Participação em casa e fatores pessoais e ambientais em crianças e adolescentes com síndrome de Down.

OBJETIVO: Descrever a participação em casa atual (frequência, envolvimento) e o desejo do cuidador por mudança na participação em casa de crianças e adolescentes com síndrome de Down, bem como fatores ambientais da casa, e explorar as associações de fatores pessoais e ambientais com a participação atual e o desejo do cuidador por mudança. MÉTODO: Oitenta e dois cuidadores (média de idade = 45 anos e 10 meses) de crianças e adolescentes com síndrome de Down (média de idade = 10 anos e 7 meses) foram entrevistados sobre a participação em casa da criança e fatores ambientais utilizando a Medida de Participação e do Ambiente ­ Crianças e Jovens. Além disso, foram coletados fatores pessoais e ambientais das crianças. Os resultados são relatados por meio de análise descritiva e correlações (coeficientes de correlação de Spearman ou teste U de Mann­Whitney) para descrever a relação entre a participação atual e o desejo do cuidador por mudança, com fatores pessoais e ambientais, para as variáveis ordinais e nominais, respectivamente (p < 0,05). RESULTADOS: A participação das crianças foi maior em cuidados pessoais e menor em atividades relacionadas à escola. A maioria dos cuidadores desejava mudança nas lições de casa e nas tarefas domésticas. Maior frequência de participação foi associada ao sexo masculino, distanciamento social menos rigoroso do cuidador devido à pandemia de covid­19 e crianças recebendo terapia. O maior envolvimento na participação foi associado a uma idade mais jovem nas crianças e a um maior apoio do ambiente. A idade mais avançada das crianças foi associada ao maior desejo por mudança do cuidador. INTERPRETAÇÃO: Fatores pessoais e ambientais são correlacionados com a participação de formas específicas. Devem ser realizadas estratégias criativas para promover a participação e que considerem os desejos do cuidador.

The Pediatric Autism Research Cohort (PARC) Study: protocol for a patient-oriented prospective study examining trajectories of functioning in children with autism.

INTRODUCTION: The developmentally variable nature of autism poses challenges in providing timely services tailored to a child's needs. Despite a recent focus on longitudinal research, priority-setting initiatives with stakeholders highlighted the importance of studying a child's day-to-day functioning and social determinants of health to inform clinical care. To address this, we are conducting a pragmatic multi-site, patient-oriented longitudinal investigation: the Pediatric Autism Research Cohort (PARC) Study. In young children (<7 years of age) newly diagnosed with autism, we will: (1) examine variability in trajectories of adaptive functioning from the point of diagnosis into transition to school; and (2) identify factors associated with trajectories of adaptive functioning. METHODS AND ANALYSIS: We aim to recruit 1300 children under 7 years of age with a recent (within 12 months) diagnosis of autism from seven sites: six in Canada; one in Israel. Participants will be followed prospectively from diagnosis to age 8 years, with assessments at 6-month intervals. Parents/caregivers will complete questionnaires administered via a customized online research portal. Following each assessment timepoint, families will receive a research summary report describing their child's progress on adaptive functioning and related domains. Analysis of the longitudinal data will map trajectories and examine child, family and service characteristics associated with chronogeneity (interindividual and intraindividual heterogeneity over time) and possible trajectory turning points around sensitive periods like the transition to school. ETHICS AND DISSEMINATION: Ethics approvals have been received by all sites. All parents/respondents will provide informed consent when enrolling in the study. Using an integrated knowledge translation approach, where stakeholders are directly engaged in the research process, the PARC Study will identify factors associated with trajectories of functioning in children with autism. Resulting evidence will be shared with government policy makers to inform provincial and national programs. Findings will be disseminated at conferences and published in peer-reviewed journals.

Psychometric properties of the English language version of the C-BiLLT evaluated in typically developing Canadian children.

PURPOSE: This study aimed to 1) investigate the convergent and discriminant validity, internal consistency, and test-retest reliability of the Canadian English version of the Computer-Based instrument for Low motor Language Testing (C-BiLLT-CAN), and 2) explore feasibility of the C-BiLLT assessment for children with cerebral palsy (CP) and complex communication needs in the Canadian health care context. METHODS: Eighty typically developing children between 1.5 and 8.5 years of age completed the C-BiLLT-CAN, the Peabody Picture Vocabulary Test-IV (PPVT-4), the receptive language sub-test of the New Reynell Developmental Language Scales (NRDLS), and/or the Raven's 2. Correlations between raw scores were calculated for estimates of convergent and discriminant validity. Internal consistency was calculated for all items and separately for items pertaining to vocabulary and grammar. To calculate the standard error of measurement (SEM) and intraclass correlation coefficient (ICC), 33 participants were re-tested with the C-BiLLT within three weeks. Feasibility was explored with nine participants with CP. RESULTS: C-BiLLT-CAN's convergent validity was good to excellent (Spearman's rho > 0.78) and discriminant validity was higher than hypothesized (Spearman's rho > 0.8). Internal consistency (Cronbach's alpha = 0.96), test-retest reliability (ICC > 0.9), and measurement error (SEM < 5%) were excellent. The feasibility study could not be fully completed due to the COVID-19 pandemic. Preliminary data demonstrated some technical and practical barriers for using the C-BiLLT in children with CP in Canada. CONCLUSION: The C-BiLLT-CAN showed good to excellent psychometric properties in a sample of typically developing children, indicating that it is an adequate test for measuring language comprehension in English-speaking Canadian children. Further research is needed to investigate the feasibility of the C-BiLLT-CAN in children with CP.

Connecting for Care: a protocol for a mixed-method social network analysis to advance knowledge translation in the field of child development and rehabilitation.

BACKGROUND: Connections between individuals and organizations can impact knowledge translation (KT). This finding has led to growing interest in the study of social networks as drivers of KT. Social networks are formed by the patterns of relationships or connections generated through interactions. These connections can be studied using social network analysis (SNA) methodologies. The relatively small yet diverse community in the field of child development and rehabilitation (CD&R) in Canada offers an ideal case study for applying SNA. The purposes of this work are to (1) quantify and map the structure of Canadian CD&R KT networks among four groups: families, health care providers, KT support personnel, and researchers; (2) explore participant perspectives of the network structure and of KT barriers and facilitators within it; and (3) generate recommendations to improve KT capacity within and between groups. Aligning with the principles of integrated KT, we have assembled a national team whose members contribute throughout the research and KT process, with representation from the four participant groups. METHODS: A sequential, explanatory mixed-method study, within the bounds of a national case study in the field of CD&R. Objective 1: A national SNA survey of family members with advocacy/partnership experience, health care providers, KT support personnel, and researchers, paired with an anonymous survey for family member without partnership experience, will gather data to describe the KT networks within and between groups and identify barriers and facilitators of network connections. Objective 2: Purposive sampling from Phase 1 will identify semi-structured interview participants with whom to examine conventional and network-driven KT barriers, facilitators, and mitigating strategies. Objective 3: Intervention mapping and a Delphi process will generate recommendations for network and conventional interventions to strengthen the network and facilitate KT. DISCUSSION: This study will integrate network and KT theory in mapping the structure of the CD&R KT network, enhance our understanding of conventional and network-focused KT barriers and facilitators, and provide recommendations to strengthen KT networks. Recommendations can be applied and tested within the field of CD&R to improve KT, with the aim of ensuring children achieve the best health outcomes possible through timely access to effective healthcare.

Exploration of the Feasibility of Remote Assessment of Functioning in Children and Adolescents with Developmental Disabilities: Parents' Perspectives and Related Contextual Factors.

The COVID-19 pandemic interrupted face-to-face health services, leveraging telehealth strategies. The aim of this cross-sectional study was to investigate, from a parent's perspective, the feasibility of a remote assessment of functioning in children with developmental disabilities during the pandemic and related contextual factors, based on how parents carry out the assessment. Parents of children with developmental disabilities (mean age = 7.56 ± 3.68) responded to a remote assessment via electronic forms and telephone interview. We analyzed parents' perspectives about the feasibility of the assessment. We also tested the association between feasibility score and sociodemographics/pandemic experience. Regression analysis tested if children's functioning characteristics predicted feasibility. A total of 57 mothers completed the remote assessment, and more than 95% did not report difficulties in accessing/responding to electronic forms. They scored remote assessment as easy and feasible, and reported no difficulties with telephone interview. Greater feasibility rates were related to lower maternal age (rho Spearman = -0.290; p = 0.029). The model shows that children's characteristics predicted 20.4% of feasibility (p < 0.005). Remote assessment showed to be feasible. Younger mothers might consider easier-to-use technologies, beyond considering remote assessment more viable. These results can guide the next steps in research and remote clinical practice.

Functioning of children and adolescents with Down syndrome and the association with environmental barriers and facilitators during the COVID-19 pandemic.

PURPOSE: To compare functioning and environmental aspects before and during physical distancing (DPD) and to determine which social, physical, behavioral and functioning aspects of DPD are correlated. METHODS: Sixteen parents of children/adolescents with Down syndrome (11.38 ± 3.00 years) were surveyed before and DPD. Paired t-tests were used to compare functioning and environmental aspects before and DPD and chi-square tests were used to test associations. RESULTS: There were increases in the frequency (p < 0.001) and involvement (p = 0.01) in home participation and on the impact, noticed by the parents, of the possibility of child to participate in daily activities (p = 0.036), as well as a reduction in social supports perceived by caregivers (p = 0.049). An association was found between the child's socio-emotional difficulties symptoms and practice of physical activity (p = 0.043) and with parents' satisfaction with the level of child's home participation (p = 0.042). CONCLUSION: Functioning can be affected in either positive or negative ways.

Avoiding the Banality of Evil in Times of COVID-19: Thinking Differently with a Biopsychosocial Perspective for Future Health and Social Policies Development.

The COVID-19 pandemic provides the opportunity to re-think health policies and health systems approaches by the adoption of a biopsychosocial perspective, thus acting on environmental factors so as to increase facilitators and diminish barriers. Specifically, vulnerable people should not face discrimination because of their vulnerability in the allocation of care or life-sustaining treatments. Adoption of biopsychosocial model helps to identify key elements where to act to diminish effects of the pandemics. The pandemic showed us that barriers in health care organization affect mostly those that are vulnerable and can suffer discrimination not because of severity of diseases but just because of their vulnerability, be this age or disability and this can be avoided by biopsychosocial planning in health and social policies. It is possible to avoid the banality of evil, intended as lack of thinking on what we do when we do, by using the emergence of the emergency of COVID-19 as a Trojan horse to achieve some of the sustainable development goals such as universal health coverage and equity in access, thus acting on environmental factors is the key for global health improvement.

Do the commonly used standard questionnaires measure what is of concern to patients with low back pain?

OBJECTIVE: Evaluate whether questionnaires identified all the self-reported patient outcomes raised in focus groups. DESIGN: Mixed methods research combined with qualitative analysis of focus groups. SETTINGS: Physical therapy clinic in a teaching hospital in Brazil. SUBJECTS: A total of 27 patients (aged >18 years, mean age 55.2 years) with chronic non-specific low back pain. INTERVENTIONS: Three focus groups were conducted by the same investigator and analyzed by meaning unit condensation. The results obtained from the focus groups were codified according to the International Classification of Functioning. A similar process was adopted to codify the Roland-Morris Disability Questionnaire, the Quebec Back Pain Disability Scale and the Oswestry Disability Index according to the International Classification of Functioning. The results of both coding processes were compared. RESULTS: In the analysis, seven main concepts were identified, comprising 77 meaning units. Only three meaning units were not linked to the International Classification of Functioning. Most of the codes present in the questionnaires and focus groups represent limitations to activities. Some codes were identified in the questionnaires that were not mentioned by the focus group participants. No questionnaire assessed environmental factors or problems related to specific parts of the body, and very few assessed body function, all of which were issues raised in the focus groups. CONCLUSION: This study shows that not all fields considered important by patients to their function are being evaluated, and emotional and contextual factors should be included in clinical assessments in order to fully understand patient need.

Common content between quality of life questionnaires for children with cystic fibrosis and the International Classification of Functionality, Disability and Health.

OBJECTIVE: To identify the most common quality of life instruments for children with cystic fibrosis and link the content with the International Classification of Functioning, Disability and Health (ICF). METHODS: The study was conducted in 2 stages. The first stage involved a review of the literature to select quality of life questionnaires. In the second stage 2 independent reviewers identified questionnaire items and categories corresponding to the ICF, according to approved methodology. The degree of agreement was calculated using the kappa coefficient. RESULTS: Two questionnaires were selected: the Cystic Fibrosis Questionnaire and DISABKIDS®. A total of 130 concepts were identified from the 112 items. Forty-seven different ICF categories were linked (k>0.62 for all questionnaires), 21 (44.7%) were related to the "body function" domain, 20 (42.6%) to "activity and participation" and 6 (12.8%) to "environmental factors". Thirteen items (10%) could not be linked because they represent personal factors or are not covered by the ICF. CONCLUSION: Body functions were the category most linked to the ICF. Environmental factors were poorly described, and no items were related to body structures in any of the instruments.

Patient-important activity and participation outcomes in clinical trials involving children with chronic conditions.

PURPOSE: Children with chronic conditions experience medical issues over long-term periods of time which can have lasting emotional and social consequences impacting daily life and functioning. Activities and participation outcomes are needed in order to comprehensively assess child-important health in clinical trials. Our objective was to review the extent to which activity and participation outcomes are included in clinical trials of childhood chronic disease and to determine what trial characteristics are associated with their use. METHODS: A review of a large clinical trial registration database (clinicaltrials.gov) was conducted over the 2010 calendar year. The measures used to assess primary and secondary endpoints were coded according to the ICF classification system. Trial characteristics that might be associated with activity and participation outcome use such as sponsorship type, intervention type, health condition, whether the trial was focused on pediatric patients, phase of trial and sample size were also extracted and explored with univariable and multivariable regressions. RESULTS: Four hundred and ninety-nine trials met inclusion criteria, 495 of which had complete information about hypothesized predictors. Only 36 out of 495 trials included an activity and participation outcome as part of the trial evaluation process. Both univariable and multivariable regression models showed that non-drug trials and late phase of trial (phase IV) showed the strongest likelihood with whether a trial would include an activity and participation outcome. DISCUSSION: Most registered clinical trials for children with chronic or ongoing medical conditions do not include a comprehensive approach to health outcomes assessment, especially drug trials and early phase trials. Outcome measures in pediatric clinical trials are lagging relative to World Health Organization standards for comprehensive health evaluation.

Generic patient-reported outcomes in child health research: a review of conceptual content using World Health Organization definitions.

AIM: Our aims were to (1) describe the conceptual basis of popular generic instruments according to World Health Organization (WHO) definitions of functioning, disability, and health (FDH), and quality of life (QOL) with health-related quality of life (HRQOL) as a subcomponent of QOL; (2) map the instruments to the International Classification of Functioning, Disability and Health (ICF); and (3) provide information on how the analyzed instruments were used in the literature. This should enable users to make valid choices about which instruments have the desired content for a specific context or purpose. METHOD: Child health-based literature over a 5-year period was reviewed to find research employing health status and QOL/HRQOL instruments. WHO definitions of FDH and QOL were applied to each item of the 15 most used instruments to differentiate measures of FDH and QOL/HRQOL. The ICF was used to describe the health and health-related content (if any) in those instruments. Additional aspects of instrument use were extracted from these articles. RESULTS: Many instruments that were used to measure QOL/HRQOL did not reflect WHO definitions of QOL. The ICF domains within instruments were highly variable with respect to whether body functions, activities and participation, or environment were emphasized. INTERPRETATION: There is inconsistency among researchers about how to measure HRQOL and QOL. Moreover, when an ICF content analysis is applied, there is variability among instruments in the health components included and emphasized. Reviewing content is important for matching instruments to their intended purpose.