratory depression are implicated, including apnoea of prematurity, sleep disordered breathing and congestive heart failure. ABSTRACT: The hypoxic ventilatory response (HVR) is biphasic, consisting of a phase I increase in ventilation followed by a secondary depression (to a steady-state phase II) that can be life-threatening in premature infants who suffer from frequent apnoeas and respiratory depression. ATP released in the ventrolateral medulla oblongata during hypoxia attenuates the secondary depression. We explored a working hypothesis that vesicular release of ATP by astrocytes in the pre-Bötzinger Complex (preBötC) inspiratory rhythm-generating network acts via P2Y1 receptors to mediate this effect. Blockade of vesicular exocytosis in preBötC astrocytes bilaterally (using an adenoviral vector to specifically express tetanus toxin light chain in astrocytes) reduced the HVR in anaesthetized rats, indicating that exocytotic release of a gliotransmitter within the preBötC contributes to the hypoxia-induced increases in ventilation. Unilateral blockade of P2Y1 receptors in the preBötC via local antagonist injection enhanced the secondary respiratory depression, suggesting that a significant component of the phase II increase in ventilation is mediated by ATP acting at P2Y1 receptors. In vitro responses of the preBötC inspiratory network, preBötC inspiratory neurons and cultured preBötC glia to purinergic agents demonstrated that the P2Y1 receptor-mediated increase in fictive inspiratory frequency involves Ca2+ recruitment from intracellular stores leading to increases in intracellular Ca2+ ([Ca2+ ]i ) in inspiratory neurons and glia. These data suggest that ATP is released by preBötC astrocytes during hypoxia and acts via P2Y1 receptors on inspiratory neurons (and/or glia) to evoke Ca2+ release from intracellular stores and an increase in ventilation that counteracts the hypoxic respiratory depression.

Effect of provincial spending on social services and health care on health outcomes in Canada: an observational longitudinal study.

BACKGROUND: Escalating health care spending is a concern in Western countries, given the lack of evidence of a direct connection between spending and improvements in health. We aimed to determine the association between spending on health care and social programs and health outcomes in Canada. METHODS: We used retrospective data from Canadian provincial expenditure reports, for the period 1981 to 2011, to model the effects of social and health spending (as a ratio, social/health) on potentially avoidable mortality, infant mortality and life expectancy. We used linear regressions, accounting for provincial fixed effects and time, and controlling for confounding variables at the provincial level. RESULTS: A 1-cent increase in social spending per dollar spent on health was associated with a 0.1% (95% confidence interval [CI] 0.04% to 0.16%) decrease in potentially avoidable mortality and a 0.01% (95% CI 0.01% to 0.02%) increase in life expectancy. The ratio had a statistically nonsignificant relationship with infant mortality (p = 0.2). INTERPRETATION: Population-level health outcomes could benefit from a reallocation of government dollars from health to social spending, even if total government spending were left unchanged. This result is consistent with other findings from Canada and the United States.

Using the ages and stages questionnaire in the general population as a measure for identifying children not at risk of a neurodevelopmental disorder.

BACKGROUND: Early detection of neurodevelopmental disorders (NDDs) enables access to early interventions for children. We assess the Ages and Stages Questionnaire (ASQ)'s ability to identify children with a NDD in population data. METHOD: Children 4 to 5 years old in the National Longitudinal Survey of Children and Youth (NLSCY) from cycles 5 to 8 were included. The sensitivity, specificity, positive and negative predictive values were calculated for the ASQ at 24, 27, 30, 33, 36 and 42 months. Fixed effects regression analyses assessed longitudinal associations between domain scores and child age. RESULTS: Specificity for the ASQ was high with 1SD or 2SD cutoffs, indicating good accuracy in detecting children who will not develop a NDD, however the sensitivity varied over time points and cut-offs. Sensitivity for the 1 SD cutoff at 24 months was above the recommended value of 70% for screening. Differences in ASQ domains scores between children with and without NDD increases with age. CONCLUSIONS: The high specificity and negative predictive values of the ASQ support its use in identifying children who are not at the risk of developing a NDD. The capacity of the ASQ to identify children with a NDD in the general population is limited except for the ASQ-24 months with 1SD and can be used to identify children at risk of NDD.

Innovation, productivity, and pricing: Capturing value from precision medicine technology in Canada.

For new technology and innovation such as precision medicine to become part of the solution for the fiscal sustainability of Canadian Medicare, decision-makers need to change how services are priced rather than trying to restrain emerging technologies like precision medicine for short-term cost savings. If provincial public payers shift their thinking to be public purchasers, value considerations would direct reform of the reimbursement system to have prices that adjust with technologically driven productivity gains. This strategic shift in thinking is necessary if Canadians are to benefit from the promised benefits of innovations like precision medicine.

Longitudinal analysis of the association between removal of dental amalgam, urine mercury and 14 self-reported health symptoms.

BACKGROUND: Mercury vapor poses a known health risk with no clearly established safe level of exposure. Consequently there is debate over whether the level of prolonged exposure to mercury vapor from dental amalgam fillings, combining approximately 50% mercury with other metals, is sufficiently high to represent a risk to health. The objective of our study is to determine if mercury exposure from amalgam fillings is associated with risk of adverse health effects. METHODS: In a large longitudinal non-blind sample of participants from a preventative health program in Calgary, Canada we compared number of amalgam fillings, urine mercury measures and changes in 14 self-reported health symptoms, proposed to be mercury dependent sub-clinical measures of mental and physical health. The likelihood of change over one year in a sample of persons who had their fillings removed was compared to a sample of persons who had not had their fillings removed. We use non-parametric statistical tests to determine if differences in urine mercury were statistically significant between sample groups. Logistic regression models were used to estimate the likelihood of observing symptom improvement or worsening in the sample groups. RESULTS: At baseline, individuals with dental amalgam fillings have double the measured urine mercury compared to a control group of persons who have never had amalgam fillings. Removal of amalgam fillings decreases measured urine mercury to levels in persons without amalgam fillings. Although urine mercury levels in our sample are considered by Health Canada to be too low to pose health risks, removal of amalgam fillings reduced the likelihood of self-reported symptom deterioration and increased the likelihood of symptom improvement in comparison to people who retained their amalgam fillings. CONCLUSIONS: Our findings suggest that mercury exposure from amalgam fillings adversely impact health and therefore are a health risk. The use of safer alternative materials for dental fillings should be encouraged to avoid the increased risk of health deterioration associated with unnecessary exposure to mercury.

Needs of children with neurodevelopmental disorders and medical complexity: Caregiver perspectives.

BACKGROUND: Caregivers of children with neurodevelopmental disorders and medical complexities (NDD-MC) coordinate care across complex multisectoral systems. Often NDD-MC children have complex behaviors, however there is limited information on coordination needs for families. AIM: The objective of this mixed methods study was to understand the needs of families with NDD-MC children. METHODS AND PROCEDURES:  This sequential exploratory study obtained the perspectives of 67 caregivers of NDD-MC children using semi-structured interviews and validated questionnaires to measure family quality of life, care integration, and resource use. An adapted model using Maslow's hierarchy of needs was integrated, to understand the impacts of caregiving on quality of life. OUTCOMES AND RESULTS: Lack of support in caring for NDD-MC children negatively impacted family quality of life, resulting in various unmet needs, including caregiver burden, behavioural challenges, financial losses, and mental health issues. Caregivers dealt with a fragmented healthcare system that offered limited support to address coordination challenges. CONCLUSIONS AND IMPLICATIONS: The implementation of a needs-based care coordination program is recommended to consider the health, educational, and social needs of NDD-MC children and their families. Effective care for children with complex needs should tailor support for families using Maslow's hierarchy to enhance quality of life.

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.

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.