Child Health Surveillance Programme Research Articles

Building bridges: enhancing cultural understanding and community engagement in the CHAMPS program—experience sought from Gobe Challa Village, Ethiopia

Public health programs’ successful implementation often requires a thorough consideration ⁠ of local cultural contexts and effective community engagement. The complexities and obstacles that public health initiatives may face in culturally ⁠ diverse communities are highlighted by our case study, offering valuable insights. ‍ This article focuses on analyzing a particular incident that occurred in Gobe Challa Village, connected ⁠ to the implementation of the Child Health and Mortality Prevention Surveillance (CHAMPS) program. In Gobe Challa Village, an incident occurred that centered on discord within the community and religious fears, resulting ⁠ from misunderstandings surrounding and a general lack of comprehension about the CHAMPS program. Our resolution process involved engaging the community, and religious leaders in constructive dialogue. Throughout this involvement, we delivered extensive elucidation on the aims and ⁠ protocols of the CHAMPS program, mitigating conflicts within the community. The community successfully achieved acceptance of the CHAMPS program by directly ⁠ and respectfully addressing misconceptions and fears, fostering a common understanding. This study emphasizes the significance of effective communication, community engagement, and ⁠ consideration of cultural customs when implementing public health programs. The experiences derived from this incident can act as a practical ⁠ manual for future public health initiatives encountering analogous cultural and societal dynamics. The main emphasis is on highlighting how a proactive, sensitive, and inclusive approach can ⁠ alleviate potential conflicts while also promoting program acceptance and encouraging community engagement. These discoveries have relevance to various public health initiatives and emphasize the significance ⁠ of a culturally conscious, community-involved approach in executing global health programs. ‍

Laying the foundations for high-quality mortality surveillance in Sierra Leone: Early learnings from the Child Health and Mortality Prevention Surveillance (CHAMPS) Network

Background More than four million child deaths occur annually; most are neither adequately documented nor investigated. The Child Health and Mortality Prevention Surveillance (CHAMPS) program was launched in Sierra Leone (SL) to generate high-quality data to determine definitive causes of stillbirths and under-five mortality (U5M) to inform decision-makers. Despite the multiple challenges of a greenfield research site, we highlight the experience of setting up a high-quality mortality surveillance (MS) system, including the viability of Minimal Invasive Tissue Sampling (MITS). Methods To establish the MS program, we implemented qualitative research and community entry, a sensitive system for timely identification and notification of deaths and followed CHAMPS standard operating procedures for investigating deaths and assigning accurate and definitive causes of death. CHAMPS in SL was implemented in four phases during 2017-2019 by a consortium. Enrolled stillbirths and U5M underwent verbal autopsy, clinical-data-abstractions, MITS, microbiology, molecular and histopathological diagnoses, and Determination of Cause of Death (DeCoDe). Results CHAMPS achieved a 93% consent rate, capitalizing on existing Ministry of Health infrastructure, community involvement, and local ownership. As of December 2022, 3,433 deaths were registered, with 1,056 (31%) eligible for enrolment. Of 439 cases DeCoDed, 402 (92%) of case-families had received feedback on the cause of death. Using findings and recommendations from the DeCoDe experts, CHAMPS is implementing interventions to reduce stillbirths and U5M at CHAMPS SL, including clinical review meetings, provision of emergency drugs and routine child death audits. Conclusion Implementing innovative MS in a challenging context, such as SL, is possible. Building on local knowledge and infrastructure has enabled the CHAMPS project to achieve remarkably high consent rates, given the cultural, religious and sensitivity challenges surrounding seeking consent for MITS from caregivers who have just lost a child. The programme has invested significantly in upscaling local technical capacity for surveillance and laboratory diagnostics.

Child Health and Mortality Prevention Surveillance (CHAMPS): Manhiça site description, Mozambique

The Manhiça Health Research Centre (Manhiça HDSS) was established in 1996 in Manhiça, a rural district at Maputo Province in the southern part of Mozambique with approximately 49,000 inhabited households, a total population of 209.000 individuals, and an annual estimated birth cohort of about 5000 babies. Since 2016, Manhiça HDSS is implementing the Child Health and Mortality Prevention Surveillance (CHAMPS) program aiming to investigate causes of death (CoD) in stillbirths and children under the age of 5 years using an innovative post-mortem technique known as Minimally Invasive Tissue sampling (MITS), comprehensive pathogen screening using molecular methods, clinical record abstraction and verbal autopsy. Both in-hospital and community pediatric deaths are investigated using MITS. For this, community-wide socio-demographic approaches (notification of community deaths by key informants, formative research involving several segments of the community, availability of free phone lines for notification of medical emergencies and deaths, etc.) are conducted alongside to foster community awareness, involvement and adherence as well as to compute mortality estimates and collect relevant information of health and mortality determinants. The main objective of this paper is to describe the Manhiça Health and Demographic Surveillance System (HDSS) site and the CHAMPS research environment in place including the local capacities among its reference hospital, laboratories, data center and other relevant areas involved in this ambitious surveillance and research project, whose ultimate aim is to improve child survival through public health actions derived from credible estimates and understanding of the major causes of childhood mortality in Mozambique.

Prevalence of Antimicrobial Resistance in Klebsiella pneumoniae, Enterobacter cloacae, and Escherichia coli Isolates among Stillbirths and Deceased Under-Five Children in Sierra Leone: Data from the Child Health and Mortality Prevention Surveillance Sites from 2019 to 2022.

Klebsiella pneumoniae, Escherichia coli, and Enterobacter cloacae are associated with most nosocomial infections worldwide. Although gaps remain in the knowledge of their susceptibility patterns, these are in antimicrobial stewardship. This study aimed to describe antimicrobial susceptibility profiles of the above organisms isolated from postmortem blood from stillbirths and under-five children enrolled in the Child Health and Mortality Prevention Surveillance (CHAMPS) program in Sierra Leone. This was a surveillance study of bacteria isolates from postmortem blood cultures taken within 24 h of death from stillbirths and children aged 0-59 months between March 2019 and February 2022. This was followed by identification and antibiotic sensitivity testing using Becton Dickinson Phoenix M50 (USA). Descriptive analysis was used to characterize the isolates and their antimicrobial susceptibility patterns. Of 367 isolates, K. pneumoniae was the most frequently isolated organism (n = 152; 41.4%), followed by E. coli (n = 40; 10.9%) and E. cloacae (n = 35; 9.5%). Using BACTEC™ FX 40 (Franklin Lakes, NJ, USA), 367 isolates were identified from blood using bacteriological methods. Extended spectrum beta-lactamase (ESBL) was observed in 143 (94.1%) of K. pneumoniae isolates and 27 (65.5%) of E. coli isolates. Carbapenem-resistant organisms (CRO) were seen in 31 (20.4%) of K. pneumoniae and 5 (12.5%) of E. coli isolates. A multidrug resistance (MDR) pattern was most prevalent in E.cloacae (33/35; 94.3%), followed by K. pneumoniae (138/152; 90.8%). Our study showed a high prevalence of multidrug resistance among bacterial isolates in the catchment areas under surveillance by the CHAMPS sites in Sierra Leone.

Experience on postmortem minimally invasive tissue sampling to ascertain the cause of death determination in South African children: A case for implementing as standard of care.

Determining the death burden for prioritising public health interventions necessitates detailed data on the causal pathways to death. Postmortem minimally invasive tissue sampling (MITS), incorporating histology, molecular and microbial culture diagnostics, enhances cause-of-death attribution, particularly for infectious deaths. MITS proves a valid alternative to full diagnostic autopsies, especially in low- and middle-income countries. In Soweto, South Africa (SA), the Child Health and Mortality Prevention Surveillance (CHAMPS) programme has delineated over 1 000 child and stillbirth deaths since 2017. This SA CHAMPS site supports advocating for the use of postmortem MITS as routine practice, for more granular insights into under-5 mortality causes. This knowledge is crucial for SA's pursuit of Sustainable Development Goal 3.2, targeting reduced neonatal and under-5 mortality rates. This commentary explores the public health advantages and ethicolegal considerations surrounding implementing MITS as standard of care for stillbirths, neonatal and paediatric deaths in SA. Furthermore, based on the data from CHAMPS, we present three pragmatic algorithmic approaches to the wide array of testing options for cost-effectiveness and scalability of postmortem MITS in South African state facilities.

Consortium for the Study of Pregnancy Treatments (Co-OPT): An international birth cohort to study the effects of antenatal corticosteroids.

Antenatal corticosteroids (ACS) are widely prescribed to improve outcomes following preterm birth. Significant knowledge gaps surround their safety, long-term effects, optimal timing and dosage. Almost half of women given ACS give birth outside the "therapeutic window" and have not delivered over 7 days later. Overtreatment with ACS is a concern, as evidence accumulates of risks of unnecessary ACS exposure. The Consortium for the Study of Pregnancy Treatments (Co-OPT) was established to address research questions surrounding safety of medications in pregnancy. We created an international birth cohort containing information on ACS exposure and pregnancy and neonatal outcomes by combining data from four national/provincial birth registers and one hospital database, and follow-up through linked population-level data from death registers and electronic health records. The Co-OPT ACS cohort contains 2.28 million pregnancies and babies, born in Finland, Iceland, Israel, Canada and Scotland, between 1990 and 2019. Births from 22 to 45 weeks' gestation were included; 92.9% were at term (≥ 37 completed weeks). 3.6% of babies were exposed to ACS (67.0% and 77.9% of singleton and multiple births before 34 weeks, respectively). Rates of ACS exposure increased across the study period. Of all ACS-exposed babies, 26.8% were born at term. Longitudinal childhood data were available for 1.64 million live births. Follow-up includes diagnoses of a range of physical and mental disorders from the Finnish Hospital Register, diagnoses of mental, behavioural, and neurodevelopmental disorders from the Icelandic Patient Registers, and preschool reviews from the Scottish Child Health Surveillance Programme. The Co-OPT ACS cohort is the largest international birth cohort to date with data on ACS exposure and maternal, perinatal and childhood outcomes. Its large scale will enable assessment of important rare outcomes such as perinatal mortality, and comprehensive evaluation of the short- and long-term safety and efficacy of ACS.

Child Health and Mortality Prevention Surveillance (CHAMPS): Manhiça site description, Mozambique.

The Manhiça Health Research Centre (Manhiça HDSS) was established in 1996 in Manhiça, a rural district at Maputo Province in the southern part of Mozambique with approximately 49,000 inhabited households, a total population of 209.000 individuals, and an annual estimated birth cohort of about 5000 babies. Since 2016, Manhiça HDSS is implementing the Child Health and Mortality Prevention Surveillance (CHAMPS) program aiming to investigate causes of death (CoD) in stillbirths and children under the age of 5 years using an innovative post-mortem technique known as Minimally Invasive Tissue sampling (MITS), comprehensive pathogen screening using molecular methods, clinical record abstraction and verbal autopsy. Both in-hospital and community pediatric deaths are investigated using MITS. For this, community-wide socio-demographic approaches (notification of community deaths by key informants, formative research involving several segments of the community, availability of free phone lines for notification of medical emergencies and deaths, etc.) are conducted alongside to foster community awareness, involvement and adherence as well as to compute mortality estimates and collect relevant information of health and mortality determinants. The main objective of this paper is to describe the Manhiça Health and Demographic Surveillance System (HDSS) site and the CHAMPS research environment in place including the local capacities among its reference hospital, laboratories, data center and other relevant areas involved in this ambitious surveillance and research project, whose ultimate aim is to improve child survival through public health actions derived from credible estimates and understanding of the major causes of childhood mortality in Mozambique.

Traditional Medicine Beliefs and Practices among Caregivers of Children under Five Years-The Child Health and Mortality Prevention Surveillance (CHAMPS), Western Kenya: A qualitative study.

Approximately 80% of the population residing in sub-Saharan Africa relies on Traditional Medicine (TM). However, literature on factors motivating the use of TM for children under the age of five in these settings is limited. Such information can guide policy formulation for integration of TM into mainstream health care services. This study aimed to describe the motivation on use of TM among caregivers of children residing in rural and urban communities in western Kenya. The socio-behavioral sciences (SBS) arm of the Child Health and Mortality Prevention Surveillance (CHAMPS) program in western Kenya, conducted a cross-sectional qualitative study in Manyatta-an urban informal settlement located in Kisumu town and Karemo-a rural setting in Siaya County. We performed 29 in-depth interviews, 5 focus group discussions and 11 semi-structured interviews with community representatives (n = 53), health workers (n = 17), and community leaders (n = 18). All the participants were purposively sampled. We performed thematic analysis using both inductive and deductive approaches. Data management was completed on Nvivo 11.0 software (QSR International, Melbourne, Australia). Our findings reveal that some caregivers prefer TM to treat some childhood diseases. Use of TM was informed by illness beliefs about etiology of disease. We observed an appreciation from the study participants that malaria can effectively be treated by Conventional Medicine (CM) while TM was preferred to treat measles and diseases believed to be associated with supernatural etiology such as witchcraft, evil spirit or breaching cultural taboos. TM was also used in instances where CM failed to provide a diagnosis or when CM was 'slow'. TM in such cases was used as a last resort. We observed varied beliefs that motivate caregivers' choice of TM use among children in western Kenya. It is therefore crucial to consider perceptions and socio-cultural beliefs about illnesses when formulating interventions that are geared towards child health.

Novel two-tiered developmental screening programme for Singaporean toddlers: a quality improvement report

Early identification of developmental delays with timely intervention, especially before the age of 3 years, can improve child development. In Singapore, however, diagnosis and intervention for developmental delays occur at...

Using Participatory Workshops to Assess Alignment or Tension in the Community for Minimally Invasive Tissue Sampling Prior to Start of Child Mortality Surveillance: Lessons From 5 Sites Across the CHAMPS Network.

The Child Health and Mortality Prevention Surveillance (CHAMPS) program is a 7-country network (as of December 2018) established by the Bill & Melinda Gates Foundation to identify the causes of death in children in communities with high rates of under-5 mortality. The program carries out both mortality and pregnancy surveillance, and mortality surveillance employs minimally invasive tissue sampling (MITS) to gather small samples of body fluids and tissue from the bodies of children who have died. While this method will lead to greater knowledge of the specific causes of childhood mortality, the procedure is in tension with cultural and religious norms in many of the countries where CHAMPS works—Bangladesh, Ethiopia, Kenya, Mali, Mozambique, Sierra Leone, and South Africa. Participatory Inquiry Into Community Knowledge of Child Health and Mortality Prevention (PICK-CHAMP) is a community entry activity designed to introduce CHAMPS to communities and gather initial perspectives on alignments and tensions between CHAMPS activities and community perceptions and priorities. Participants’ responses revealed medium levels of overall alignment in all sites (with the exception of South Africa, where alignment was high) and medium levels of tension (with the exception of Ethiopia, where tension was high). Alignment was high and tension was low for pregnancy surveillance across all sites, whereas Ethiopia reflected low alignment and high tension for MITS. Participants across all sites indicated that support for MITS was possible only if the procedure did not interfere with burial practices and rituals.

Associations of Socioeconomic Deprivation and Preterm Birth With Speech, Language, and Communication Concerns Among Children Aged 27 to 30 Months

Successful acquisition of language is foundational for health and well-being across the life course and is patterned by medical and social determinants that operate in early life. To investigate the associations of neighborhood disadvantage, gestational age, and English as first language with speech, language, and communication concerns among children aged 27 to 30 months. This cohort study used birth data from the National Health Service maternity electronic medical record linked to the Child Health Surveillance Programme for preschool children. The cohort included 28 634 children in the United Kingdom (NHS Lothian, Scotland) born between January 2011 and December 2014 who were eligible for a health review at age 27 to 30 months between April 2013 and April 2016. Data analysis was conducted between January 2018 and February 2019. The associations of neighborhood deprivation (using the Scottish Index of Multiple Deprivation 2016 quintiles), gestational age, and whether English was the first language spoken in the home with preschool language function were investigated using mutually adjusted logistic regression models. Speech, language, and communication (SLC) concern ascertained at age 27 to 30 months. Records of 28 634 children (14 695 [51.3%] boys) with a mean (SD) age of 27.7 (2.2) months were matched. After excluding records with missing data, there were 26 341 records. The prevalence of SLC concern was 13.0% (3501 of 26 963 children with SLC data). In fully adjusted analyses, each 1-week increase in gestational age from 23 to 36 weeks was associated with an 8.8% decrease in the odds of a child having an SLC concern reported at 27 months (odds ratio, 0.92; 95% CI, 0.90-0.93). The odds of a child for whom English is not the first language of having SLC concern at age 27 to 30 months were 2.1-fold higher than those for a child whose first language is English (OR, 2.09; 95% CI, 1.66-2.64). The odds ratio for having an SLC concern among children living in the most deprived neighborhoods, compared with the least deprived neighborhoods, was 3.15 (95% CI, 2.79-3.56). The estimated probabilities for preterm children having an SLC concern were highest for those living in the most deprived areas. This study found that SLC concerns at age 27 to 30 months are common and independently associated with increasing levels of neighborhood deprivation and lower gestational age. Policies that reduce childhood deprivation could be associated with improved preschool language ability and potentially avoid propagation of disadvantage across the life course, including for children born preterm.

Higher BMI, Higher Risk of Slipped Capital Femoral Epiphysis

Research Article| February 01 2019 Higher BMI, Higher Risk of Slipped Capital Femoral Epiphysis AAP Grand Rounds (2019) 41 (2): 20. https://doi.org/10.1542/gr.41-2-20 Views Icon Views Article contents Figures & tables Video Audio Supplementary Data Peer Review Share Icon Share Facebook Twitter LinkedIn MailTo Tools Icon Tools Get Permissions Cite Icon Cite Search Site Citation Higher BMI, Higher Risk of Slipped Capital Femoral Epiphysis. AAP Grand Rounds February 2019; 41 (2): 20. https://doi.org/10.1542/gr.41-2-20 Download citation file: Ris (Zotero) Reference Manager EasyBib Bookends Mendeley Papers EndNote RefWorks BibTex toolbar search toolbar search search input Search input auto suggest filter your search All PublicationsAll JournalsAAP Grand RoundsPediatricsHospital PediatricsPediatrics In ReviewNeoReviewsAAP NewsAll AAP Sites Search Advanced Search Topics: body mass index procedure, epiphyses, slipped, obesity Source: Perry DC, Metcalfe D, Lane S, et al. Childhood obesity and slipped capital femoral epiphysis. Pediatrics. 2018; 142(5): e20181067; doi: https://doi.org/10.1542/peds.2018-1067Google Scholar Investigators from multiple UK institutions conducted a cohort study to assess the strength of association between childhood obesity and slipped capital femoral epiphysis (SCFE). The cohort was identified using a nationwide child health surveillance program in Scotland, as well as a data set that included 10% of the Scottish population. In both data sets, child demographics, height, and weight were routinely recorded at school entry (5–6 years old) by school nurses. Height and weight among a subgroup of cohort children at 11–12 years old were recorded in a third data set. The primary exposure was BMI, categorized as underweight (<5%), normal weight (5%–85%), overweight (≥85%–94%), mild/moderate obesity (≥95%–99%), or severe obesity (≥99%). The primary outcome was SCFE diagnosed between the ages of 6 and 18 years, as determined by ICD-10 codes in the Scottish Morbidity Record, a registry of patients discharged from all Scottish hospitals. Cohort children contributed to follow-up until they reached 18 years, received a diagnosis of SCFE, or the study period ended. Investigators calculated the incidence of SCFE by BMI category among children 5–6 years old and 11–12 years old. The risk of SCFE attributable to BMI was also calculated. There were 597,017 children 5–6 years old and 39,468 children 11–12 years old included in the analysis, with a total follow-up time of 4.26 million child-years. Among children 5–6 years old, 11.9% were overweight, and 9.2% were obese. Of those obese at 5–6 years old, 75% remained obese at 11–12 years old. There were 209 children diagnosed with SCFE. The incidence of SCFE in children 5–6 years old was 4.7 per 100,000 child-years of risk (95% CI, 4.1–5.4). Compared to children of normal weight at 5–6 years old, those who had severe obesity, had mild/moderate obesity, or were overweight had 5.9 (95% CI, 3.9–9.0), 3.8 (95% CI, 2.6–5.8), and 1.5 (95% CI, 0.9–2.3) times greater risk of developing SCFE, respectively. The risk of SCFE attributable to BMI at 5–6 years old was 78% among children with obesity and 31% among children who were overweight. The incidence of SCFE in children 11–12 years old was 23.8 per 100,000 child-years of risk (95% CI, 14.8–36.4), with a 17 times greater risk of developing SCFE (95% CI, 5.9–49.0) in those with severe obesity (vs normal BMI) at 11–12 years. The investigators conclude that childhood BMI is strongly associated with SCFE. Dr Hennrikus has disclosed no financial relationship relevant to this commentary. This commentary does not contain a discussion of an unapproved/investigative use of a commercial product/device. Childhood obesity is a global health problem.1 SCFE is a disease that causes lifelong disability due to arthritis, pain, and leg length inequality.2,3 SCFE occurs through the histologic zone of hypertrophy in the open growth plate.4 The peak age for SCFE is around puberty.... You do not currently have access to this content.

Socioeconomic disadvantage, fetal environment and child development: linked Scottish administrative records based study

BackgroundCognitive development in childhood is negatively affected by socioeconomic disadvantage. This study examined whether differences in fetal environment might mediate the association between family socioeconomic position and child development.MethodsData were linked from the Scottish Longitudinal Study, maternity inpatient records and the Child Health Surveillance Programme – Pre School for 32,238 children. The outcome variables were based on health visitor assessment of gross motor, hearing and language, vision and fine motor, and social development. Socioeconomic position was measured using parental social class and highest qualification attained. Random-effects logistic regression models were estimated to account for multiple reviews and familial clustering. Mediation analysis was conducted using the Karlson-Holm-Breen method.ResultsHearing and language, vision and fine motor, and social development were associated with lower parental social class and lower parental educational qualifications after adjustment for fetal environment. Fetal environment partially mediated the estimated effect of having parents without educational qualifications for hearing and language (β = 0·15; 95% confidence interval (CI) = 0·07, 0·23), vision and fine motor (β = 0·19; CI = 0·10, 0·28) and social development (β = 0·14; CI = 0·03 to 0·25).ConclusionsSocioeconomic position predicted hearing and language, vision and fine motor, and social development but not gross motor development. For children of parents without educational qualifications, fetal environment appears to contribute to a part of the socioeconomic gradient in child development abnormalities but post-natal environment appears to still explain the majority of the gradient and for other children most of it.

The Role of Community Health Workers in Maternal and Child Health Surveillance to Optimize Maternal and Child Health in Pasuruan District, East Java

Background : Maternal mortality ratio, infant mortality rate, and underfive mortality rate are still high in Indonesia. Pasuruan is one of the districts in East Java with the highest infant mortality rate. One of the public health interventions that has been undertaken to address this issue is maternal and child health surveillance program with community health workers being the leading implementers. This study aimed to describe the role of community health workers in maternal and child health surveillance to optimize maternal and child health care services in Pasuruan District, East Java. Subje cts and Method: This was a qualitative study using case study approach. It was conducted in Pasuruan, East Java. Key informants were selected by criterion sampling. The data were collected by in-depth interview, focus group discussion, observation, and document review. Data validity was checked by triangulation. Results : Community based maternal and child health surveillance program has been implemented for 4 years. However, only some of all community health workes have been trained in this program. The tasks of these community health workers included advocacy and monitoring of maternal and child health in the areas of posyandu. The implementation of these surveillance program had some obstacles, including low insentive of community health worker, inactive community health worker, lack of awareness among community members on maternal and child health issues, and medical factors of pregnant mothers that caused mortality. Conclusion : Community health workers help improve the quality of maternal and child health care by surveillance program, although their performances have yet to be enhanced. Keyword : maternal mortality rate, infant mortality rate, community health workers Correspondence: Ninil Dwi Pangestu. Masters Program in Public Health, Sebelas Maret University, Jl. Ir. Sutami No. 36A Surakarta 57126, Jawa Tengah. E-mail: pangestu.ninil@gmail.com. Mobile +62856553737. Journal of Health Policy and Management (2017), 2(2): 128-136 https://doi.org/10.26911/thejhpm.2017.02.02.04

Improving recognition of Duchenne muscular dystrophy: a retrospective case note review

BackgroundOver the last 30 years, there has been little improvement in the age of diagnosis of Duchenne muscular dystrophy (DMD) (mean age of 4.5–4.11 years).AimTo review the diagnostic process for...

G.P.161: Improving the diagnosis of Duchenne muscular dystrophy

Despite the recent advances in the management and survival of Duchenne muscular dystrophy (DMD), there has not been a significant improvement in the age of diagnosis over the last 30 years. Early diagnosis is crucial. Recent data suggest that early initiation of corticosteroids might be associated with better long-term outcomes. In addition there are potential promising therapeutic interventions on the horizon and these are likely to be of greater benefit in younger children with less damaged muscles. We reviewed the diagnostic process for DMD in boys without a family history at our tertiary centre for Neuromuscular Diseases in England over the last 10 years, in order to identify specific delays and suggest areas of improvement. The mean age of first reported symptoms was 2.7 years. First engagement of a health care professional occurred at a mean age of 3.6 years (presentational delay = 10.4 months). The diagnosis of DMD was genetically confirmed at a mean age of 4.3 years. The diagnostic delay (8.8 months) was almost entirely due to delay in testing Creatine Kinase (CK) levels (7 months). The total delay from parental concern to genetic diagnosis was 19.2 months (1.6 years). Our study showed an improvement in the age of diagnosis in DMD in the UK, however there continues to be a presentational delay, in addition to a delay in obtaining a CK test. To reduce these delays, we propose the introduction of a new mnemonic MUSCLE for screening for DMD as part of the Child Health Surveillance Program and to lowering the threshold for CK testing in primary care in any boy who presents with hallmark features of DMD (including unexplained motor or speech development delay). An earlier diagnosis of DMD will allow timely access to genetic counselling, standards of care and clinical trials for affected boys.

Public Health Nurse Perceptions of Empowerment and Advocacy in Child Health Surveillance in West Ireland

The objective of this study was to analyze public health nurses' perceptions of empowerment and advocacy within a child health screening and surveillance program in West Ireland. This study combined both qualitative and quantitative research methods. A purposive sample of 9 public health nurses (PHNs) (phase 1) participated in 2 focus groups and a purposive sample of 43 clients attending the child health screening service completed a questionnaire (phase 2). Focus groups and Questionnaires were used. Thematic content analysis revealed that PHNs in the study did not perceive themselves to be empowered in their work. They attributed this to workload, lack of professional advocacy, and restricted access to power and opportunity, while also identifying the need for continued managerial support and feedback. The results suggest that PHNs need to be empowered in order to facilitate client empowerment. PHNs struggled with empowerment and client advocacy. There is a need for professional development for PHNs in order to support them to more critically engage with empowerment and self-efficacy in their work. This needs to be done within organizational structures that support PHNs to critically analyze the role of advocacy and empowerment in their practice.

Extraction and Refinement Strategy for detection of autism in 18‐month‐olds: a guarantee of higher sensitivity and specificity in the process of mass screening

For early detection of autism, it is difficult to maintain an efficient level of sensitivity and specificity based on observational data from a single screening. The Extraction and Refinement (E&R) Strategy utilizes a public children's health surveillance program to produce maximum efficacy in early detection of autism. In the extraction stage, all cases at risk of childhood problems, including developmental abnormality, are identified; in the refinement stage, cases without problems are excluded, leaving only cases with conclusive diagnoses. The city of Yokohama, Japan, conducts a routine child health surveillance program for children at 18 months in which specialized public health nurses administer YACHT-18 (Young Autism and other developmental disorders CHeckup Tool), a screening instrument to identify children at risk for developmental disorders. Children who screen positive undergo further observation, and those without disorders are subsequently excluded. To study the efficacy of early detection procedures for developmental disorders, including autism, 2,814 children born in 1988, examined at 18 months of age, and not already receiving treatment for diseases or disorders were selected. In the extraction stage, 402 (14.3%) children were identified for follow-up. In the refinement stage, 19 (.7%) of these were referred to the Yokohama Rehabilitation Center and diagnosed with developmental disorders. The extraction stage produced four false negatives, bringing total diagnoses of developmental disorders to 23 (.8%) - including 5 with autistic disorder and 9 with pervasive developmental disorder - not otherwise specified (PDDNOS). Sensitivity was 60% for autistic disorder and 82.6% for developmental disorders. Specificity for developmental disorders rose to 100% with the E&R Strategy. Picture cards used in YACHT-18 provided a finer screen that excluded some false positive cases. An extraction and refinement methodology utilizing child health surveillance programs achieve high efficacy for early detection of autism.

Predictors (0–10 months) of psychopathology at age 1½ years – a general population study in The Copenhagen Child Cohort CCC 2000*

Epidemiological studies of mental health problems in the first years of life are few. This study aims to investigate infancy predictors of psychopathology in the second year of life. A random general population sample of 210 children from the Copenhagen Child Birth Cohort CCC 2000 was investigated by data from National Danish registers and data collected prospectively from birth in a general child health surveillance programme. Mental health outcome at 1(1/2) years was assessed by clinical and standardised measures including the Child Behavior Check List 1(1/2)-5 (CBCL 1(1/2)-5), Infant Toddler Symptom Check List (ITSCL), Checklist for Autism in Toddlers (CHAT), Bayley Scales of Infant Development (BSID II), Mannheim Eltern Interview (MEI), Parent Child Early Relational Assessment (PC ERA) and Parent Infant Relationship Global Assessment Scale (PIR-GAS), and disordered children were diagnosed according to the International Classification of Diseases (ICD-10) and Diagnostic Classification Zero to Three (DC: 0-3). Deviant language development in the first 10 months of life predicted the child having any disorder at 1(1/2) years, OR 3.3 (1.4-8.0). Neuro-developmental disorders were predicted by deviant neuro-cognitive functioning, OR 6.8 (2.2-21.4), deviant language development, OR 5.9 (1.9-18.7) and impaired social interaction and communication, OR 3.8 (1.3-11.4). Unwanted pregnancy and parents' negative expectations of the child recorded in the first months of the child's life were significant predictors of relationship disturbances at 1(1/2) years. Predictors of neuro-developmental disorders and parent-child relationship disturbances can be identified in the first 10 months of life in children from the general population.

Can a general health surveillance between birth and 10 months identify children with mental disorder at 1½ year?

Mental health surveillance in infancy was studied in an existing child health surveillance programme with child psychiatric disorder at 1(1/2) year as the outcome. Children considered of concern by community health nurses were cases in a case control study nested in the Copenhagen Child Cohort (CCC 2000). Outcome was mental health status at 1(1/2) year assessed by clinical and standardised strategies, including videotape recordings, parent interviews and the instruments: CBCL 1(1/2)-5, ITSCL, CHAT, Bayley Scales of Infant Development II, PC ERA and PIR-GAS. The positive predictive value of concern in the first 10 months of living was 24% (CI 17.0-31.9), the negative predictive value was 85% (CI 77.9-89.6) and the sensitivity was 56% (CI 42.4-69.0). Concern about development was significantly associated with the child having a neuro-developmental disorder at 1(1/2) year, and concern about mother-child relationship was associated with emotional, behavioural, eating, and sleeping disturbances. A general health surveillance program seems to have potentials to identify infants at risk for mental health problems provided standardised measures and specific training of the involved health professionals.