The Influence of Social and Developmental Factors on the Timing of Autism Spectrum Disorder Diagnosis of Preschool-Aged Children: Evidence from a Specialized Chilean Center.

We investigated the influence of developmental and social factors on the age of autism diagnosis (AoD) in a cohort of toddlers living in Chile. A cross-sectional study was conducted among 509 preschool children diagnosed with autism spectrum disorder [M = 40.2 months (SD = 8.6), girls: 32%] in the neurodevelopmental unit of a university clinic in Santiago, Chile (2015-2023). Structural changes in the annual trend of AoD were tested. Generalized linear models (gamma distribution) with and without interaction terms were used for the multivariate analysis, adjusting for gender, residential area, year of diagnosis, developmental variables (language regression, delayed walking, and use of expressive verbal language), and primary caregiver age and education level (CEL). 95% confidence intervals of the unstandardized regression coefficients (B) were calculated using 1000 bootstrap resampling to estimate associations. AoD increased between 2021-2022 and decreased in 2023. Female gender (B = 2.72 [1.21-4.23]), no history of language regression (B = 3.97 [1.66-6.28]), and the presence of expressive verbal language at diagnosis (B = 1.57 [0.05-3.08]) were associated with higher AoD. Children whose caregivers had tertiary education were diagnosed earlier than those with ≤ 12 years of formal education. Although the influence of CEL increased with caregiver age, differences between CEL groups were significant only for caregivers aged ≥ 30 years. Improved education and early screening for clinical features of autism among healthcare professionals and the community, with a focus on young children without highly apparent developmental concerns and those from vulnerable social groups, are warranted.

Priorities and root cause analysis of quality and safety problems in chilean hospitals / Prioridades y análisis de las causas de los problemas de calidad y seguridad en hospitales chilenos

BACKGROUND: Quality improvement is an important component of hospital operations. AIM: To prioritise clinical quality and safety problems in Chilean hospitals according to their severity, frequency, and detectability. MATERIAL AND METHODS: The study was conducted between December 2018 and June 2019. To identify quality and safety problems, an exploratory study was conducted using an online survey aimed to those responsible for clinical quality and safety in Chilean hospitals. The survey was sent to 94 hospitals and completed by quality management personnel at 34 hospitals, yielding a total of 25 valid surveys for analysis. Based on the information gathered, a risk priority score was computed to rank the problems surveyed. Focus groups were held to find the root causes of the quality and safety problem with the highest risk priority score. RESULTS: The three highest risk priorities were:1 ineffective interprofessional communication,2 lack of leadership for addressing frequently recurring safety issues, and3 antimicrobial resistance due to inappropriate use of antibiotics. For the communication problem, the focus group found two main root causes: those due to personnel and those relating to the hospitals themselves. CONCLUSIONS: Hospitals can systematically use the proposed approach to categorize their main clinical quality and safety problems, analyze their causes, and then design solutions.

ANTECEDENTES: La mejora continua de la calidad es un componente importante en las actividades hospitalarias. OBJETIVO: Priorizar los problemas de calidad y seguridad en hospitales chilenos de acuerdo a su severidad, frecuencia y detectabilidad. MATERIAL Y MÉTODOS: Se efectuó un estudio exploratorio con una encuesta en línea para detectar problemas de calidad y seguridad, dirigida a quienes están a cargo de los problemas de calidad y seguridad en los hospitales. La encuesta fue enviada a 94 hospitales y respondida por los encargados de calidad y seguridad en 34 de ellos, lográndose 25 encuestas válidas para análisis. El estudio se llevó a cabo entre diciembre de 2018 y junio de 2019. Se diseñó una escala de prioridades de riesgo para determinar la importancia relativa de los problemas detectados. Se llevaron a cabo grupos focales para determinar las causas del problema más importante. RESULTADOS: En Chile, los problemas de calidad y seguridad más importantes son la falta de comunicación interprofesional, falta de liderazgo para abordar los problemas de seguridad y calidad, y resistencia a antibióticos debido a su uso inapropiado. Problemas relacionados al personal y relacionados al hospital fueron las causas primarias de la falta de comunicación. CONCLUSIONES: Los hospitales podrían utilizar este enfoque de forma sistemática para categorizar sus principales problemas de calidad y seguridad, analizar las causas y diseñar soluciones.

Caregiver-Child Agreement in Health-Related Quality of Life of Autistic Children and Adolescents.

This study examined the agreement of perceived health-related quality of life (HRQOL) between caregivers and autistic children and adolescents (n = 133, 5-12 years) using the Pediatric Quality of Life Inventory Generic Core Scales, Fourth Edition (PedsQL 4.0). Results reveal good to excellent agreement over this age range across the total, physical, and psychosocial health scales. However, the emotional, social, and school functioning scores demonstrated lower agreement in dyads with children aged 5-7 than in dyads with children aged 8-12 years. Despite these differences in agreement, overall, the PedsQL 4.0 caregiver-module is a reliable instrument for measuring HRQOL in autistic individuals aged 5-12 years.

Priorities and root cause analysis of quality and safety problems in chilean hospitals.

BACKGROUND: Quality improvement is an important component of hospital operations. AIM: To prioritise clinical quality and safety problems in Chilean hospitals according to their severity, frequency, and detectability. MATERIAL AND METHODS: The study was conducted between December 2018 and June 2019. To identify quality and safety problems, an exploratory study was conducted using an online survey aimed to those responsible for clinical quality and safety in Chilean hospitals. The survey was sent to 94 hospitals and completed by quality management personnel at 34 hospitals, yielding a total of 25 valid surveys for analysis. Based on the information gathered, a risk priority score was computed to rank the problems surveyed. Focus groups were held to find the root causes of the quality and safety problem with the highest risk priority score. RESULTS: The three highest risk priorities were:1 ineffective interprofessional communication,2 lack of leadership for addressing frequently recurring safety issues, and3 antimicrobial resistance due to inappropriate use of antibiotics. For the communication problem, the focus group found two main root causes: those due to personnel and those relating to the hospitals themselves. CONCLUSIONS: Hospitals can systematically use the proposed approach to categorize their main clinical quality and safety problems, analyze their causes, and then design solutions.

From sharing voices to making decisions: The case for centring community ownership in evaluation of health programme planning and management.

BACKGROUND: Community participation in health programme planning has gained traction in public health in recent decades. When an idea enters the mainstream, it becomes vulnerable to overuse and dilution, and public health professionals claiming "community participation" may intentionally or unintentionally prevent more meaningful participatory action. The principle of community-centred planning is seldom integrated into programme evaluation. We have previously argued that, to prevent ambiguity and abuse, a stronger and more explicit idea of community ownership is useful. Un-like "participation", "ownership" leaves little room for dilution. METHOD: This perspective piece explores a framework to support evaluating community ownership in planning, by emphasising decision-making power in health planning and management as a necessary element for evaluation alongside other outcomes. After defining the concept of community ownership, we identify and discuss challenges and research gaps related to implementing community ownership in health programme planning, management, and evaluation. Such issues include considering which communities have claims to programme ownership, alternative approaches to representation and participation that support ownership, gathering community values and preferences, and incorporating them into ongoing programme planning, management and evaluation. We consider methodological issues likely to arise when transitioning from gathering community voices - which is valuable but incomplete work - towards community decision making power in planning and evaluation. RESULTS: We use cases from recent policy and research in Chile as examples to consider through the lens of this framework. Finally, we discuss some current constraints in implementing community ownership in healthcare planning and evaluation. CONCLUSION: We encourage exploring how to practice evaluation in ways that will further our ability to be helpful professional supporters of community self-determination in finding their paths to health.

State of Mental Health Research of Adolescents and Youth in Chile: An Ontological Analysis.

Knowing the state of mental health research in adolescents and youth can be an important tool for decision-making, especially in contexts of limited resources. The aim of this study is to map the scientific research on adolescent and youth mental health in Chile using an ontological framework. We have mapped the population of research articles on mental health of adolescents and youth in Chile in Scopus, Web of Science, and SciELO databases onto the ontology. The PRISMA reporting guidelines were used to screen the 1688 items based on relevance, duplication, and version. The corpus of 346 articles was coded into the ontology through an iterative process among the seven authors. This ontological mapping shows isolated research efforts that have been carried out in Chile to explain the whole state of mental health in adolescents and youth. There is a lack of coordination between the priorities established by the decision-makers and the researchers. Our results coincide with the need to strengthen mental health research in the country, and to prioritizing those topics that contribute to decision-making based on the needs of the population.

Genomic surveillance of the Lambda SARS-CoV-2 variant in a global phylogenetic context.

The massive sequencing of severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) and global genomic surveillance strategies allowed the detection of many variants of concern and interest. The variant of interest Lambda (C.37), which originated in South America, has been the most prevalent in Peru and Chile, but its dispersion in other continents still remains unknown. The current study aims to determine the phylogenetic relationship among C.37 isolates worldwide, focusing on spike mutations to understand the spread of Lambda in pandemics. A total of 7441 sequences identified as C.37 were downloaded from the GISAID database; local analysis was carried out to identify spike mutations and phylogenetic analysis was carried out to determine the rate of spread of the virus. Our results showed some spike mutations of Lambda that allowed us to detect small local outbreaks in different countries that occurred in the past and identify several clades that have not yet been designated. Although the lineage C.37 is not epidemiologically relevant in Europe or North America, the endemic behavior of this variant in Peru had a major impact on the second SARS-CoV-2 wave.

[Motor disturbances in children with autism spectrum disorder]. / Alteraciones motoras en pacientes pediátricos con trastorno del espectro autista.

OBJECTIVE: To describe main motor disorders detected in children with autism spectrum disorder (ASD) and analyze associated clinical variables. PATIENTS AND METHOD: A cross-sectional observatio nal study of 96 children with ASD, median age 4 years (range, 3-9), 32.3% girls, and 18.8% preterm. Children were evaluated at the UC-CHRISTUS Clinical Hospital Neurodevelopmental Unit for three years. We analyzed the relationship between motor signs (stereotypies, delayed gait, and hypo/hyper tonia) and spoken language at 4 years of age. RESULTS: 63.5% of children presented a motor disorder, 33.3% had hand or body motor stereotypies at the time of the evaluation, and 28.1% had delayed gait (> 16 months of corrected gestational age). These children had a higher frequency of absence of spoken language at four years of age (OR = 9.36; 95% CI = 2.67-32.78) than patients without delayed gait. 40.6% of children presented alterations in muscle tone during the first two years of life (32.3% generalized hypotonia and 8.3% generalized hypertonia). A history of generalized hypotonia increases the chance of presenting delayed gait (OR = 2.65; 95% CI = 1.08-6.48) and motor stereo typies (OR = 2.63; 95% CI = 1.04-6.65). CONCLUSIONS: Children with ASD usually develop motor disorders that may precede the diagnosis of the condition. In ASD, infant hypotonia may predict the occurrence of other motor disorders, and delayed gait was associated with spoken language absence in preschool age.

Expanding the cross-cultural psychological assessment tool box with IQ test short forms.

OBJECTIVE: Short forms of standard intelligence tests are useful in clinical and research settings where administration of a full intelligence test is impractical or unnecessary. In cross cultural contexts where few tests are available, including brief intelligence tests, short forms may be particularly useful to meet clinical and research needs. However, there is little cross-cultural research on the validity of short forms. This study evaluated feasibility of short form development for the Spanish version of the Wechsler Intelligence Scale for Children-Fourth Edition (WISC-IV) and examined comparability of short-form IQ estimates in Spanish- and English-speaking children with Attention-Deficit/Hyperactivity Disorder (ADHD). METHOD: Participants included children with ADHD who were administered the WISC-IV Spanish (n = 165) or WISC-IV (n = 299). Full Scale IQs (FSIQs) were calculated for two-, three-, four-, and five-subtest short forms. Misclassification rates, mean absolute differences, and intraclass correlation coefficients (ICCs) were used to determine short form accuracy in estimating FSIQ. RESULTS: The WISC-IV short forms examined had generally strong psychometric properties (e.g., ICCs ranged from .78 to .94) and level of accuracy in estimating FSIQ did not differ across primary language of Spanish or English. CONCLUSIONS: Findings support feasibility of IQ short form development to help address mental health disparities in research and clinical screening for Spanish- and English-speaking pediatric populations with ADHD.

[Impact of COVID-19 pandemic confinement on the behavior of children and adolescents with autism spectrum disorder]. / Impacto del confinamiento en pandemia COVID-19 en la conducta de niños, niñas y adolescentes con trastorno del espectro autista.

Coronavirus disease (COVID-19) and confinement have affected access to the health system and have impacted people's mental health, particularly families of children with autism spectrum di sorder (ASD). OBJECTIVE: To investigate the perceptions of parents of children with ASD regarding benefits, positive changes, and difficulties in behavioral management at home during the first con finement due to COVID-19 in Chile. SUBJECTS AND METHODS: We performed an exploratory cross sectional qualitative study including 118 parents of individuals with ASD aged between 2 and 15 years. An online questionnaire, prepared by a multidisciplinary committee of national experts using Delphi methodology was applied, which contains four open-ended questions related to children's behavior (difficulties, improvements, benefits, and professional support required) during the pan demic. RESULTS: Parents perceived that confinement increased emotional stress for adults and chil dren, which could exacerbate behavioral problems. The interviewees perceived improvements in child social-affective, individual autonomy, and communication skills. The family and resilience aspects, such as time-sharing that emerged during the pandemic to support children's needs, were appreciated. Parents also reported the need for professional support in behavioral and emotional management during confinement. CONCLUSION: Caregivers value the integration of the family into therapies during confinement. It is necessary to complement these results with additional studies exploring different life contexts of families with children with ASD in Chile and the impacts of long term confinement.

Identifying local barriers to access to healthcare services in Chile using a communitarian approach.

INTRODUCTION: Previous research has used proxy variables or a unique construct to quantify healthcare access. However, there is a need for a different model that can handle this multivariable problem. This study seeks to develop a way to measure access to the local healthcare system with higher local resolution. METHODS: A new survey was developed based on communitarian claims, following a behavioural model and an ontological framework. The survey was used to identify local barriers to healthcare services and the local preferences for priority settings. The results were analysed using multiattribute utility functions and individual weights were assigned by a panel of experts. National and regional indexes of access to healthcare were developed. RESULTS: The survey contained seven modules and 104 questions. It was conducted on 1885 participants at 42 rural and 231 urban locations in three regions of Chile. The total disutility of the identified barriers to healthcare access at the national level was low (0.1448; values ranged between 0 and 1, with 1 representing a higher barrier) and was higher in the northern region (0.1467). The barriers associated with the health-policy component showed the highest disutility value, and specific barriers for each community were identified. CONCLUSIONS: These results have the potential to improve health decision-making in Chile and can be used to assess the impacts of new health policy reforms. Although this model was tested in Chile, it can be adapted for use in any other country. PATIENT OR PUBLIC CONTRIBUTION: Participants contributed to this study by completing a survey, participating in general talks and receiving brochures with the results obtained from this study.

[A system aimed at monitoring healthcare access in Chile]. / Vigilancia del acceso a la salud en Chile: un sistema de indicadores para monitoreo multidimensional.

BACKGROUND: A health system is successful when it maintains a healthy population and provides health services that are effective, equitable and safe. AIM: To design a system based on specific indicators to monitor equity in health care access in Chile. MATERIAL AND METHODS: Primary information about five dimensions of access to health was collected, namely health policies, characteristics of the health system, characteristics of the population at risk, utilization of health services and consumer satisfaction. Subsequently, inequalities in access between different social groups were identified. Finally, after collecting and filtering access indicators used in other systems and existing literature, the most relevant ones were selected to monitor each identified barrier. RESULTS: A system composed of 26 indicators, classified in the five dimensions of the framework was devised. It allows us to monitor those barriers with a greater impact on the population. For some specific indicators, population groups were disaggregated to carry out specific surveillances. CONCLUSIONS: The design of a multidimensional monitoring system for health access allows us to complement measures usually focused on a specific concept of access (such as utilization, coverage, etc.) with other dimensions. It includes those barriers that are relevant for the Chilean population. It also allows comparisons with other health systems and the generation of evidence to improve public policies.

Access to Healthcare during COVID-19.

Ensuring access to healthcare is critical to prevent illnesses and deaths from COVID-19 and non-COVID-19 cases in health systems that have deteriorated during the pandemic. This study aims to map the existing literature on healthcare access after the appearance of COVID-19 using an ontological framework. This will help us to formalize, standardize, visualize and assess the barriers to and drivers of access to healthcare, and how to continue working towards a more accessible health system. A total of 131 articles are included and considered for mapping in the framework. The results were also compared to the World Health Organization guidelines on maintaining essential health services to determine the overlapping and nonoverlapping areas. We showed the benefits of using ontology to promote a systematic approach to address healthcare problems of access during COVID-19 or other pandemics and set public policies. This systematic approach will provide feedback to study the existing guidelines to make them more effective, learn about the existing gaps in research, and the relationship between the two of them. These results set the foundation for the discussion of future public health policies and research in relevant areas where we might pay attention.

Clinical characteristics of children affected by autism spectrum disorder with and without generalized hypotonia.

In this cross-sectional study, we aimed to evaluate the association between generalized hypotonia (GH) and demographic features and clinical characteristics in toddlers (2 to 5 years) with autism spectrum disorder (ASD). Among 93 children, 32 (34.4%) had GH. These patients had a later onset of independent walking (17 vs. 15 months, p < 0.01), a higher proportion of motor stereotypies (65.6 vs. 27.9%, p < 0.01), a lower mean total score in the parental-reported Generic Core Scale of Pediatric Quality of Life Inventory 4.0 (71 vs. 76 points, p 0.03), and a higher mean total score in the Calibrated Severity Score of Autism Diagnostic Observation Schedule version 2 at diagnosis (6 vs. 5 points, p 0.02) compared to the group without GH.Conclusion: Hypotonia is associated with other motor abnormalities and could be an early marker for higher autistic symptom severity and lower quality of life in young children with ASD. What is Known: • Motor function is closely related to autism spectrum disorder (ASD) • Muscle hypotonia is present in 15% to 67% of children with ASD What is New: • Muscle hypotonia is associated with higher autistic symptom severity and lower quality of life in children with ASD • Children with ASD and muscle hypotonia have more commonly motor stereotypies and a later onset of independent walking.

Brief Report: Health-Related Quality of Life in Preschoolers with Autism Spectrum Disorder is Related to Diagnostic Age and Autistic Symptom Severity.

We conducted a cross-sectional study to explore whether clinical characteristics and autism diagnostic-traits severity are associated with caregiver-reported impairment of health-related quality of life (Pediatric Quality of Life Inventory Generic Core Scales, Fourth Edition) in 93 Chilean toddlers (age: 2-4 years) with autism spectrum disorder. Median total scale, physical health, and psychosocial health scores were 76 (IQR 70-81), 88 (IQR 81-94), and 71 (IQR 62-79), respectively. In multiple-regression analysis, diagnostic age (ß = 0.219; p 0.021) and Calibrated Severity Score of Autism Diagnostic Observation Schedule, second edition (ß = - 0.434; p < 0.001) were independently correlated to the total scale score. Lower age and higher autistic traits severity at diagnosis are correlated with worse well-being perception by caregivers.

Investigating public values in health care priority - Chileans´ preference for national health care.

BACKGROUND: This study aims to assess preferences and values for priority setting in healthcare in Chile through an original and innovative survey method. Based on the answers from a previous survey that look into the barriers the Chilean population face, this study considers the preferences of the communities overcoming those barriers. As a result six programs were identified: (1) new infrastructure, (2) better healthcare coverage, (3) increasing physicians/specialists, (4) new informatics systems, (5) new awareness healthcare programs, and (6) improving availability of drugs. METHODS: We applied an innovative survey method developed for this study to sample subjects to prioritize these programs by their opinion and by allocating resources. The survey also asked people's preferences for a distributive justice principle for healthcare to guide priority setting of services in Chile. The survey was conducted with a sample of 1142 individuals. RESULTS: More than half of the interviewees (56.4%) indicated a single program as their first priority, while 20.1% selected two of them as their first priority. To increase the number of doctors/specialists and improve patient-doctor communication was the program that obtained the highest priority. The second and third priorities correspond to improving and investing in infrastructure and expanding the coverage of healthcare insurances. Additionally, the results showed that equal access for equal healthcare is the principle selected by the majority to guide distributive justice for the Chilean health system. CONCLUSIONS: This study shows how a large population sample can participate in major decision making of national health policies, including making a choice of a distributive justice principle. Despite the complexity of the questions asked, this study demonstrated that with an innovative method and adequate guidance, average population is capable of engaging in expressing their preferences and values. Results of this study provide policy-makers useful community generated information for prioritizing policies to improve healthcare access.

Factors affecting the behavior of children with ASD during the first outbreak of the COVID-19 pandemic.

AIM AND METHODS: Cross-sectional data from 118 Chilean children with ASD collected during the pandemic outbreak of COVID-19 in 2020 were evaluated to analyze predictors of behavioral problem impairment. RESULTS: Forty-five percent of parents stated that their children's behavioral difficulties increased in intensity or frequency. The adjusted predictors were having a family member hospitalized with COVID-19 (OR = 4.11; 95% CI = 1.53-11.1) and parents' mental health disorders during the pandemic (OR = 2.43; 95% CI = 1.01-5.83). CONCLUSION: Potentially modifiable psychosocial factors affecting children's behavior should be considered in a possible second outbreak.

Vigilancia del acceso a la salud en Chile: un sistema de indicadores para monitoreo multidimensional / A system aimed at monitoring healthcare access in Chile

Background: A health system is successful when it maintains a healthy population and provides health services that are effective, equitable and safe. Aim: To design a system based on specific indicators to monitor equity in health care access in Chile. Material and Methods: Primary information about five dimensions of access to health was collected, namely health policies, characteristics of the health system, characteristics of the population at risk, utilization of health services and consumer satisfaction. Subsequently, inequalities in access between different social groups were identified. Finally, after collecting and filtering access indicators used in other systems and existing literature, the most relevant ones were selected to monitor each identified barrier. Results: A system composed of 26 indicators, classified in the five dimensions of the framework was devised. It allows us to monitor those barriers with a greater impact on the population. For some specific indicators, population groups were disaggregated to carry out specific surveillances. Conclusions: The design of a multidimensional monitoring system for health access allows us to complement measures usually focused on a specific concept of access (such as utilization, coverage, etc.) with other dimensions. It includes those barriers that are relevant for the Chilean population. It also allows comparisons with other health systems and the generation of evidence to improve public policies.

Factorial invariance of the Marianismo Beliefs Scale among Latinos in the Hispanic Community Health Study/Study of Latinos Sociocultural Ancillary Study.

OBJECTIVE: The Marianismo Beliefs Scale (MBS) assesses five components of marianismo, a cultural script of Latina gender role expectations. This study evaluated the MBS's psychometric properties across language, sex, and Latino subgroups (Mexican American, Central American, Cuban American, Dominican American, Puerto Rican, and South American). METHOD: Study sample was derived from the Hispanic Community Health Study/Study of Latinos (HCHS/SOL) Sociocultural Ancillary Study which consisted of a community sample of 4879 Latino adults aged 18-64 from four field centers (Miami, FL, USA; San Diego, CA, USA; Bronx, NY, USA; Chicago, IL, USA). RESULTS: Confirmatory factor analyses supported five factors. English and Spanish versions demonstrated equivalence of factor loadings and error variances across Latino subgroups and sex. CONCLUSION: Although the MBS English and Spanish versions are psychometrically sound measures for male and female Latino adults, future research is needed to determine whether direct scale scores are comparable.