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The COVID-19 pandemic was associated with increases in the prevalence of depression and anxiety among children and young adults. We studied whether the pandemic was associated with changes in prescription benzodiazepine use. We conducted a population-based study of benzodiazepine dispensing to children and young adults ≤ 24 years old between January 1, 2013, and June 30, 2022. We used structural break analyses to identify the pandemic month(s) when changes in prescription benzodiazepine dispensing occurred, and interrupted time series models to quantify changes in dispensing following the structural break and compare observed and expected benzodiazepine use. A structural break occurs where there is a sudden change in the trend of a time series. We observed an immediate decline in benzodiazepine dispensing of 23.6 per 100,000 (95% confidence interval [CI]: -33.6 to -21.2) associated with a structural break in April 2020, followed by a monthly decrease in the trend of 0.3 per 100,000 (95% CI: -0.74 to 0.14). Lower than expected benzodiazepine dispensing rates were observed each month of the pandemic from April 2020 onward, with relative percent differences ranging from - 7.4% (95% CI: -10.1% to - 4.7%) to -20.9% (95% CI: -23.2% to -18.6%). Results were generally similar in analyses stratified by sex, age, neighbourhood income quintile, and urban versus rural residence. Further research is required to understand the clinical implications of these findings and whether these trends were sustained with further follow-up.
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COVID-19 associated public health measures and school closures exacerbated symptoms in some children and youth with attention-deficit hyperactivity disorder (ADHD). Less well understood is how the pandemic influenced patterns of prescription stimulant use. We conducted a population-based study of stimulant dispensing to children and youth ≤ 24 years old between January 1, 2013, and June 30, 2022. We used structural break analyses to identify the pandemic month(s) when changes in the dispensing of stimulants occurred. We used interrupted time series models to quantify changes in dispensing following the structural break and compare observed and expected stimulant use. Our main outcome was the change in the monthly rate of stimulant use per 100,000 children and youth. Following an initial immediate decline of 60.1 individuals per 100,000 (95% confidence interval [CI] - 99.0 to - 21.2), the monthly rate of stimulant dispensing increased by 11.8 individuals per 100,000 (95% CI 10.0-13.6), with the greatest increases in trend observed among females, individuals in the highest income neighbourhoods, and those aged 20 to 24. Observed rates were between 3.9% (95% CI 1.7-6.2%) and 36.9% (95% CI 34.3-39.5%) higher than predicted among females from June 2020 onward and between 7.1% (95% CI 4.2-10.0%) and 50.7% (95% CI 47.0-54.4%) higher than expected among individuals aged 20-24 from May 2020 onward. Additional research is needed to ascertain the appropriateness of stimulant use and to develop strategies supporting children and youth with ADHD during future periods of long-term stressors.
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Transtorno do Deficit de Atenção com Hiperatividade , COVID-19 , Estimulantes do Sistema Nervoso Central , Humanos , Estimulantes do Sistema Nervoso Central/uso terapêutico , Criança , Feminino , Masculino , COVID-19/epidemiologia , Adolescente , Transtorno do Deficit de Atenção com Hiperatividade/tratamento farmacológico , Transtorno do Deficit de Atenção com Hiperatividade/epidemiologia , Adulto Jovem , Pré-Escolar , Prescrições de Medicamentos/estatística & dados numéricosRESUMO
OBJECTIVE: Stimulants are first-line pharmacotherapy for individuals with attention-deficit hyperactivity disorder. However, disparities in drug coverage may contribute to inequitable treatment access. In January 2018, the government of Ontario, Canada, implemented a publicly-funded program (OHIP+) providing universal access to medications at no cost to children and youth between the ages of 0 and 24. In April 2019, the program was amended to cover only children and youth without private insurance. We studied whether these policy changes were associated with changes in prescription stimulant dispensing to Ontario children and youth. METHODS: We conducted a population-based observational natural experiment study of stimulant dispensing to children and youth in Ontario between January 2013 and March 2020. We used interventional autoregressive integrated moving average models to estimate the association between OHIP+ and its subsequent modification with stimulant dispensing trends. RESULTS: The implementation of OHIP+ was associated with a significant immediate increase in the monthly rate of stimulant dispensing of 53.6 individuals per 100,000 population (95% confidence interval [CI], 36.8 to 70.5 per 100,000) and a 14.2% (95% CI, 12.8% to 15.6%) relative percent increase in stimulant dispensing rates between December 2017 and March 2019 (1198.6 vs. 1368.7 per 100,000 population). The April 2019 OHIP+ program amendment was associated with an increase in monthly stimulant dispensing trends of 10.2 individuals per 100,000 population (95% CI, 5.0 to 15.5), with rates increasing 7.5% (95% CI, 6.2% to 8.7%) between March 2019 and March 2020 (1368.7 vs. 1470.8 per 100,000 population). These associations were most pronounced among males, children and youth living in the highest income neighbourhoods and individuals aged 20 to 24. CONCLUSION: A publicly-funded pharmacare program was associated with more children and youth being dispensed stimulants.
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Transtorno do Deficit de Atenção com Hiperatividade , Estimulantes do Sistema Nervoso Central , Masculino , Humanos , Criança , Adolescente , Recém-Nascido , Lactente , Pré-Escolar , Adulto Jovem , Adulto , Estimulantes do Sistema Nervoso Central/uso terapêutico , Transtorno do Deficit de Atenção com Hiperatividade/tratamento farmacológico , Transtorno do Deficit de Atenção com Hiperatividade/epidemiologia , Ontário/epidemiologia , PrescriçõesRESUMO
BACKGROUND: Population-based research examining geographic variability in psychotropic medication dispensing to children and youth and the sociodemographic correlates of such variation is lacking. Variation in psychotropic use could reflect disparities in access to non-pharmacologic interventions and identify potentially concerning use patterns. METHODS: We conducted a population-based study of all Ontario residents aged 0 to 24 years who were dispensed a benzodiazepine, stimulant, antipsychotic or antidepressant between January 1, 2018, and December 31, 2018. We conducted small-area variation analyses and identified determinants of dispensing using negative binomial generalized estimating equation models. RESULTS: The age- and sex-standardized rate of psychotropic dispensing to children and youth was 76.8 (range 41.7 to 144.4) prescriptions per 1000 population, with large variation in psychotropic dispensing across Ontario's census divisions. Males had higher antipsychotic [rate ratio (RR) 1.40; 95% confidence interval (CI) 1.36 to 1.44) and stimulant (RR 1.75; 95% CI 1.70 to 1.80) dispensing rates relative to females, with less use of benzodiazepines (RR 0.85; 95% CI 0.83 to 0.88) and antidepressants (RR 0.81; 95% CI 0.80 to 0.82). Lower antipsychotic dispensing was observed in the highest income neighbourhoods (RR 0.72; 95% CI 0.70 to 0.75) relative to the lowest. Benzodiazepine (RR 1.12; 95% CI 1.01 to 1.24) and stimulant (RR 1.11; 95% CI 1.01 to 1.23) dispensing increased with the density of mental health services in census divisions, whereas antipsychotic use decreased (RR 0.82; 95% CI 0.73 to 0.91). The regional density of child and adolescent psychiatrists and developmental pediatricians (RR 1.00; 95% CI 0.99 to 1.01) was not associated with psychotropic dispensing. CONCLUSION: We found significant variation in psychotropic dispensing among young Ontarians. Targeted investment in regions with long wait times for publicly-funded non-pharmacological interventions and novel collaborative service models may minimize variability and promote best practices in using psychotropics among children and youth.
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Antipsicóticos , Masculino , Feminino , Humanos , Criança , Adolescente , Antipsicóticos/uso terapêutico , Ontário , Psicotrópicos/uso terapêutico , Antidepressivos/uso terapêutico , Prescrições de Medicamentos , Benzodiazepinas/uso terapêutico , Projetos de PesquisaRESUMO
BACKGROUND: In January 2018, the Government of Ontario, Canada, initiated a universal pharmacare program (OHIP+) for all individuals aged 24 years and younger. In April 2019, the program was amended to cover only children and youth without private insurance. Because benzodiazepines are commonly prescribed to children and youth despite their potential hazards, we examined whether changes in publicly-funded drug coverage influenced benzodiazepine dispensing trends in this demographic. METHODS: We conducted a population-based natural experiment study of benzodiazepine dispensing to children and youth in Ontario between January 2013 and March 2020. We used interventional autoregressive integrated moving average models to estimate the impact of OHIP + and its subsequent modification on these trends. RESULTS: The implementation of OHIP + was associated with an immediate increase in the monthly rate of benzodiazepine dispensing of 12.9 individuals per 100,000 population (95% confidence interval [CI]; 7.5 to 18.3 per 100,000). Benzodiazepine dispensing rates rose from 214.2 to 241.5 per 100,000 from December 2017 to March 2019, a 12.8% (95% CI 9.6-16.0%) increase. In stratified analyses, increases were most pronounced among females, children and youth living in the lowest income neighbourhoods and individuals aged 20 to 24. The April 2019 modification to OHIP + was not associated with changes in monthly benzodiazepine dispensing trends (0.39 individuals per 100,000; 95% CI -1.3 to 2.1 per 100,000). However, rates remained elevated relative to the period preceding OHIP + implementation. CONCLUSIONS: Implementation of a publicly-funded pharmacare program resulted in more children and youth being prescribed benzodiazepines.
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Benzodiazepinas , Políticas , Feminino , Humanos , Criança , Adolescente , Benzodiazepinas/uso terapêutico , OntárioRESUMO
STUDY DESIGN: A retrospective cohort study. OBJECTIVES: To describe antibiotic prescribing and urine culture testing patterns for urinary tract infections (UTIs) in a primary care Spinal Cord Injury (SCI) cohort. SETTING: A primary care electronic medical records (EMR) database in Ontario. METHODS: Using linked EMR health administrative databases to identify urine culture and antibiotic prescriptions ordered in primary care for 432 individuals with SCI from January 1, 2013 to December 31, 2015. Descriptive statistics were conducted to describe the SCI cohort, and physicians. Regression analyses were conducted to determine patient and physician factors associated with conducting a urine culture and class of antibiotic prescription. RESULTS: The average annual number of antibiotic prescriptions for UTI for the SCI cohort during study period was 1.9. Urine cultures were conducted for 58.1% of antibiotic prescriptions. Fluroquinolones and nitrofurantoin were the most frequently prescribed antibiotics. Male physicians and international medical graduates were more likely to prescribe fluroquinolones than nitrofurantoin for UTIs. Early-career physicians were more likely to order a urine culture when prescribing an antibiotic. No patient characteristics were associated with obtaining a urine culture or antibiotic class prescription. CONCLUSION: Nearly 60% of antibiotic prescriptions for UTIs in the SCI population were associated with a urine culture. Only physician characteristics, not patient characteristics, were associated with whether or not a urine culture was conducted, and the class of antibiotic prescribed. Future research should aim to further understand physician factors with antibiotic prescribing and urine culture testing for UTIs in the SCI population.
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Traumatismos da Medula Espinal , Infecções Urinárias , Humanos , Masculino , Antibacterianos/uso terapêutico , Nitrofurantoína , Estudos Retrospectivos , Traumatismos da Medula Espinal/complicações , Traumatismos da Medula Espinal/tratamento farmacológico , Infecções Urinárias/diagnóstico , Infecções Urinárias/tratamento farmacológico , Atenção Primária à SaúdeRESUMO
Anxiety disorders are the most common mental health concerns affecting Canadian children and adolescents. The Canadian Paediatric Society has developed two position statements that summarize current evidence regarding the diagnosis and management of anxiety disorders. Both statements offer evidence-informed guidance to support paediatric health care providers (HCPs) making decisions around the care of children and adolescents with these conditions. The objectives of Part 2, which focuses on management, are to: (1) review the evidence and context for a range of clinical approaches that combine behavioural and pharmacological interventions to effectively address impairment, (2) describe the roles of education and psychotherapy in the prevention and treatment of anxiety disorders, and (3) outline the use of pharmacotherapy, with side effects and risks. Recommendations for managing anxiety are based on current guidelines, review of the literature, and expert consensus. Note that when the word 'parent' (singular or plural) is used, it includes any primary caregiver and every configuration of family.
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OBJECTIVE: Antenatal corticosteroids (ACSs) are administered to pregnant individuals at high risk of preterm delivery to reduce neonatal morbidity and mortality. ACSs have a limited timeframe of effectiveness, and timing of administration can be difficult because of uncertainty surrounding the likelihood of preterm delivery. The objective of the current study was to design a decision analysis model to optimize the timing of ACS administration and identify important model variables that impact administration timing preference. METHODS: We created a Markov decision analysis model with a base case of a patient at 240 weeks gestation with antepartum hemorrhage. Decision strategies included immediate, delayed, and no ACS administration. Outcomes were based on the neonatal perspective and consisted of lifetime quality adjusted life years (QALYs). Data for model inputs were derived from current literature and clinical recommendations. RESULTS: Our base case analysis revealed a preferred strategy of delaying ACSs for 2 weeks, which maximized QALYs (39.18 lifetime discounted), driven by reduced neonatal morbidity at the expense of 0.1% more neonatal deaths, when compared with immediate ACS administration. Sensitivity analyses identified that, if the probability of delivery within the next week was >6.19%, then immediate steroids were preferred. Other important variables included gestational age, ACS effectiveness, and ACS adverse effects. CONCLUSION: ACS timing involves a trade-off between morbidity and mortality, and optimal timing depends on probability of delivery, gestational age, and risks and benefits of ACSs. Clinicians should carefully consider these factors prior to ACS administration.
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Nascimento Prematuro , Corticosteroides/uso terapêutico , Técnicas de Apoio para a Decisão , Feminino , Idade Gestacional , Humanos , Recém-Nascido , Gravidez , Nascimento Prematuro/etiologia , Nascimento Prematuro/prevenção & controle , Hemorragia UterinaRESUMO
OBJECTIVE: Early identification of autism spectrum disorder (ASD) is an essential healthcare priority. Girls may be at risk for late diagnosis, although research is equivocal regarding how sex and other factors relate to ASD identification. The goals of the current investigation were to (1) identify how child sex, cognitive abilities, and demographic factors relate to age of first concern (AOC) and age of diagnosis (AOD), (2) evaluate trends in AOC/AOD over time, and (3) consider whether main effects of sex on AOC/AOD are moderated by cognitive abilities or time. METHOD: Children (N = 365; 20% female; 85.6% identified as White) with ASD participated through the Province of Ontario Neurodevelopmental Disorders (POND) Network. Study records included AOD, date/timing of diagnosis (between 1996 and 2017), age of first parent concern, demographics, and standardized cognitive testing results (24.7% of children had IQ scores below standard scores of 70). RESULTS: Average AOC occurred before 2 years of age whereas average AOD occurred after 5 years of age. Girls did not differ on AOC but had a later AOD than boys. Higher verbal IQ was associated with later AOD more strongly in girls than boys. Regarding time-related changes, average AOC and AOD increased across the study period, more strongly for girls. CONCLUSIONS: Results support that sex is a key factor underlying delays in ASD identification and highlight the urgent need to improve diagnostic practices among girls. Limitations and implications for improving the diagnostic process are discussed.Abbreviations: ASD=autism spectrum disorder; IQ=intelligence quotient; AOC=parental report of age of first concern; AOD=age of diagnosis.
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Transtorno do Espectro Autista , Transtorno do Espectro Autista/diagnóstico , Criança , Pré-Escolar , Família , Feminino , Humanos , Masculino , Pais , Prevalência , Caracteres SexuaisRESUMO
OBJECTIVE: To describe the healthcare utilization and costs associated with the interdisciplinary treatment of pediatric persistent post-concussive symptoms (PPCS). METHODS: A retrospective chart review was conducted with 461 youth referred by community physicians to an interdisciplinary pediatric PPCS outpatient clinic in Ontario, Canada. Healthcare utilization parameters included accessibility, continuity, comprehensiveness, and service productivity. Direct healthcare costs included those incurred by physicians and other interdisciplinary services. Indirect costs per client included travel to the clinic and caregiver productivity loss. Data analyses were completed using descriptive statistics. RESULTS: The median age of clients was 15 years (range = 3 to 18). The median wait time for an initial PPCS clinic physician consultation was 71 days, and less than 2 months for other interdisciplinary services. Eighty-two percent of clients were referred to at least one other service after an initial physician consultation. Occupational therapy received the highest proportion of referrals (79%). Total median direct costs per client were approximately $915, with a final accumulated cost of $532 623 for all clients. Caregiver productivity loss was approximately $387 per family. CONCLUSIONS: Our findings suggest that interdisciplinary PPCS care represents an accessible, comprehensive and cost-saving healthcare model from the client and societal perspectives.
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Síndrome Pós-Concussão , Adolescente , Criança , Pré-Escolar , Custos de Cuidados de Saúde , Humanos , Ontário/epidemiologia , Aceitação pelo Paciente de Cuidados de Saúde , Estudos RetrospectivosRESUMO
OBJECTIVES: Many jurisdictions across Canada and internationally are grappling with providing diagnostic and intervention services for children with autism spectrum disorder (ASD). The objective was to compare Canadian and United Kingdom (UK) policies governing ASD diagnosis. METHODS: The policy scan extended from January 2000 to December 2017. Canadian federal, provincial/territorial, and UK government publications related to ASD diagnosis were retrieved from official websites by searching for ASD and related terms. Retrieved documents were filtered for relevance, with all relevant documents undergoing full text review. Data extracted included personnel and testing requirements for diagnosis, wait times, and eligibility for ASD services and funding. RESULTS: The included jurisdictions varied substantially in their approach to ASD diagnosis and eligibility for intervention. Nine of the 13 provinces/territories restrict which clinicians can diagnose ASD by requiring certain documentation for service eligibility. Three provinces require multi-disciplinary team assessment (British Columbia [BC], Quebec, and Nova Scotia [NS]). Three provinces (BC, NS, and Prince Edward Island [PEI]) require specific diagnostic tests for diagnosis. Only two provinces, BC and NS, have target wait times for assessment. Jurisdictions differed in whether they allowed children with a provisional diagnosis of ASD to access services. At a national level, the UK provides more clinical guidance for ASD diagnosis, which can be attributed to its centralized system of national healthcare delivery. CONCLUSIONS: ASD diagnostic assessment policies vary across Canada, and between Canada and the UK. Further evidence supporting ASD diagnostic practices is needed to streamline the journey from identification to intervention.
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AIM: The Modified Checklist for Autism in Toddlers (M-CHAT) could be appropriate for universal screening for autism spectrum disorder (ASD) at 18 months and 24 months. Validation studies, however, reported differences in psychometric properties across sample populations. This meta-analysis summarized its accuracy measures and quantified their change in relation to patient and study characteristics. METHOD: Four electronic databases (MEDLINE, PsycINFO, CINAHL, and Embase) were searched to identify articles published between January 2001 and May 2016. Bayesian regression models pooled study-specific measures. Meta-regressions covariates were age at screening, study design, and proportion of males. RESULTS: On the basis of the 13 studies included, the pooled sensitivity was 0.83 (95% credible interval [CI] 0.75-0.90), specificity was 0.51 (95% CI 0.41-0.61), and positive predictive value was 0.53 (95% CI 0.43-0.63) in high-risk children and 0.06 (95% CI <0.01-0.14) in low-risk children. Sensitivity was higher for screening at 30 months compared with 24 months. INTERPRETATION: Findings indicate that the M-CHAT performs with low to moderate accuracy in identifying ASD among children with developmental concerns, but there was a lack of evidence on its performance in low-risk children or at age 18 months. Clinicians should account for a child's age and presence of developmental concern when interpreting their M-CHAT score. WHAT THIS PAPER ADDS: The Modified Checklist for Autism in Toddlers (M-CHAT) performs with low-to-moderate accuracy in children with developmental concerns. There is limited evidence supporting its use at 18 months or in low-risk children.
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Transtorno Autístico/diagnóstico , Pré-Escolar , Humanos , LactenteRESUMO
STUDY DESIGN: A retrospective cross-sectional study. OBJECTIVE: To identify who prescribes outpatient antibiotics among a primary care spinal cord injury (SCI) cohort. SETTING: ICES databases in Ontario, Canada. METHODS: A cohort of individuals with SCI were retrospectively identified using a tested-algorithm and chart reviews in a primary care electronic medical records database. The cohort was linked to a drug dispensing database to obtain outpatient antibiotic prescribing information, and prescriber details were obtained from a physician database. RESULTS: Final cohort included three hundred and twenty individuals with SCI. The average annual number of antibiotic courses dispensed for the SCI cohort was 2.0 ± 6.2. For dispensed antibiotics, 58.9% were prescribed by rostered-primary care practice physicians, compared to 17.9% by emergency and non-rostered primary care physicians, 17.4% by specialists and 6.1% by non-physician prescribers. Those who lived in urban areas and rural areas, compared to those who lived in suburban areas, were more likely to receive antibiotics from emergency and non-rostered primary care physicians than from rostered-primary care practice physicians. CONCLUSION: Although individuals with SCI received outpatient antibiotic prescriptions from multiple sources, physicians from an individual's rostered-primary care practice were the main antibiotic prescribers. As such, interventions to optimize antibiotics use in the SCI population should target the primary care practice.
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Antibacterianos , Traumatismos da Medula Espinal , Humanos , Antibacterianos/uso terapêutico , Estudos Retrospectivos , Estudos Transversais , Prescrições de Medicamentos , Padrões de Prática Médica , Traumatismos da Medula Espinal/tratamento farmacológico , Traumatismos da Medula Espinal/epidemiologia , Atenção Primária à SaúdeRESUMO
Health-related Quality of Life (HRQoL) is a multi-faceted construct influenced by a myriad of environmental, demographic, and individual characteristics. Our understanding of these influencers remains highly limited in neurodevelopmental conditions. Existing research in this area is sparse, highly siloed by diagnosis labels, and focused on symptoms. This review synthesized the evidence in this area using a multi-dimensional model of HRQoL and trans-diagnostically across neurodevelopmental conditions. The systematic review, conducted in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analysis Checklist, was completed in June 2023 using Medline, PsycInfo, Embase, PubMed, and Cochrane Library. Our search revealed 78 studies that examined predictors of HRQoL in neurodevelopmental conditions. The majority of these studies focused on autism and ADHD with a paucity of literature in other conditions. Cross-diagnosis investigations were limited despite the fact that many of the examined predictors transcend diagnostic boundaries. Significant gaps were revealed in domains of biology/physiology, functioning, health perceptions, and environmental factors. Very preliminary evidence suggested potentially shared predictors of HRQoL across conditions including positive associations between HRQoL and adaptive functioning, male sex/gender, positive self-perception, physical activity, resources, and positive family context, and negative associations with diagnostic features and mental health symptoms. Studies of transdiagnostic predictors across neurodevelopmental conditions are critically needed to enable care models that address shared needs of neurodivergent individuals beyond diagnostic boundaries. Further understanding of HRQoL from the perspective of neurodivergent communities is a critical area of future work.
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Qualidade de Vida , Criança , Humanos , Masculino , Qualidade de Vida/psicologiaRESUMO
Introduction: To examine the scope of existing literature on the conceptualization, use, and outcomes associated with compassion in the care of youth with childhood-onset disabilities. Methods: A protocol was developed based on the Joanna Briggs Institute (JBI) scoping review method. MEDLINE, EMBASE, PsycINFO, Cochrane Central Register of Controlled Trials, and EBSCOhost CINAHL, were searched. Results: Eight studies were selected for inclusion; four used quantitative methodology, and four used qualitative methods. Compassion was not defined a priori or a posteriori in any of the included studies. The concept of self-compassion was explicitly defined only for parents of youth with childhood-onset disabilities in three studies a priori. The most reported outcome measure was self-compassion in parents of youth with childhood-onset disabilities. Self-compassion among parents was associated with greater quality of life and resiliency and lower stress, depression, shame and guilt. Discussion: There is limited evidence on the conceptualization, use, and outcomes associated with compassion among youth with childhood-onset disabilities. Self-compassion may be an effective internal coping process among parents of youth with childhood-onset disabilities. Further research is required to understand the meaning of compassion to youth with childhood-onset disabilities, their parents and caregivers. Systematic review registration: https://doi.org/10.17605/OSF.IO/2GRB4.
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Neurodevelopmental conditions can be associated with decreased health-related quality of life; however, the predictors of these outcomes remain largely unknown. We characterized the predictors of health-related quality of life (HRQoL) in a sample of neurodiverse children and youth. We used a cross-sectional subsample from the Province of Ontario Neurodevelopmental Disorders Network (POND) consisting of those children and young people in the POND dataset with complete study data (total n = 615; 31% female; age: 11.28 years ± 2.84 years). Using a structural equation model, we investigated the effects of demographics (age, sex, socioeconomic status), core features (Social Communication Questionnaire, Toronto Obsessive Compulsive Scale, Strengths and Weaknesses of attention deficit/hyperactivity disorder (ADHD)-symptoms and Normal Behavior), co-occurring symptoms (Child Behaviour Checklist), and adaptive functioning (Adaptive Behaviour Assessment System) on HRQoL (KINDL). A total of 615 participants had complete data for this study (autism = 135, ADHD = 273, subthreshold ADHD = 7, obsessive-compulsive disorder (OCD) = 38, sub-threshold OCD = 1, neurotypical = 161). Of these participants, 190 (31%) identified as female, and 425 (69%) identified as male. The mean age was 11.28 years ± 2.84 years. Health-related quality of life was negatively associated with co-occurring symptoms (B = - 0.6, SE = 0.20, CI (- 0.95, - 0.19), p = 0.004)) and age (B = - 0.1, SE = 0.04, CI (- 0.19, - 0.01), p = 0.037). Fewer co-occurring symptoms were associated with higher socioeconomic status (B = - 0.5, SE = - 0.05, CI (- 0.58, - 0.37), p < 0.001). This study used a cross-sectional design. Given that one's experiences, needs, supports, and environment and thus HrQoL may change significantly over the lifespan and a longitudinal analysis of predictors is needed to capture these changes. Future studies with more diverse participant groups are needed. These results demonstrate the importance of behavioural and sociodemographic characteristics on health-related quality of life across neurodevelopmental conditions.
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Transtorno do Deficit de Atenção com Hiperatividade , Transtorno Obsessivo-Compulsivo , Criança , Adolescente , Humanos , Masculino , Feminino , Qualidade de Vida , Estudos Transversais , Transtorno do Deficit de Atenção com Hiperatividade/epidemiologia , Transtorno do Deficit de Atenção com Hiperatividade/diagnóstico , Transtorno Obsessivo-Compulsivo/epidemiologia , Transtorno Obsessivo-Compulsivo/diagnóstico , Adaptação PsicológicaRESUMO
BACKGROUND: Studies have highlighted significant challenges associated with the transition from pediatric to adult health and social care services for youth living with childhood-acquired disabilities and their caregivers. Patient navigation has been proposed as an effective transitional care intervention. Better understanding of how patient navigation may support youth and their families during pediatric to adult care transitions is warranted. OBJECTIVE: This study aims to describe the preferred adaptations of an existing web-based platform from the perspectives of youth with childhood-onset disabilities and their family caregivers to develop a web-based peer-patient navigation program, Compassionate Online Navigation to Enhance Care Transitions (CONNECT). METHODS: A qualitative descriptive design was used. Participants included youth living with childhood-acquired disabilities (16/23, 70%) and their caregivers (7/23, 30%). Semistructured interviews and focus groups were conducted, digitally recorded, and transcribed. Thematic analysis was used to analyze the data and was facilitated through NVivo software (Lumivero). RESULTS: Participants desired a program that incorporated (1) self-directed learning, (2) a library of reliable health and community resources, and (3) emotional and social supports. On the basis of participants' feedback, CONNECT was deemed satisfactory, as it was believed that the program would help support appropriate transition care through the provision of trusted health-related information. Participants highlighted the need for options to optimize confidentiality in their health and social care and the choice to remain anonymous to other participants. CONCLUSIONS: Web-based patient navigation programs such as CONNECT may deliver peer support that can improve the quality and experience of care for youth, and their caregivers, transitioning from pediatric to adult care through personalized support, health care monitoring, and health and social care resources. Future studies are needed to test the feasibility, acceptability, usability, use, and effectiveness of CONNECT among youth with childhood-onset disabilities.
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INTRODUCTION: Patient engagement and integrated knowledge translation (iKT) processes improve health outcomes and care experiences through meaningful partnerships in consensus-building initiatives and research. Consensus-building is essential for engaging a diverse group of experienced knowledge users in co-developing and supporting a solution where none readily exists or is less optimal. Patients and caregivers provide invaluable insights for building consensus in decision-making around healthcare, policy and research. However, despite emerging evidence, patient engagement remains sparse within consensus-building initiatives. Specifically, our research has identified a lack of opportunity for youth living with chronic health conditions and their caregivers to participate in developing consensus on indicators/benchmarks for transition into adult care. To bridge this gap and inform our consensus-building approach with youth/caregivers, this scoping review will synthesise the extent of the literature on patient and other knowledge user engagement in consensus-building healthcare initiatives. METHODS AND ANALYSIS: Following the scoping review methodology from Joanna Briggs Institute, published literature will be searched in MEDLINE, EMBASE, CINAHL and PsycINFO databases from inception to July 2023. Grey literature will be hand-searched. Two independent reviewers will determine the eligibility of articles in a two-stage process, with disagreements resolved by a third reviewer. Included studies must be consensus-building studies within the healthcare context that involve patient engagement strategies. Data from eligible studies will be extracted and charted on a standardised form. Abstracted data will be analysed quantitatively and descriptively, according to specific consensus methodologies, and patient engagement models and/or strategies. ETHICS AND DISSEMINATION: Ethics approval is not required for this scoping review protocol. The review process and findings will be shared with and informed by relevant knowledge users. Dissemination of findings will also include peer-reviewed publications and conference presentations. The results will offer new insights for supporting patient engagement in consensus-building healthcare initiatives. PROTOCOL REGISTRATION: https://osf.io/beqjr.
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Cuidadores , Consenso , Participação do Paciente , Humanos , Pesquisa Translacional Biomédica , Literatura de Revisão como Assunto , Projetos de Pesquisa , Transição para Assistência do AdultoRESUMO
Understanding how behaviour therapists incorporate diagnostic assessments into their intervention planning can help to streamline assessment procedures and facilitate communication. The objectives are to identify what information from the diagnostic assessment is received by behaviour therapists and which assessment elements are most important and relevant for treatment planning. Behaviour therapists, identified through Ontario registries, were surveyed about their use of diagnostic information in treatment planning. Seventy-one behaviour therapists completed the survey (response rate = 35.5%). The diagnostic information most frequently received by respondents included brief (69%) and detailed (49.2%) physician/psychologist report, speech/language assessment report (52.1%) and individualised education plan (50.7%). Most respondents indicated that information from the physician/psychologist report is often out-dated (74.6% Agree/Strongly Agree). There was variable agreement that the information in the diagnostic package influences the type and quantity of treatment. These findings demonstrate that while diagnostic assessments received by behaviour therapists are important to their planning, other independently obtained sources of information, such as client interviews, are relatively more important to this process. The diagnostic assessment is one tool to inform treatment planning; however, up-to-date information about the child's needs is likely to be more informative.
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Background: Practitioners report a lack of knowledge and confidence in treating autistic children, resulting in unmet healthcare needs. The Extension of Community Healthcare Outcomes (ECHO) Autism model addresses this through discussion of participant-generated cases, helping physicians provide best-practice care through co-created recommendations. Recommendations stemming from ECHO cases have yet to be characterized and may help guide the future care of autistic children. Our objective was to characterize and categorize case discussion recommendations from Project ECHO Ontario Autism to better identify gaps in clinician knowledge. Methods: We conducted a summative content analysis of all ECHO Ontario Autism case recommendations to identify categories of recommendations and their frequencies. Two researchers independently coded recommendations from five ECHO cases to develop the coding guide. They then each independently coded all remaining cases and recommendations from three cycles of ECHO held between October 2018 to July 2021, meeting regularly with the ECHO lead to consolidate the codes. A recommendation could be identified with more than one code if it pertained to multiple aspects of autism care. Categories from the various codes were identified and the frequency of each code was calculated. Results: Of the 422 recommendations stemming from 62 cases, we identified 55 codes across ten broad categories. Categories included accessing community resources (n = 224), referrals to allied health and other providers (n = 202), ongoing autism care (n = 169), co-occurring mental and physical health conditions (n = 168), resources and tools for further learning (n = 153), physician to provide education and coaching to families (n = 150), promoting parent and family wellness (n = 104), supporting community autism diagnosis (n = 97), promoting patient empowerment and autonomy (n = 87), and COVID-19 (n = 26). Conclusion: This is the first time that recommendations from ECHO Autism have been characterized and grouped into categories. Our results show that advice for autism identification and management spans many different facets of community-based care. Specific attention should be paid to providing continued access to education about autism, streamlining referrals to allied health providers, and a greater focus on patient- and family-centered care. Physicians should have continued access to autism education to help fill knowledge gaps and to facilitate families' service navigation.