Dashboards as Mechanisms for Community Empowerment: Developing a Prototype for Child and Adolescent Well-being in California.

CONTEXT: In recent years, stakeholders in public health have emphasized measuring young peoples' well-being as a more holistic and upstream approach to understanding their health and development. However, summarizing the available indicators of well-being in ways that strengthen ongoing policy and community efforts remains a challenge. PROGRAM: Our objective was to develop a measurement framework of young peoples' well-being that would be engaging and actionable to a broad and diverse set of stakeholders in California. IMPLEMENTATION: We began with a scan of the relevant literature documenting previous efforts to measure young peoples' well-being, both within the United States and internationally. Subsequently, we individually interviewed a set of key informants and then convened a multidisciplinary panel of experts to solicit feedback on our approach. Throughout this iterative and collaborative process, we developed and refined a measurement framework based on the information provided across these various sources. EVALUATION: Findings suggest data dashboards are a promising approach for presenting a parsimonious yet holistic picture of young peoples' well-being. Dashboards can highlight well-being's multidimensionality by categorizing indicators over different domains. Our framework organizes indicators over 5 types: child-centric, subjective well-being, contextual determinants, developmental, and equity-focused. The design and flexibility of dashboards can also highlight important gaps in data collection that are of interest to end users such as indicators not yet collected among the broader population. Furthermore, dashboards can include interactive features, such as selecting key data elements, that can help communities articulate priority areas for policy action, thereby generating momentum and enthusiasm for future iterations and improvements. DISCUSSION: Data dashboards are well suited for engaging a variety of stakeholders on complex multidimensional concepts such as young peoples' well-being. However, to fulfill their promise, they should be codesigned and codeveloped through an iterative process with the stakeholders and community members they intend to serve.

Inequality and child health: dynamic population health interventions.

PURPOSE OF REVIEW: Established social gradients across a wide range of child health issues including obesity, anxiety, infectious diseases, injuries, prematurity and low birth weight suggest that much illness is avoidable and there is an imperative to intervene in this whole of society issue. This review examines recent advances in understanding of the pathways to health and health inequalities and their application to interventions to improve health equity. RECENT FINDINGS: Children's health develops over the life course in ways that are profoundly influenced by their entire developmental ecosystem including individual, family, community and system-level factors. Interventions to address child health inequalities must include action on the structural determinants of health, a greater focus on family and community health development, and attention to the acquisition of developmental capabilities. Nascent dynamic population health initiatives that address whole developmental ecosystems such as All Children Thrive, Better Start Bradford and Generation V, hold real promise for achieving child health equity. SUMMARY: Pathways to health inequalities are driven by social and structural determinants of health. Interventions to address inequalities need to be driven less by older biomedical models, and more by prevailing ecological and complex systems models incorporating a life course health development approach.

Vision and eye health in children 36 to <72 months: proposed data definitions.

PURPOSE: To recommend a standardized approach for measuring progress toward national goals to improve preschool children's eye health. METHODS: A multidisciplinary panel of experts reviewed existing measures and national vision-related goals during a series of face-to-face meetings and conference calls. The panel used a consensus process, informed by existing data related to delivery of eye and non-eye services to preschool children. RESULTS: Currently, providers of vision screening and eye examinations lack a system to provide national- or state-level estimates of the proportion of children who receive either a vision screening or an eye examination. The panel developed numerator and denominator definitions to measure rates of children "who completed a vision screening in a medical or community setting using a recommended method, or received an eye examination by an optometrist or ophthalmologist at least once between the ages of 36 to <72 months." A separate measure for children with neurodevelopmental disorders and measures for eye examination and follow-up were also developed. The panel recommended that these measures be implemented at national, state, and local levels. CONCLUSIONS: Standardized performance measures that include all eye services received by a child are needed at state and national levels to measure progress toward improving preschool children's eye health.

A lifecourse approach to health development: implications for the maternal and child health research agenda.

Lifecourse-informed models of health fundamentally challenge simple biomedical models, introducing new ways of thinking about how diseases develop. This paper considers the broad implications of lifecourse theory for the maternal and child health (MCH) research agenda. The Lifecourse Health Development model provides an organizing framework for a synthesis of the existing literature on lifecourse health and identification of gaps in knowledge. Priority areas identified for MCH research in order to close these knowledge gaps include: epigenetic mechanisms and their potential mutability; peri-conception as a critical and sensitive period for environmental exposures; maternal health prior to pregnancy; the role of the placenta as an important regulator of the intra-uterine environment; and ways to strengthen early mother-child interactions. Addressing knowledge gaps will require an emphasis on longitudinal rather than cross-sectional studies, long-term (lifetime) rather than short-term perspectives, datasets that include socio-demographic, biologic and genetic data on the same subjects rather than discipline-specific studies, measurement and study of positive health as well as disease states, and study of multi-rather than single generational cohorts. Adoption of a lifecourse-informed MCH research agenda requires a shift in focus from single cause-single disease epidemiologic inquiry to one that addresses multiple causes and outcomes. Investigators need additional training in effective interdisciplinary collaboration, advanced research methodology and higher-level statistical modeling. Advancing a life course health development research agenda in MCH will be foundational to the nation's long-term health.

Unveiling early childhood health inequities by age five through the national neighborhood equity index and the early development instrument.

There is growing public urgency to close equity gaps in health and development by addressing inequities at multiple levels of children's developmental ecosystems. Current measurement strategies obscure the dynamic structural and relational patterns of oppression, adversity, and disadvantage that children can experience in their local intimate developmental ecosystem, as well as the leverage points that are necessary to change them. The purpose of this study is to examine the relationship between a universally available measure of neighborhood socio-economic context, the National Neighborhood Equity Index (NNEI), and a population measure of early child development and well-being, the Early Development Instrument (EDI). Data from a convenience sample of 144,957 kindergarteners in neighborhoods across the US demonstrate that children living in neighborhoods with more equity barriers are more likely to be on vulnerable developmental trajectories than those who reside in neighborhoods without any equity barriers. A multi-dimensional measurement approach that incorporates both the EDI and the NNEI can be used to quantify ethnoracialized patterns of structural disadvantage during critical periods of health development. These measures can inform community action to intervene early in the lifecourse to optimize children's health development trajectories at a population level.

The Emergence of Life Course Intervention Research: Optimizing Health Development and Child Well-Being.

Advances in life course health science, systems biology, and epigenetics suggest that health development can be represented as a trajectory affected by multiple risk and protective factors arrayed in a relational developmental ecosystem across child, family, community, and systems levels. Despite tremendous potential for early life interventions at multiple levels of this ecosystem to improve children's life course health trajectories, this potential has not been fully explored. In fact, Life Course Health Development is a low priority for both health care and research funding. Representing the work of the Life Course Intervention Research Network, this supplement to Pediatrics reports on the first steps taken to define the emerging discipline of life course intervention research. Articles cover the characteristics of life course interventions together with a research framework and core competencies for this work. Topics include family, community, and youth engagement as vital components of grounding this work in health equity, family health development and its measurement, supporting children after prematurity, and new approaches to early childhood mental health. Schools and telehealth are considered innovative platforms for life course interventions, whereas cross-sector partnerships are recognized as key components of interventions to address childhood adversity. Researchers apply a Life Course Health Development lens to juvenile justice issues, including the minimum age law, and consider potential trade-offs whereby "striving" (education and income mobility) can limit "thriving" (health mobility) for people of color and those raised in low-income families. Finally, we present the Australian experience of embedding life course interventions in longitudinal studies.

What Makes an Intervention a Life Course Intervention?

OBJECTIVES: To develop an initial list of characteristics of life course interventions to inform the emerging discipline of life course intervention research. METHODS: The Life Course Intervention Research Network, a collaborative national network of >75 researchers, service providers, community representatives, and thought leaders, considered the principles, characteristics, and utility of life course interventions. After an in-person launch meeting in 2019, the steering committee collaboratively and iteratively developed a list of life course intervention characteristics, incorporating a modified Delphi review process. RESULTS: The Life Course Intervention Research Network identified 12 characteristics of life course interventions. These interventions (1) are aimed at optimizing health trajectories; (2) are developmentally focused, (3) longitudinally focused, and (4) strategically timed; and are (5) designed to address multiple levels of the ecosystem where children are born, live, learn, and grow and (6) vertically, horizontally, and longitudinally integrated to produce a seamless, forward-leaning, health optimizing system. Interventions are designed to (7) support emerging health development capabilities; are (8) collaboratively codesigned by transdisciplinary research teams, including stakeholders; and incorporate (9) family-centered, (10) strengths-based, and (11) antiracist approaches with (12) a focus on health equity. CONCLUSIONS: The intention for this list of characteristics of life course interventions is to provide a starting point for wider discussion and to guide research development. Incorporation of these characteristics into intervention designs may improve emerging health trajectories and move critical developmental processes and pathways back on track, even optimizing them to prevent or reduce adverse outcomes.

Building a Life Course Intervention Research Framework.

OBJECTIVES: To report on first steps toward building a Life Course Intervention Research Framework (LCIRF) to guide researchers studying interventions to improve lifelong health. METHODS: The Life Course Intervention Research Network, a collaborative national network of >75 researchers, service providers, community representatives and thought leaders, participated in an iterative review process. Building on the revised Medical Research Council Guidance for Developing and Evaluating Complex Interventions, they identified 12 additional key models with features for inclusion in the LCIRF, then incorporated the 12 characteristics identified by the Life Course Intervention Research Network as actionable features of Life Course Interventions to produce the new LCIRF. RESULTS: The LCIRF sets out a detailed step-wise approach to intervention development: (1) conceptualization and planning, (2) design, (3) implementation, (4) evaluation, and (5) spreading and scaling of interventions. Each step is infused with life course intervention characteristics including a focus on (1) collaborative codesign (2) health optimization, (3) supporting emerging health development capabilities (4) strategic timing, (5) multilevel approaches, and (6) health equity. Key features include a detailed transdisciplinary knowledge synthesis to inform intervention development; formation of strong partnerships with family, community, and youth representatives in intervention codesign; a means of testing the impact of each intervention on biobehavioral processes underlying emerging health trajectories; and close attention to intervention context. CONCLUSIONS: This first iteration of the LCIRF has been largely expert driven. Next steps will involve widespread partner engagement in framework refinement and further development. Implementation will require changes to the way intervention studies are organized and funded.

Family Health Development in Life Course Research: A Scoping Review of Family Functioning Measures.

BACKGROUND AND OBJECTIVES: Our objective is to identify common family functioning measurement tools and assess their compatibility with family-health development and life-course perspectives. METHODS: Data sources include PubMed, ERIC, CINAHL, Families and Societies Worldwide, PsychInfo, Web of Science, PsychNet, and Health and Psychosocial Instruments. Title and abstract screening and full-text review of articles were conducted by multiple reviewers based on prespecified inclusion criteria. Data extraction focused on features of identified measurements tools, including: (1) name (2) domains of family functioning measured, (3) established psychometric properties, and (4) original context of psychometric evaluation (eg, details about the study sample). RESULTS: Of the 50 measurement tools identified, 94% measured organizational patterns (eg, flexibility, connectedness, or resources), 46% measured belief systems (eg, making meaning of adversity, or positive outlook), and 54% measured communication processes (eg, open emotional sharing, or collaborative problem-solving). CONCLUSIONS: Existing measures of family functioning can aid life-course researchers in understanding family processes as contexts for health and well-being. There also remain opportunities to refine or develop measures of family functioning more compatible with a life-course perspective that assess family processes (1) at various life stages; (2) with various backgrounds, identities, structures, and experiences; and (3) embedded in or impacted by various contexts that may facilitate or hinder family functioning.

Cognitive ability at kindergarten entry and socioeconomic status.

OBJECTIVE: To examine how gradients in socioeconomic status (SES) impact US children's reading and math ability at kindergarten entry and determine the contributions of family background, health, home learning, parenting, and early education factors to those gradients. METHODS: Analysis of 6600 children with cognitive assessments at kindergarten entry from the US Early Childhood Longitudinal Birth Cohort Study. A composite SES measure based on parent's occupation, education, and income was divided into quintiles. Wald F tests assessed bivariate associations between SES and child's cognitive ability and candidate explanatory variables. A decomposition methodology examined mediators of early cognitive gradients. RESULTS: Average reading percentile rankings increased from 34 to 67 across SES quintiles and math from 33 to 70. Children in lower SES quintiles had younger mothers, less frequent parent reading, less home computer use (27%-84%), and fewer books at home (26-114). Parent's supportive interactions, expectations for their child to earn a college degree (57%-96%), and child's preschool attendance (64%-89%) increased across quintiles. Candidate explanatory factors explained just over half the gradients, with family background factors explaining 8% to 13%, health factors 4% to 6%, home learning environment 18%, parenting style/beliefs 14% to 15%, and early education 6% to 7% of the gaps between the lowest versus highest quintiles in reading and math. CONCLUSIONS: Steep social gradients in cognitive outcomes at kindergarten are due to many factors. Findings suggest policies targeting levels of socioeconomic inequality and a range of early childhood interventions are needed to address these disparities.

Hearing difficulties in children with special health care needs.

OBJECTIVE: To determine characteristics of children with special health care needs (CSHCN) with hearing difficulties including patterns of hearing aid use, comorbidity, and social and communication function. METHODS: Bivariate and multivariable analysis of cross-sectional data on 40,723 children aged from birth to 17 years from the 2005-2006 National Survey of Children with Special Health Care Needs, including 1,982 (5%) with parent-reported hearing difficulties. RESULTS: Among CSHCN, 383 (1%) used hearing aids, representing 20% of those with reported hearing difficulties. Odds of hearing aid use increased with age, primary language other than English, and lower income. More than half (58%) of the aided children reported hearing difficulties even with their aid. Among CSHCN with cerebral palsy, 13% had reported hearing difficulties and 3% used hearing aids. Equivalent figures for children with Down syndrome were 24% and 4%, mental retardation/developmental delay 12% and 5%, and autism spectrum disorder 9% and 2%. Overall, two-thirds of CSHCN with hearing difficulties had one or more sensory/developmental comorbidities; CSHCN with both hearing difficulties and a sensory/developmental comorbidity had highest odds of learning difficulties, speaking/communication difficulties, feeling anxious/depressed, acting out/bullying, and difficulty making friends. CSHCN with hearing difficulties alone, or sensory/developmental conditions alone had intermediate odds, after socio-demographic adjustment. CONCLUSIONS: Sensory/developmental comorbidities are common among CSHCN with hearing difficulties, and they are associated with higher odds of poorer social, communication, and educational function. Services for CSHCN must be equipped to address a range of hearing difficulties as well as sensory/developmental comorbidities and to improve social/emotional functioning as well as learning and communication.

A national profile of childhood epilepsy and seizure disorder.

OBJECTIVE: To determine sociodemographics, patterns of comorbidity, and function of US children with reported epilepsy/seizure disorder. METHODS: Bivariate and multivariable cross-sectional analysis of data from the National Survey of Children's Health (2007) on 91 605 children ages birth to 17 years, including 977 children reported by their parents to have been diagnosed with epilepsy/seizure disorder. RESULTS: Estimated lifetime prevalence of epilepsy/seizure disorder was 10.2/1000 (95% confidence interval [CI]: 8.7-11.8) or 1%, and of current reported epilepsy/seizure disorder was 6.3/1000 (95% CI: 4.9-7.8). Epilepsy/seizure disorder prevalence was higher in lower-income families and in older, male children. Children with current reported epilepsy/seizure disorder were significantly more likely than those never diagnosed to experience depression (8% vs 2%), anxiety (17% vs 3%), attention-deficit/hyperactivity disorder (23% vs 6%), conduct problems (16% vs 3%), developmental delay (51% vs 3%), autism/autism spectrum disorder (16% vs 1%), and headaches (14% vs 5%) (all P < .05). They had greater risk of limitation in ability to do things (relative risk: 9.22; 95% CI: 7.56-11.24), repeating a school grade (relative risk: 2.59; CI: 1.52-4.40), poorer social competence and greater parent aggravation, and were at increased risk of having unmet medical and mental health needs. Children with prior but not current seizures largely had intermediate risk. CONCLUSIONS: In a nationally representative sample, children with seizures were at increased risk for mental health, developmental, and physical comorbidities, increasing needs for care coordination and specialized services. Children with reported prior but not current seizures need further study to establish reasons for their higher than expected levels of reported functional limitations.

Patterns of comorbidity, functioning, and service use for US children with ADHD, 2007.

OBJECTIVE: To determine patterns of comorbidity, functioning, and service use for US children with attention-deficit/hyperactivity disorder (ADHD). METHODS: Bivariate and multivariable cross-sectional analyses were conducted on data from the 2007 National Survey of Children's Health on 61 779 children ages 6 to 17 years, including 5028 with ADHD. RESULTS: Parent-reported diagnosed prevalence of ADHD was 8.2%. Children with ADHD were more likely to have other mental health and neurodevelopmental conditions. Parents reported that 46% of children with ADHD had a learning disability versus 5% without ADHD, 27% vs 2% had a conduct disorder, 18% vs 2% anxiety, 14% vs 1% depression, and 12% vs 3% speech problems (all P < .05). Most children with ADHD had at least 1 comorbid disorder: 33% had 1, 16% had 2, and 18% had 3 or more. The risk for having 3 or more comorbidities was 3.8 times higher for poor versus affluent children (30% vs 8%). Children with ADHD had higher odds of activity restriction (odds ratio: 4.14 [95% confidence interval: 3.34-5.15]), school problems (odds ratio: 5.18 [95% confidence interval: 4.47-6.01]), grade repetition, and poor parent-child communication, whereas social competence scores were lower and parent aggravation higher. Functioning declined in a stepwise fashion with increasing numbers of comorbidities, and use of health and educational services and need for care coordination increased. CONCLUSIONS: Clinical management of ADHD must address multiple comorbid conditions and manage a range of adverse functional outcomes. Therapeutic approaches should be responsive to each child's neurodevelopmental profile, tailored to their unique social and family circumstances, and integrated with educational, mental health and social support services.

Improving follow-up to newborn hearing screening: a learning-collaborative experience.

Although approximately 95% of US newborns are now screened for hearing loss at birth, more than half of those who do not pass the screen lack a documented diagnosis. In an effort to improve the quality of the follow-up process, teams from 8 states participated in a breakthrough-series learning collaborative. Teams were trained in the Model for Improvement, a quality-improvement approach that entails setting clear aims, tracking results, identifying proven or promising change strategies, and the use of small-scale, rapid-cycle plan-do-study-act tests of these changes. Parents acted as equal partners with professionals in guiding system improvement. Teams identified promising change strategies including ensuring the correct identification of the primary care provider before discharge from the birthing hospital; obtaining a second contact number for each family before discharge; "scripting" the message given to families when an infant does not pass the initial screening test; and using a "roadmap for families" as a joint communication tool between parents and professionals to demonstrate each family's location on the "diagnostic journey." A learning-collaborative approach to quality improvement can be applied at a state-system level. Participants reported that the collaborative experience allowed them to move beyond a focus on improving their own service to improving connections between services and viewing themselves as part of a larger system of care. Ongoing quality-improvement efforts will require refinement of measures used to assess improvement, development of valid indicators of system performance, and an active role for families at all levels of system improvement.

Accelerating evidence into practice for the benefit of children with early hearing loss.

Over the years, multiple groups have issued recommendations for newborn hearing screening, diagnosis, and intervention. In January 2008, the US Department of Health and Human Services held an invitational workshop at which more than 50 national experts met for 2 days to consider ways to accelerate the movement of evidence-based recommendations into practice. Participants set priorities among existing recommendations, identified areas with the most promise and created a national blueprint to accelerate evidence into practice. Workshop participants adopted the "3T's Roadmap to Transform US Health Care" as the conceptual model for this work and used a modified Delphi process to identify high-priority recommendations in 5 areas (diagnosis, treatment, parental and public awareness, continuous quality improvement, and stewardship). A matrix of responsibility was developed to specify entities that could take action to implement these recommendations. Participants placed a high priority on measurement and recommended improved data-tracking of newborns after screening and creation of a limited set of national indicators to monitor progress toward evidence-based system goals. They also identified a greater role for parents and families in contributing to system transformation and a need for more culturally and linguistically appropriate resources. Targeting infants in the NICU for early testing and creating guidelines and resources for early intervention were additional priorities. Finally, the work group noted the need to create a stewardship function to monitor the progress of the entire system of care, disseminate reports, consider future research directions, and continue to develop critical cross-agency and public-private coordination of activities.

Associations between media use and health in US children.

OBJECTIVE: Television viewing has been associated with poorer health attributes, but relationships between computer use and health are less clear. The aim of this study was to determine associations between TV and computer use, both separately and combined, and health attributes in US children. METHODS: We performed bivariate and multivariate logistic regression analyses of cross-sectional data on 54 863 children ages 6 to 17 years who participated in the National Survey of Children's Health. Key independent variables were TV, computer, and combined media use; outcome variables were 6 measures of health. RESULTS: In models controlling for a wide range of sociodemographic variables, each additional hour of television viewing was associated with greater odds of overweight/obesity (odds ratio [OR] 1.05, 95% confidence interval (95% CI) 1.02-1.08), poorer oral health (OR 1.05, 95% CI 1.02-1.09), social-emotional problems (OR 1.08, 95% CI 1.05-1.11), concern about self-esteem, and lower social competence. Greater computer use was associated only with overweight/obesity (OR 1.04, 95% CI 1.01-1.07). Combined media use showed similar, but weaker, health associations to television viewing alone. Interaction analyses showed that TV viewing was associated with overweight/obesity only for white, not black or Hispanic, children. CONCLUSIONS: TV/video use is associated with a broader range of negative physical and social-emotional health attributes than computer use. Associations between media use and health are modest, but persistent at the population level. TV/video use reduction strategies may lead to improved physical and social-emotional population health. However, reductions in TV viewing may have little effect on overweight/obesity in black or Hispanic children. Mechanisms underlying observed health associations need further study.

Influence of multiple social risks on children's health.

OBJECTIVE: Social risk factors such as growing up in poverty, racial/ethnic minority status, and maternal depression have been associated with poorer health outcomes for children. This study examined the strength of association of 8 social risk factors, both individually and as part of a cumulative social risk index, on parent-reported child health status. METHODS: We performed an analysis of cross-sectional data from the 2003 National Survey of Children's Health, a telephone survey of 102,353 parents of children aged 0 to 17 years. In bivariate and multivariate logistic regression models, 8 social risk factors were tested as independent predictors of 4 parent-reported child health outcomes: global health status, dental health, socioemotional health, and overweight. These risk factors were combined into a categorical "social risk index" ranging from low risk (0 risk factors) to very high risk (> or = 6 risk factors), and risk gradients were examined using linear polynomial testing and multivariate logistic regression. RESULTS: The percentage of children in poorer health increased with the number of social risk factors across all health outcomes. More than half of children had > or = 2 risk factors, and 24% had > or = 4. Low maternal mental health, black or Hispanic race/ethnicity, < 200% of the federal poverty level, low household education, unsafe neighborhoods, and lack of health insurance increased the odds for less than very good child health in adjusted models. CONCLUSIONS: Multiple social risk factors have a cumulative effect on parent-reported child health status across physical and socioemotional domains, demonstrating a very strong risk gradient effect. These findings emphasize the importance of addressing multiple levels of social risk to achieve improvements in child health.

The distraction test: the last word?

OBJECTIVE: Universal Newborn Hearing Screening (UNHS) programmes have been widely implemented, but their costs, benefits and long-term logistics remain to be clearly defined. There are few rigorous evaluations of alternative strategies. In this paper, we evaluate the performance of the distraction test component of the two-tiered Victorian Infant Hearing Screening Program (VIHSP). METHODS: All babies born in the State of Victoria, Australia in 1993 who survived the neonatal period were screened for the presence of risk factors for hearing loss. Those at-risk were referred for Auditory Brainstem Evoked Response (ABR) screening by a professional audiologist. All others were screened by modified distraction test at age 7-9 months. This birth cohort was followed through age 6 for diagnoses of congenital hearing loss resulting in fitting of hearing aids. Estimates of false-positives, false-negatives, sensitivity, specificity and positive predictive values were determined for the distraction test as a population screen. Ages at diagnosis and aid fitting for screen failures with hearing loss were compared with current goals. RESULTS: For targeted (moderate or greater-aided) losses, the distraction test yielded eight (0.02%) documented false-negatives (one severe and seven moderate) and an estimated 4265 (99%) false-positives. Distraction test sensitivity was 65%, specificity 91% and PPV 0.3%. Mean age at diagnosis for distraction test failures across all severities, including mild losses, was 23 (SD 18) months with a mean age at aid fitting of 26 (SD 20) months. CONCLUSIONS: The distraction test screen generated large numbers of false-positives and a significant number of false-negatives, performing particularly poorly with moderate losses. Ages at diagnosis and aid fitting for screen failures were far older than currently accepted goals. There is little evidence that the distraction test can be made to work acceptably as a population-based screen.

Epidemiology of congenital hearing loss in Victoria, Australia.

The aim of this study was to report the incidence, prevalence and clinical characteristics of congenital hearing loss sufficient to require hearing aid fitting in the first 6 years of life for the 1993 birth cohort of the state of Victoria (population 4.4 million), Australia. In 1993, 64,116 infants born in the state of Victoria survived the neonatal period. Subjects included all children with congenital hearing loss for which hearing aids were fitted, at any time up to and including 31 December 1999, when the youngest member of the cohort reached 6 years of age. Data on the degree, type and etiology of hearing loss were available from the Australian Hearing database for all subjects. Sociodemographic and health data were available from the Victorian Infant Hearing Screening Program (VIHSP) and parent questionnaires. The known prevalence of identified congenital hearing loss increased as the cohort aged. By the time the youngest member had reached the age of 6 years, 134 children (78 boys, 56 girls) had been fitted with hearing aids for permanent congenital hearing loss of any degree (2.09/1000). Fifty-four (40%) of these had known mild losses (20-40 dB HL). The prevalence of known moderate or greater loss (> 40 dB HL) was 1.12/1000; the data suggest that over 90% could have been detectable by neonatal hearing screening. A further seven children from the birth cohort were fitted with hearing aids due to acquired forms of hearing loss (0.11/1000). The etiology was known in only 57 (43%) congenital cases, with known non-syndromal genetic causes accounting for 21 (37%) of these. This study reports on the prevalence of congenital hearing loss requiring hearing aid fitting for an entire birth cohort. These data indicate the possible yield from neonatal screening, and hence the likely benefit of such screening. For a large proportion of cases, the etiology remains unknown. These data have implications for health service delivery and illustrate the usefulness of a population database in monitoring the prevalence of congenital hearing loss.