Monitoring and supporting development in children on home invasive mechanical ventilation.

INTRODUCTION: Each child on home invasive mechanical ventilation is unique with different diagnoses, co-morbidities, families, environment, needs, and developmental conditions. While studies mostly focused on survival and morbidities of these children, every child on home invasive mechanical ventilation has the right to reach his/her optimal developmental potential. OBJECTIVES: This can be achieved by monitoring and supporting child development holistically, especially in the early childhood period when brain development is happening rapidly and plasticity is highest. MATERIALS AND METHODS: Key theory-based frameworks should be used as universal principles to address child development. These are bioecological theory, family-centered care, World Health Organisation International Classification of Functioning Disability and Health framework, monitoring approach, child-friendly healthcare approach, and transdisciplinary care. RESULTS: Monitoring and supporting the development of children on home invasive mechanical ventilation aims to support children in reaching their own full developmental potential, to keep track of children's development, know and support the child's and family's strengths and vulnerabilities over time, address risk factors, support the child's development with the family, use specialized services when needed. CONCLUSIONS: When all these principles are put together for children on home invasive mechanical ventilation, monitoring and supporting child development should be a standard approach urgently and holistically in cognitive, receptive, and expressive language, fine and gross motor, relating, play and self help domains, while committing to strengths-based family-centered care, functionality, participation in life, avoidance of stigma, and providing transdisciplinary follow-up.

Unmet Needs of Children with Inherited Metabolic Disorders in the COVID-19 Pandemic.

OBJECTIVE: Crucial information is lacking on unmet needs of children with rare inherited metabolic disorders during the coronavirus disease 2019 pandemic from low- and middle-income countries. We aimed to identify the unmet needs of children with rare inherited metabolic disorders from Turkey. MATERIALS AND METHODS: In a cross-sectional observational design, all children with rare inherited metabolic disorders aged 0-18 years followed at Ankara University School of Medicine Department of Pediatrics Pediatric Metabolism Division were recruited and interviewed via phone calls. The Expanded Guide for Monitoring Child Development enabled assessment of unmet needs and environmental context during coronavirus disease 2019 pandemic. Step-wise logistic regression analysis was used to determine independent factors associated with unmet needs. RESULTS: The sample comprised 229 children (54.1% boys) with rare inherited metabolic disorders (36.7% diet-dependent disorders). Most common diagnoses were amino acid metabolism disorders (40.2%). Of all, 29.3% of the mothers reported depression, 25.3% loss of job of family members during the pandemic. All children had unmet needs: at least 73.0% in health care, 96.8% in education, 78.3% in special services/rehabilitation. Having significant developmental delay and/or disability (odds ratio = 2.31, 95% CI: 1.14-4.67) emerged as the only independent factor associated with unmet needs in health care. CONCLUSION: Children with rare inherited metabolic disorders and their families in Turkey experience unmet needs in many domains during coronavirus disease 2019 pandemic. Urgent action is needed to address the unmet needs of children with rare inherited metabolic disorders, especially those who has significant developmental delays and/or disabilities for this pandemic and possible future crisis.

Applicability of the Guide for Monitoring Child Development as a Telehealth Delivered Intervention During the Pandemic.

Background: Early intervention delivered through telehealth is critically needed during crises, particularly for children in low and middle-income countries (LMICs). We aimed to determine the applicability of the international Guide for Monitoring Child Development (GMCD) intervention delivered through telehealth during the COVID-19 lockdown in Turkey. Methods: Using a mixed-methods longitudinal design, we recruited children with developmental difficulties aged 0-42 months with an appointment during the first lockdown at Ankara University Developmental Pediatrics Division and seen face-to-face only once before. Developmental pediatricians applied the GMCD intervention during a single telephone call. As a novel intervention component, caregivers were asked to record and send back videos of the child's development when there were doubts about the child's functioning. Caregivers were called 1 year later by blinded independent researchers and a semi-structured interview on applicability was conducted. Applicability of the caregiver recorded video component of the intervention was assessed by a blinded observer using the GMCD Video Observation Tool. Results: Of 122 children that received the telehealth delivered GMCD intervention, 114 (93.4%) were included in the 1-year outcome study. Most were boys (51.8%); median age was 16.5 (IQR: 10.0-29.0) months, 51.0% had chronic health conditions, and 66.7% had developmental delay. All caregivers that received the intervention were mothers; 75.4% had at least high school education. The intervention was reported as applicable by 80.7% with high levels of satisfaction. On multivariate regression analysis, absence of chronic health related conditions was significantly associated with applicability (OR = 2.87, 95% CI = 1.02-8.09). Of 31 caregivers that were asked for videos, 19 sent back 93 videos that were technically observable. One or more developmental domains were observed in all videos; in 52.6%, caregivers provided early learning opportunities. Conclusions: The findings of this study imply that the telehealth delivered GMCD intervention for children with developmental difficulties is applicable during the pandemic. The intervention content and frequency needs to be augmented for children with chronic health conditions. Further research is required to examine applicability and effectiveness of the GMCD intervention in other settings, particularly in LMICs.

Rates and Correlates of Stigmatization Expressed by Parents of Young Children with Developmental Difficulties in a Middle-Income Country.

OBJECTIVE: Information on stigmatization of young children with developmental difficulties (DDs) in low- and middle-income countries (LMICs), where most children reside, is crucial to combat stigma globally. We aimed to identify rates and correlates of stigmatization of young children with DDs in a middle-income country, Turkey. METHOD: In this cross-sectional study, parents of children aged 0 to 42 months attending Ankara University School of Medicine, Department of Pediatrics, Developmental-Behavioral Pediatrics Division for their first visit were recruited consecutively. Parents responded to the written open-ended stigma questions of the Expanded Guide for Monitoring Child Development. Stepwise logistic regression analysis was used to determine factors associated with stigmatization. RESULTS: The sample comprised 306 children (60.8% boys) with DDs (72.9% with chronic illness/disability and 27.1% with isolated language delay). Most of the mothers (61.1%) and fathers (60.7%) had less than high school education. Stigmatization was reported by 102 (33.3%) families. Child's sex, age, and health condition were not, but 5 of 9 environmental/contextual factors examined were statistically significantly associated with stigmatization. In the logistic regression model, not receiving support from relatives/friends (odds ratio [OR] = 4.97, 95% confidence interval [CI] = 2.16-11.48) and feelings of depression in the mother were independent factors associated with stigmatization (OR = 2.16, 95% CI = 1.04-4.50). CONCLUSION: In a referred sample from Turkey and likely other LMICs, a large proportion of parents of young children with DDs report having experienced stigmatization at their first developmental assessment. Interventions that aim to address stigmatization in this early period must focus on support from family/friends and maternal mental health, which are independent strong correlates of stigma.

Referral Trends in Two Pioneering Developmental-Behavioral Pediatric Centers in Turkey.

OBJECTIVE: To inform professionals pioneering developmental-behavioral pediatrics (DBP) services in low- and middle-income countries (LMICs), we aimed to examine referral trends in 2 pioneering DBP centers at different locations in Turkey and to ascertain whether the official establishment of DBP as a subspecialty affected these trends. METHOD: This longitudinal observational study included all children referred to Ankara (AUDPD) and Inonu (IUDPD) Universities' Developmental Pediatrics Divisions between 2010 and 2018. We examined the sources of referrals and the independent effects of time and the establishment of DBP as a subspecialty on referral volume using Negative Binomial Regression (NBR) models. RESULTS: Of 8,051 children, most were boys (58%) and under 24 months of age (72%). Most referrals were from the pediatric and pediatric surgery department clinics (85%); less than 1% were from child and adolescent psychiatry, and none were from family physicians. The NBR models showed that yearly, the referral volume increased significantly, 1.18-fold (95% confidence interval [CI] = 1.09-1.28) and 1.48-fold (95% CI = 1.20-1.82) for AUDPD and IUDPD, respectively. Compared with the trend of referrals before, the trend after the establishment of DBP as a subspecialty increased significantly at AUDPD, but not IUDPD. CONCLUSION: The increase in referrals to DBP over time is encouraging to professionals working to advance DBP services and training in LMICs even if DBP is not officially established as a subspecialty. Additional efforts may be needed to improve recognition and use of DBP services by community physicians and allied disciplines that provide services to children.

Family-centeredness of services for young children with Down syndrome: an observational study from Turkey

Background/aim: Physicians require information on the family centeredness of services for children with Down syndrome, one of the most frequently encountered disabilities in childhood. We aimed to determine the family-centeredness of services for young children with Down syndrome and using a bioecological theory framework we hypothesized that child, family and service-related factors would be associated with such services. Materials and methods: In a crosssectional design, children with Down syndrome seen at Ankara University Developmental Pediatrics Division (AUDPD) between February 2020 and June 2020 were included if they had received services in the community for at least 12 months. Mothers responded to the measure of process of care-20 (MPOC-20) used to measure family centeredness. Results: All 65 eligible children were included; 57% were boys and median age was 25.0 (IQR: 18.5­38.0) months. The MPOC-20 subscale scores were highest for the "respectful and supportive care (RSC)" (median 6.0; IQR: 4.8­6.8) and lowest for the "providing specific information" (median 3.0; IQR: 4.4­6.5) subscales. On univariate analyses, maternal education

Abordaje del desarrollo en la primera infancia y sus dificultades en Turquía: programa de capacitación para las unidades de pediatría del desarrollo / Addressing early childhood development and developmental difficulties in Turkey: a training program for developmental pediatrics units

Introducción. El abordaje del desarrollo en la primera infancia (DPI) y las dificultades del desarrollo (DD) en los países de ingresos bajos o medios (PIBM) requiere de programas aplicables y sostenibles. Se evaluó el programa de capacitación para las unidades de pediatría del desarrollo (UPD) en los centros de referencia tras siete años. Población y métodos. Diseño transversal con métodos cualicuantitativos para evaluar los servicios, la capacitación, la investigación y la promoción de las UPD. Resultados. Se mantuvieron los servicios clínicos, la capacitación, investigación y promoción. En total, 23710 niños fueron derivados. La motivación y resistencia del personal, el respaldo de los administradores y la satisfacción del paciente facilitaron el programa, aunque la invisibilidad dentro del sistema de salud fue un obstáculo. Conclusiones. En Turquía, y posiblemente otros PIBM, el programa de capacitación para las UPD es aplicable y sostenible si se abordan los obstáculos del sistema de salud.

Introduction. Addressing early childhood development (ECD) and developmental difficulties (DDs) in low and middle-income countries (LMICs) requires applicable and sustainable programs. Seven years after its implementation in 2010, we evaluated the Developmental Pediatrics Unit (DPU) Training Program in pediatric referral centers in Turkey. Population and methods. We applied crosssectional design and quantitative/qualitative methods to assess services, training, research and advocacy of the DPUs. Results. Five of six established DPUs sustained clinical services, training, research, and advocacy. A total of 23,710 children (9085 new cases in 2017) had been referred mainly for perinatal risks and chronic illness, all centers contributed with similar proportions of children. Staff motivation and endurance, hospital administrator support, and client satisfaction facilitated the program; whereas invisibility within the performance based healthcare system was a barrier. Conclusions. In Turkey and possibly other LMICs, the DPU Training Program is applicable and sustainable if health system barriers are addressed

Addressing early childhood development and developmental difficulties in Turkey: a training programfor developmental pediatrics units. / Abordaje del desarrollo en la primera infancia y sus dificultades en Turquía: programa de capacitación para las unidades de pediatría del desarrollo.

INTRODUCTION: Addressing early childhood development (ECD) and developmental difficulties (DDs) in low and middle-income countries (LMICs) requires applicable and sustainable programs. Seven years after its implementation in 2010, we evaluated the Developmental Pediatrics Unit (DPU) Training Program in pediatric referral centers in Turkey. POPULATION AND METHODS: We applied crosssectional design and quantitative/qualitative methods to assess services, training, research and advocacy of the DPUs. RESULTS: Five of six established DPUs sustained clinical services, training, research, and advocacy. A total of 23,710 children (9085 new cases in 2017) had been referred mainly for perinatal risks and chronic illness, all centers contributed with similar proportions of children. Staff motivation and endurance, hospital administrator support, and client satisfaction facilitated the program; whereas invisibility within the performance based healthcare system was a barrier. CONCLUSIONS: In Turkey and possibly other LMICs, the DPU Training Program is applicable and sustainable if health system barriers are addressed.

Introducción. El abordaje del desarrollo en la primera infancia (DPI) y las dificultades del desarrollo (DD) en los países de ingresos bajos o medios (PIBM) requiere de programas aplicables y sostenibles. Se evaluó el programa de capacitación para las unidades de pediatría del desarrollo (UPD) en los centros de referencia tras siete años. Población y métodos. Diseño transversal con métodos cualicuantitativos para evaluar los servicios, la capacitación, la investigación y la promoción de las UPD. Resultados. Se mantuvieron los servicios clínicos, la capacitación, investigación y promoción. En total, 23 710niños fueron derivados. La motivación y resistencia del personal, el respaldo de los administradores y la satisfacción del paciente facilitaron el programa, aunque la invisibilidad dentro del sistema de salud fue un obstáculo. Conclusiones. En Turquía, y posiblemente otros PIBM, el programa de capacitación para las UPD es aplicable y sostenible si se abordan los obstáculos del sistema de salud.

Evaluation of the Ovarian Reserve in Adolescents with Hashimoto's Thyroiditis Using Serum Anti-Müllerian Hormone Levels

Objective: This study aims to evaluate ovarian reserve in adolescent girls with Hashimoto's thyroiditis (HT) by assessment of serum anti-Müllerian hormone (AMH) levels. It was hypothesized that HT decreases ovarian reserve and AMH levels are lower in the HT group. Methods: Thirty HT patients, aged between 10-18 years, and 30 healthy girls as the control group were enrolled in this cross-sectional study. The mean serum AMH levels of the groups were compared using the Mann-Whitney U test. Results: There was no statistically significant difference between the patient and the control groups in terms of serum AMH levels. There was a negative correlation between serum AMH and thyroid stimulating hormone (TSH) levels and no correlation between serum AMH and anti-thyroid peroxidase (anti-TPO) or anti-thyroglobulin (anti-Tg) antibody levels. Conclusion: Our results show that ovarian reserve of adolescent girls, as measured by serum AMH levels, is not affected by HT. Autoimmune damage to the ovaries may take time and the adolescent period may be too early to see these effects. Follow up of the patients for reproductive abnormalities and initiation of prospective studies is recommended.