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.

Exploring paramedic perspectives on emergency medical service (EMS) delivery in Alberta: a qualitative study.

PURPOSE: Emergency Medical Services (EMS) in Alberta are facing critical challenges. This qualitative study aims to describe and understand the frontline perspective regarding system level issues and propose provider-informed policy recommendations. METHODS: 19 semi-structured one-on- one interviews were conducted with Primary or Advanced Care Paramedics (PCP/ACP) across Alberta. Participants were asked to share their perspectives, experiences and recommendations in relation to EMS response times and the working environment. Interviews were analyzed using thematic analysis to identify themes and subthemes. RESULTS: Two core themes were identified as areas of concern: poor response times and the EMS working environment, which each influence and impact the other. Within response times, paramedics highlighted specific difficulties with ED offloading, a lack of resources, low-acuity calls, and rural challenges. In terms of the EMS working environment, four subthemes were apparent including attrition, unhealthy culture, organizational barriers and the need for paramedic empowerment. Providers made many recommendations including creating and expanding emergency mobile integrated health (MIH) branches, sharing 811 and 911 responses, and enforcing ED target offload times amongst other suggestions. CONCLUSIONS: While response times are a key and highly visible problem, there are many critical factors like the EMS working environment that degrade patient care and cause concern amongst frontline practitioners. Multifaceted policy changes are to be explored to reduce disfunction within EMS services, enhance the well-being of the workforce and deliver improved patient care. Specific EMS-oriented policies are important for moving forward to reduce transfers to EDs, but the broader health system which is over capacity is causing downstream effects into EMS must be addressed by government and health administrators.

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.

Care coordination of children with neurodevelopmental disabilities and medical complexity during the COVID-19 pandemic: Caregiver experiences.

BACKGROUND: The COVID-19 pandemic and subsequent public health restrictions created significant challenges for children with neurodevelopmental disabilities with medical complexity and their caregivers including restrictions in care coordination for children and their families. Care coordination enhances families' skills in accessing and coordinating medical, education and disability care across sectors and systems. OBJECTIVE: This study examined the implications of pandemic restrictions on care coordination from caregiver perspectives. These experiences can inform emergency preparedness planning and recovery strategies. METHOD: A qualitative descriptive design was utilized to explore and describe the experience of caregivers of children with neurodevelopmental disabilities and medical complexity. Nineteen caregivers were interviewed about their experience with care coordination during the pandemic. FINDINGS: Caregiver experiences of care coordination during the pandemic highlighted the importance of care coordination during a public health emergency. Two themes emerged: (1) disruptions to care coordination from initial COVID-19 restrictions leading to lack of access to supports and services, increasing level of need, and impacts of disruption for caregivers and children; and (2) adaptation and responsiveness to COVID-19 restrictions by advocating for families and managing uncertainties. RECOMMENDATIONS: Recommendations include recognition of care coordination as a protective factor, designation as an essential service and sustained or increased funding for care coordination during emergencies. Families should be engaged in identifying care needs during care coordination, including during public health emergencies.

Experiences of medical traumatic stress in parents of children with medical complexity.

BACKGROUND AND OBJECTIVES: Parents of children with medical complexity (CMC) experience high levels of stress and adverse mental health outcomes. Pediatric medical traumatic stress (PMTS) could be an important contributor that has not yet been explored. PMTS describes parents' reactions to their child's illness and medical treatment and can lead to post-traumatic stress symptoms. This is the first study to describe the experiences and impact of PMTS among parents of CMC. METHODS: We conducted semi-structured interviews with 22 parents of CMC. Reflexive thematic analysis was used to generate themes that described the experiences of PMTS and potential contributing factors in the healthcare setting. Themes were validated by study participants. RESULTS: Parents experienced a spectrum of events and circumstances that impacted PMTS. These corresponded to three major themes: (a) the distinctive context of being the parent of a CMC, (b) interactions with healthcare providers that can hurt or heal and (c) system factors that set the stage for trauma. The consequences of repeated PMTS were a common point of emphasis among all the themes. Parents identified numerous changes that could mitigate PMTS such as acknowledgement of trauma and provision of proactive mental health support. CONCLUSIONS: Our study highlights the issue of PMTS among parents of CMC and presents opportunities to mitigate their traumatic experiences. Supporting the integration of trauma-informed care practices, increasing awareness of PMTS and advocating for parental mental health services could better support parents and families.

A multi-center, pragmatic, effectiveness-implementation (hybrid I) cluster randomized controlled trial to evaluate a child-oriented goal-setting approach in paediatric rehabilitation (the ENGAGE approach): a study protocol.

BACKGROUND: Child-oriented goal-setting in pediatric rehabilitation may improve child motivation, engagement in therapy, child outcomes related to therapy, and service delivery efficiency. The primary objective of this trial is to determine the effectiveness of a principles-driven, child-focused approach to goal-setting, Enhancing Child Engagement in Goal-Setting (ENGAGE), on pediatric rehabilitation outcomes compared to usual practice. The three secondary objectives are to 1) compare costs and secondary outcomes of the ENGAGE approach to usual practice, 2) determine the influence of child, parent and therapist characteristics on child engagement in therapy and rehabilitation outcomes, and 3) identify barriers and facilitators to the implementation of ENGAGE. METHODS: This research protocol describes a pragmatic, multi-site, cluster, effectiveness-implementation (hybrid type 1 design) randomized controlled trial. Therapists (n = 12 clusters of two therapists) at participating sites (n = 6) will be randomized to 1) the ENGAGE intervention group, or 2) usual care (control) using a computer-generated, permuted-block randomization sequence with site as a stratification variable designed by a statistician (RR). Each therapist will recruit four children 5-12 years old with neurodevelopmental conditions (n = 96), who will receive ENGAGE or usual care, according to therapist group allocation. ENGAGE therapists will be trained to use a 'toolbox' of evidence-driven, theory-informed principles to optimize child and parent motivation, engagement in the goal-setting process, and performance feedback strategies. Outcomes include goal performance (primary outcome), engagement in therapy, functional abilities, participation, and parent and child quality of life. Qualitative interviews with children, parents, ENGAGE therapists, and managers will explore challenges to implementation and potential mitigation strategies. Mixed effects multiple linear regression models will be developed for each outcome to assess group differences adjusted for clustering. A cost-effectiveness analysis will combine cost and a measure of effectiveness into an incremental cost-effectiveness ratio. Qualitative data on implementation will be analyzed inductively (thematic analysis) and deductively using established implementation science frameworks. DISCUSSION: This study will evaluate the effects of collaborative goal-setting in pediatric rehabilitation and inform effective implementation of child-focused goal-setting practices. TRIAL REGISTRATION: NCT05017363 (registered August 23, 2021 on ClinicalTrials.gov).

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.

"What is the actual goal of the pathway?": examining emergency department physician and nurse perspectives on the implementation of a pediatric concussion pathway using the theoretical domains framework.

BACKGROUND: Multiple evidence-based clinical practice guidelines (CPGs) exist to guide the management of concussion in children, but few have been translated into clinical pathways (CP), which operationalize guidelines into accessible and actionable algorithms that can be more readily implemented by health care providers. This study aimed to identify the clinical behaviours, attitudinal factors, and environmental contexts that potentially influence the implementation of a clinical pathway for pediatric concussion. METHODS: Semi-structured interviews were conducted from October 2017 to January 2018 with 42 emergency department clinicians (17 physicians, 25 nurses) at five urban emergency departments in Alberta, Canada. A Theoretical Domains Framework (TDF)-informed interview guide contained open-ended questions intended to gather feedback on the proposed pathway developed for the study, as well as factors that could potentially influence its implementation. RESULTS: The original 14 domains of the TDF were collapsed into 6 clusters based on significant overlap between domains in the issues discussed by clinicians: 1) knowledge, skills, and practice; 2) professional roles and identity; 3) attitudes, beliefs, and motivations; 4) goals and priorities; 5) local context and resources; and 6) engagement and collaboration. The 6 clusters identified in the interviews each reflect 2-4 predominant topics that can be condensed into six overarching themes regarding clinicians' views on the implementation of a concussion CP: 1) standardization in the midst of evolving research; 2) clarifying and communicating goals; 3) knowledge dissemination and alignment of information; 4) a team-oriented approach; 5) site engagement; and 6) streamlining clinical processes. CONCLUSION: Application of a comprehensive, evidence-based, and theory-driven framework in conjunction with an inductive thematic analysis approach enabled six themes to emerge as to how to successfullly implement a concussion CP.

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.

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.

An implementation history of primary health care transformation: Alberta's primary care networks and the people, time and culture of change.

BACKGROUND: Primary care, and its transformation into Primary Health Care (PHC), has become an area of intense policy interest around the world. As part of this trend Alberta, Canada, has implemented Primary Care Networks (PCNs). These are decentralized organizations, mandated with supporting the delivery of PHC, funded through capitation, and operating as partnerships between the province's healthcare administration system and family physicians. This paper provides an implementation history of the PCNs, giving a detailed account of how people, time, and culture have interacted to implement bottom up, incremental change in a predominantly Fee-For-Service (FFS) environment. METHODS: Our implementation history is built out of an analysis of policy documents and qualitative interviews. We conducted an interpretive analysis of relevant policy documents (n = 20) published since the first PCN was established. We then grounded 12 semi-structured interviews in that initial policy analysis. These interviews explored 11 key stakeholders' perceptions of PHC transformation in Alberta generally, and the formation and evolution of the PCNs specifically. The data from the policy review and the interviews were coded inductively, with participants checking our emerging analyses. RESULTS: Over time, the PCNs have shifted from an initial Frontier Era that emphasized local solutions to local problems and featured few rules, to a present Era of Accountability that features central demands for standardized measures, governance, and co-planning with other elements of the health system. Across both eras, the PCNs have been first and foremost instruments and supporters of family physician authority and autonomy. A core group of people emerged to create the PCNs and, over time, to develop a long-term Quality Improvement (QI) vision and governance plan for them as organizations. The continuing willingness of both these groups to work at understanding and aligning one another's cultures to achieve the transformation towards PHC has been central to the PCNs' survival and success. CONCLUSIONS: Generalizable lessons from the implementation history of this emerging policy experiment include: The need for flexibility within a broad commitment to improving quality. The importance of time for individuals and organizations to learn about: quality improvement; one another's cultures; and how best to support the transformation of a system while delivering care locally.

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.

Treating Health Care: How the Canadian System Works and How It Could Work Better.

Health policy analysis requires an understanding of a broad range of topics that are often taught in different disciplines spanning economics, political science, ethics, health administration, public health and healthcare. Professor Raisa Deber's Treating Health Care is essential reading for anyone interested in understanding the basic fundamentals of the healthcare system, eloquently weaving together key concepts across disciplines and background information to equip the reader with a "toolkit" for decision making in health policy analysis.

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.