Autism in Brazil: a systematic review of family challenges and coping strategies / Autismo no Brasil, desafios familiares e estratégias de superação: revisão sistemática

OBJECTIVE: To describe the challenges faced by families caring for children with autism spectrum disorder (ASD) in Brazil and the coping strategies employed. SOURCES: Systematic review of articles published until September of 2013, without language restrictions, using quality appraisal (AMSTAR and CASP/Oxford instruments). SUMMARY OF THE FINDINGS: The literature shows parental emotional overload as one of the main challenges faced by families, especially mothers. The main stressors were diagnostic postponement, difficulty dealing with the diagnosis and associated symptoms, and poor access to health services and social support. The predominant coping strategies found included information exchange between affected families and integrated healthcare network for patient and family support. CONCLUSION: ASD exerts strong influence on family dynamics, resulting in caregiver overload, especially in mothers. The Brazilian Unified Health System needs to provide comprehensive, continuous, and coordinated care to strengthen the patient-family dyad and promote the full development and societal inclusion of children with ASD. .

OBJETIVO: Descrever os desafios encontrados pelas famílias na convivência com crianças portadoras de transtorno do espectro autista (TEA) no Brasil e as estratégias de superação empregadas. FONTE DOS DADOS: Revisão sistemática da literatura com inclusão de artigos publicados até setembro de 2013, sem restrições de idioma. Os artigos incluídos foram submetidos à avaliação de qualidade metodológica por meio do Amstar e Casp/Oxford. SÍNTESE DOS DADOS: Incluem-se estudos provenientes de São Paulo e Rio Grande do Sul com alta e moderada qualidade metodológica. A literatura mostra sobrecarga emocional dos pais como um dos principais desafios encontrados pelas famílias, inclusive com grande tensão sobre as mães. Dentre os fatores relacionados ao estresse estão: postergação diagnóstica, dificuldade de lidar com o diagnóstico e com os sintomas associados, acesso precário ao serviço de saúde e apoio social. Dentre as estratégias de superação destacaram-se: troca de informações entre as famílias afetadas e assistência integralizada da rede de saúde no atendimento do paciente e suporte à família. CONCLUSÃO: Observou-se que o TEA exerce forte influência na dinâmica familiar com sobrecarga dos cuidadores, geralmente da mãe. O Sistema Único de Saúde necessita prover cuidado integral, longitudinal e coordenado com vistas ao fortalecimento do binômio paciente-família e o pleno desenvolvimento e a plena inserção dessas crianças na sociedade. .

Autism in Brazil: a systematic review of family challenges and coping strategies.

OBJECTIVE: To describe the challenges faced by families caring for children with autism spectrum disorder (ASD) in Brazil and the coping strategies employed. SOURCES: Systematic review of articles published until September of 2013, without language restrictions, using quality appraisal (AMSTAR and CASP/Oxford instruments). SUMMARY OF THE FINDINGS: The literature shows parental emotional overload as one of the main challenges faced by families, especially mothers. The main stressors were diagnostic postponement, difficulty dealing with the diagnosis and associated symptoms, and poor access to health services and social support. The predominant coping strategies found included information exchange between affected families and integrated healthcare network for patient and family support. CONCLUSION: ASD exerts strong influence on family dynamics, resulting in caregiver overload, especially in mothers. The Brazilian Unified Health System needs to provide comprehensive, continuous, and coordinated care to strengthen the patient-family dyad and promote the full development and societal inclusion of children with ASD.

Features of effective computerised clinical decision support systems: meta-regression of 162 randomised trials.

OBJECTIVES: To identify factors that differentiate between effective and ineffective computerised clinical decision support systems in terms of improvements in the process of care or in patient outcomes. DESIGN: Meta-regression analysis of randomised controlled trials. DATA SOURCES: A database of features and effects of these support systems derived from 162 randomised controlled trials identified in a recent systematic review. Trialists were contacted to confirm the accuracy of data and to help prioritise features for testing. MAIN OUTCOME MEASURES: "Effective" systems were defined as those systems that improved primary (or 50% of secondary) reported outcomes of process of care or patient health. Simple and multiple logistic regression models were used to test characteristics for association with system effectiveness with several sensitivity analyses. RESULTS: Systems that presented advice in electronic charting or order entry system interfaces were less likely to be effective (odds ratio 0.37, 95% confidence interval 0.17 to 0.80). Systems more likely to succeed provided advice for patients in addition to practitioners (2.77, 1.07 to 7.17), required practitioners to supply a reason for over-riding advice (11.23, 1.98 to 63.72), or were evaluated by their developers (4.35, 1.66 to 11.44). These findings were robust across different statistical methods, in internal validation, and after adjustment for other potentially important factors. CONCLUSIONS: We identified several factors that could partially explain why some systems succeed and others fail. Presenting decision support within electronic charting or order entry systems are associated with failure compared with other ways of delivering advice. Odds of success were greater for systems that required practitioners to provide reasons when over-riding advice than for systems that did not. Odds of success were also better for systems that provided advice concurrently to patients and practitioners. Finally, most systems were evaluated by their own developers and such evaluations were more likely to show benefit than those conducted by a third party.

Computerized clinical decision support systems for primary preventive care: a decision-maker-researcher partnership systematic review of effects on process of care and patient outcomes.

BACKGROUND: Computerized clinical decision support systems (CCDSSs) are claimed to improve processes and outcomes of primary preventive care (PPC), but their effects, safety, and acceptance must be confirmed. We updated our previous systematic reviews of CCDSSs and integrated a knowledge translation approach in the process. The objective was to review randomized controlled trials (RCTs) assessing the effects of CCDSSs for PPC on process of care, patient outcomes, harms, and costs. METHODS: We conducted a decision-maker-researcher partnership systematic review. We searched MEDLINE, EMBASE, Ovid's EBM Reviews Database, Inspec, and other databases, as well as reference lists through January 2010. We contacted authors to confirm data or provide additional information. We included RCTs that assessed the effect of a CCDSS for PPC on process of care and patient outcomes compared to care provided without a CCDSS. A study was considered to have a positive effect (i.e., CCDSS showed improvement) if at least 50% of the relevant study outcomes were statistically significantly positive. RESULTS: We added 17 new RCTs to our 2005 review for a total of 41 studies. RCT quality improved over time. CCDSSs improved process of care in 25 of 40 (63%) RCTs. Cumulative scientifically strong evidence supports the effectiveness of CCDSSs for screening and management of dyslipidaemia in primary care. There is mixed evidence for effectiveness in screening for cancer and mental health conditions, multiple preventive care activities, vaccination, and other preventive care interventions. Fourteen (34%) trials assessed patient outcomes, and four (29%) reported improvements with the CCDSS. Most trials were not powered to evaluate patient-important outcomes. CCDSS costs and adverse events were reported in only six (15%) and two (5%) trials, respectively. Information on study duration was often missing, limiting our ability to assess sustainability of CCDSS effects. CONCLUSIONS: Evidence supports the effectiveness of CCDSSs for screening and treatment of dyslipidaemia in primary care with less consistent evidence for CCDSSs used in screening for cancer and mental health-related conditions, vaccinations, and other preventive care. CCDSS effects on patient outcomes, safety, costs of care, and provider satisfaction remain poorly supported.

Reliability of a tool for measuring theory of planned behaviour constructs for use in evaluating research use in policymaking.

BACKGROUND: Although measures of knowledge translation and exchange (KTE) effectiveness based on the theory of planned behavior (TPB) have been used among patients and providers, no measure has been developed for use among health system policymakers and stakeholders. A tool that measures the intention to use research evidence in policymaking could assist researchers in evaluating the effectiveness of KTE strategies that aim to support evidence-informed health system decision-making. Therefore, we developed a 15-item tool to measure four TPB constructs (intention, attitude, subjective norm and perceived control) and assessed its face validity through key informant interviews. METHODS: We carried out a reliability study to assess the tool's internal consistency and test-retest reliability. Our study sample consisted of 62 policymakers and stakeholders that participated in deliberative dialogues. We assessed internal consistency using Cronbach's alpha and generalizability (G) coefficients, and we assessed test-retest reliability by calculating Pearson correlation coefficients (r) and G coefficients for each construct and the tool overall. RESULTS: The internal consistency of items within each construct was good with alpha ranging from 0.68 to alpha = 0.89. G-coefficients were lower for a single administration (G = 0.34 to G = 0.73) than for the average of two administrations (G = 0.79 to G = 0.89). Test-retest reliability coefficients for the constructs ranged from r = 0.26 to r = 0.77 and from G = 0.31 to G = 0.62 for a single administration, and from G = 0.47 to G = 0.86 for the average of two administrations. Test-retest reliability of the tool using G theory was moderate (G = 0.5) when we generalized across a single observation, but became strong (G = 0.9) when we averaged across both administrations. CONCLUSION: This study provides preliminary evidence for the reliability of a tool that can be used to measure TPB constructs in relation to research use in policymaking. Our findings suggest that the tool should be administered on more than one occasion when the intervention promotes an initial 'spike' in enthusiasm for using research evidence (as it seemed to do in this case with deliberative dialogues). The findings from this study will be used to modify the tool and inform further psychometric testing following different KTE interventions.

SUPPORT Tools for evidence-informed health Policymaking (STP) 9: Assessing the applicability of the findings of a systematic review.

This article is part of a series written for people responsible for making decisions about health policies and programmes and for those who support these decision makers. Differences between health systems may often result in a policy or programme option that is used in one setting not being feasible or acceptable in another. Or these differences may result in an option not working in the same way in another setting, or even achieving different impacts in another setting. A key challenge that policymakers and those supporting them must face is therefore the need to understand whether research evidence about an option can be applied to their setting. Systematic reviews make this task easier by summarising the evidence from studies conducted in a variety of different settings. Many systematic reviews, however, do not provide adequate descriptions of the features of the actual settings in which the original studies were conducted. In this article, we suggest questions to guide those assessing the applicability of the findings of a systematic review to a specific setting. These are: 1. Were the studies included in a systematic review conducted in the same setting or were the findings consistent across settings or time periods? 2. Are there important differences in on-the-ground realities and constraints that might substantially alter the feasibility and acceptability of an option? 3. Are there important differences in health system arrangements that may mean an option could not work in the same way? 4. Are there important differences in the baseline conditions that might yield different absolute effects even if the relative effectiveness was the same? 5. What insights can be drawn about options, implementation, and monitoring and evaluation? Even if there are reasonable grounds for concluding that the impacts of an option might differ in a specific setting, insights can almost always be drawn from a systematic review about possible options, as well as approaches to the implementation of options and to monitoring and evaluation.

STP: Herramientas SUPPORT para la toma de decisiones en políticas de salud informada por la evidencia 9: cómo evaluar la aplicabilidad de los hallazgos de una revisión sistemática / STP: SUPPORT tools for decision-making in health policies informed by evidence 9: how to assess the applicability of the findings of a systematic review

Las diferencias entre los sistemas de salud a veces pueden dar como resultado una opción de programa o política que se utiliza en un lugar y que no es viable o aceptable en otro. O incluso estas diferencias pueden dar como resultado una opción que no funciona de la misma manera en otro lugar, o que no logra producir diferentes impactos en otro lugar. Un desafío clave que pueden enfrentar los responsables de la toma de decisiones en políticas y quienes los respaldan es la necesidad de comprender si la evidencia de la investigación sobre una opción se puede aplicar a su ámbito. Las revisiones sistemáticas simplifican esta tarea ya que resumen la evidencia de estudios realizados en una variedad de lugares diferentes.

Ferramentas SUPPORT para a elaboração de políticas de saúde baseadas em evidências (STP) 9: como avaliar a aplicabilidade dos resultados de uma revisão sistemática? / SUPPORT Tools for Evidence-Based Health Policy (STP) 9: How to assess the applicability of the results of a systematic review?

As diferenças entre os sistemas de saúde podem muitas vezes fazer com que uma opção de programa ou política que é usada em um contexto não seja viável ou aceitável em outro. Ou estas diferenças podem fazer com que uma opção não funcione da mesma maneira em outro contexto, ou até mesmo cause impactos diferentes em outro contexto. Portanto, um desafio fundamental que os formuladores de políticas e aqueles que os apóiam precisam enfrentar é a necessidade de entender se as evidências de pesquisa sobre uma opção podem ser aplicadas ao seu contexto. As revisões sistemáticas facilitam esta tarefa ao resumir as evidências de estudos feitos em uma série de contextos diferentes.

Outils du projet SUPPORT pour l´élaboration des politiques de santé éclairées par les données probantes 9: évaluation de l´applicabilité des conclusions d´une étude méthodique / SUPPORT Toolkit for evidence-informed health policy development 9: assessing the applicability of findings from a systematic review

Les différences entre les systèmes de santé peuvent souvent donner lieu à une proposition de politique ou de programme dont la mise en oeuvre convient dans un certain milieu mais qui n´est ni réalisable ni acceptable dans un autre. Ou encore, il peut en résulter une proposition dont l`efficacité ne sera pas la même dans un autre milieu ou qui entraînera même des impacts différents. Aussi est-il crucial que les responsables de politiques et les personnes qui les assistent s`efforcent de comprendre si les données probantes relatives à la proposition envisagée sont applicables à leur milieu. Les études méthodiques facilitent cette tâche en présentant le résumé des données probantes issues d´examens effectués dans différents milieux.