Children's health care in the care network for people with disabilities in Brazil: a multicenter study. / Atenção infantil na rede de cuidados à pessoa com deficiência no Brasil: um estudo multicêntrico.

The aim of this study was to identify factors associated with early identification of disabilities and developmental follow-up of children in primary health care (PHC) services under the Care Network for People with Disabilities (RCPCD). We conducted a cross-sectional study using data from a multicenter study undertaken in eight states. The data were collected using a structured questionnaire answered by PHC professionals with degree-level qualifications selected using random sampling and stratified by state and municipality. Poisson regression with robust variance was performed for the two outcomes. Of the 1,488 workers in the final sample, 63.6% performed early identification of disabilities and 49% provided developmental follow-up. Family health teams performed early identification of disabilities and follow-up more than traditional model teams, and expanded family health teams provided developmental follow-up more than both these teams. The factors that showed the strongest association with identification and developmental follow-up were profession, working in a family health team and knowledge of the RCPCD.

Objetivou-se identificar fatores associados à atenção à saúde infantil na atenção primária à saúde (APS), na perspectiva das ações preconizadas pela Rede de Cuidados à Pessoa Deficiência (RCPCD), quanto à identificação precoce de deficiências e acompanhamento do desenvolvimento infantil. Trata-se de estudo transversal, multicêntrico, realizado em oito estados brasileiros. A coleta de dados envolveu a aplicação de questionário estruturado com profissionais de saúde de nível superior atuantes na APS, com amostra aleatória estratificada por estado e município. Foram realizadas regressões de Poisson com variância robusta para duas variáveis resposta. Entre os 1.488 trabalhadores que compuseram a amostra final, 63,6% realizam ações de identificação precoce de deficiências e 49% efetuam acompanhamento do desenvolvimento infantil. As equipes de Saúde da Família (eSF) identificam e acompanham mais do que as equipes do modelo tradicional, e os Núcleos Ampliados de Saúde da Família e Atenção Básica realizam mais ações de acompanhamento do que essas equipes. Conclui-se que os fatores mais associados com a identificação e o acompanhamento de crianças com deficiências na APS foram aqueles relativos à formação profissional, à eSF e ao conhecimento de normativas relativas à RCPCD.

"My child is my job now" - Care, work and careers of mothers with disabled children in the Norwegian welfare state.

In this article, we investigate how mothers of disabled children in Norway experience the work-family conflict and its impact on their careers, highlighting the role of provision of health and welfare services. We use a qualitative multiple case study of 11 mothers with disabled children. Although Norway is characterized by high labor market participation for women and an emphasis on care policies that support working mothers, we show that mothers of disabled children still experience considerable work-family conflict, creating ill-health and income-related struggles. This conflict is heavily influenced by inadequate support from health and welfare services. However, some of the mothers also highlighted how caring for their disabled children led to growth and new career paths, using their care experiences to craft new careers. Drawing on Fraser's (2022) concept of the care crunch and a relational perspective on disability, we demonstrate how the social organization of care for disabled children undervalues the care work mothers do and puts disabled children at risk of receiving insufficient and unequal services.

Occurrence of major infectious diseases and healthcare seeking among young children with disabilities in Sierra Leone using cross-sectional population-based survey data.

BACKGROUND: Children with disabilities are at risk of worse health outcomes compared to children without functional difficulties. Sierra Leone has one of the world's highest prevalences of functional difficulties among children, but little is known about the co-occurrence of major infectious diseases and healthcare-seeking behaviours among children with disabilities. METHODS: We used household survey cross-sectional data on children 2-4 years old and logistic regression models estimating ORs between functional difficulties and symptoms of infectious diseases including diarrhoea, fever and acute respiratory infection (ARI), adjusted for sex, age and stunting. We also examined whether caregivers sought advice or treatment for the illness from any source and if the child was given any treatment for the illness. RESULTS: There was an increased risk of fever among children with functional difficulty (adjusted OR (AOR)=1.3, 95% CI 1.1 to 1.8) and children with severe functional difficulty (AOR=1.6, 95% CI 1.0 to 2.7). Children with severe functional difficulty were also at increased risk of diarrhoea (AOR=1.8, 95% CI=1.1 to 3.3). There were no significant differences in seeking advice or treatment for diarrhoea, fever or ARI symptoms between the groups. CONCLUSIONS: In Sierra Leone, children with functional difficulties, especially severe functional difficulties, more often have symptoms of major childhood diseases that are known to increase under-5 mortality.

Online sexual abuse of children with disabilities: Analyzing reports of social workers' case files in Israel.

BACKGROUND: Online child sexual abuse (OCSA) is a growing social concern. However, its manifestations among children with disabilities (CWDs), who face an increased risk of sexual abuse, remain largely unexamined. OBJECTIVE: This study aims to fill this gap by examining professionals' perspectives of the OCSA of CWDs through their work at the 105 Hotline, an Israeli national call center that accepts queries and reports of the cyber victimization of minors. METHODS: A mixed methods research design was employed. A quantitative analysis was performed on 114 case files involving the OCSA of CWDs, followed by a thematic content analysis of 23 follow-up files by social workers. RESULTS: The quantitative findings revealed various characteristics of the survivors, their families, and OCSA. The qualitative analysis revealed that professionals indicate multiple interrelated risk factors for the OCSA of CWDs on three levels: child, related to the child's characteristics and disability traits; family, referring to familial complexities, parenting challenges, and socio-economic position; and relational, referring to the online abusive relationships between the perpetrator and the survivor. Furthermore, the online platform comprised characteristics that enhanced the risk of OCSA of CWDs. CONCLUSIONS: The understanding that the OCSA of CWDs as a compounded risk that encompasses personal and environmental risk dimensions is necessary and should guide all professionals' decisions and actions. There is also an urgent need for governmental and community efforts to develop measures, policies, and support systems to reduce OCSA risks for CWDs. Moreover, knowledge and interventions should be developed for professionals and parents of CWDs to improve the identification and response to this overlooked phenomenon.

An Expanded Approach to the Ascertainment of Children and Youth With Special Health Care Needs.

OBJECTIVE: To describe the prevalence, characteristics, and health-related outcomes of children with diagnosed health conditions and functional difficulties who do not meet criteria for having a special health care need based on the traditional scoring of the Children with Special Health Care Needs (CSHCN) Screener. METHODS: Data come from the 2016 to 2021 National Survey of Children's Health (n = 225 443). Child characteristics and health-related outcomes were compared among 4 mutually exclusive groups defined by CSHCN Screener criteria and the presence of both conditions and difficulties. RESULTS: Among children who do not qualify as children and youth with special health care needs (CYSHCN) on the CSHCN Screener, 6.8% had ≥1 condition and ≥1 difficulty. These children were more likely than CYSHCN to be younger, female, Hispanic, uninsured, privately insured, living in a household with low educational attainment, have families with more children and a primary household language other than English. After adjustment, non-CYSHCN with ≥1 conditions and ≥1 difficulty were less likely than CYSHCN, but significantly more likely than other non-CYSHCN, to have ≥2 emergency department visits, have unmet health care needs, not meet flourishing criteria, live in families that experienced child health-related employment impacts and frustration accessing services. Including these children in the calculation of CYSHCN prevalence increases the national estimate from 19.1% to 24.6%. CONCLUSIONS: Approximately 4 million children have both a diagnosed health condition and functional difficulties but are not identified as CYSHCN. An expanded approach to identify CYSHCN may better align program and policy with population needs.

Prevalence and Determinants of Ocular Disorders among in-School Children with Physical and Mental Disabilities in Osun State, South West Nigeria.

PURPOSE: This study set out to determine the prevalence and the factors contributing to ocular disorders among children with physical and mental disabilities, who represent a vulnerable group in Osun State. METHODOLOGY: This was a cross-sectional study among children with physical and mental disabilities aged 5-17 years using a multistage sampling technique. Demographics, presence of ocular symptoms and determinants of ocular disorders were noted. Distant visual acuities were measured; refraction and ocular examination were performed. Appropriate drug treatment, prescribed spectacle or low vision aids were dispensed as necessary, at subsidized rates. RESULTS: Of 189 children enrolled, 103(54.5%) were males and 86(45.5%) were females, with male to female ratio of 1.2:1. Mean age was 14.7 ± 0.45 years and 28/189 (14.8%) had ocular disorders in either eye. Some of the participants had multiple pathologies. The commonest identified visual disorder was refractive error (11.1%). There was a statistically significant ocular disorder determinant among most mothers of respondents (82.1%) who had ocular disorders and did not receive antenatal care in the hospital, p<0.05. Only 28.6% of children who had ocular disorders were fully immunized. CONCLUSION: The majority of mothers of children with ocular disorders did not receive antenatal care in the hospital. Health education on the importance of early antenatal care in the hospital is advocated to reduce the occurrence of ocular disorders. Early assessment and correction of ocular problems will prevent unnecessary visual impairment in these vulnerable children.

OBJECTIF: Cette étude visait à déterminer la prévalence et les facteurs contribuant aux troubles oculaires chez les enfants présentant des handicaps physiques et mentaux, qui représentent un groupe vulnérable dans l'État d'Osun. MÉTHODOLOGIE: Il s'agissait d'une étude transversale menée auprès d'enfants atteints de handicaps physiques et mentaux âgés de 5 à 17 ans, utilisant une technique d'échantillonnage à plusieurs niveaux. Les données démographiques, la présence de symptômes oculaires et les déterminants des troubles oculaires ont été notés. Les acuités visuelles à distance ont été mesurées ; la réfraction et l'examen oculaire ont été effectués. Un traitement médicamenteux approprié, des lunettes prescrites ou des aides à la basse vision ont été délivrés au besoin, à des tarifs subventionnés. RÉSULTATS: Sur 189 enfants inscrits, 103 (54,5 %) étaient des garçons et 86 (45,5 %) étaient des filles, avec un ratio garçons/filles de 1,2:1, âge moyen de 14,7 ± 0,45 ans ; tandis que 28/189 (14,8 %) présentaient des troubles oculaires dans l'un ou l'autre des yeux. Certains participants avaient plusieurs pathologies. Le trouble visuel le plus fréquemment identifié était l'erreur réfraction (11,1 %). Il y avait un déterminant de trouble oculaire statistiquement significatif chez la majorité des mères des répondants (82,1 %) qui avaient des troubles oculaires et n'avaient pas reçu de soins prénatals à l'hôpital p<0,05. Seulement 28,6 % des enfants présentant des troubles oculaires étaient entièrement immunisés. CONCLUSION: La plupart des mères d'enfants atteints de troubles oculaires n'ont pas reçu de soins prénatals à l'hôpital. Une éducation sanitaire sur l'importance des soins prénatals précoces à l'hôpital est préconisée afin de réduire l'occurrence des troubles oculaires. L'évaluation précoce et la correction des problèmes oculaires préviendront une atteinte visuelle inutile chez ces enfants vulnérables. MOTS-CLÉS: Trouble oculaire, Prévalence, Enfants en âge scolaire, Handicaps physiques et mentaux.

Postoperative Morbidity after Dental Treatment under General Anesthesia in Children with and without Disabilities.

Background and Objectives: General anesthesia induces reversible unconsciousness, eliminating sensation and enabling painless medical procedures. Vital for dental care, it addresses patients with medical conditions, those needing extensive procedures, and those unable to cooperate due to fear. Dental care for patients with disabilities is a significant unmet need, with studies showing increased oral disease prevalence. This research aims to analyze postoperative morbidity both in healthy and disabled children undergoing dental procedures under general anesthesia. Materials and Methods: This study involved 96 children aged 3 to 15 with dental caries. Two groups were formed: the control group (CTL) (52.94%) included healthy patients requiring general anesthesia due to unsatisfactory cooperation, and the other group included children with physical or intellectual disabilities (CD) (47.96%). Postoperative complications were monitored 1 h after the procedure and 1, 3, 7, and 14 days after the procedure by contacting parents/caregivers by phone. The intensity of postoperative pain was assessed using the Wong-Baker faces pain rating scale. General anesthesia was conducted following a standardized protocol for dental procedures. Results: CTL patients complained more often about postoperative pain 1 h after the procedure (p = 0.03). One day after the procedure, oral bleeding (p = 0.04), fever (p = 0.009), and diarrhea (p = 0.037) occurred more often in CD. In the same period, sore throat appeared more often in CTL (p = 0.036). Three days after the dental treatment, there were statistically significant increases in the occurrence of agitation (p = 0.043) and constipation (p = 0.043) in CD. Seven days later, CD demonstrated a higher occurrence of agitation (p = 0.037). According to the Wong-Baker faces pain rating scale, CTL experienced more frequent and intense pain. Conclusions: CD more frequently reported complications like oral bleeding, fever, and diarrhea. In contrast, the CTL group more often reported pain-related symptoms. The conclusion underscores the need for a pain control protocol for CD and emphasizes the importance of frequent monitoring to prevent unwanted consequences during tooth restoration under general anesthesia.

Children with disabilities lack access to nutrition, health and WASH services: A secondary data analysis.

Malnutrition and disability are major global public health problems. Poor diets, inadequate access to nutrition/health services (NaHS), and poor water, sanitation and hygiene (WASH) all increase the risk of malnutrition and infection. This leads to poor health outcomes, including disability. To better understand the relationship between these factors, we explored access to NaHS and household WASH and dietary adequacy among households with and without children with disabilities in Uganda. We used cross-sectional secondary data from 2021. Adjusted logistic regression was used to explore associations between disabilities, access to NaHS, WASH and dietary adequacy. Of the 6924 households, 4019 (57.9%) reported having access to necessary NaHS, with deworming and vaccination reported as both the most important and most difficult to access services. Access to services was lower for households with children with disabilities compared to those without, after adjusting for likely confounding factors (Odds ratio = 0.70; 95% CI 0.55-0.89, p = 0.003). There is evidence of an interaction between disability and WASH adequacy, with improved WASH adequacy associated with improved access to services, including for children with disabilities (interaction odds ratio = 1.12, 95% CI: 1.02-1.22, p = 0.012). The proportion of malnourished children was higher among households with children with disabilities than households without it (6.3% vs. 2.4% p < 0.001). There are concerning gaps in access to NaHS services in Uganda, with households with children with disabilities reporting worse access, particularly for those with low WASH adequacy. Improved and inclusive access to NaHS and WASH needs to be urgently prioritized, especially for children with disabilities.

A gap in perceived accessibility to play spaces for physical activity in Arizona elementary schools.

BACKGROUND: The Physical Activity Guidelines for Americans states all children should be provided with various physical activity opportunities; however, school play spaces are often unaccommodating to students with disabilities and this limitation may be exacerbated in lower-income schools. OBJECTIVE: The purpose of the study was to compare elementary school play space accessibility among children with and without disabilities at lower- and higher-income schools. METHODS: This cross-sectional study utilized an online survey assessing the perceived accessibility of play spaces for students with and without disabilities in low- and high-income schools administered to 178 physical education teachers across Arizona. Chi-square analyses were conducted to assess reported play space adequacy among students with and without disabilities, and associations by school-level income. RESULTS: There was a significant association between disability status and reported playground and play field inadequacy (p < 0.05). Without considering school income, reported inadequacy was 3x greater for students with disabilities compared to those without for both playgrounds and play fields. Among low-income schools, reported inadequacy was 3x greater for playgrounds and 7x greater for play fields for students with disabilities compared to those without. CONCLUSIONS: These results suggest a gap in access to school play spaces for students with disabilities and highlight the lack of inclusive play areas specifically among schools serving low-income populations. Our findings underscore the need for students with disabilities to be considered in the development of play spaces to ensure this at-risk population receives maximum opportunities for accessible movement and social engagement during the school day.

Deaf and hearing children: A comparison of face perception.

Deaf and hearing adults perceive faces differently. This study investigates whether these differences are acquired during childhood development. We characterized facial perception in deaf and hearing children aged 7-17 using a perceptual discrimination task. Configural and featural information was manipulated in the eye and mouth facial regions. Participants were asked whether two faces presented simultaneously were different. Deaf and hearing children performed better in featural than configural discriminations and in mouth than eye discriminations. Compared with children with typical hearing, deaf children performed better in featural and mouth judgments but had longer reaction times with strongest effects at 7-8 and 13-14 years old. Type and location contributed jointly in deaf children's face perception with different configural but similar featural discriminations in mouth and eye locations. However, children with typical hearing showed different featural and configural judgments in both locations. Thus, featural and configural information effects on location processing differ between the two groups.

The Impact of the COVID-19 Pandemic on Children With Special Needs: A Descriptive Study.

Amid the COVID-19 crisis, children with special needs may have challenges. To determine emotional and behavioral challenges, 116 children aged 4 to 6 years, who received special education, were evaluated. COVID-19 negatively affected the families at a rate of 94.6%; 76.5% of the children's daily routines were worsened. Although the one-on-one time duration with the mother and father increased (73.5% and 66.7%), reading books (40.6%), play (17.2%), and overall activity durations (25.7%) decreased. The median screen time increased from 1 to 3 hours. According to the families, there was a regression in development in 18.8% of children. Special education practices at home were ceased by 17.2% of families, and a significant difference was found between the groups with and without regression in development in terms of the frequency of continuing special education at home. The development of children with special needs is an ongoing urgent situation; thus, besides protecting and promoting physical health during the pandemic, families and children should also be supported for developmental needs.

Neurological impairment and disability in children in rural Kenya.

AIM: To investigate geographical change over time in the burden of neurological impairments in school-aged children in a demographic surveillance area. METHOD: We investigated changes in neurological impairment prevalence in five domains (epilepsy and cognitive, hearing, vision, and motor impairments) using similar two-phase surveys conducted in 2001 (n=10 218) and 2015 (n=11 223) and determined changes in location-level prevalence, geographical clustering, and significant risk factors for children aged 6 to 9 years (mean 7y 6mo, SD 1y) of whom 50.4% were males. Admission trends for preterm birth, low birthweight (LBW), and encephalopathy were determined using admission data to a local hospital. RESULTS: Overall prevalence for any neurological impairment decreased from 61 per 1000 (95% confidence interval [CI] 48.0-74.0) in 2001 to 44.7 per 1000 (95% CI 40.9-48.6) in 2015 (p<0.001). There was little evidence of geographical variation in the prevalence of neurological impairments in either survey. The association between neurological impairments and some risk factors changed significantly with year of survey; for example, the increased association of adverse perinatal events with hearing impairments (exponentiated coefficient for the interaction=5.94, p=0.03). Annual admission rates with preterm birth (rate ratio 1.08, range 1.07-1.09), LBW (rate ratio 1.08, range 1.06-1.10), and encephalopathy (rate ratio 1.08, range 1.06-1.09) significantly increased between 2005 and 2016 (p<0.001). INTERPRETATION: There was a significant decline in the prevalence of neurological impairments and differential changes in the associations of some risk factors with neurological impairments over the study period. Limited geographical variation suggests that similar interventions are appropriate across the defined area.

Epidemiology of eye diseases among children with disability in rural Bangladesh: a population-based cohort study.

AIM: To describe the epidemiology of eye diseases among children with disability in rural Bangladesh. METHOD: We established a population-based cohort of children with disability using the key informant method. Children younger than 18 years with disability (i.e. physical, visual, hearing, speech, epilepsy) were included. We used detailed ophthalmological assessments following World Health Organization (WHO) protocols by a multidisciplinary team including an ophthalmologist, optometrist, physician, and physiotherapist. Visual impairment, blindness, and severe visual impairment (SVI) were defined by following WHO categories. RESULTS: Between October 2017 and February 2018, 1274 children were assessed (43.6% female; median [interquartile range] age 9y 10mo [6y -13y 7mo]). Overall, 6.5% (n=83) had blindness/SVI, and 5.6% (n=71) had visual impairment. In the group with blindness/SVI, 47% (n=39) had cortical blindness; of those, 79.5% (n=31) had cerebral palsy (CP). The other main anatomical sites of abnormalities in this group included lens (13.3%, n=11), cornea (10.8%, n=9), and optic nerve (9.6%, n=8). In the group with visual impairment, 90.1% (n=64) had refractive error. Overall, 83.1% (n=69) and 78.8% (n=56) of those with blindness/SVI and visual impairment had avoidable causes. Most children with blindness/SVI and visual impairment lacked access to education. INTERPRETATION: The burden of blindness/SVI/visual impairment is high among children with disability in rural Bangladesh, mostly due to avoidable causes. Overrepresentation of CP and cortical blindness in the group with blindness/SVI and refractive error in the group with visual impairment highlights the need for integration of ophthalmology assessment, eye care, and refraction services in comprehensive health care for children with disability including CP in rural Bangladesh.

Children with special health care needs and mothers' anxiety/depression: Findings from the Tokyo Teen Cohort study.

AIM: Children with special health care needs (CSHCN) are those who require more care for their physical, developmental, or emotional differences than their typically developing peers. Among a wide range of burdens that caregivers of CSHCN experience, the mental burden of caregivers is still not well investigated. This study aimed at examining the relationship between caring for CSHCN and mothers' anxiety/depression. METHODS: This study used data from the Tokyo Early Adolescence Survey, a population-based cross-sectional survey. Using screening questionnaires, we evaluated the prevalence of CSHCN and identified their primary caregivers. Focusing on mothers as caregivers, we analyzed the relationship between having CSHCN and mothers' anxiety/depression, and between the severity of children's condition and mothers' anxiety/depression. We further determined what mediates these relationships using path analyses. RESULTS: Among 4003 participants, we identified 502 CSHCN (12.5%), and 93% of responding caregivers were mothers. We found that mothers with CSHCN were significantly more anxious/depressed than those without CSHCN, which was closely related to the severity of children's condition. The mediation effect of social support on the relation between CSHCN and mothers' anxiety/depression was statistically significant. CONCLUSION: Mothers of CSHCN were more anxious/depressed than other mothers in this study. Social support was indicated to have a significant mediating effect on the relationship between CSHCN and mothers' anxiety/depression. Our results suggest that considering ways to offer social support may effectively relieve the mental stress experienced by mothers of CSHCN.

[Cancer in children with intellectual disabilities: Questioning and ethical issues]. / Cancer chez un enfant porteur de handicap intellectuel : questionnement et enjeux éthiques.

The Parents and Caregivers group in the face of ethics in pediatrics of the Île-de-France Ethics Area wondered about the association of the words Disability and Cancer by focusing on the study of the course of children with intellectual disability, treated for cancer. These situations are exceptional, the number of cases in France must not be more than fifty per year. We gathered the testimony of five families of children using a semi-directive survey taking up the journey from birth, announcement of the handicap, the diagnosis of cancer and its treatment. The verbatim show that each story is unique and rich in lessons, despite the feeling of "double penalty": "He did not deserve this, a handicap plus cancer is a lot for one person", "the shot moreover." A healthcare team was also interviewed and raised an additional question: "First, the double penalty… then, what's the point?" Through these testimonies, we sought to question the ethical principles of care, which can be shaken up in these extraordinary supported.

Children With Special Health Care Needs and Forgone Family Employment.

BACKGROUND: Family income is known to affect child health, but this relationship can be bidirectional. We sought to characterize this relationship by quantifying forgone family employment (FFE) due to a child's health condition in families of children with special health care needs (CSHCN) with updated figures. METHODS: We conducted a secondary data analysis from the 2016-2017 National Survey of Children's Health. CSHCN with previously employed caregivers were included (N = 14 050). FFE was defined as any family member having stopped work and/or reduced hours because of their child's health or health condition. Child, caregiver, and household characteristics were compared by FFE status. Logistic regression analysis was conducted to evaluate the association between hours of medical care provide by a family member and FFE. US Bureau of Labor Statistics reports were used to estimate lost earnings from FFE. RESULTS: FFE occurred in 14.5% (95% confidence interval [CI] 12.9%-16.1%) of previously employed families with CSHCN and was 40.9% (95% CI 27.1%-54.7%) for children with an intellectual disability. We observed disproportionately high FFE among CSHCN who were 0 to 5 years old and of Hispanic ethnicity. We found a strong association between FFE and increasing hours of family-provided medical care, with an adjusted odds ratio (aOR) of 1.72 (95% CI 1.25-2.36) for <1 hour per week (compared with 0 hours), an aOR of 5.96 (95% CI 4.30-8.27) for 1 to 4 hours per week, an aOR of 11.89 (95% CI 6.19-22.81) for 5 to 10 hours per week, and an aOR of 8.89 (95% CI 5.26-15.01) for >10 hours per week. Lost earnings for each household with FFE were estimated at ∼$18 000 per year. CONCLUSIONS: With our findings, we highlight the need to implement programs and policies that address forgone income experienced by families of CSHCN.

Prevalence of Headache Days and Disability 3 Years After Participation in the Childhood and Adolescent Migraine Prevention Medication Trial.

Importance: Migraine is a common neurological disease that often begins in childhood and continues into adulthood; approximately 6 million children and adolescents in the United States cope with migraine, and many frequently experience significant disability and multiple headache days per week. Although pharmacological preventive treatments have been shown to offer some benefit to youth with migraine, additional research is needed to understand whether and how these benefits are sustained. Objective: To survey clinical status of youth with migraine who participated in the 24-week Childhood and Adolescent Migraine Prevention (CHAMP) trial over a 3-year follow-up period. Design, Setting, and Participants: This survey study used internet-based surveys collected from youth ages 8 to 17 years at 3, 6, 12, 18, 24, and 36 months after completion of the CHAMP trial, which randomized participants to amitriptyline, topiramate, or placebo. At the end of the trial, the study drug was stopped, and participants received clinical care of their choice thereafter. The CHAMP trial was conducted between May 2012 and November 2015, and survey follow-up was conducted June 2013 to June 2018. Participants in this survey study were representative of those randomized in the trial. Data were analyzed from March 2020 to April 2021. Exposures: Survey completion. Main Outcomes and Measures: Headache days, disability (assessed using the Pediatric Migraine Disability Scale [PedMIDAS]), and self-report of ongoing use of prescription preventive medication. Results: A total of 205 youth (mean [SD] age, 14.2 [2.3] years; 139 [68%] girls; mean [SD] history of migraine, 5.7 [3.1] years) participated in the survey. Retention of participants was 189 participants (92%) at month 6, 182 participants (88%) at month 12, 163 participants (80%) at month 18, 165 participants (80%) at month 24, and 155 participants (76%) at month 36. Over the course of the 3-year follow-up, participants consistently maintained meaningful reductions in headache days (mean [SD] headache days per 28 days: CHAMP baseline, 11.1 [6.0] days; CHAMP completion, 5.0 [5.7] days; 3-year follow-up, 6.1 [6.1] days) and disability (mean [SD] score: CHAMP baseline, 40.9 [26.4]; CHAMP completion, 17.9 [22.1]; 3-year follow-up, 12.3 [20.0]). At 3 years after completion of the CHAMP trial, headache days were approximately 1.5 per week (changed from about 3 per week at trial baseline) and disability had improved from the moderate range to the low mild range on the PedMIDAS. Longitudinal analyses showed that amitriptyline and topiramate did not explain intercept random effects for either mean rate of headache days per week (amitriptyline: estimate [SE], 0.07 [0.05]; P = .16; topiramate: estimate [SE], 0.04 [0.05]; P = .50) or headache disability PedMIDAS total score (amitriptyline: estimate [SE], 0.25 [0.38]; P = .52; topiramate: estimate [SE], -0.09 [0.39]; P = .82) changes over time. Of 153 participants who reported on prescription drug use at 3 years, only 1 participant (1%) reported using prevention medication, and most participants reported no medication use at most time points. Conclusions and Relevance: These findings suggest that children and adolescents with longer than 5 years history of migraine who participated in the CHAMP trial may sustain positive clinical outcomes over time, even after discontinuing preventive pill-based treatment. This survey study could inform use and discontinuation timing of pharmacological preventive therapies for migraine in youth ages 8 to 17 years. Research is needed to examine mechanisms of treatment improvement and maintenance for preventive therapies, as well as placebo, in the pediatric population.

Meeting physical activity and screen time among Colombian adolescents with or without sensory-related problems.

The aim of this study was to assess the extent to which adolescents with and without visual and hearing-related problems meet physical activity (PA) and recreational screen time (ST) recommendations in a representative Colombian sample. A total of 35,404 adolescents aged 13-17 years were included from the Encuesta Nacional de Salud Escolar (ENSE) (Colombia). Sociodemographic-related information, anthropometric variables, PA, ST, and both visual- and hearing-related problems were collected by self-administered questionnaires. The prevalence of adolescents meeting with PA, ST, and both recommendations was 14.8%, 53.4%, and 7.8%, respectively. Both sexes with visual- (males: OR=0.70, 95%CI 0.59-0.83; females: OR=0.73, 95%CI 0.61-0.88) and hearing-related problems (males, OR=0.75, 95%CI 0.61-0.93; females, OR=0.76, 95%CI 0.61-0.94) are less likely to meet combined recommendations. Sensory problems such as vision- and hearing-related problems could be considered key barriers to engagement in PA and facilitators of recreational ST in Colombian adolescents.

Assessment of Have Problems and Care Burdens of Mothers with Handicapped Children in COVID-19 Pandemic.

In the study, it was aimed to evaluate the problems and care burden of mothers who have a handicapped child in the pandemic process. The population of the descriptive study consisted of the mothers of the children who came to the rehabilitation center (n = 230), and the sampling consisted of the mothers who wanted to participate in the study (n = 216). The research data were collected through social media and the data were analyzed using the mean, standard deviation, percentage and frequency measurements, independent sample t test, Oneway anova, Kruskal wallis tests in the SPSS program. In the study, Burden Interview Scale (BIS) scores of the mothers who stated that the educational status of their child was adversely affected in the pandemic, stated that they were worried that there would be someone to take care of my child if I died, stated that the child's health checks were interrupted, stated that they did not send their child to school due to the fear of COVID-19, and reported that they had a problem in reaching the health institution was determined were significantly higher than. Mothers with handicapped children stated that their children experienced difficulties in important situations such as health checks and educations during the pandemic period. In addition, it was found that the care burden of these mothers was higher. During the pandemic period, it is necessary to make and support new regulations in accordance with the disability of these special children with state policies as well as healthcare professionals.

Heritable Connective Tissue Disorders in Childhood: Increased Fatigue, Pain, Disability and Decreased General Health.

Heritable Connective Tissue Disorders (HCTD) show an overlap in the physical features that can evolve in childhood. It is unclear to what extent children with HCTD experience burden of disease. This study aims to quantify fatigue, pain, disability and general health with standardized validated questionnaires. METHODS: This observational, multicenter study included 107 children, aged 4-18 years, with Marfan syndrome (MFS), 58%; Loeys-Dietz syndrome (LDS), 7%; Ehlers-Danlos syndromes (EDS), 8%; and hypermobile Ehlers-Danlos syndrome (hEDS), 27%. The assessments included PROMIS Fatigue Parent-Proxy and Pediatric self-report, pain and general health Visual-Analogue-Scales (VAS) and a Childhood Health Assessment Questionnaire (CHAQ). RESULTS: Compared to normative data, the total HCTD-group showed significantly higher parent-rated fatigue T-scores (M = 53 (SD = 12), p = 0.004, d = 0.3), pain VAS scores (M = 2.8 (SD = 3.1), p < 0.001, d = 1.27), general health VAS scores (M = 2.5 (SD = 1.8), p < 0.001, d = 2.04) and CHAQ disability index scores (M = 0.9 (SD = 0.7), p < 0.001, d = 1.23). HCTD-subgroups showed similar results. The most adverse sequels were reported in children with hEDS, whereas the least were reported in those with MFS. Disability showed significant relationships with fatigue (p < 0.001, rs = 0.68), pain (p < 0.001, rs = 0.64) and general health (p < 0.001, rs = 0.59). CONCLUSIONS: Compared to normative data, children and adolescents with HCTD reported increased fatigue, pain, disability and decreased general health, with most differences translating into very large-sized effects. This new knowledge calls for systematic monitoring with standardized validated questionnaires, physical assessments and tailored interventions in clinical care.