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Minoritised ethnic families in England experience disproportionate barriers to accessing neurodevelopmental disorder (NDD) assessment and support despite universal healthcare provision. Existing evidence has focused on caregivers' perspectives or non-UK settings but little is known about how healthcare professionals (HCPs) perceive and interpret these inequities. Addressing this gap is essential for improving access, service design and workforce development. To explore HCPs' perceptions of the barriers and facilitators influencing minoritised ethnic families' access to NDD services in England. A multiple methods design was used, comprising an online national survey (n=264) and two online focus groups with primary, secondary and allied health professionals (n=9). Survey data were summarised descriptively and free text responses analysed using summative content analysis. Focus group transcripts underwent reflexive thematic analysis. Findings were summarised following parallel analysis of each data set. Patient and public involvement and engagement members from minoritised ethnic backgrounds contributed throughout. HCPs identified four interconnected barriers they perceived to influence access for minoritised ethnic families: (1) language, communication and meaning-making challenges, including differences in how concepts and expressions are understood, inconsistent interpretation and limited mental health literacy; (2) difficulties navigating complex, fragmented NDD pathways, exacerbated by digital literacy demands and unclear referral routes; (3) limited caregiver knowledge and understanding of NDDs, affecting symptom recognition and the ability to advocate effectively and (4) cultural norms, beliefs and stigma, including preferences for non-Western models of care, fear of diagnostic labels and the influence of extended family. Professionals also highlighted the impact of unconscious bias and limited cultural representation within services on referral decision-making and caregiver engagement. HCPs described several effective strategies for mitigating these barriers, such as culturally attuned communication, community-based engagement and flexible assessment approaches. Inequitable access to NDD services arises from the interaction of cultural, relational and structural factors across the healthcare pathway. HCPs' insights reveal multiple entry points for improving equity, particularly through communication support, culturally responsive practice and simplified referral processes. Embedding culturally informed communication, improving caregiver education, strengthening workforce diversity and coproducing service changes with communities may reduce avoidable delays and promote equitable access to neurodevelopmental assessment and support.
Diarrheal diseases remain a leading cause of death, especially in Africa, accounting for 1.17 million deaths globally in 2021, with rotavirus responsible for 32.2% of these deaths. Since the introduction of rotavirus vaccines in Kenya in 2014, several studies have demonstrated the clinical impact of the vaccine, showing a reduction in child deaths from diarrhea. However, limited evidence exists on the socioeconomic burden that is still posed by rotavirus diarrhea, especially in Kenya, where the prevalence remains high at 14%, as reported in the 2022 Kenya Demographic and Health Survey. The persistence of diarrheal burden and hospitalizations despite investments in diarrheal prevention and control suggests that medical and public health interventions do not automatically reduce the health burden and related economic burden and require the integration of policies that address other socioeconomic determinants of health demand. This study sought to investigate how health-seeking patterns and socioeconomic status intersect and influence the cost burden of diarrheal illnesses in Mukuru informal settlements in Kenya. A cross-sectional study was conducted between May 2023 and July 2025 among caregivers of children under five presenting with diarrhea at Mukuru clinics. Of the 500 diarrheal cases, 100 laboratory-confirmed rotavirus cases were analyzed. Costs were categorized as direct medical, direct non-medical, and indirect costs. Descriptive and stratified analyses were used to explore cost variations by socioeconomic status and care-seeking behavior. A gamma regression model assessed associations between the cost of illness and predictors including education, employment, prior care-seeking, and type of facility visited. The average cost of treating a diarrheal episode was estimated at $8.88 (95% CI: 7.25, 10.51) per patient. Direct medical costs comprised 60.36% of this cost and were mainly driven by drug prescriptions purchased outside clinics (30.18%), expenditure at other facilities on self-medication (19.37%), and expenditure at Mukuru clinics (10.81%). Income lost through work absence or leisure accounted for 36.82% at an average cost of $3.17 (95%:2.95, 3.58). Fragmented care pathways, drug stockouts, delayed care seeking, and inappropriate self-medication significantly increased household costs, regardless of insurance status. Employment status and type strongly influenced indirect costs, aggravated by long waiting times and repeated care-seeking. Overall, the findings indicate that the cost of childhood diarrhea in Mukuru is driven less by caregiver socioeconomic characteristics-given that Mukuru residents share similar vulnerabilities-and more by health-seeking behavior and health system factors, particularly drug availability and fragmented care pathways. Strengthening drug supply chains, improving the quality and reliability of public primary healthcare, and promoting timely and proper care-seeking pathways could substantially reduce household costs and improve financial protection in urban informal settlements.
Children and young people with intellectual and developmental disability have long been known to suffer from inequities in accessing safe and quality health care. These challenges are most felt within the emergency department due to its busy, crowded, and overstimulating environments with staff that are not trained to provide reasonably adjusted care. The study is an evaluation using qualitative and quantitative methods of a continuing education and quality improvement programme designed to increase the knowledge, skills, and confidence of healthcare staff in providing reasonable adjustments to children and young people with intellectual disability in hospitals. This study evaluated the Motivated for Change programme, which uses Behavioural change, Adult Learning, and Quality Improvement strategies to drive practice change and service improvement. A hundred and thirty-one and 89 staff participated in a pre- and post-intervention survey. Interviews were conducted with parents of children and young people with intellectual and developmental disability attending the emergency department. Observational studies were also conducted in the pre- and post-intervention phase. These were transcribed, categorised, and coded with themes derived. Consensus was reached through meetings with the research team. The Motivated for Change programme has demonstrated significant increases in staff knowledge, skills, and experience in providing safe and quality care for these children and young people. Evidence of change is reflected in the parent and staff interview and observational study themes. In addition, staff were further motivated to undertake quality improvement projects, develop an in-house training programme to provide ongoing training for new staff, and make further improvements in the department. The Motivated for Change programme has demonstrated its efficacy in enabling changes in the practice of reasonable adjustments and the emergence of local champions for sustained efforts for ongoing improvements in safety and quality of care. The development of the research question and outcome measures was informed by data from previous research publications involving parents and staff. We sought input from a parent advisory committee in the design of the study. Parents were not involved in the recruitment and conduct of the study. Results were presented to the parent advisory at the end of the study.
University is a pivotal life-course transition in which academic, social and geographic changes intersect with heightened risk for mental disorders and maladaptive behaviors. Health Mode On (HMO) and its longitudinal expansion Health Mode On Plus (HMO+), funded by the Italian Ministry of University and Research (MUR) competitive PRO-BEN 1 and PRO-BEN 2 calls, couple harmonized surveillance with a stepped, integrated model of prevention and care aligned with the World Mental Health-International College Student (WMH-ICS) framework to address fragmentation of campus provision and unmet need. HMO implements a cross-sectional, census-style online survey paired with the implementation of an integrated counseling pathway and a Virtual Academy for staff and student mentors. HMO+ adds 12-month re-contact, objective lifestyle sub-studies, and a strengthened shared digital platform that supports first-contact intake, triage, and orientation to the most appropriate service. Within this framework, students with an anxiety risk profile may be offered participation in an embedded two-arm randomized evaluation of digital cognitive-behavioral therapy (e-CBT) versus counseling-as-usual. The consortium spans five universities, four higher artistic and musical education (AFAM) institutes and one Scuola Superiore Universitaria, in coordination with University Sports Centres (CUS). Primary outcomes are 12-month and lifetime DSM-5 disorder status derived from validated WMH-ICS/CIDI-based modules (mood; anxiety; trauma- and stressor-related; obsessive-compulsive and related; eating; attention-deficit/hyperactivity; and substance use disorders), and safety outcomes (suicidal ideation, planning and non-suicidal self-injury). Secondary outcomes include psychological distress, role impairment, days-out-of-role, sleep, physical activity (accelerometry in subsamples), dietary habits, nicotine and cannabis use, behavioral addictions (e.g., gaming, gambling, internet addiction), social connectedness, academic engagement and service access. Analyses will estimate weighted prevalence and impairment with multilevel models; longitudinal change with mixed-effects models and GEE; and naturalistic program effects using difference-in-differences with propensity-score methods. Ethics approvals will be obtained at the coordinating and partner institutions. GDPR-compliant governance and results' FAIR-oriented sharing are planned, alongside open-access publications, institutional dashboards and policy briefs.
Rare and ultra-rare genetic diseases (GDs) involve complex, multidimensional burdens not fully captured by clinical endpoints, highlighting uncertainties in the availability, scope, and quality of Health-Related Quality-of-life patient-reported outcome measures (HRQoL-PROMs). To identify PROMs developed or validated to assess HRQoL in rare and ultra-rare GDs, map their content using the International Classification of Functioning, Disability and Health (ICF), and evaluate their measurement properties according to COSMIN methodology. Original studies reporting PROM development or measurement properties in rare or ultra-rare GDs were included. PubMed, Embase, PsycINFO, Web of Science, registries, outcome-measure repositories, reference lists, and citation tracking were searched from inception to March 26, 2026, without language restrictions. Study selection, data extraction, and risk-of-bias (RoB) assessment were performed independently. Methodological quality was evaluated using the COnsensus-based Standards for the selection of health Measurement Instruments (COSMIN) RoB checklist. Measurement properties were rated as sufficient, insufficient, indeterminate, or inconsistent, and certainty of evidence was assessed using a modified GRADE approach. PROM content was mapped to ICF components and synthesized narratively; no meta-analysis was conducted due to heterogeneity. Fifty-nine studies were included, covering 45 PROMs across 29 rare or ultra-rare GDs. Instruments were predominantly disease-specific, although generic and adapted measures were also identified. PROMs mainly addressed body functions and activities/participation, while environmental factors, social participation, stigma, and access-to-care domains were consistently underrepresented. Internal consistency and construct validity were most frequently assessed, whereas responsiveness, measurement error, and cross-cultural validity were rarely evaluated. Only three PROMs (HAE-QoL, NF1-AdQoL, EPP-QoL) were classified as COSMIN category A and recommended; most were category B, and five were category C. The evidence is limited and methodologically weak, and many QoL-PROMs fail to capture key multidimensional aspects of QoL; more rigorous, patient-centered, disease-specific development and validation are needed. This review examined questionnaires used to assess health related quality of life in people with rare and ultra-rare genetic diseases. Although 45 PROMs were identified, only three had enough evidence to be recommended. Many questionnaires focused mainly on symptoms and physical functioning, while important aspects such as social participation, stigma, care access, and environmental support were often missing. Future PROMs should be developed with strong patient involvement and validated across age groups, languages, and disease contexts.
In 2019, the Innovative Medicines Initiative funded the ConcePTION project to enhance monitoring of medication safety in pregnancy and breastfeeding. This paper describes how the ConcePTION Pregnancy Algorithm (PA) identified pregnancies in 10 diverse European electronic healthcare data sources and estimated their duration. Data sources from six European countries were mapped to the ConcePTION Common Data Model. Any pregnancy-related record was retrieved from various available data banks, including birth register, primary care records, and hospital records, and reconciled into episodes of pregnancy (starting between 01/2015 and 12/2019), each with start date, end date, and type of end. A random forest model was used to estimate missing gestational ages for incomplete records. Parameters were tailored to data sources to address local variations in data availability, collection, and governance. Model performance was evaluated using cross-validated Root Mean Squared Error (RMSE). The PA identified ~2.7 million pregnancies, in over 2.2 million individuals. Most ended in live births (50%-83%), 1%-15% in elective terminations, and 4%-10% in spontaneous abortions, depending on data sources. Pregnancies with unknown type of end were also retrieved (2%-34%). Gestational age was predicted for 6%-89% of records (RMSE: 17-50 days). The median gestational age at first identified pregnancy record ranged from 47 to 280 days. We developed an open-source algorithm to identify and date pregnancies, including early-stage pregnancies with unknown end and/or ongoing at the time of data extraction. This algorithm may facilitate multinational studies, improving generation of timely real-world evidence about use and safety of medicinal products in pregnancy. Pregnant individuals are often excluded from clinical trials, which limits the availability of evidence on the safety of medicines used during pregnancy. To help address this gap, the Innovative Medicines Initiative funded the ConcePTION project, aimed at improving the monitoring and communication of medication safety during pregnancy and breastfeeding. As part of this initiative, we developed the ConcePTION Pregnancy Algorithm (PA), a tool designed to identify and estimate the duration of pregnancies using routinely collected healthcare data. The algorithm combines information from various sources, including hospital records, primary care data, and birth registers. When applied to 10 healthcare databases across six European countries, the PA identified approximately 2.7 million pregnancies between 2015 and 2019. It successfully captured early‐stage pregnancies, as well as those with unknown end or still ongoing at the time of data collection. Those cases are often overlooked by previously published algorithms for the identification of pregnancies. The PA employs machine learning techniques to estimate missing pregnancy start dates. As an open‐source tool, it can be tailored to accommodate diverse healthcare systems and governance restrictions. By enabling more complete and reliable identification of pregnancy episodes, the PA supports high‐quality research and the timely generation of evidence on medicine use and safety during pregnancy. The end of a pregnancy in the early stages, such as spontaneous abortions, is more likely to go unrecorded in electronic healthcare databases compared to an end of pregnancy with longer course. Existing pregnancy‐finding algorithms generally rely on data recorded at the end of pregnancy, potentially introducing selection bias. We developed an algorithm to identify early‐stage, ongoing, and pregnancies with unknown ends, leveraging a Random Forest model to estimate pregnancy start dates when they are not directly recorded. The algorithm operates in a standardized yet adaptable manner across diverse data sources, while maintaining methodological transparency. We described and interpreted the algorithm's results across 10 diverse European data sources, varying in data availability.
Globally, parenting interventions have been shown to improve caregiving practices and child development. However, rigorous evidence from sub-Saharan Africa remains limited, particularly for programmes that leverage multiple community-based delivery platforms. We evaluated the effectiveness of the Moments that Matter (MTM) parenting programme delivered by community volunteers in partnership with faith leaders on child development and caregiving-related outcomes in Kenya. We conducted a cluster-randomised controlled trial in two counties in western Kenya. Villages were randomly assigned to the MTM parenting programme or a standard-of-care waitlist control, stratified by county. Eligible participants were primary caregivers of children aged 0-18 months. The intervention consisted of monthly group sessions and home visits delivered over 18 months. Caregivers were surveyed at baseline and endline. The primary outcome was child development measured using the Caregiver Reported Early Development Instruments. Intervention effects were estimated using mixed-effects models with a difference-in-differences, intention-to-treat approach. Between February and March 2023, 595 caregiver-child dyads in 46 villages were enrolled and randomly assigned to the intervention (n=310) or control (n=285). At endline, there were no overall intervention effects on child development outcomes. Moderate-to-large effects were observed across multiple secondary outcomes, including caregiver stimulation, harsh discipline, caregiver mental health, social support, intimate partner violence victimisation, child dietary diversity, and male caregiver engagement, as reported by female primary caregivers. Exploratory subgroup analyses revealed treatment heterogeneity by county, with small significant improvements in child language and socioemotional development in one county but null effects in the other. A multicomponent parenting programme delivered in partnership between community volunteers and faith leaders improved multiple caregiving and family well-being outcomes but did not lead to overall improvements in child development. Findings highlight the potential of integrating multiple community-based platforms for delivering parenting programmes, while underscoring the need for implementation research to enhance impacts on child development at scale. NCT05796934.
Early childhood education and care (ECEC) is widely recognized for supporting children's development and school readiness; however, evidence from Western Australia remains limited. To examine the association between ECEC attendance and developmental vulnerability at school entry. This population-based cohort study included children participating in Australian Early Development Census waves in Western Australia from 2009 to 2021. Analyses were conducted between November 2025 and January 2026. The primary exposure was participation in ECEC, defined as attendance at either preschool or daycare before starting full-time school. Preschool and daycare were also examined separately. Additional analyses examined overlapping ECEC exposure patterns, including children who attended both preschool and daycare. Developmental vulnerability on 1 or more domains (DV1) and on 2 or more domains (DV2) across 5 Australian Early Development Census domains: physical health and well-being, social competence, emotional maturity, language and cognitive skills (school-based), and communication skills and general knowledge. Mixed-effects modified Poisson regression with robust SEs estimated adjusted relative risks (aRRs). Of 123 256 children, complete data were available for 117 691 children in the ECEC analysis (59 335 [50.4%] male; 87 216 [74.1%] aged 5 years 1 month to 5 years 10 months), 117 496 in the preschool analysis (59 234 [50.4%] male; 87 089 [74.1%] aged 5 years 1 month to 5 years 10 months), and 85 544 in the daycare analysis (43 289 [50.6%] male; 63 155 [73.8%] aged 5 years 1 month to 5 years 10 months). Preschool attendance was high (95.0%; 111 650 children), whereas daycare attendance increased from 23.1% (4362 children) in 2009 to 37.1% (6478 children) in 2021. ECEC attendance was associated with a reduced risk of developmental vulnerability (DV1, aRR, 0.78; 95% CI, 0.74-0.82; DV2, aRR, 0.67; 95% CI, 0.62-0.72). Similar associations were observed for preschool. In contrast, daycare attendance was associated with a higher risk of DV1 (aRR, 1.09; 95% CI, 1.06-1.13) and DV2 (aRR, 1.15; 95% CI, 1.10-1.21), with higher vulnerability in social competence and emotional maturity but lower vulnerability in language and cognitive skills (school-based) and communication skills and general knowledge. In this cohort study of 123 256 children, participation in ECEC, particularly preschool, was associated with lower developmental vulnerability at school entry. These findings support efforts to improve equitable access to early childhood education. The heterogeneous associations for daycare attendance suggest that differences in participation patterns, timing, and contextual factors may influence developmental outcomes and warrant further investigation.
Parental involvement in a child's self-monitoring and treatment, including challenges encountered during treatment, influences the life satisfaction of caregivers of children with type 1 diabetes mellitus (T1DM). This study aimed to assess the level of life satisfaction among parents of children with T1DM and to examine the impact of selected sociodemographic and medical factors on life satisfaction. The study was conducted between September 1st, 2024, and March 1st, 2025, using a questionnaire designed by the author and the standardized Satisfaction with Life Scale (SWLS). Participants were parents of children aged 2 to 18 with a diagnosis of T1DM for more than one year, who were receiving care at four Diabetes Centers in the Mazovian, Pomeranian, and Warmian-Masurian voivodeships in Poland. A total of 327 parents of children with T1DM participated in the study. The mean ages of mothers and fathers were 41.5 ± 6.6 years and 44.1 ± 7.1 years, respectively, and the average age of the children was 11.8 ± 3.9 years. The mean duration of diabetes was 5.47 ± 3.62 years. The median SWLS sten score was 6.0 (4.0÷7.0). Higher life satisfaction was observed among professionally active fathers, parents living in nuclear families, and parents reporting a very good financial situation. Parents of children with T1DM who consulted a psychologist, psychotherapist, or psychiatrist reported lower life satisfaction. The life satisfaction of parents of children with T1DM was average. The parents of children with T1DM who have lower life satisfaction more likely to seek psychological support. The study demonstrated the influence of the roles of family members (mother vs. father), the father's employment status, family structure, and the family's financial status on life satisfaction. Independent sociodemographic factors were parent/caregiver and family financial status. Given the complexity of T1DM management, multidisciplinary support is essential for both children and their families. Efforts should be made to protect the mental health of children with T1DM and their parents. Facilitated access to specialist care should be prioritized. Nurses should develop family-centered care plans and work to reduce factors that negatively affect the life satisfaction of children and their families. The current parental life satisfaction score is important in providing daily care for children with T1DM. If the parental life satisfaction is low, the family should be provided with psychological support. Nurses should actively cooperate with psychologists, psychotherapists, and social workers in caring for children with T1DM, and should also inform caregivers on the current methods of support for families of children with chronic diseases. Up-to-date parental life satisfaction should be assessed during follow-up visits with educational nurses (diabetes educators) at the Diabetes Clinic. The development and implementation of a screening questionnaire would be a valuable component of nursing care planning for children with T1DM and their parents, as it would enable the rapid identification of the needs of both children and their parents (e.g., regarding education, emotional support, and caregiving). This would facilitate comprehensive, family-centered, and personalized care, while helping to prevent caregiver burnout, and improve the quality of family functioning in their home environment. These measures would support the individualization of care plans, enable early crisis intervention, and improve communication between parents and healthcare professionals. Healthcare professionals play a key role in identifying parental difficulties and ensuring specialized care for those most in need. A holistic and systemic approach that addresses both physical and mental health is crucial for improving the outcomes, self-monitoring results, and treatment of T1DM in children and adolescents, as well as for improving the quality of life of children and their parents.
To describe the role of the Risk and Protective Factors Indicator Management Committee (RPF CGI) in the resumption and update of the Interagency Health Information Network (Rede Interagencial de Informações para a Saúde - Ripsa) indicator matrix in 2023, highlighting the sustainability of data sources and validation processes. Interinstitutional technical meetings were held between 2023 and 2025, involving 36 institutions, to review, define, and validate the indicators using a standardized indicator qualification form. A consensus was reached to use data from the Surveillance System for Risk and Protective Factors for Chronic Diseases by Telephone Survey (Sistema de Vigilância de Fatores de Risco e Proteção para Doenças Crônicas por Inquérito Telefônico - Vigitel), National Study of Infant Feeding and Nutrition (Estudo Nacional de Alimentação e Nutrição Infantil - Enani), Live Birth Information System (Sistema de Informações sobre Nascidos Vivos - Sinasc), National Health Survey (Pesquisa Nacional de Saúde - PNS), Household Budget Survey (Pesquisa de Orçamentos Familiares - POF), National School Health Survey (Pesquisa Nacional de Saúde do Escolar - PeNSE), National Demographic and Health Survey (Pesquisa Nacional de Demografia e Saúde - PNDS), Annual Industrial Survey - Product (Pesquisa Industrial Anual - Produto - PIA-Produto), National Survey on Health and Nutrition (Pesquisa Nacional sobre Saúde e Nutrição - PNSN), and National Oral Health Survey (Pesquisa Nacional de Saúde Bucal - SB Brasil). The matrix was expanded to 39 indicators, distributed across nine dimensions: noncommunicable chronic diseases, alcohol consumption, smoking, physical activity, nutritional status, dietary intake, childbirth, violence, and oral health. The RPF CGI contributed to the qualification and sustainability of Ripsa indicators, which are essential for monitoring public policies, supporting evidence-based decision-making, and addressing health inequalities, aligning with national and international agendas such as the Sustainable Development Goals. Descrever a atuação do Comitê de Gestão de Indicadores de Fatores de Risco e Proteção (CGI FR&P) na retomada e atualização da matriz de indicadores da Rede Interagencial de Informações para a Saúde (Ripsa) em 2023, destacando a sustentabilidade das fontes de dados e dos processos de validação. Foram realizadas reuniões técnicas interinstitucionais entre 2023 e 2025, envolvendo 36 instituições, para revisão, definição e validação dos indicadores, com utilização de ficha de qualificação de indicadores padronizada. Foi consensuado o uso dos dados provenientes do Sistema de Vigilância de Fatores de Risco e Proteção para Doenças Crônicas por Inquérito Telefônico (Vigitel), Estudo Nacional de Alimentação e Nutrição (Enani), Sistema de Informações sobre Nascidos Vivos (Sinasc), da Pesquisa Nacional de Saúde (PNS), Pesquisa de Orçamentos Familiares (POF), Pesquisa Nacional de Saúde do Escolar (PeNSE), Pesquisa Nacional de Demografia e Saúde (PNDS), Pesquisa Industrial Anual Produto (PIA-Produto), Pesquisa Nacional de Saúde e Nutrição (PNSN) e Pesquisa Nacional de Saúde Bucal (SB Brasil). A matriz foi ampliada para 39 indicadores, distribuídos em 9 dimensões: doenças crônicas não transmissíveis, consumo de álcool, tabagismo, atividade física, estado nutricional, consumo alimentar, parto, violência e saúde bucal. O CGI FR&P contribuiu para a qualificação e sustentabilidade dos indicadores da Ripsa, essenciais para o monitoramento de políticas públicas, decisões baseadas em evidências e enfrentamento das desigualdades em saúde, alinhando-se às agendas nacionais e internacionais, como os Objetivos de Desenvolvimento Sustentável (ODS).
Selective mutism (SM), an anxiety disorder often beginning in early childhood, can impair communication, social interaction, and educational progress. When left untreated, problems may persist into adulthood and impact longer term mental health. Although effective interventions exist, many children with SM are unable to access support services, in part due to the lack of suitable training for professionals in SM, the absence of national guidelines, and unclear professional responsibilities which together create gaps in provision. To survey UK therapists working in the National Health Service (NHS), Local Authorities or Health and Social Care (HSC) services who support preschool and primary school-aged children (3-12 years) with SM to identify the training therapists have received, their perceived training needs, the professions providing interventions, and the nature of the interventions delivered. A 32-item online survey was distributed via professional organisations and specialist networks, charity forums, and social media using snowball sampling. Results were analysed using descriptive statistics and free text quotes depicting therapists' opinions or experiences were used to triangulate the quantitative data. Of 244 responses, 201 met eligibility criteria. Most respondents were speech and language therapists (81%), followed by clinical psychologists (11%), educational psychologists (5%) and other professions (3%). Just over half (59%) had received some form of SM training, but only 15% received training during their professional qualification. The majority (85%) expressed the need for additional training in SM to do their jobs particularly in the areas of delivering intervention, addressing co-occurring conditions and working within multidisciplinary teams. Three quarters of the sample (75%) had provided intervention for children with SM, predominantly within schools, involving parents/carers (95%) and teaching staff (96%). Intervention complexity and number of components increased with child age; the most common components across ages were exposure, rapport building, transfer of control and psychoeducation. However, there was extensive variability in the dosage of the interventions provided. This exploratory survey with a non-representative sample suggested that the intervention components used, the people involved, and where the intervention occurred generally reflected the available evidence base. However, even in this sample who are more likely to have an interest in SM, there are still gaps in professional training and variability in service provision for children with SM. To promote consistent, evidence-based care, we recommend development of national cross-profession guidelines and quality standards for professional training and clinical management of children with SM. What is already known on the subject Effective interventions for selective mutism (SM) exist, but many children cannot access appropriate support. Inadequate professional training, absence of national guidelines, and unclear responsibilities across professions have been identified as key barriers to provision. What this paper adds to the existing knowledge This first UK-wide exploratory survey of therapists highlights that SM training is rarely included in professional qualification courses, leaving most practitioners seeking additional training post-qualification. Intervention components used by the sample of therapists reflected the current evidence base and increased in complexity with age; there was wide variation in dosage and delivery. The findings provide new evidence on which professions deliver SM interventions in a sample of UK therapists and the training gaps they experience. What are the potential implications of this study? There is a pressing need to embed SM training into professional qualification programmes and to provide accessible cross-professional specialist training post-qualification. Developing cross-profession guidelines and quality standards will help ensure consistency, accountability and equitable delivery of evidence-based interventions for children with SM across the UK.
Systematic collection of social determinants of health (SDoH) data remains inconsistent across health care settings, despite its critical impact on patient outcomes. Large language model-powered chatbots offer promise for scalable SDoH data collection, but rigorous, feasible evaluation methods for patient-facing applications are lacking. This study aimed to describe an efficient, iterative, multidisciplinary approach for developing and evaluating a patient-facing SDoH chatbot using synthetic data and case simulation, with the goal of optimizing both chatbot performance and the evaluation rubric prior to clinical deployment. A 10-criterion evaluation rubric was adapted from established health care AI frameworks and applied to 27 synthetic clinical scenarios representing diverse SDoH profiles. Scenarios were role-played by a licensed clinical social worker, and chatbot-patient interactions were rated by 3 members of the research team that were multidisciplinary experts: a social worker, a nurse practitioner, and a physician. Quantitative analysis used percent agreement and Fleiss κ to characterize chatbot performance and rater consensus, with percent agreement selected due to the high prevalence of ceiling effects in several domains. Qualitative analysis synthesized rater feedback to guide iterative refinement of both chatbot prompts and rubric domains. Across 27 simulated cases, the chatbot received high proportions of positive ratings for accurate interpretation (agreement=0.98%, 95% CI 0.91-0.99), communication quality, and cultural sensitivity (agreement=0.99%, 95% CI 0.93-1.00), and appropriately adaptive questioning (agreement=0.99%, 95% CI 0.93-1.00). Lower performance was observed in domain focus and completeness (agreement=0.51%, 95% CI 0.40-0.61), completeness of data capture (agreement=0.59%, 95% CI 0.48-0.69; Fleiss κ=0.18), and safety (agreement=0.69%, 95% CI 0.58-0.78; Fleiss κ=-0.04), prompting targeted adaptations. Qualitative feedback highlighted the importance of distinguishing screening from clinical interviewing capabilities and informed the refinement of the rubric, including clarifying the definition of safety to focus on recognition of physical and mental health emergencies. This study describes a formative feasibility approach for iterative refinement of a patient-facing SDoH chatbot and its evaluation rubric using synthetic case simulation. Future work will include independent external raters, patient stakeholders, repeated scenario testing, and prospective clinical evaluation.
Children with special health care needs (CSHCN) often rely on cross-sectoral care networks involving medical, therapeutic, educational, and social services. However, key dimensions of integrated care, including cross-sectoral communication and attention to family impact, remain challenging. Understanding factors that shape caregiver-reported experience of integrated care can inform program development to strengthen integrated care. We aimed (1) to quantify caregiver-reported experience of integrated care and (2) to examine associations between dimensions of caregiver-reported experience of integrated care and sociodemographic, health- and network-related correlates. We analyzed cross-sectional data from the nationwide PART-CHILD cohort. Caregivers of CSHCN with predominantly neurological, developmental, and behavioral conditions were recruited in specialized outpatient facilities in Germany and completed questionnaires. Caregiver-reported experience of integrated care was assessed using the German Pediatric Integrated Care Survey, yielding composite scores for Team quality and communication and Attention to family impact. Associations with sociodemographic characteristics, reason for seeking care, unmet needs, and care network size were examined using multivariable linear regression models. Caregivers of CSHCN (n = 459) reported moderate Team quality and communication (mean 4.1 ± 1.1) and low Attention to family impact (2.3 ± 1.1). Higher unmet needs were associated with lower Team quality and communication (1-4 unmet needs: β = -0.28, 95% CI: -0.52 to - 0.04; ≥5 unmet needs: β = -0.83, 95% CI: -1.28 to - 0.38; reference: none). Cognitive impairment (β = 0.36, 95% CI: 0.03 to 0.69; reference: physical impairment) and larger care networks (4 - 5 providers: β = 0.33, 95% CI: 0.08 to 0.58; 6 - 10 providers: β = 0.38, 95% CI: 0.07 to 0.70; reference: 2-3 providers) were associated with higher Attention to family impact. Strengthening integrated care for CSHCN may require greater attention to family-level concerns, which were rated low in this sample. The association between unmet needs and Team quality and communication suggests a close link between perceived integration and needs-based service delivery. Correlates of Attention to family impact, including impairment type and care network size, warrant further investigation and may help identify target groups for interventions to strengthen family-centered services. The study was prospectively registered in the German Clinical Trials Register on 16 November 2018 (ID: DRKS00015054).
Primary health care (PHC) is recognized as pivotal for achieving universal health coverage and reducing mortality rates among children younger than 5 years. To estimate the association of effective PHC coverage with child mortality in 3 diverse sub-Saharan countries over the past 2 decades and to estimate the number of child deaths that could occur by 2035 if PHC services are dismantled due to the current decrease in development assistance for health funding. This cohort study assessed children younger than 5 years from January 1, 2007, to December 31, 2022, in Mozambique, Gabon, and Ethiopia. The study drew on 5 national and subregional representative US Agency for International Development Demographic and Health surveys with longitudinal information from the 3 countries. Statistical analysis was performed from October 2024 to May 2026. An effective PHC coverage index (PHC index) was developed for this study, integrating core dimensions of child PHC service provision and access and structured into progressively ordered coverage categories. The outcome was child mortality, assessed with 2-way fixed-effects multivariable Poisson regression models with child-clustered standard errors, adjusted for relevant confounding factors at the individual, regional, and national levels. This evaluation was also integrated into validated microsimulation forecasting analysis. Of the 118 911 child-year observations of 37 583 children (mean [SD] age, 1.4 [1.3] years; 60 252 boys [50.7%]), Gabon had the greatest coverage of service provision, followed by Mozambique and Ethiopia, though Mozambique showed a marginally higher proportion in the highest category (Gabon, 796 of 33 269 [2.4%]); Mozambique, 554 of 20 728 [2.7%]; and Ethiopia, 317 of 64 914 [0.5%]); the inverse pattern was observed for the lowest coverage categories (Gabon, 2143 of 33 269 [6.4%]; Mozambique, 1976 of 20 728 [9.5%]; and Ethiopia, 32 189 of 64 914 [49.6%]). Across all child-year observations, there were 2166 deaths (1.8%). Ethiopia accounted for 2.1% of deaths (1338 of 64 914 child-years), Mozambique for 1.8% (364 of 20 728), and Gabon for 1.4% (464 of 33 269). Increasing PHC coverage was associated with decreases in child mortality in a dose-response manner, reaching a 58% reduction (rate ratio, 0.42 [95% CI, 0.19-0.91]) for consolidated high coverage. The dismantling of PHC coverage, triggered by the defunding of development assistance for health , may lead to an increase in preventable child deaths, amounting to an estimated 373 108 deaths (95% uncertainty interval, 313 152-444 244 deaths) across the 2025 to 2035 period. This cohort study found evidence indicating that PHC was associated with substantially reduced mortality rates among children younger than 5 years in sub-Saharan Africa over the past 2 decades. These findings suggest that PHC should be expanded rather than dismantled, particularly amid the ongoing defunding of development assistance for health.
For its high prevalence, diagnostic and therapeutic challenges, and serious burden on affected individuals and societies, chronic pain is considered a public health priority worldwide. However, there is a paucity of data regarding unmet needs of chronic pain sufferers. The aim of the present study was to develop and validate the Needs Evaluation Questionnaire for Chronic Pain (NEQ-CP) for assessing unmet needs of chronic pain patients. The questionnaire development and validation followed some steps: (i) operational definition and item formulation; (ii) investigation about item relevance and comprehensibility; (iii) item selection based on comprehensibility and content validity; (iv) item selection based on item descriptives and item response theory; (v) reliability and validity testing. Participants (an online sample of 521 Italian patients with chronic pain associated with various diseases) were cross-sectionally administered the initial version of the questionnaire and some scales chosen for validity testing. Content validity testing led to the identification of a provisional pool of items. Item analysis and item response theory analyses allowed the selection of 21 items for the final version of the NEQ-CP. The questionnaire showed good general and local reliability, and construct and criterion validity evidence were provided. The developed and validated questionnaire is an effective and easy-to-use tool in the assessment of the unmet needs of patients with chronic pain. It can be used to identify individuals requiring immediate support and to assist those involved in health policies and research in allocating resources to areas with greater and more urgent needs.
The UNDP/UNFPA/UNICEF/WHO/World Bank Special Programme of Research, Development and Research Training in Human Reproduction (HRP) has a mandate to lead in sexual and reproductive health and rights research and to support research capacity strengthening. Starting in 2016, it did so through supporting the latter through a large network of research institutions called the HRP Alliance. This commentary highlights the work of the HRP Alliance in response to the coronavirus disease (COVID-19) pandemic. The onset of the COVID-19 pandemic prompted the HRP Alliance to adapt the way they had been working. HRP Alliance research capacity strengthening hubs actively contributed to developing a research agenda based on WHO's research and development blueprint and country-specific needs. They also took on leading roles in developing, adapting to each country/setting, and implementing research projects aimed at understanding how the COVID-19 pandemic was affecting SRHR in different contexts and income settings. These studies provided opportunities for early career researchers and students to lead in project management, study implementation, training, and data analysis. Through a network of nimble research institutions, the HRP Alliance collaborated to generate evidence on the impact of COVID-19 on pregnancy, pregnancy outcomes, access to SRHR services, gender-based violence, and abortion care. The success of implementing these research response mechanisms and developing global networks of research and healthcare institutions, provided solid ground upon which to build SRHR research responses to future pandemics and other emerging diseases. Adequate readiness and response to global health emergencies require high quality and timely evidence generation. Global networks of research partner institutions, brought together through research capacity strengthening initiatives, can provide a fruitful platform ready and able to swiftly respond. However, inherent power imbalances and challenges to equitable partnerships need to be considered to ensure sustainable ways of working together.
With persistent challenges in determining the 'right' therapy or support for autistic children, there is a growing need for clinicians to integrate the preferences and priorities of clients and their families in their clinical decision making. The purpose of the current study was to investigate speech-language pathologists' perspective of client factors that clinicians consider when planning supports and therapies for young children with social communication delays. A sample of 264 United States-based SLPs completed a survey that collected information about SLP professional training (e.g., amount and type of training) and clinical decision making (e.g., the types of information considered when making decisions regarding supports). The SLPs rated the importance of several internal sources they consider when planning support and therapies for young children with social communication delays. More participants rated family/child preferences as highly important to planning than any other client source. Participant engagement in autism-specific continuing education was related to clinicians' likelihood to rate a child's diagnosis as very important to clinical decision making, whereas continuing education related to early intervention was not related to the importance of child diagnosis. Findings suggest that SLPs give importance to internal sources within an evidence-based practice framework as they make clinical decisions. These findings support the need for professional development programs that emphasize client-centered care and equip clinicians to integrate family preferences into early intervention planning. What is already known on this subject Clinical decision making when selecting therapies and supports for autistic children is complex and often guided by the evidence-based practice (EBP) model, which includes research evidence, clinical expertise, and client values. However, research has disproportionately emphasized research evidence, while the use of client-specific sources - such as family preferences and contextual information - has been under-examined. Speech-language pathologists (SLPs) are crucial in supporting communication development in young autistic children, yet their training in autism and early intervention can be inconsistent, and how they consider different internal sources of information is not well understood. What this study adds to existing knowledge This study provides novel insights into how U.S.-based SLPs rate the importance of child and family sources of information sources when planning interventions for young children with social communication delays. Family and child preferences emerged as the most valued internal source, more so than diagnosis or procedural details. This study also highlighted that continuing education was positively associated with greater emphasis child and family preferences, familiarity with the child, and the child and family schedule. These findings suggest continuing professional development plays a critical role in promoting evidence-based, family-centered care. What are the clinical implications of this study? These findings underscore the importance of promoting continuing education opportunities that emphasize client and family-centered care, especially in autism and early intervention contexts. Clinical decision-making that prioritizes family preferences and individual child contexts is aligned with evidence-based best practice and shared decision-making models. Service providers and professional bodies should ensure that clinicians are equipped to integrate these child and family sources of information into therapy planning. Embedding structured training in these areas can enhance clinical outcomes and family satisfaction in early autism services.
The aim of this study was, with regard to the state of Poland's pediatric healthcare, to assess user experiences from the perspective of caregivers of pediatric patients and to provide a comprehensive picture of its quality. The research involved cooperating pediatric oncology and hematology wards across Poland. Cross-sectional, multicentre instrument validation study and caregiver's experience survey in Poland. In-patient study was conducted at 14 pediatric oncology and hematology wards. The cooperating wards represented all of Poland's voivodeships, and the study was coordinated by trained nurses. The reliability and validity of the research conclusions were obtained based on assessments provided by a representative population of 813 (adult) primary caregivers of pediatric patients. Two tools were used: the Pediatric Patient Experience Questionnaire (PPEQ) (the Polish adaptation of the CAHPS Child Hospital Survey (Child HCAHPS)); collected sociodemographic and clinical data. The highest percentage of Top Box scores, 84.30%, was recorded for the "Responsiveness to the call button", and the lowest for "Preventing mistakes and helping you report concerns" (25.66%). The presence of verified hospital infrastructure elements ranged from 85% to 99%. Moreover, 68.39% of all respondents gave the Top Box rating to the pediatric oncology and hematology hospital where their child was treated, and 63.22% stated that they would recommend it. Overall, the quality of healthcare in Poland's pediatric oncology and hematology centers is high. Caregivers evaluated hospitals mainly based on staff communication with the child and caregiver-and on the sense of comfort during the stay. The aesthetics of the interior and accessibility for people with special needs were also important, while ensuring comfort and safety remains an area for improvement. The use of the PPEQ supports the development of healthcare based on communication, empathy, and partnership with pediatric patients and their families, notably their primary caregivers. Frequent measurement of experiences can provide reliable guidance on adjustments that should be made to the healthcare system.
Infancy represents a critical period for growth and development, during which the gut microbiota and its metabolites play essential roles in nutrient absorption and maintaining health. Therefore, it is of great significance to evaluate the safety and gut microbiota-modulating effects of specific probiotics in healthy infants. This study aimed to investigate the effect of Bifidobacterium animalis subsp. lactis CP-9 strain (CP-9) on healthy infants aged 6 to 36 months and its relationship with growth patterns and multidimensional indicators. In this randomized, double-blind, placebo-controlled trial, healthy infants were randomly assigned to receive CP-9 or placebo for 3 months. Safety, growth parameters, complete blood counts (CBC), immunological markers and faecal microbiota were assessed before and after the intervention. All infants exhibited age-appropriate growth in height and head circumference during the study. The CP-9 strain significantly increased gut Bifidobacterium abundance and regulated the microbiota-mediated polyunsaturated fatty acids biosynthesis pathway. Haematological and systemic inflammatory markers remained within normal ranges and no treatment-related adverse changes were detected during the 3-month intervention period. Moreover, CP-9 improved stool characteristics and gastrointestinal tolerability, with no increase in the incidence of respiratory allergies, skin allergies, respiratory infections, or fever, which further confirmed its safety. These findings suggested that CP-9 supplementation resulted in significant enrichment of Bifidobacterium, a beneficial gut bacterium and had no detectable adverse effects on the measured physiological parameters. Consequently, the intervention raised no detectable safety concerns in healthy infants under the conditions of this study. Given this, CP-9 is a probiotic that does not show any obvious short-term safety signals for infants aged 6 to 36 months.
Parents of children with disabilities often manage complex nutritional and oral health needs, yet the factors supporting their competence remain insufficiently understood. This study examined the relationships of parental practices, parental self-efficacy, family support and caregiving characteristics with nutrition and oral health management among children with disabilities. A cross-sectional, descriptive, correlational design was used. The sample comprised 195 parents of children with disabilities. Data were analysed using independent-samples t tests, one-way analysis of variance with Bonferroni post hoc comparisons, Pearson correlation analysis and multiple linear regression. Parental self-efficacy and family nutritional awareness differed significantly across selected sociodemographic and caregiving characteristics. Family support was the strongest predictor of parental self-efficacy. Greater preparedness for disability, social security coverage, higher maternal education and cooperative child behaviour during dental examinations were also associated with higher self-efficacy. Paternal education was not a significant predictor. Caregiving difficulty was positively associated with family nutritional awareness, suggesting that greater caregiving demands may encourage adaptive health information-seeking and management behaviours. A high prevalence of dental pain was reported among children, indicating potential deficiencies in preventive oral health care, timely service access and caregiver education. Parental competence in managing the nutrition and oral health of children with disabilities is shaped by interpersonal, educational and structural resources. Interventions should strengthen family support, caregiver preparedness, access to social protection and practical guidance on preventive oral health and nutrition. Particular attention should be directed to families experiencing limited resources and children with unmet dental care needs in practice.