Análise de situações de trabalho na fiscalização sanitária de medicamentos da agência reguladora federal / Analysis of work scenarios in the sanitary enforcement of medicines from the federal regulatory agency

Resumo Este estudo analisa as situações de trabalho vividas pelos profissionais na fiscalização sanitária de medicamentos da Agência Nacional de Vigilância Sanitária, durante a pandemia de COVID-19. Estudo de caso único, de natureza qualitativa, com abordagem ergológica. Os dados foram produzidos entre 2020 e 2021, por meio de 18 entrevistas e observação participante em três reuniões de trabalho online. As práticas discursivas foram sistematizadas em mapas ergodialógicos, resultando em três categorias: os trabalhos vividos na fiscalização dos medicamentos; as variabilidades do contexto organizacional e as renormalizações frente à pandemia. As fragilidades dos sistemas de informação, o marco regulatório desatualizado, o modelo de atuação, a fragmentação do trabalho, dentre outros, ocasionaram entraves à realização da atividade pelo profissional. A conformação de novo modo de fazer fiscalização envolve a combinação de intervenções direcionadas à prevenção, detecção e resposta ao consumo de medicamentos nocivos à saúde. A transformação necessária ultrapassa a função restrita de controle e punição e se consolida como um novo modelo de atuação proativo e dinâmico, baseado na gestão do risco sanitário e na implantação das Boas Práticas de Fiscalização.

Abstract This study analyzes the work situations experienced by professionals in the sanitary fiscalization of medicines at the Brazilian Health Regulatory Agency, during the COVID-19 pandemic. This is a single-case study, qualitative in nature, with an ergological approach. The data were collected from 2020 to 2021. During this period, 18 interviews and 3 online work meetings were conducted. The discursive practices were systematized in ergodialogical maps, resulting in three categories: the works experienced in the sanitary enforcement of medicines; the variabilities of the organizational context and the renormalizations facing the pandemic. The fragilities of the information systems, the outdated regulatory framework, the performance model, the fragmentation of the work, among others, have caused barriers to the professional's activity. The conformation of a new way of performing the sanitary fiscalization of medicines involves the combination of interventions aimed at prevention, detection, and response to the consumption of medicines that are harmful to health. The necessary transformation goes beyond the restricted function of control and punishment and consolidates itself as a new proactive and dynamic action model, based on health risk management and the implementation of Good Fiscalization Practices.

Effectiveness of a Mobile App (KhunLook) Versus the Maternal and Child Health Handbook on Thai Parents' Health Literacy, Accuracy of Health Assessments, and Convenience of Use: Randomized Controlled Trial.

BACKGROUND: Children of parents who have higher health literacy (HL) benefit more from preventive child health care. Digital interventions have been used to improve parents' HL with high satisfaction. KhunLook is a Thai mobile app conceived using strategies to improve HL. It was developed to assist parents in assessing and keeping track of their child's health in complement to the standard Maternal and Child Health Handbook (MCHH). OBJECTIVE: This trial focuses on the effectiveness of using the KhunLook app with the MCHH and standard care (intervention) compared with the conventional MCHH and standard care (control) on parents' HL. Data on accuracy of parents' assessment of their child's health and growth as well as convenience of use of the tool (app or MCHH) in the well-child clinic were collected at 2 visits (immediate=visit 1, and intermediate=visit 2). METHODS: Parents of children under 3 years of age who (1) had a smartphone or tablet and the MCHH and (2) could participate in 2 visits, 2-6 months apart at Srinagarind Hospital, Khon Kaen, Thailand, were enrolled in this 2-arm parallel randomized controlled trial between April 2020 and May 2021. Parents were randomized 1:1 to 2 groups. At visit 1, data on demographics and baseline HL (Thailand Health Literacy Scales) were collected. Parents in the app group used the KhunLook app and the control group used their child's handbook to assess their child's growth, development, nutrition and feeding, immunization status and rated the convenience of the tool they used. At visit 2, they repeated the assessments and completed the HL questionnaire. RESULTS: A total of 358 parents completed the study (358/408, 87.7%). After the intervention, the number of parents with high total HL significantly increased from 94/182 (51.6%) to 109/182 (59.9%; 15/182; Δ 8.2%; P=.04), specifically in the health management (30/182; Δ 16.4%; P<.001) and child health management (18/182; Δ 9.9%; P=.01) domains in the app group, but not in the control group. Parents in the app group could correctly assess their child's head circumference (172/182, 94.5% vs 124/176, 70.5%; P<.001) and development (173/182, 95.1% vs 139/176, 79.0%; P<.001) better than those in the control group at both visits. A higher proportion of parents in the app group rated their tool as very easy or easy to use (174-181/182, 95.6%-99.5% vs 141-166/176, 80.1%-94.3%; P<.001) on every item since the first visit. CONCLUSIONS: Our results suggest the potential of a smartphone app (KhunLook) to improve parents' HL as well as to promote superior accuracy of parents' assessment of their child's head circumference and development, with a similar effect on weight, height, nutrition and feeding, and immunization as in traditional interventions. Using the KhunLook app is useful and more convenient for parents in promoting a healthy child preventive care during early childhood. TRIAL REGISTRATION: Thai Clinical Trials Registry TCTR20200312003; https://www.thaiclinicaltrials.org/show/TCTR20200312003.

Review and prospect of radiodiagnosis and radiotherapy supervision in the past 16 years / 中国辐射卫生

In 2003, the responsibility of radiation source safety supervision was redivided and transferred from the health department to the environmental protection department. After the promulgation and implementation of the Rule on the Administration of Radiodiagnosis and Radiotherapy in 2006, due to the incorporation of a large number of medical practice supervision rules, the radiation health supervision of medical institutions has evolved into the radiodiagnosis and radiotherapy supervision. In the past 16 years, radiation, occupational health supervision, and medical practice supervision have not been well integrated, and there are many legal problems in radiodiagnosis and radiotherapy supervision. The regulation rules of environmental protection, metrology, and other relevant departments on radiation sources and radiation devices have been constantly changing, resulting in overly complex regulatory requirements on radiodiagnosis and radiotherapy, which increases the burden of medical institutions. This paper reviews the historical evolution and legal system changes of radiodiagnosis and radiotherapy supervision, analyzes the problems and challenges faced by the relevant regulatory departments, and proposes ways to improve the supervision system.

Investigation and analysis of administrative penalties for radiation diagnosis and treatment in Xuzhou, China, 2018—2021 / 中国辐射卫生

Objective To analyze the administrative penalties for radiation diagnosis and treatment in Xuzhou, China, 2018—2021, investigate the key illegal behaviors in radiation diagnosis and treatment, and provide a basis for effective supervision with targeted measures. Methods A total of 142 cases of administrative penalties were analyzed for the year of the case, the undertaker, the basic information of the subjects, the amount of penalty, and the specific illegal facts. Results From 2018 to 2021, the case number of administrative penalties for radiation diagnosis and treatment in Xuzhou was relatively stable. The cases were mainly undertaken by the municipal health supervision institution, while the number of cases handled by basic-level health supervision institutions was increasing. The administrative penalties were mainly imposed on persons and primary or non-classified medical institutions. Common illegal behaviors included occupational health management of radiation workers and personal protection during medical exposure. Conclusion We should focus on strengthening the publicity and supervision of personal protection in occupational health management and medical exposure, continue to improve the law enforcement ability of basic-level radiation health supervisors, develop a standardized management system for radiation diagnosis and treatment, innovate the supervision mode and radiation hazard notification mode, promote the “Internet + ” informatization supervision, and recommend to improve and revise radiation-related laws and regulations.

A case report of a 4-year-old girl with neurofibromatosis type 1.

Neurofibromatosis type 1 is a rare genetic disorder, which is a benign nerve tumor resulting from aberrant growth of the cells of nerve sheath. NF1 patients were associated with multisystem involvement, characterized by neurofibroma, of which 50% were associated with plexus neurofibroma. Characteristically benign plexiform neurofibromas can cause pain, disfigurement, compression and functional changes. Although plexiform neurofibroma is common in the head and neck, the orbital plexiform neurofibroma is rare and easily confused with other orbital tumors. There is no consensus with regard to the treatment strategy of plexiform neurofibromas, current treatment has remained largely surgical, but comes with a high recurrence rate after partial removal. We describe a case of a 4-year-old patient with orbital plexiform neurofibroma who has a 3-year history of ptosis in the right eye. At the begining, we misdiagnosed it as hemangioma. After surgical resection, it was confirmed as plexiform neurofibroma by histopathological examination. One year after surgery, the tumor recurred, so surgical resection was performed again, and the ptosis was corrected. After that, the patients were followed up and examined annually, and no recurrence was found so far. This case shows that an infant or a child present with unilateral eye swelling and ptosis of the upper eyelid should be evaluated for orbital neurofibroma.

The balance between professional autonomy and organizational obligations in resilient management of specialized health care: A Norwegian document study.

BACKGROUND: Adverse events in hospitals may jeopardize the safety of patients. Failure in professional autonomy, organizational learning or in the contact between these two factors may explain the occurrence of injurious incidents in hospitals. OBJECTIVE: To study reasons for failure in contact between professional autonomy and organizational learning in resilient management of specialized health care through document analysis. METHODS: A total of 20 reports from the Norwegian Board of Health Supervision were evaluated by a retrospective in-depth document analysis. In the analysis of adverse events, we applied the Braut model to identify function or failure of 1. Professional autonomy, 2. Organizational learning and 3. Contact between professional autonomy and organizational learning. RESULTS: Multivariable regression analysis showed that failure in organizational learning was the only explanatory variable for failure in contact between doctors and nurses autonomy and organizational learning. Failure in organizational learning had the strongest effect on failure in contact between doctors and nurse's autonomy and organizational learning (B = 1.69; 95% CI = 0.45 to 2.92). Failure in professional autonomy showed no significant effect on this contact. CONCLUSIONS: Failure in organizational learning is associated with failure in contact between professional autonomy and organizational learning. Failure in professional autonomy did not influence this contact.

Reliability of transcutaneous hemoglobin measurements in an outpatient pediatric clinic.

OBJECTIVE: Our study assessed the reliability of a transcutaneous hemoglobin (tcHgb) measurement as compared to a standard capillary hemoglobin (cHgb) measurement in screening for iron deficiency anemia in a single university-based pediatric outpatient clinic. METHODS: Study participants included all pediatric patients requiring a hemoglobin (Hgb) assessment from July 2019 to June 2020. A tcHgb measurement was attempted on all children who received a cHgb measurement. Additional variables evaluated were age, visit type, gender, insurance type, weight, BMI percentile and presence of comorbid conditions. RESULTS: Of 777 attempts, both cHgb and tcHgb were obtained in 196 children aged 9 months to 21 years. Attempts were most successful in children > 2 years of age due to finger size and ability to remain still for one to two minutes. The mean cHgb was 12.5 ± 1.5 g/dL, mean tcHgb value 13.1 ± 2.1 g/dL, and the mean difference was 0.6 ± 2.1 g/dL (tcHgb-cHgb). An intraclass correlation coefficient was 0.29. There were no differences with regards to age, visit type, gender, insurance type, weight, BMI percentile and presence of comorbid conditions. Bland-Altman analysis displayed a lack of agreement between the tcHgb and cHgb measurements and tcHgb tended to over-estimate Hgb values when the cHgb was low. CONCLUSIONS: The measurement of a transcutaneous Hgb is less invasive for pediatric patients but has significant limitations. Smaller children (probe specifications) and movement limited the ability to obtain a tcHgb measurement in ~75% of children tested. Falsely normal tcHgb values occurred due to overestimation of hemoglobin when compared to the traditional cHgb device. The suboptimal sensitivity of the tcHgb device may cause providers to miss a diagnosis of anemia. Future research should compare both methods of Hgb assessment to the gold standard laboratory-analyzed complete blood count and use a smaller probe for children under 2, once available.

Sanitary condition assessment of quick barber and hair care shops in one district of Shanghai / 上海预防医学

Objective:To ascertain the current situation of new types of hairdressing business， to objectively evaluate the sanitary condition of quick barber and hair care shops， and to provide basis and support for relevant departments to formulate policies and management measures. Methods:A total of 12 quick barber shops and 14 hair care shops in one district of Shanghai were investigated by field survey questionnaire. Results:The quick barber shops and the hair care shops need to have public health permit. However， these new types of hairdressing business failed to follow the sanitary law and standard in many aspects. The government agencies also lack corresponding management means. Conclusion:The governments should review the rules and regulations， create the appropriate standards， and exercise accommodative and prudential regulation on these types of new business.

Effects of double random supervision model: a case study of public places in Yangpu District, Shanghai / 上海预防医学

Objective To determine the effects of the"double random"supervision model of public places in Yangpu District, Shanghai. Methods Using the"double random"data of public places in Yangpu District of Shanghai from 2018 to 2019, we determined the proportion of unqualified public places assessed by daily supervision and"double random"supervision in 2018 and 2019. Moreover, we identified that if the public places that had been penalized in 2018 would be penalized in 2019, which may reflect the effects of the"double random"supervision model. Results The proportion of unqualified public places assessed by"double random"supervision was significantly higher than daily supervision in 2018(χ2 = 58.04, P < 0.05)and 2019(χ2 = 79.24, P < 0.05);however, the proportion of being penalized in the following year between"double random"supervision and daily supervision had no significant difference(χ2 = 1.81, P = 0.18). Conclusion "Double random"supervision may be easier to identify the problems of the supervision subjects than daily supervision; however, it warrants continual efforts to consolidate the regulatory effects.

Practice and experience of standardized management of radiation hygiene in medical institutions / 中国辐射卫生

More than 90% of artificial irradiation comes from medical irradiation. New radiation technologies are constantly emerging in the medical field, bringing benefits to patients. At the same time, the harm of medical irradiation has attracted more and more attention. There are many problems in the supervision and management of radiation health in medical institutions, such as many standards and specifications involved in radiation health in medical institutions, uneven professional ability of personnel in primary health supervision institutions, inadequate implementation of the main responsibility for the safety of radiation diagnosis and treatment in medical and health institutions, and non-standard service of radiation health technical service institutions, etc. In view of the above problems, the implementation plan of standardization of radiation health supervision, radiation diagnosis and treatment behavior, and radiation technical service behavior has been set. After the pilot operation, the effect is obvious.

A Mobile App, KhunLook, to Support Thai Parents and Caregivers With Child Health Supervision: Development, Validation, and Acceptability Study.

BACKGROUND: In Thailand, children born in government hospitals receive a maternal and child health handbook (MCHH). However, when a new MCHH edition is released, those with the previous editions do not have access to the updated information. A mobile app is an appealing platform to fill this gap. We developed a mobile app called "KhunLook" as an interactive electronic MCHH intended to assist parents in child health supervision. OBJECTIVE: This study describes the user requirements and development of the KhunLook mobile app, validity of parents' growth assessments, and parents' evaluation of feasibility and acceptability of the app. METHODS: Phase 1 was a qualitative study using individual interviews. The interview data were used to revise the prototype. In phase 2, parents were randomly assigned to assess their children's growth with the app or the MCHH. The outcomes were compared to those of the physician's assessment, and congruence was determined. In phase 3, parents evaluated the feasibility and acceptability of the app in comparison to the MCHH through a web-based survey. RESULTS: Four health care providers and 8 parents participated in phase 1. Two themes were identified: (1) the mobile app potentially counters parents' infrequent use of the MCHH with accuracy, attractiveness, convenience, and simplicity, and (2) health supervision needs to be standard, up-to-date, and understandable. KhunLook was publicly launched with a family page and 7 key features: growth and nutrition, development, immunizations, oral health, reminders for the next appointment, memories, and health advice. In phase 2, 56 parents participated in the growth parameter assessments; 34 were in the App group and 22 in the MCHH group. The outcomes of the growth parameter assessments between parents and physicians in both the App and MCHH groups were not significantly different. The congruence proportions were higher in the App group for weight and head circumference, but the differences were not statistically significant. In phase 3, 356 parents from all over Thailand participated in a web-based survey. Parents rated the app feasibility as "very easy to easy" to use at higher proportions than the MCHH in all health assessment domains (growth, development, and immunizations) and ease-of-use domains with statistical significance (P<.001). The KhunLook app received a significantly higher mean score (8.59/10) than the MCHH (7.6/10) (P<.001). Most parents (317/356, 89.0%) preferred the app over MCHH. Further, 93.5% (333/356) of the parents stated that they would continue to use the app and 96.9% (345/356) would recommend others to use it. CONCLUSIONS: KhunLook, a Thai mobile app for child health supervision, was developed, validated for growth assessments, and was well accepted for ease-of-use by parents. Further studies should be conducted with a large scale of users, and the impact of this app on health behaviors and health outcomes must be evaluated.

[Investigation on the health status of workers exposed to benzene in one province].

Objective: To explore the health status of occupational benzene exposure workers, and to provide a scientific basis for the development of reasonable health monitoring and effective protective measures. Methods: In March 2019, the occupational health surveillance data were collected including blood pressure, electrocardiogram, blood routine, urine routine, liver function, etc of 7810 benzene contact workers in 150 enterprises in Jiangxi Province in 2017, to analyze and assess their health status. Results: Among the 7810 benzene workers, there were 5451 males and 2359 females; the average age was (40.5±9.9) years; and the median benzene working age was 3.5 years. The detection rate of hypertension was 17.0% (734/4317) , the abnormal rate of urine routine was 15.7% (1227/7810) , the abnormal rate of liver function was 8.6% (356/4147) , and the abnormal rate of electrocardiogram was 12.3%(963/7810). The detection rates of low count number of leukocytes, platelets, neutrophils and occupational contraindications were 4.6%(360/7810) , 1.4%(108/7810) , 4.2%(330/7810) and 1.4%(110/7810) , respectively. The detection rates of low count number of leukocytes, platelets and neutrophils in female were all higher than those in male (P<0.05). The detection rates of low count number of platelets, neutropenia and occupational contraindications increased with age and working age (P<0.05 ). There were significant differences in the detection rates of low count number of leukocytes, platelets, neutrophils and occupational contraindications among benzene workers in different economic types (P<0.05) , and the highest among foreign companies, followed by private enterprise. There were statistically significant differences in the detection rates of low count number of platelets, neutrophils and occupational contraindications in benzene workers of different enterprise sizes (P<0.05) , and the highest was found in micro enterprises, followed by small enterprises. Conclusion: In 2017, the occupational health status of workers exposed to benzene in Jiangxi province is not optimistic. It is necessary to strengthen the occupational health supervision of small and micro-sized enterprises, foreign enterprises and private enterprises, take the initiative to improve health surveillance, and effectively protect the physical and mental health of workers.

Quality of life and comprehensive health supervision for children with Down syndrome in Thailand.

Children with Down syndrome often require several specialty doctors and multidisciplinary teams for their associated anomalies. This may impact their quality of life and creates gaps in treatment monitoring. No studies have yet been conducted in Thailand to measure their quality of life and level of comprehensive health supervision. Therefore, we aimed to study the quality of life among children with Down syndrome and determine if they receive comprehensive health supervision for their condition. In this descriptive research, data were collected from a medical record review of children with Down syndrome during a 1-year period in our Pediatric Outpatient Clinic; 50 children and 39 caregivers participated. Mean total quality of life score of the children was 67.9/100 points. The children had the highest scores (73.6 ± 12.8) in emotional functioning and the lowest (57.2 ± 25.6) in cognitive functioning. It appears that the quality of life may be lower in Down syndrome patients than in Thai children without it. Regarding health supervision, all 50 were screened for thyroid function, and 48 received cardiac evaluations. However, only 17 (34%) received "complete basic assessment" of 5 screening combinations with developmental evaluations and growth monitoring. Furthermore, none received "comprehensive" evaluations for all recommended conditions. While these findings show a need for health supervision improvement for children with Down syndrome within our hospital, they may also be indicative for most care facilities throughout Thailand.

Biotechnological potential and applications of microbial consortia.

Recent advances in microbial consortia present a valuable approach for expanding the scope of metabolic engineering. Systems biology enable thorough understanding of diverse physiological processes of cells and their interactions, which in turn offers insights into the optimal design of synthetic microbial consortia. Yet, the study of synthetic microbial consortia is still in early infancy, facing many unknowns and challenges in intercellular communication and construction of stable and controllable microbial consortia systems. In this review, we comprehensively discussed the recent application of defined microbial consortia in the fields of human health monitoring and medicine exploitation, valuable compounds synthesis, consolidated bioprocessing of lignocellulosic materials and environmental bioremediation. Moreover, the outstanding challenges and future directions to advance the development of high-efficient, stable and controllable synthetic microbial consortia were highlighted.

When Do Clinicians Decide to Screen Children for Mental Health-Behavioral-Developmental Delays/Disorders: Is it Time to Reconsider Policy Recommendations?

OBJECTIVES: To determine at which ages providers choose to screen for mental, behavioral, and developmental disorder/delay (MBDD), and what they find; and which, if any, public and professional guidelines are most effective at identification. STUDY DESIGN: Naturalistic retrospective cohort study of 215 general pediatric and family practice clinics within 24 US states involving 160 634 encounters during which MBDD screening tests were administered. RESULTS: Almost all clinicians (96%) administered screens at ages targeted by the American Academy of Pediatrics (AAP), that is, 9, 18, 24, and/or 30 months of age, but also at younger and older ages: 57% opted to screen at ≥5 years of age. Of the 8% of children at risk for probable MBDD, 27% were detected at American Academy of Pediatrics-targeted ages-71% across the birth to 5-year age range and an additional 29% at ≥5 years of age. Children >30 months of age were 3 times more likely to have probable MBDD than were younger children, and those >5 years of age were almost 4 times more likely to have probable MBDD. Older children were more likely to have psychosocial risk factors, but age itself was the most powerful predictor. CONCLUSIONS: Most clinicians preferred to screen across the birth to 8-year age range and their findings revealed that most MBDDs cannot be detected in the earliest years of life. Policies regarding the timing of screening should be expanded to include all well visits and between visits if needed.

Health supervision for people with Bloom syndrome.

Bloom Syndrome (BSyn) is an autosomal recessive disorder that causes growth deficiency, endocrine abnormalities, photosensitive skin rash, immune abnormalities, and predisposition to early-onset cancer. The available treatments for BSyn are symptomatic, and early identification of complications has the potential to improve outcomes. To accomplish this, standardized recommendations for health supervision are needed for early diagnosis and treatment. The purpose of this report is to use information from the BSyn Registry, published literature, and expertise from clinicians and researchers with experience in BSyn to develop recommendations for diagnosis, screening, and treatment of the clinical manifestations in people with BSyn. These health supervision recommendations can be incorporated into the routine clinical care of people with BSyn and can be revised as more knowledge is gained regarding their clinical utility.

Effects of Pediatric Anticipatory Guidance on Mothers of Young Children.

Provision of anticipatory guidance to parents during well-child visits is a defining component of pediatric primary care. Using nationally representative data from the 2000 U.S. National Survey of Early Childhood Health, this study addressed the questions of whether, how, and what mothers of children below age 3 with different ethnic/racial background could benefit from anticipatory guidance. Structural equation modeling results showed that across ethnic/racial groups, guidance was directly associated with decreased maternal stress and directly and indirectly associated with effective parenting practices in child development, discipline, and safety. Moreover, guidance was consistently associated with decreased stress (effect size = .159/.123/.252) and increased effective parenting practices in child development (total effect = .090/.179/.296), discipline (total effect = .079/.138/.111), and safety (total effect = .186/.204/.229) in White/Black/Latino groups, respectively. Finally, whereas guidance was directly associated with child safety in all groups, it was indirectly contributed to child development and discipline via maternal stress in the Latino group only.

HEEADSSS up: pediatric residents' confidence and practice in adolescent health care before and after mandatory adolescent medicine rotations in Thailand.

Background The field of adolescent medicine is an emerging area of specialization in Thailand. Adolescent medicine was made a mandatory rotation in general pediatric residency training programs for the class of 2013. Objective This study aims to explore the difference in pediatric residents' confidence and the frequency in providing aspects of care to adolescents. Subjects Participants included two groups of pediatric residents; the former curriculum group (FCG) in 2012 and the mandatory curriculum group (MCG) in 2015. Methods Participants in this cross-sectional study answered a 41-item self-administered questionnaire and results were analyzed by descriptive statistics. Results There were 91 participants, 50.05% were in the MCG. The FCG reported a higher percentage of feeling "more confident" on physical examination (p = 0.031, V = 0.23) and growth assessment (p = 0.040, V = 0.22). The MCG reported a higher percentage of "more frequently" carrying out the psychosocial assessment (p = 0.035, V = 0.22). Conclusion The FCG reported higher levels of confidence than the MCG in most of the items, while the MCG reported higher levels of frequency in providing care. The psychosocial (HEEADSSS) assessment, a key aspect of the adolescent clinical visit, was the item that the MCG reported doing more frequently than the FCG which remained significant when only the postgraduate year of training (PGY) 4s were compared.

Developing a CHARGE syndrome checklist: Health supervision across the lifespan (from head to toe).

Health supervision and management considerations for individuals with CHARGE syndrome are often complex, and a comprehensive approach is essential. The Atlantic Canadian CHARGE syndrome team developed a checklist organized by body system and age to aid healthcare providers in their approach to the ongoing care of these individuals. The checklist was evaluated qualitatively using a modified Delphi method with widespread consultation from expert healthcare practitioners, parents, and individuals with CHARGE syndrome. These are the first comprehensive guidelines across the lifespan of CHARGE syndrome that suggest a consistent approach to medical surveillance, investigations, and management for the physician and the multi-disciplinary team caring for these individuals. We anticipate that these guidelines will provide improvements in care by preventing missed diagnoses, allowing for anticipatory counseling, and facilitating early referral for interventions and treatments. © 2017 Wiley Periodicals, Inc.

Disparities in Health Supervision for Children With Down Syndrome.

Increasing evidence suggests children with Down syndrome do not receive recommended health care services. We retrospectively assessed adherence to the 2001 American Academy of Pediatrics health supervision guidelines for 124 children with Down syndrome. Cervical spine radiographs were completed for 94% of children, often preoperatively. Adherence to complete blood count recommendations was 55% (95% CI 44% to 66%); lower for males ( P = .01) and children with private medical insurance ( P = .04). Adherence to thyroid function recommendations was 61% (95% CI 54% to 67%); higher for children seen by a pediatrician ( P = .002) and with known thyroid disease ( P < .0001). Adherence to audiology and ophthalmology recommendations was 33% (95% CI 27% to 40%) and 43% (95% CI 37% to 50%), respectively. Adherence rates were higher for children referred to an otolaryngologist ( P = .0002) and with known eye disease ( P < .0001). Future efforts should identify barriers to care and improve adherence to recommended screening.