And Middle-Income Countries: Overview of Screening, Prevention, Services, Legislation, and Epidemiology

SUPPLEMENT ARTICLE

Childhood Disability in Low- and Middle-Income Countries: Overview of Screening, Prevention, Services, Legislation, and Epidemiology

Pallab K. Maulik, MD, MSca, Gary L. Darmstadt, MD, MSb

Departments of aMental Health and bInternational Health, Bloomberg School of Public Health, Johns Hopkins University, Baltimore, Maryland

The authors have indicated they have no ﬁnancial relationships relevant to this article to disclose.

ABSTRACT

BACKGROUND. Childhood disability affects millions of children around the world, most of whom are in low- and middle-income countries. Despite the large burden on child development, family life, and economics, research in the area of childhood disability is woefully inadequate, especially from low- and middle-income coun- www.pediatrics.org/cgi/doi/10.1542/ tries. peds.2007-0043B doi:10.1542/peds.2007-0043B OBJECTIVE. The objective of this review was to generate information about current Key Words knowledge on childhood disability in low- and middle-income countries and childhood disability, developing countries, impairment, sense-organ disorders, mental identify gaps to guide future research. retardation, low- and middle-income countries METHODS. Electronic databases (PubMed, Embase, PsycInfo) were searched by using Abbreviations speciﬁc search terms related to childhood disability in developing countries. The LAMI—low- and middle-income Cochrane Library was also searched to identify any similar reviews. Whole texts of RCT—randomized, controlled trial TQ—Ten Questionnaire articles that met study criteria were scrutinized for information regarding research WHO—World Health Organization method, screening tools, epidemiology, disability-related services, legislation, and Accepted for publication Mar 15, 2007 prevention and promotion activities. Quantitative and qualitative information was Address correspondence to Gary L. Darmstadt, collated, and frequency distributions of research parameters were generated. MD, MS, Department of International Health, E8153, Bloomberg School of Public Health, RESULTS. Eighty articles were included in the review (41 from low-income coun- Johns Hopkins University, Baltimore, MD 21205. E-mail: [email protected] tries). Almost 60% of the studies were cross-sectional; case-control, cohort, and PEDIATRICS (ISSN Numbers: Print, 0031-4005; randomized, controlled trials accounted for only 15% of the studies. Of the 80 Online, 1098-4275). Copyright © 2007 by the studies, 66 focused on epidemiologic research. Hearing (26%) and intellectual American Academy of Pediatrics (26%) disabilities were the commonly studied conditions. The Ten Questionnaire was the most commonly used screening tool. Information on speciﬁc interventions, service utilization, and legislation was lacking, and study quality generally was inadequate. Data on outcomes of morbidities, including delivery complications and neonatal and early childhood illness, is particularly lacking.

CONCLUSIONS. With this review we identiﬁed potential gaps in knowledge, especially in the areas of intervention, service utilization, and legislation. Even epidemiologic research was of inadequate quality, and research was lacking on conditions other than hearing and intellectual disabilities. Future researchers should not only address these gaps in current knowledge but also take steps to translate their research into public health policy changes that would affect the lives of children with disabilities in low- and middle-income countries.

PEDIATRICS Volume 120, Supplement 1, July 2007 S1 Downloaded from www.aappublications.org/news by guest on September 26, 2021 NTERNATIONAL EFFORT AND research have led to sub- an intervention for the management of a specific syn- Istantial reductions in the mortality rates of children drome (eg, Prader-Willi syndrome, cri-du-chat syn- Ͻ5 years old1; however, research and progress in the drome, Down syndrome, etc). area of childhood disability has been seriously lagging, particularly in low- and middle-income (LAMI) coun- Search Strategy tries. An estimated 150 million children suffer from Online medical databases were searched by using specific some kind of disability, and most live in the poorest parts search strategies. PubMed was searched by combining of the world.2 Moreover, a majority of these children the Medical Subject Heading (MeSH) terms “disabled suffer the double burden of disability and its associated children,” “developing countries,” “mental retardation,” stigmatization, leading to a marginalized life. The Bella- and “sensation disorders.” The search was limited to in- gio Group on Child Survival called on all international fants, preschool-aged children, and children. Embase was organizations and funding agencies to support child- searched by combining MeSH words “childhood disability,” survival programs and outlined 4 steps: (1) develop “sensation disorders,” “sensory disorders,” “mental defi- worldwide leadership; (2) generate evidence-based prac- ciency,” and “developing countries.” PsycInfo was searched tices; (3) increase country capacity; and (4) implement by combining thesaurus words “developmental disabili- programs that are based on principles of equality and ties,” “mental retardation,” and “sense organ disorders” equity to reach Millennium Development goal 4.3 The with “developing countries” and limiting it to childhood Lancet’s neonatal survival series identified knowledge of (0–12 years). The Cochrane Library was also searched for long-term developmental outcomes as a key public any review on childhood disability with a focus on devel- health gap.4 The Lancet subsequently published a 3-part oping countries. series of articles that explored global indicators and bur- Initially, the abstracts of all relevant articles that den of poor child development,5 risk factors,6 and poten- matched the search terms were screened to identify tial strategies for addressing these problems.7 Thus, the articles that provided information on childhood disabil- importance of child development has been increasingly ity related to screening tools, services, prevention and recognized in recent years. To promote efficient and promotion, legislation, and epidemiology. Electronic effective progress in the introduction of programs to and/or hard copies of studies that were found to provide reduce the burden of childhood neurodevelopmental information on any of these areas were obtained, and a disabilities, we undertook this review to identify gaps in snowballing hand search was performed of reference knowledge regarding the epidemiology, screening meth- lists in relevant articles to identify any other study that ods, prevention, service provision, policies, and legisla- potentially met our inclusion criteria. tion related to childhood disabilities in LAMI countries. More focus was given to relatively newer studies (conducted after 1990) and those that reported on neu- METHODS rocognitive disorders, including motor disabilities. Em- We performed a comprehensive review of available lit- phasis was given to articles that reported overall disabil- erature to identify data on the prevalence of disabilities ity estimates. No attempt was made to search articles and impairments in children Ͻ5 years old in LAMI that focused on specific syndromes associated with any countries. LAMI countries were as defined by the World type of impairment. Mental disability, per se, was not a Bank (2006)8 on the basis of per-capita gross national focus of this review, although intellectual disability was income (in US dollars): low income, $875 and lower; reviewed. Although hearing-, speech-, and vision-re- lower-middle income, $876 to $3465; higher-middle in- lated disabilities were also included in the search and are come, $3466 to $10 725; and high income, $10 726 and reported here, relatively less emphasis was placed on higher. those disabilities, and some articles related to those disabilities were not searched for once electronic and hard Eligibility Criteria copies were found to be unavailable. The abstract from any study from a LAMI country8 that discussed childhood disability was reviewed for possible Data Management inclusion in the study database. There was no limitation Each full article was further screened to judge its rele- to the year or type of study. This was done to cover as vance to the study objectives. Quantitative information much literature as possible from developing countries, pertaining to disability screening tools, services, preven- keeping in mind that research from developing countries tion and promotion, legislation, and epidemiology were is limited. Studies unrelated to childhood disabilities or entered into an electronic database. The income group of based in high-income countries8 were excluded. Empha- the country in which the study was based was deter- sis was placed on articles that provided information on mined according to the current World Bank income research that addressed intellectual, hearing, speech, vi- groups.8 A fifth group of multicountry studies was iden- sion, motor, and neurologic impairment in a broader tified that included Ͼ1 LAMI country. The research sense; less emphasis was placed on studies that assessed method used by each study was coded: cross-sectional

S2 MAULIK, DARMSTADT Downloaded from www.aappublications.org/news by guest on September 26, 2021 studies were coded as 1, case-control studies as 2, cohort (eg, “Research Method Used in Studies Reviewed” and studies as 3, randomized, controlled trials (RCTs) as 4, “Epidemiology”) are further subdivided and discussed and review articles that did not contain original data as separately under each subsection. Community-based ep- 5. The review articles spanned comprehensive reviews idemiologic studies are further subdivided according to and brief commentaries about certain aspects of child- the types of disabilities addressed by the studies, given hood disability in a country. The study settings were also the importance of community-based epidemiologic re- coded: community-based studies were coded as 1, clinic- search for large-scale programs. Both quality of the re- based studies as 2, and special-population– or special- search and important observations made by different school–based studies as 3. When studies used a combi- researchers are highlighted under each section, with an nation of study settings/populations, for the sake of aim at placing the results in the context of the quality of quantitative analysis the higher setting (lower number) the evidence available. was chosen, provided subjects with disability (not controls) were drawn from that setting (eg, a study using Search Profile both community-based [code 1] and clinic-based [code The search strategy is outlined in Fig 1. No reviews were 2] samples was coded as community based). The ratio- identified in the Cochrane database that fulfilled our nale for doing this was that the study population was specific inclusion criteria of studies conducted in devel- more inclusive in community-based studies compared oping countries. The PubMed database search resulted in with that of clinic-based studies, which in turn was more the identification of 148 articles, of which 75 were ini- inclusive than that of special-population and special tially thought to be relevant after examination of the schools. Parameters for screening tools and/or tests used abstracts, and 47 were found to fulfill eligibility criteria for screening, services, prevention and promotion, leg- after review of the full article. The Embase search re- islation, and epidemiology were each coded dichoto- sulted in 172 articles, of which 25 were initially identi- mously as yes or no depending on whether the focus of fied on the basis of their abstract, and 16 were eventually the study was related to any of these topics. A mere selected after reading the whole article. Of the 4 articles mention of the topic in the discussion section was not identified in the PsycInfo database, 3 were found to be considered as being a focus of the study. relevant to our review after close scrutiny. There was Epidemiologic estimates of total disability and disabil- substantial overlap among the 3 databases. Hard copy of ity of neurologic, intellectual, hearing, visual, speech, 1 probable article could not be located.10 Another study and motor function were noted. Qualitative information from the Dominican Republic was not included because on sampling method, use of standardized tools, discus- it was in Spanish.11 Overall, these databases generated 66 sion of bias and confounding, use of appropriate statis- articles, and another 14 were included on the basis of a tical analysis including provision of confidence intervals, and discussion of power/sample-size calculations was also entered into the database. Because the aim of this study was to identify potential gaps in information from LAMI countries, a rigorous qualitative assessment of each study on the basis of established guidelines was not performed while selecting them. The objective was to be less stringent on study quality as part of inclusion criteria and gather more information on the variety of content and range of quality of knowledge available about childhood disability in LAMI countries. A brief synopsis of the studies was included under the areas of focus covered by the article.

Data Analysis The frequency distribution of quantitative data, except the epidemiologic estimates, was tabulated by using Stata 9.9

RESULTS The results section is presented under the headings “Search Proﬁle,” “Study Setting,” “Research Method Used in Studies Reviewed,” “Screening Method,” “Dis- ability-Related Services,” “Prevention and Promotion,” FIGURE 1 “Legislation,” and “Epidemiology.” Some larger sections Flowchart of search strategy.

PEDIATRICS Volume 120, Supplement 1, July 2007 S3 Downloaded from www.aappublications.org/news by guest on September 26, 2021 hand search of the reference lists of each of the articles, Research Methods Used in Studies Reviewed which resulted in a total of 80 articles identified for Table 1 shows that a cross-sectional design was used in in-depth analysis. 59% of the studies, case-control in 6% of the studies, The quantitative and qualitative data are summarized and cohort and RCT designs in 5% of the studies. Almost in Tables 1–6 and Appendices 1 and 2. Key points are 58% of all the cross-sectional studies were conducted in summarized under each relevant subsection outlined low-income countries, and approximately one third was below. conducted in middle-income countries. More than 77% of the studies were community based and used subjects who were chosen from either the population or general Study Setting schools. More than 45% of the 62 community-based Although the review focused on LAMI countries and studies were from low-income countries. Clinic-based thus excluded studies performed in high-income coun- studies accounted for 10% of the studies, and ϳ13% of tries, 2 studies from Bahrain and 1 from Saudi Arabia the studies used subjects who had a specific disability were included because they were older studies that were and selected them from specialty clinics or schools. conducted when neither of these countries was classified as high income. Overall, 41 (51%) studies were from Cross-sectional Studies low-income countries and 22 (28%) were from middle- Among the 47 cross-sectional studies, 36 were commu- income countries. Another 14 (18%) were multicountry nity based. Study populations of children were identified studies that involved 1 or more LAMI countries. Among either through population-based sampling12–25 or individual countries, the largest numbers of studies were schools.26–33 Some studies focused on the parents of chil- from India (n ϭ 12), Bangladesh (n ϭ 7), China (n ϭ 6), dren with disabilities and tried to assess their needs and Jamaica (n ϭ 5), Pakistan and South Africa (n ϭ 4 each), attitudes with respect to disability.34–36 Among the oth- and Ethiopia, Kenya, and Nigeria (n ϭ 3 each). Although ers, 3 studies37–39 were clinic based, with a primary focus 16% of the studies were published before 1991, 38% on the epidemiology and available services for cerebral were published after 2000. A little more than half of all palsy. One group of investigators40 used participants the studies from low-income countries were published from clinics and special institutions, and a control group after 2000. The overall trend has been to shift from more of normal children, to assess maternal risk factors for simple study designs that assess community- and clinic- disability. All 6 of the special-population– or special- based prevalence rates to conduct RCTs to study differ- school–based studies had an epidemiologic focus on the ent interventions. However, there does not seem to be a prevalence, type, and severity of disabilities in the study major change in either the quality of studies or the area population,41 causes of cerebral palsy,42 validation of of focus over the study periods. tools,43 or effect on caregivers.16,44 Most of the studies

(80 ؍ TABLE 1 Proportion of Studies Based on Study Characteristics in Different Income Groups (N Study Characteristics n (%)a Type of Country Low Lower-Middle Higher-Middle High Income, Multiple Income, % Income, % Income, % % Developing, % Research method used Cross-sectional 47 (58.8) 57.5 21.3 10.6 4.3 6.4 Case control 5 (6.3) 40.0 40.0 0.0 20.0 0.0 Cohort 4 (5.0) 100.0 0.0 0.0 0.0 0.0 RCT 4 (5.0) 100.0 0.0 0.0 0.0 0.0 Review 20 (25.0) 20.0 25.0 0.0 0.0 55.0 Study population sampled Community based 62 (77.5) 45.2 25.8 6.5 1.6 21.0 Clinic based 8 (10.0) 75.0 0.0 12.5 0.0 12.5 Special-population/special-school 10 (12.5) 70.0 10.0 0.0 20.0 0.0 based Discussed screening tool(s)/instrument(s) 53 (66.3) 56.6 20.8 7.8 3.8 11.3 Discussed services 32 (40.0) 43.8 31.3 6.3 0.0 18.8 Discussed prevention/promotion 21 (26.3) 47.6 14.3 4.8 0.0 33.3 Discussed legislation 6 (7.5) 33.3 33.3 0.0 0.0 33.3 Study on epidemiology 66 (82.5) 56.1 19.7 7.6 4.6 12.1 Income groups are based on World Bank gross national income/capita: low income indicates $875 or less; lower-middle income, $876 to $3465; higher-middle income, $3466 to $10 725; high income, $10 726 or more. a Percentages may not add up to 100% because of rounding errors.

S4 MAULIK, DARMSTADT Downloaded from www.aappublications.org/news by guest on September 26, 2021 used some kind of sampling framework such as consec- prospective and retrospective clinical data to study etio- utive sampling, randomized sampling, or inclusion of all logic factors for mental retardation. Both clinical and those within a delineated population. A process of ran- laboratory tests were used along with standard tools for domization was used in the sampling stage by many assessing cognitive abilities. The study was conducted researchers.* Most used simple random sampling, over a 41⁄2-year period. Bashir et al52 studied the preva- whereas some studies used a stratified sampling tech- lence of intellectual disability in children. Khan et al55 nique based on various criteria such as type and level of studied a group of children from a cerebral palsy clinic schools27,40 or socioeconomic criteria.20 Only a few stud- over a 3-year period and ascertained their health out- ies discussed both bias and confounding.16,18,20,21,27,37,48 comes. Ninety-two consecutive children were enrolled from the clinic and assessed clinically for physical prob- Case-Control Studies lems; the children were assessed psychologically with Among the 5 case-control studies, 3 examined etiologic standardized tools for different aspects of cognitive and factors.49–51 Matching was used in some of the case- social development. A common drawback of each of control studies.46,49–51 One study49 used medical data and these studies was that none reported on bias, and only 1 a questionnaire prepared for the study to assess the study discussed confounding.53 etiology of mild intellectual disability. No physical examination of the children was conducted, and there was no Randomized, Controlled Trials discussion of bias or confounders. Another study50 was a McConachie et al45 used an RCT design to evaluate the population-based study that used screening methods, effect of 3 types of service-delivery strategies for assisting questionnaires, and standardized definitions in addition mothers of children with cerebral palsy. Children from to matched controls on the basis of certain sociodemo- both rural and urban settings were selected from special graphic characteristics. The authors failed to discuss any clinics and schools. Although the process of randomiza- bias or confounders that may have affected the results. tion was not described in detail, the study included The study focused on perinatal and maternal factors allocation to 3 types of interventions. Participants from a related to intellectual disability. Another community- rural community were divided into 2 groups: (1) a dis- based study46 examined the effect of multiple early child- tance training group in which the parents were taught hood intervention strategies, including nutritional sup- about child development and use of simple tools and aids plementation regimens and neurophysical stimulation to support their children’s development, and (2) a health on children with stunted growth, used standardized advice group wherein the parents were given simple toys tools and sound statistical analysis, and discussed poten- for their children to play with but no special information tial bias, confounders, and other limitations of the study. about child positioning or other techniques. The urban Social integration of children with epilepsy was the community was also divided into 2 groups: (1) a distance area of focus in a study in rural India.47 The study used training group, as described above, and (2) a mother- questionnaires prepared for the research to collect semi- child group in which daily living skills were taught to the qualitative data on causes for poor social integration of mothers by specially trained therapists. Verbal consent of affected children and interviewed parents on causes for the mother was obtained, and detailed clinical assess- nonparticipation of their children in social activities. The ment was performed by a pediatrician. Statistical analy- information was collected across different age groups sis provided confidence intervals and test statistics. The and compared against age- and gender-matched con- authors discussed the implications of the results but did trols. Nonparticipatory observation of the children in not report on any weaknesses of the study design. Two their societies was also done. The researchers discussed other RCTs56,57 studied the effect of zinc supplements bias, confounding, and other methodologic limitations in given to both pregnant women and their infants on level their study and used appropriate statistical analysis. of intellectual development at 13 months of age. Both studies failed to find any significant benefit. On the Cohort Studies contrary, zinc supplements seemed potentially harmful. Among the 4 cohort studies, 3 studied the prevalence of Russell et al58 studied the effect of specific integrated etiologic factors for disabilities,52–54 and the other as- group psychoeducation on families with children with sessed outcome of cerebral palsy.55 Gustavson53 studied disabilities. The parents were taught problem-solving the health outcome of children born to a certain cohort and parenting skills, and they did better compared with of mothers residing in a circumscribed area. The families a group whose families were not taught problem-solving were followed up periodically for 12 years, and health skills, although they were also provided with parenting outcomes, including neonatal health and mortality, skills. were recorded. The children were examined clinically, and congenital disorders were diagnosed. Izuora54 used Reviews The review articles were a mixture of studies that dis- *Refs 20, 25–27, 30, 32, 36, 40, and 45–47. cussed various issues related to childhood disabilities,

PEDIATRICS Volume 120, Supplement 1, July 2007 S5 Downloaded from www.aappublications.org/news by guest on September 26, 2021 such as problems in conducting research in developing modified the Ten Questionnaire (TQ) and added 6 addi- countries,59–61 screening methods,62,63 risk factors and tional questions to identify developmental impairments prevention strategies, including early childhood strate- in children below 2 years of age. They piloted their gies,64–69 and available services.61,67,70–72 None were sys- questionnaire before using it, but no proper reliability or tematic reviews or included critical comments about in- validity study was performed. The TQ, developed as a dividual articles. The review by McPherson and Swart73 part of the International Pilot Study of Severe Childhood was on hearing impairment and provided an overview of Disability,80 was the most commonly used tool to assess prevalence of hearing disability in Sub-Saharan African disability in large populations.24 It was found to have countries; they outlined the etiology for disabilities and good specificity for identifying severe forms of mental research needs in that area. While describing the epide- retardation in the study by Belmont80; however, in an- miology, the researchers subdivided the Sub-Saharan other study,15 it was not found to be a suitable screening region into smaller geographical areas to describe the tool for mild-to-moderate degrees of mental retardation. etiology regionally. The problem of hearing impairment A detailed assessment of the tool was performed by and the role of nonspecialists, especially in developing Thorburn et al,48 who found that the TQ was a good tool countries, was discussed by other researchers.71 Yousef72 for assessing severe disabilities of all types except cogni- outlined available services in different Arab countries, tive disabilities and tended to miss moderate degrees of with a special focus on education. Some reviews61,67–69 intellectual impairment. However, they inferred that the discussed various causes for intellectual disability among TQ identified more severe cases but was limited by it children in developing countries and provided a frame- being just a screening tool that provided little informa- work for implementing preventive strategies to reduce tion on the degree of impairment and the type of ser- the impact. vices required. Thus, in most settings, the TQ needs to be supplemented by another, more detailed assessment, Screening Method including 1 or more disability-specific tools to capture a Approximately two thirds of the studies discussed broader range of disorders and to help identify the de- screening tools or assessment methods, including clinical gree of impairment. investigations, and more than half of those studies were Some other tools were also developed through qual- performed in low-income countries. A multitude of itative research and aimed to measure parents’ attitudes screening tools were used in the studies, but most were toward their children or the level of social integration of related to assessing cognitive dysfunction and intellec- children with epilepsy into an Indian society.43,47 The tual disability. These screening tools were generally stan- focus of researchers in the area of hearing impairment dardized tools or adapted versions of the American As- was to develop a tool that allowed for measurement of sociation on Mental Retardation Adaptive Behavior hearing loss in a community setup that did not have Scale74; the Vineland Adaptive Behavior Scale75; Grif- standardized ambient noise levels or full cooperation of fith’s Scale of Mental Development76; or the Denver the children. Some of the methods that were found Development Screening Test.77 Assessment of hearing useful were conditioned-play audiometry and otoacous- impairment often included use of the Liverpool Field tic emissions/tympanometry13 and the voice test.33 Al- Audiometer, whereas visual impairment was assessed by though the otoacoustic emissions/tympanometry using Snellen’s chart and E-charts. Some researchers showed some promise in a developing-country setup, developed questionnaires for their study but provided both methods required additional testing and refine- inadequate information on psychometric properties of ments to enable the researchers to measure hearing loss the instruments.12,25,30,34,36,47 The instruments gathered more accurately across different levels of hearing impair- information on signs and symptoms of various disor- ment. Other researchers30,34 developed questionnaires ders25 and qualitative information on a child’s social that could be used in the community to identify hearing integration into society,47 attitude of families toward loss, but these instruments needed to be refined. Simi- their disabled children,43,58 hearing ability,30,34 and avail- larly, it was found that the E-test was a simple tool for ability of human resources to provide service for disabled identifying vision impairment in Ͼ32 developing coun- children.36 Some of the researchers provided limited in- tries.81 formation on characteristics of the questionnaires and also compared them to more standard tools.30,34,36 Little is Disability-Related Services known about the development of the questionnaires Forty percent of studies provided some information on except for the Indonesian adaptation of the Vineland disability-related services, and of these, ϳ44% were Adaptive Behavior Scale78 and the scale to measure so- from low-income countries and 38% were from middle- cial integration of children with epilepsy in the Indian income countries. Some country-specific details about context.47 services and needs are provided in Table 3. Table 2 outlines the screening tools that were either Overall, there was a lack of quality research in these validated or adapted by different researchers. Couper79 areas, and only 4 studies conducted RCTs to evaluate

S6 MAULIK, DARMSTADT Downloaded from www.aappublications.org/news by guest on September 26, 2021 TABLE 2 Research on Screening-Tool Validation and/or Adaptation Article Country Screening Tool Key Observations Regarding the Screening Tool Hearing impairment Berg et al13 Bangladesh Conditioned-play audiometry and Although conditioned-play audiometry was a useful screening tool OAE/tympanometry among the older children (aged 6–9 y), OAE/tympanometry was especially useful for identifying hearing impairment among those in the younger group (2–5 y), where full cooperation was not required; it was also beneficial as a second-stage screening tool for the older children; the test-retest reliability ␬ coefficient of OAE/tympanometry was 0.95; however, it did not measure hearing ability per se and only measured other functions related to hearing Gomes and Lichtig34 Brazil Parent-report questionnaire used by Of 33 questions in the questionnaire, 14 had a significant nonprofessionals to assess concordance rate between community workers and the hearing loss researcher; however, the questionnaire failed to distinguish between those who failed the audiological test and those who did not Newton et al30 Kenya Questionnaire designed to collect The questionnaire was completed by teachers, community nurses, information on children’s parents, and caregivers; the questions assessed bilateral hearing behavioral response to sound impairment at 40 dB; validation of the questionnaire was done and communication ability and by using pure-tone audiometry; sensitivity of the questionnaire causes of hearing impairment was 100% when hearing loss was considered at Ͼ40 dB, and specificity was 75%; the negative predictive value was 100%, but the positive predictive value was only 6.75% Prescott et al33 South Africa Voice test A 3-level “voice test” was developed, refined, and standardized, and its validity was assessed against a standardized audiometric test; the specificity of the new test was 95.9% and the sensitivity was 80% in clinical studies; in the classroom-based study, the specificity was 97.8% and sensitivity was 83.3%; however, it failed to detect high-tone or unilateral hearing loss Visual impairment Keeffe et al81 Multiple developing Visual-acuity test card The E test was found to have good sensitivity and specificity (84%– countries 100%) in studies that were conducted across different developed and developing countries Intellectual impairment Serpell23 Multiple developing TQ, Child Disability Questionnaire The TQ and Child Disability Questionnaire were used as screening countries tools, but it was found that discrepancies existed between the screening tools and criteria used by clinicians to diagnose severe intellectual disability in the second phase; information was sought from clinicians involved in the project about their concepts regarding the definition of severe intellectual disability with the aim of developing a common understanding of the problem; behavioral domain was important, and consensus was found on 5 domains, although variations based on characteristics of the clinicians were observed; training, cultural issues, and competence in English played major roles in determining the criteria by which diagnosis was made by the clinicians Stein et al24 Multiple developing TQ The instrument was able to identify mental retardation in the countries community, although severe mental retardation was identified more accurately than mild mental retardation Thorburn et al48 Jamaica TQ Although specificity across all disabilities was ϳ85%, sensitivity was 100% except for severe cognitive disabilities, for which it was 52% because of false-negative moderate cases Tombokan-Runtukahu and Indonesia Indonesian adaptation of the The scale was subjected to qualitative and quantitative analysis Nitko78 Vineland Adaptive Behavior Scale during translation, cross-cultural adaptation, fine-tuning, and data collection; the instrument had comparable psychometric properties to the original version; however, more research is needed before using the instrument in larger settings specific interventions. McConachie et al37,45 found that However, distance training packages had some problems distance training packages along with mother-child with regard to accessibility; mothers staying away from groups were beneficial in improving maternal knowl- the centers cited difficulty in accessing services because edge about disability-related services, reducing maternal of the cost of travel. Some of the common factors that stress, and improving interaction with their children. affected use of disability-related services were distance,

PEDIATRICS Volume 120, Supplement 1, July 2007 S7 Downloaded from www.aappublications.org/news by guest on September 26, 2021 TABLE 2 Continued Article Country Screening Tool Key Observations Regarding the Screening Tool Family perceptions about disability Mutua et al36 Kenya Parents were questioned about 8 Different support opportunities such as health, education, friend, different physical and human husband/wife, religion, acceptance, and employment were resources available in the scored according to expected use and importance; there was a community with a parent- match between expectations and importance for health, friend, appraisal scale religion, and acceptance in a community and home; education and employment were thought to be important but underused Pal and Chaudhury43 India Scale to measure parental A screening tool was validated among mothers of children with adjustment toward the child with epilepsy; the scale was validated in the sample but needed to a disability have more external validation Pal et al47 India Questionnaire developed to assess A questionnaire was developed on the basis of nonparticipatory social integration observation, by disability workers, of children’s activities and their social integration in the villages; the parents reported the reasons for the child not participating in a particular activity OAE indicates otoacoustic emissions.

cost, and disempowerment of women. The efficacy of studies included improving primary health care63,67; in- teaching problem-solving skills to parents was under- creasing immunization coverage to protect against infec- lined in another RCT,58 in which the authors found that tions such as poliomyelitis and meningitis41,54; imple- the parents in the intervention group had a better un- menting programs that provide nutritional supplements derstanding and attitude toward their children. Some such as vitamin A, iron, and zinc66; promoting effective studies have provided insight into the community-based health education programs that highlight the effect of services within certain areas of China and stressed the certain genetic factors in causing different types of im- importance of developing primary and community- pairments; the importance of hypothyroidism and iodine based services and training of personnel.14,61,69,70 Yousef72 deficiencies in causing intellectual impairment53,69,87; in- provided a historical perspective of education-related creasing parental knowledge about available services re- services for children with intellectual disability in Arab lated to different types of disabilities; and improving countries. The importance of adequate centers and staff mother-child interaction.68,72 The importance of avoiding to identify genetic causes of disability was highlighted by iodine deficiency and measures to prevent hypothyroid- the author.17,69 The importance of collaboration between ism, especially within the Indian context, has been high- different professionals working in the area of disabilities lighted by others.65,87 and involvement of semiprofessionals and family in the Two reviews66,68 provided insights into preventive in- process of service delivery was emphasized by others.71,82 terventions. Protein-energy malnutrition and iodine de- The role of families was further highlighted in studies in ficiency were identified as the most important nutri- Lesotho,35 Jamaica,83 and India.47 The importance of tional deficiencies that cause intellectual disability.66 community services that helped in improving commu- Shah68 found that birth trauma, birth asphyxia, and nication and service delivery across different sectors was nutritional deficiencies were the most prevalent causes also stressed.84 for intellectual impairment among south-Asian coun- Three comprehensive reviews,68,85,86 completed over a tries. Provision of skilled care at birth, effective commu- span of 10 years, provided similar recommendations nity-based maternal and child health care services, and such as increasing intersectoral collaboration, involve- adequate nutritional supplementation programs was ment of national and international agencies, developing found to be best suited to alleviate this problem. community-based services, and increasing training of staff as some of the steps for improving disability-related Legislation services. Only 6 studies provided any information on legislation related to childhood disability. Two studies from Chi- Prevention and Promotion na14,69 discussed issues such as strengthening laws that Information about prevention and promotion activities pertain to protection of rights of children with disabili- in the area of childhood disability was reported by 21 ties, banning consanguineous marriage, and making im- (26%) of the 80 studies, 48% of which were from low- munization compulsory within a Chinese perspective. income countries. Strategies identified by various re- Yousef72 highlighted the importance of laws for protect- searchers are outlined in Table 4 and most incorporated ing children with intellectual disabilities and developing techniques applicable to early childhood. Some of the national policies for integrated schooling facilities for prevention and promotion activities outlined in the such children. Nair and Radhakrishnan67 discussed gov-

S8 MAULIK, DARMSTADT Downloaded from www.aappublications.org/news by guest on September 26, 2021 TABLE 3 Key Country-Specific Disability-Related Services and Needs Country Article Observation on Services Bangladesh McConachie et al37 There are outreach centers (rural and urban) in which mothers of children with disabilities can drop in for training in parental skills China Chen and Simeonsson14, Community-based rehabilitation centers provide shelter, medical examination, food, training in Ran et al70, hygiene, skills for daily living, basic education, and vocational training, and employment Sonnander and opportunities; special education schools are present; plans to integrate disability-reducing Claesson69, and Tao61 measures within primary care, increasing public education, increasing training of personnel, improving research, and developing family-oriented services Ethiopia Kello and Gilbert41 Need to improve primary care and maternal and child health care facilities with the active involvement of the government Guatemala Replogle111 Need to develop a screening system within the health service and improve referral services and community awareness about disabilities India Dave et al17, Nair and Need to train more staff who are adept at genetic screening and increase awareness in the Radhakrishnan67, and community about genetic disorders through community-based services; some problems faced Pal et al47 by Integrated Child Development Service and Urban Basic Services are inadequate funds and infrastructure, poorly trained staff, absence of programs for those Ͻ3 y of age, lack of community participation and ownership, and inability to detect cases early in life; some services identified to improve the condition of children with disabilities were (1) development of parent- group meetings and outings to discuss common issues, (2) using drama as a means of interacting with students in class, (3) holding different social events for children with disabilities, and (4) interacting with village councils, teachers, and the elderly and involving them in decision-making Jamaica Thorburn83 Community awareness needs to be improved to correct beliefs about etiology and management Lesotho McConkey et al35,110 The needs identified by parents were involvement of themselves as trainers for future service providers, increased awareness of rights of their children, better understanding by the community of their children’s problems, and more specialists and community workers; primary outcome of the increased awareness in the community had been increased enrollment of children in schools, improved acceptance of the children in daily community activities and sports, identification of income-generating schemes for the affected, ensuring that an interpreter is available at the clinics to help the parents to communicate with the health staff, and increase in membership Mauritius Gopal et al84 Identification of hearing impairment by specialists was within acceptable limits, but there was a need to improve the communication network between specialists and organizations involved in distribution of hearing aids; the role of community workers to improve the network was highlighted Nigeria and Uganda Hartley and Wirz82 The government’s roles are to increase social awareness, increase intersectoral cooperation, and develop community-based services; professionals’ role is to improve cooperation across different levels of expertise, both trained and semitrained, increase awareness, and develop training modules; families should reduce labeling, increase involvement in decision-making, and promote active listening and communication; nongovernmental organizations should involve families in rehabilitation and decision-making and coordinate their activities with others Pakistan Gustavson53 Need to improve maternal health care and screening facilities for genetic risks for disabilities Multiple developing countries Richmond et al85, Shah68, Improvement of services and financing; services should be coordinated; improved training of staff, Simeonsson86, and both in technical and managerial setups; criteria for good services are community-based and Wirz and Lichtig71 primary-care–based services, interdisciplinary interaction, uniform distribution of staff across rural and urban settings, national and international programs tailored to local needs, development of professional and managerial skills at the local level, development of national policies based on a prevention strategy, use of expertise from United Nations bodies wherever required, and development of programs that are not only cost-effective but also easily measurable and evaluated; involvement of family and community in services related to management of disabilities is essential; community-based services are not adequately developed, and use of nonspecialists is limited; services need to be based on epidemiological findings, cultural and definitional norms as accepted in the country, and presence of proper screening tools ernmental policies regarding implementation of preven- were from middle-income countries. Of the 66 studies tive measures, especially those that target girls. The im- that reported on epidemiology, 45 were cross-sectional, portance of policies to reduce iodine deficiency in India 5 were case-control, 4 were cohort, 4 were RCTs, and 8 was outlined by others.65 were reviews. Research methods and selection of study population Epidemiology have been elaborated in earlier sections. Only 8 studies Epidemiology was the focus of 82% of the studies. Of provided some information on all the criteria used to these, 56% were from low-income countries and 27% assess quality (sampling method, use of standardized

PEDIATRICS Volume 120, Supplement 1, July 2007 S9 Downloaded from www.aappublications.org/news by guest on September 26, 2021 TABLE 4 Prevention and Promotion Strategies Primary Level Secondary Level Tertiary Level Increase immunization coverage Screen for genetic disorders Improve mother-child interaction to encourage better bonding and lower negative attitudes Provide iodine, iron, zinc, and vitamin A Screen for neonatal hypothyroidism Provide better education and training for children in supplementation through national need programs Develop school-meal programs Identify intellectual and other disabilities in Use different tools to improve hearing impairment school and the community Improve parenting skills through schemes Increase level of awareness within the such as the Portage guide to home community; teachers to identify teaching impairments Improve antenatal and postnatal care through programs such as Safe Motherhood Share information on birth spacing and harm of consanguineous marriage

tools, discussion of power/sample size, bias and con- that was developed for the study. The questions were founding, and use of appropriate statistical analysis, in- answered by the head of the household and not corrob- cluding confidence intervals for estimates).20,21,27,37,48,56–58 orated by interviewing the affected person. The study Even among these 8 studies, detailed information on included both children and adults; the prevalence of sample-size estimation was provided by only 2 research disability in male children was 0.4%, and that in female groups.56,58 It is possible that the authors of these studies children was 0.3%. had performed these calculations but did not report Sauvey et al22 also used a door-to-door survey of a them in the articles that were reviewed. Some studies rural population in Nepal and asked the respondents discussed specific issues related to different biases such as about the presence of any member in the household selection41,88 and information20,27,37,46,48 bias. These studies aged Ͻ20 years who had a disability. They were also not only reported possible sources of bias but also dis- asked to name the type of disability. This simple, 2-ques- cussed the strengths of the studies in their ability to tion survey gave an overall prevalence of 1%, with the reduce selection bias by randomization of the selection majority (89%) affected by a motor disability. process or by using trained interviewers who applied Using a random, stratified sample of rural households standard instruments and performed reliability checks to in Ethiopia, it was found that there was a 3.1% preva- control for information bias. Confounding and statistical lence of disability there.91 Chen and Simeonsson,14 in adjustment for it using regression or stratification tech- their study in China, also used a house-to-house survey niques were detailed by some researchers.20,21,27,40,46 Hart- technique, but there was no information provided on ley89 reported extremely high prevalence rates for all the type of questionnaire used. The study was part of a types of impairments. However, the study failed to pro- national study and also provided estimates for specific vide information on sampling method, bias, confound- disabilities. Intellectual disability had the highest preva- ing, and power of the study. Hartley also used a modified lence at 1.8%. version of the TQ that was not properly validated. All The studies in Jamaica92 and South Africa,79 used a these drawbacks made it difficult to correlate the high 2-stage screening method, applying a standardized tool estimates the author obtained with other studies. There such as the TQ in the first stage and an evaluation was wide variation in the sample size of the studies, protocol for those who screened positive in the second ranging between 30 and 550 000. stage. Although Paul et al92 found that intellectual disability had the highest prevalence at 8.1%, Couper79 Community-Based Studies found that among children with disability, the most Key information about some of the community-based common were neurocognitive and hearing disabilities. epidemiologic studies is provided in Table 5. Natale et al20 studied a specific population group in Overall Disabilities India that comprised the 2 lowest income strata of the Eight studies provided estimates of overall disability population. The study included children aged 2 to 9 in the community: 0.4%,12 1%,22 1.8%,90 2.7%,14 years and used an adapted Tamil version of the TQ; the 3.1%,91 6.0%,79 9.4%,92 and 12.7%.20 All 8 studies used highest prevalence of disability was among the 2-year- a cross-sectional study design. olds (26%) followed by the 7- to 9-year-olds (15%) and Al-Ansari12 used a door-to-door household-survey 3- to 6-year-olds (9%). The authors also found that technique in Bahrain and administered a questionnaire disability prevalence was greater among the lower of the

S10 MAULIK, DARMSTADT Downloaded from www.aappublications.org/news by guest on September 26, 2021 TABLE 5 Community-Based Epidemiological Studies Article Country Research Design Screening Tool Epidemiology Prevalence of All Disability, % All disabilities al-Ansari12 Bahrain Cross-sectional household Questionnaire on the Approximately 4.5% (2672) of the households 0.4 survey pattern of US in Bahrain were sampled using a Household Survey questionnaire similar to the US Household Survey; total population was 11 521, of which 5938 were children and adolescents (0–19 y); questions were related to type and cause of disability; the questions were answered by the head-of-household, and the disabled person was not interviewed; intellectual disability was common, and birth trauma and infections were common causes Biritwum et al90 Ghana Cross-sectional study Household-survey Children aged 0–15 y (N ϭ 2556) were 1.8 questionnaire included in the study; disability varied according to age (1–5 y [1.4%], 6–9 y [1.7%], 10–15 y [0.4%]); inadequate immunization, especially for diseases such as rubella and measles, was 1 of the most common causes of disability, and the most common type was hearing and speech problems, found in 26% of the children with disability Chen and Simeonsson14 China Cross-sectional None The prevalence of any disability was 2.9% 2.7 population-based (boys) and 2.5% (girls) (N ϭ 12 242); the survey over 29 causes for disability were unknown provinces to assess (47.2%), prenatal causes such as infections, disability consanguineous marriage, inherited disease, drugs, and medicines (20.9%), perinatal birth-related complications (2.5%), and postnatal causes such as infections, malnutrition, tumors, and accidents (29.3%); among the different types of disabilities, 66% had intellectual disability Couper79 South Africa Cross-sectional study Modiﬁed TQ Children Ͻ10yofage(N ϭ 2036) were 6.0 included and initially screened for any type of disability using the screening questionnaire; those who screened positive were further assessed by the rehabilitation specialists; neurocognitive (4.7%) and speech and hearing (2.0%– 2.4%) disabilities were the most prevalent Natale et al20 India Cross-sectional study Tamil version of TQ Two groups of families in the lowest 2 12.7 economic classes were studied to assess prevalence of disability in 2- to 9-y-old children (N ϭ 640); only 1 child per family was selected; the number of families in the 2 social strata were approximately equivalent; the mean age of the children was 5 y, and ϳ50% were boys; although 17.2% of families in the lowest strata had a child with disability, 8.4% in the next lowest group had a child with disability; disability varied across age groups, and it was 26% in 2-y-olds, 9% in 3- to 6-y-olds, and 15% in 7- to 9-y-olds; ϳ57% of the disabled children were boys; only speech- related disability varied signiﬁcantly between the 3 age groups, with the highest prevalence seen in the 0- to 2-y- old group

PEDIATRICS Volume 120, Supplement 1, July 2007 S11 Downloaded from www.aappublications.org/news by guest on September 26, 2021 TABLE 5 Continued Article Country Research Design Screening Tool Epidemiology Prevalence of All Disability, % Paul et al92 Jamaica Cross-sectional house-to- TQ Community workers initially screened 2- to 9.4 house survey 9-y-olds (N ϭ 5468) by using the TQ; those who screened positive and 8% of those who screened negative were further assessed by using a protocol developed for this research; of 193 children with disabilities, mild disability was prevalent in 6.9%, moderate in 1.9%, and severe in 0.56%; although 70% had 1 disability, almost 30% had Ն2 disabilities; a majority of the causes of disability were unknown; the prevalence of intellectual disability was 8.1% Sauvey et al22 Nepal Cross-sectional survey of None Households over 24 rural development 1.0 rural population committees (N ϭ 28 376) were asked 2 questions about the presence of anyone with a disability in the household aged Ͻ20 y and the type of disability; the interview was supervised by surveyors; half of the population surveyed was female; 829 children and adolescents were identified; among those with disability, the male/female ratio was 3:2; the prevalence across the different communities varied between 0.4% and 6.2%; the most common disability was motor (89%) followed by speech (22%), vision (13%), hearing (8%), and learning (6%) disability Tamrat et al91 Ethiopia Cross-sectional household TQ Houses were selected on the basis of random 3.1 assessment stratification performed on the basis of rural or urban setting; although the survey assessed disability across all age groups, children aged 5–14 y (N ϭ 1628) accounted for ϳ39% of those assessed Hearing disabilities Bastos et al26 Bolivia Cross-sectional study Electronic instrument Schoolchildren from 1 urban and 1 rural 3.0 to assess hearing district were chosen to assess hearing impairment; 3 urban and 5 rural schools were chosen (N ϭ 854); the children were between 6 and 16 y old, with about half being boys; bilateral loss was 10.5% in urban schools and 4.7% in rural schools; impairment increased with age and was more common in urban girls than boys (approximately, girls/boys ϭ 5:3), although no difference was seen in the rural population; middle-ear infection was common Chen and Simeonsson14 China Cross-sectional None Children from 29 provinces were assessed 0.4 population-based (N ϭ 12 242); half of the cases had survey unknown etiology, and other common causes were infections, trauma, consanguineous marriage, congenital, etc Gomes and Lichtig34 Brazil Cross-sectional study Parent-report Respondents included parents of children 9.0 questionnaire aged 3–6 y; the children were given an used by nonpro- audiometric assessment (N ϭ 133); fessionals to conductive deafness of varying intensities assess hearing loss was the main type of deafness identified and audiometry

S12 MAULIK, DARMSTADT Downloaded from www.aappublications.org/news by guest on September 26, 2021 TABLE 5 Continued Article Country Research Design Screening Tool Epidemiology Prevalence of All Disability, % Hartley89 Uganda Cross-sectional study Verbal communi- Among those who responded to the 19.7 cation question- questionnaire (N ϭ 1041), 57% were boys; naire adapted almost half the children with some from the TQ disability had speech problems (49.4%) Hatcher et al27 Kenya Cross-sectional study Liverpool field Primary-school children from 57 schools were 5.6 audiometer included in the study (N ϭ 5368); age ranged from 5 to 21 y (53% were 10–14 y); besides questions related to socioeconomic status, the children were physically examined, and hearing was assessed by using an audiometer; wax in the ear was the most common cause (8.6%) Kirkpatrick et al28 Nepal Cross-sectional study Liverpool field Children from 4 primary schools were 7.0 audiometer screened (N ϭ 309); the initial screening was at 30 dB, and those who failed the test were rescreened at the same frequency level as well as at higher frequencies; those with confirmed hearing impairment were examined clinically Lyn et al29 Jamaica Cross-sectional study Tympanometry and Children from 27 public and 5 private schools 4.9 pure-tone were screened; of the 2202 children, 1047 audiogram were boys; the ages ranged from 5 to 7 y. Initial screening was by pure-tone audiometry and tympanometry, followed by clinical examination for those who failed the first screening; wax in the ear was the most common cause of hearing impairment McPherson and Swart73 Sub-Saharan Africa Review Liverpool field Studies involved population-based surveys 0.27–13.5 audiometry and school-based surveys; the sample sizes varied; the prevalence of deafness and some individual population characteristics in the different countries were 0.27% (Gambian children aged 2–10 y from rural population), 13.5% (Nigerian schoolchildren), 0.4% (Sierra Leone, population-based survey of children aged 5–15 y), 2.0% (Angolan schoolchildren), 3.3% (Zimbabwean schoolchildren), 2.2% (Kenyan schoolchildren), 3.0% (Tanzania schoolchildren), 1.0% (schoolchildren in Swaziland), and 7.5%–9.2% (South African schoolchildren); the most common etiologies were meningitis, measles, maternal rubella, febrile illnesses, genetic causes, and a large proportion of unknown etiology Newton et al30 Kenya Cross-sectional study Specially designed Nursery grade–aged children who belonged 1.7 questionnaire; to 6 districts were screened (N ϭ 757); the pure-tone schools were selected randomly; the audiometry questions assessed bilateral hearing impairment at 40 dB; the respondents were school teachers, parents, caregivers, and community nurses at maternal and child health clinics; the type of respondent was randomly selected in each district, and the parents/caregivers accompanying the child were questioned while attending a clinic; the mean age of the children was 5.7 y

PEDIATRICS Volume 120, Supplement 1, July 2007 S13 Downloaded from www.aappublications.org/news by guest on September 26, 2021 TABLE 5 Continued Article Country Research Design Screening Tool Epidemiology Prevalence of All Disability, % Olusanya31 Nigeria Cross-sectional study Tympanometry and Schoolchildren were chosen through a 8.9 pure-tone process of randomization and evaluated audiogram for hearing impairment by using screening tools; ages ranged from 4.5 to 10 y, and there were 190 girls and 169 boys (N ϭ 359); educational performance was also noted; high-frequency hearing loss was common, with otitis media and unconjugated hyperbilirubinemia as common causes Thorburn et al48 Jamaica Cross-sectional study TQ, medical assess- Initial door-to-door survey using the TQ was 0.4 ment form, followed by clinical examination of the psychological positive cases and a selection of normal assessment cases; community workers gathered data; procedure children were 2–9 y old (N ϭ 5478) Intellectual disabilities Bashir et al52 Pakistan Prospective cohort study Wechsler Intelligence Pregnant women were registered at an earlier 6.2 Scale for Children, period of time, and baseline data were Griffith’s Mental collected about them; once their children Development reached 4–6 y of age, they were included Scale, TQ in the study and intellectual capacity was ascertained (N ϭ 649); the children were evaluated by using standardized tools and by physicians; blood tests were conducted to assess metabolic causes; the highest prevalence of mild intellectual disability was in the periurban and urban slum areas Chen and Simeonsson14 China Cross-sectional study None 29 provinces were included (N ϭ 12 242); the 1.8 common causes for intellectual disability were unknown (42.9%), genetic (13.9%), neurologic infections (7.8%), malnutrition (6.8%), pregnancy-related complications (6.6%), psychosocial factors (4.8%), and brain trauma (2.3%) Christianson et al15 South Africa Cross-sectional study TQ, Griffith’s Scale of The household survey included 2- to 9-y-old 3.6 Mental Devel- children from 8 villages (N ϭ 6692); there opment, visual was a 2-phase screening; initial screening and auditory involved using the TQ, followed by a clinical assess- pediatric assessment using Griffith’s Scale ment measures and other visual and auditory assessments; intellectual disability of a severe type was present in 0.6% and mild type in 2.9%; Ͼ60% were boys; although the most common cause for intellectual disability was congenital disorders, 60.5% were of unknown etiology; the most common complications were epilepsy (15.5%), cerebral palsy (8.4%), and auditory disability (7.1%) Dave et al17 India Cross-sectional study Screening tools to A community (N ϭ 550 000) was screened, 0.09 assess genetic and cases were referred to the genetic problems; counseling clinic for confirmation; among instruments to genetic causes, the most common were measure IQ Down syndrome (64%) and metabolic disorders (23%); environmental causes included pregnancy-related complications such as infections (9.0%), low birth weight (8.6%), and birth asphyxia (8.4%); consanguineous marriage was common

S14 MAULIK, DARMSTADT Downloaded from www.aappublications.org/news by guest on September 26, 2021 TABLE 5 Continued Article Country Research Design Screening Tool Epidemiology Prevalence of All Disability, % Durkin et al18 Pakistan Cross-sectional study TQ, Stanford Binet A 2-phase cluster sampling of houses was 3.6 Intelligence Test performed, and all children between 2 and 9 y old within the selected community were included (N ϭ 6365); a little over half were boys; more than half of those with serious impairment had other disabilities too; a higher prevalence was seen in those in a rural population, with mothers having less education, from consanguineous marriage, with history of goiter in mother or child, with poor antenatal and postnatal care, with low immunization, and with perinatal complications such as injuries and infections Gustavson53 Pakistan 12-y cohort study None All pregnant women within a specified period 2.8 and residing in 4 selected urban and rural slum areas were monitored from their 5th month of pregnancy; the children were closely followed up from birth until the age of 12 y (N ϭ 1476); the children were examined every third month up to the age of 6 y and subsequently twice per year until the age of 12 y by pediatricians, psychologists, and social workers; prevalence of mild mental retardation was 6.2%, and that of severe mental retardation was 1.1%; serious birth defects were present in 5.6%, the most common being neural tube defects; psychomotor development was more delayed among the poor (mean time to walk: 15 mo) compared to the rich (mean time to walk: 12 mo); prenatal and postnatal factors accounted for 50% of the causes of mild mental retardation Hartley89 Uganda Cross-sectional study Modified TQ Among those who responded to the 18.3 questionnaire, 57% were boys; within each type of disability, verbal communication was affected; overall, almost half of the children had some form of problem (N ϭ 1041) Qi-hua et al50 China Matched case control Denver Develop- Children (Ͻ14 y) who lived in an urban area 0.8 ment Screening were included in the study (N ϭ 7150); Tool, Good- Ͼ50% were boys; those who screened enough’s Draw a positive on the screening tools were Picture test, clinically assessed; the prevalence Gesell’s Develop- increased with age, reaching a peak of mental Test, 1.1% in the 10- to 14-y-old group; there Weschler Intelli- were no gender differences; of the gence Scale for identified cases, mild cases were most Children-Revised common (62.5%), followed by moderate (28.6%) and severe (8.9%); the prevalence was higher in the poor, those with parents with lower education, those with family history of alcoholism, those with increased age of the mother, and those with a previous history of a child with mental retardation; 4 age/gender/residential- area–matched controls were selected for each case, and the risk factors were assessed; perinatal factors such as maternal

PEDIATRICS Volume 120, Supplement 1, July 2007 S15 Downloaded from www.aappublications.org/news by guest on September 26, 2021 TABLE 5 Continued Article Country Research Design Screening Tool Epidemiology Prevalence of All Disability, % viral infection, low birth weight, birth asphyxia, use of drugs, past history of seizures after birth, brain injury, malnutrition, and deficient preschool education were some of the common factors with Ͼ4 times higher relative risks asphyxia, use of drugs, past history of seizures after birth, brain injury, malnutrition, and deficient preschool education were some of the common factors with Ͼ4 times higher relative risks Stein et al24 Multiple developing 2-stage multicountry TQ A 2-stage survey was used to assess the rates 0.5–4.0 countries cross-sectional survey of disability in 10 different countries (N ϭ 8557); age of the children ranged from 3 to 9 y; initial door-to-door survey using TQs was followed by clinical assessment of positive cases; rates for severe mental retardation varied from 5 in 1000 in the Philippines to 40.3 in 1000 in India; other rates were 16.2 in 1000 (Bangladesh), 5.2 in 1000 (Sri Lanka), 11.2 in 1000 (Malaysia), 15.1 in 1000 (Pakistan), 6.7 in 1000 (Brazil), and 5.3 in 1000 (Zambia); the prevalences of mild mental retardation were 138 in 1000 (Bangladesh), 61 in 1000 (Brazil), 18 in 1000 (India), 9 in 1000 (Malaysia), 21 in 1000 (Pakistan), 4 in 1000 (Philippines), 7 in 1000 (Sri Lanka), and 30 in 1000 (Zambia); in Malaysia, the most common reason for intellectual disability was perinatal factors; in Pakistan, the most common were genetic and prenatal causes; both mild and severe mental retardation was more common in boys; severe mental retardation was more common among the poor, and consanguinity was a major cause; movement disorders, sensory deficits, and seizures were most common; mild mental retardation was often not recognized by the mother Tekle-Haimanot et al25 Ethiopia Cross-sectional survey Questionnaires on The study involved a door-to-door survey of 0.2 socioeconomic Ͼ60 000 rural and urban populations status, general (ϳ35 000 children aged 0–19 y) in Bujatira; medical, lay interviewers from the villages were psychiatric, and trained; a medical officer was also trained neurologic in neurology; initial screening led to disorders identification of persons with physical or mental disabilities; trained medical officers reinterviewed some subjects for validation; those with probable neurologic problems were screened further by using a detailed neurologic questionnaire and clinical examination and provided treatment, if required; severe mental retardation varied across age groups (0.17% [0–4 y], 0.18% [5–9 y], and 0.31% [10–14 y]); consanguinity was associated with higher rates of all problems Thorburn et al48 Jamaica Cross-sectional study TQ, medical Initial door-to-door survey using the TQ was 1.7 assessment form, followed by clinical examination of the psychological positive cases and a selection of normal assessment cases; community workers gathered data; procedure children were 2–9 y old (N ϭ 5478)

S16 MAULIK, DARMSTADT Downloaded from www.aappublications.org/news by guest on September 26, 2021 2 strata. They commented that the higher estimates in of the mild cases had unknown etiology, 28% were a their study were most likely a result of inadequate val- result of postnatal causes and the remaining resulted idation of their instrument. from prenatal causes. The most common causes for se- In Ghana, researchers90 found that in their sample of vere mental retardation were congenital problems such children (Ͻ15 years), the overall disability rate was as Down syndrome, consanguineous marriage, and birth 1.8% and disability was highest among the 6- to 9-year- trauma. Shah68 reviewed intellectual disabilities in 5 old group. Inadequate immunization, especially against south-Asian countries and reported a prevalence be- measles, meningitis, rubella, and poliomyelitis, were im- tween 0.5% and 1.5%. The most common causes were portant causes for disability. Reviews59,85 highlighted the birth asphyxia and trauma, intrauterine growth retarda- importance of epidemiologic issues such as standard def- tion, infection, malnutrition, iodine deficiency, iron de- initions, information on different childhood morbidity ficiency, neonatal jaundice, genetic disorders, and met- and mortality indicators, and different risk factors for abolic disorders. The neonatal period was extremely disability in LAMI countries. vulnerable. Another review69 reported intellectual disability in ϳ2% of the Chinese population, with a slightly Hearing Disabilities higher male predominance. Iodine deficiency, especially Among studies that used a cross-sectional design, in the hilly regions, was found to be prevalent. Tao61 also hearing impairment was the most frequently studied reviewed intellectual disability in China and reported a disability; prevalence estimates ranged from 0.4%14,48 to prevalence of mental retardation between 0.1% and 19.7%.89 Higher prevalence rates were generally ob- 0.8%, with higher prevalence in rural areas. Perinatal tained in studies on schoolchildren compared with non– factors associated with birth trauma, congenital factors, school-based community studies except for the study by and maternal infections were some of the factors they Hartley,89 which suffered from poor method and failed to identified as being associated with intellectual disability. control for bias and confounders and used a nonvali- dated adaptation of the TQ. In a review on hearing Visual Disabilities impairment in Sub-Saharan African countries,73 it was Visual impairment varied between 0.1%14 and found that prevalence rates varied across countries from 12.5%.89 An Indian study21 found a prevalence of 9.2% 0.3% in rural Gambian children to 13.5% among and used a vision-specific LV Prasad Functional Vision schoolchildren in Nigeria. The sample sizes varied across Questionnaire in contrast to a more generic question- countries. The authors found that the most common naire such as the TQ used by others.48,92 A 2-stage design etiologies were meningitis, measles, maternal rubella, with an initial assessment by a trained community febrile illnesses, and genetic causes; there was a large worker and a confirmatory assessment by a specialist proportion of unknown etiology. The need for more was a method often used in studies that reported visual epidemiologic studies, especially community-based sur- impairment. veys, studies on cultural healing practices, use of systematic research methods, standard definitions to define Motor Disabilities hearing impairment, and use of good instruments to Motor disability was reported by 5 studies.14,25,48,89,92 assess hearing loss, was emphasized. The rates generally varied between 0.1%48 and 0.4%92 Intellectual Disabilities except for 1 study,89 which reported a rate of 62.2%. All The prevalence of intellectual disability varied from the studies except the study by Chen and Simeonsson14 0.09%17 to 18.3%.89 The large variation could be a result used a 2-stage design. of sampling framework, degree to which confounders and biases were accounted for in the study, and use of Speech Disabilities reliable and valid tools. A multicountry, 2-stage study Speech or neurologic disabilities were reported in design that included the TQ24 found that prevalence of only a few studies. Two were based on the same study intellectual disability varied according to severity across population in Jamaica.48,92 The others were performed in countries. For severe mental retardation, the rates varied Uganda,89 South Africa,79 and Ghana.90 The rates re- from 5 in 1000 in the Philippines to 40.3 in 1000 in ported in the studies from Jamaica were 0.2% for neu- India; and for mild mental retardation, prevalence varied rologic disorders and 1.4% for speech disability. Hart- from 4 in 1000 in the Philippines to 138 in 1000 in ley89 reported a verbal communication problem in Bangladesh. Among community-based studies, 1 case- 49.4% of the population. However, the criteria for de- control study50 reported an intellectual disability rate of fining verbal communication problems were not clear. 0.8%, with 62.5% of the cases falling in the mild area of The study from South Africa79 reported neurologic dis- the spectrum. Cohort studies52,53 reported intellectual ability in 4.7% of the population and included both disability to have a prevalence of 2.8%, with mild men- epilepsy and perceptual problems other than vision and tal retardation having a prevalence of 6.2% and severe hearing. They also reported speech problems in 2.4% of mental retardation a prevalence of 1.1%. Although half the population. They confirmed impairment levels on

PEDIATRICS Volume 120, Supplement 1, July 2007 S17 Downloaded from www.aappublications.org/news by guest on September 26, 2021 the basis of assessments made by specialists on those affected 73% of the 1000 children assessed in the study, who screened positive. visual impairment affected 41% and epilepsy 32% of the children. Another study40 included children with 3 types Clinic-Based Studies of impairment (visual, auditory, and intellectual) in ad- One old study from east Africa examined intellectual dition to a normal cohort. They studied the maternal risk and speech disability, but it was of poor quality.93 More factors associated with disability and found that mater- recently, 4 studies focused on children with cerebral nal age of Ͻ16 or Ͼ30 years and multiparity were some palsy.37–39,45 Two studies38,39 found that spastic diplegia of the maternal risks associated with the different im- was the most common type of cerebral palsy. Associated pairments. Illiteracy, unemployment, and consanguinity visual defect was present in 54% of the children assessed were other associated factors. The authors of a case- by Bhatia and Joseph,39 but the parents were unaware of control study49 found that prenatal causes were respon- the problem. In an RCT and a follow-up study, McCo- sible for 39% of the cases of mild mental retardation, nachie et al37,45 evaluated 3 different types of service- and consanguinity, illiteracy, and family history of men- related interventions for improving the condition of tal retardation were associated risk factors. A case-con- such children in rural and urban settings. Both these trol design was used to assess the etiology of cerebral studies are discussed earlier in this article. Follow-up was palsy, mental retardation, and visual and hearing im- found to be affected primarily by 2 factors: male gender pairment in an Afghan clinic.51 High rates of consanguin- of the child and the parents being less adapted to their ity and lack of universal and comprehensive antenatal children’s condition. Higher level of education and being care resulting from lack of accessibility, inadequate ser- from an urban community also predicted better out- vices, and illiteracy were some of the underlying causes come. The RCT showed that the mother-child group, of the impairments. which provided the most intensive package, benefited Four studies looked at the impact of children with the most, but outreach interventions were also effective. disabilities on the family.16,43,44,58 All but 1 of the studies58 One study47 divided 88 children with epilepsy into 5 used a cross-sectional design and interviewed parents of groups and compared them with controls to look for children with disabilities regarding the effect on them social integration. School attendance and social interac- both psychologically and financially. Negative attitudes tion were more severely impaired among girls, and the toward their children, high expressed emotion, and con- most common determinants of integration of these chil- cern regarding the effect of the child’s illness on the dren were societal and parental attitudes. A cohort overall functioning of the family were found in 2 stud- study54 was conducted over a 4-year period and found ies.16,43 All the studies showed that parents wanted more that the most common causes were acquired (44%), information regarding available professional services, job congenital (33%), and idiopathic (23%). Although the opportunities, education, and financial support. Another most common congenital cause was Down syndrome, study41 found that vitamin A deficiency and measles the most common acquired causes were birth trauma were the most common causes of blindness in 50% of and neonatal jaundice (19.5%). Some of the early child- the children in a school for the blind. Avoidable causes hood preventive strategies highlighted in the authors’ were identified in 68% of the cases. discussion were immunization, chromosomal screening during the antenatal period, prevention of malnutrition, DISCUSSION and better antenatal care. This study is, to our knowledge, the first attempt to review research on childhood disability from LAMI Special-Population or Special-School–Based Studies countries. The aim of the study was to identify the gaps Two of the special-population–based studies were of in knowledge that could be addressed by future research. children with cerebral palsy.42,55 Both studies had a Overall, the results show that researchers in LAMI higher number of boys. Spastic diplegia and quadriplegia countries have primarily focused on the epidemiology of were the most common types of cerebral palsy. Adverse childhood disability using cross-sectional community- outcomes (eg, malnutrition in children suffering from based studies. Few studies used robust RCT designs, cerebral palsy) were common. In the 3-year cohort there is much variation in the tools used to study the study55 in Bangladesh, 93% of the children were suffer- problems, and few researchers have addressed issues ing from malnutrition per Western standards, with more such as confounding, bias, sample size, and use of ap- than double the rate among rural compared with urban propriate statistics. Thus, if one were to apply critical children. The case fatality rate was 4% among urban measures of quality, many of the studies would not live children and 14% among rural children with cerebral up to acceptable standards of evidence-based scientific palsy. The other study42 found that more than half of the research. We were able to identify potential areas of children in the study cohort in India were suffering from future research, especially in the areas of prevention and malnutrition. The authors also found that although in- promotion, services, and legislation in addition to the tellectual disability was the most common disability and need for more robust studies on epidemiology.

S18 MAULIK, DARMSTADT Downloaded from www.aappublications.org/news by guest on September 26, 2021 Although every effort was made to conduct a search steps in defining disabilities and developing tools to as- using a broad search strategy to identify all relevant sess the level of disability as part of its disability-related research, ours was not a systematic review; hence, the work. A recent concept article95 by the WHO on disabil- scope of the search had limitations. Thus, it is possible ity and rehabilitation reported that there are an esti- that some pertinent studies may not have been included mated 600 million disabled individuals in the world, of in this review, although the initial search results were whom 200 million are children. Poverty was the major supplemented by additional reports gleaned from the determinant of disability, which was most common in references of each article. Including only studies in the LAMI countries. Acknowledging the gravity of the situ- English language implies that any non–English-language ation, the 58th World Health Assembly96 came up with a publications have been missed, although they were in- resolution that urged member states to develop their cluded if an abstract was available in English. This also knowledge base about disability, implement evidence- means that this review identified literature from coun- based programs for rehabilitation, and formulate policies tries that disseminate scientific research primarily in En- and legislation to strengthen the rights of individuals glish; thus, the countries listed in this review may reflect who are living with disabilities. Although some knowl- that bias. Also, a number of articles related to specific edge is available about disability-related issues among syndromes might have been missed by not searching adults, the same is not true for childhood disability, for them because it was not within our scope of re- especially within LAMI countries, in which both knowl- search. The disability-causing conditions examined in edge and activities directed toward childhood disabilities this study included neurologic, intellectual, hearing, vi- are severely limited. sual, speech, and motor disabilities. However, there are Table 6 highlights some of the gaps in knowledge other conditions that could be included such as severe identified through this review and suggests some recom- mental disorders and severe neurologic disorders. Future mendations for future endeavors. Often, the recommen- research could use a broader definition and include spe- dations to overcome potential gaps in knowledge are cific disability-producing conditions and syndromes (eg, similar across different problem areas. The discussion Down syndrome) that are not addressed in this review; below outlines some of those gaps and suggests mea- however, it is likely that our search strategy captured sures to overcome those gaps. The intent is not to be much of this literature from LAMI countries. Because a prescriptive but to provide recommendations across dif- number of severe neurologic disorders also lead to in- ferent problem areas in an overarching manner without creased mortality, a future review that addresses such an being too specific and repetitive. outcome is also possible. The definitions of disability used by different researchers also vary and made it difficult to compare the results across studies. Although the Special Need for Research Related to the Neonatal Period studies were reviewed critically, no predefined quality Information available from both developed and devel- criteria were used to include or exclude studies, because oping countries point to the special importance of the the aim of the study was to identify gaps in knowledge; neonatal period for future growth and development of thus, the broadest possible lens for study inclusion was the child. Researchers have identified various etiologic maintained. Future studies can build on our review by conditions, such as birth asphyxia, meningitis, jaundice, expanding the scope and making it more stringent with hypothyroidism, prematurity, etc, which are particularly regards to quality of studies; however, we felt it was relevant to future disabilities and are of utmost im- important at this stage in the genesis of evidence-based portance during the neonatal period. Appendices 1 and approaches to child development in LAMI countries to 2 provide details about such research from LAMI coun- take a more inclusive approach. Finally, the statistical tries. A number of preventive strategies highlighted analyses were purely descriptive, and no attempt was in Table 4 are especially relevant to the neonatal pe- made to report pooled estimates because of the huge riod, including screening for genetic disorders and neo- variation in the methods used in the studies. Only ranges natal hypothyroidism, immunization, nutritional sup- of different epidemiologic estimates are provided. plements, and appropriate antenatal and postnatal care. However, information about long-term cognitive and Need for Research in Childhood Disability in LAMI Countries other impairments of children with neonatal high-risk In 1990 the United Nations published a document that conditions is particularly lacking from LAMI countries; outlined the different methods to collect data on disabil- hence, more research is needed to generate such knowl- ities across countries, prompted by a review of existing edge. Because most of the neonatal high-risk conditions literature at that time.94 The need for such a document can be avoided or minimized by providing appropriate was determined after reviewing existing research at that maternal and child health services, it makes sense for time. The United Nations study also found that disability policy makers to focus on strategies that are needed in estimates varied between 0.2% and 20.9%. Since then, their countries to reduce neonatal risk factors. Besides the World Health Organization (WHO) has taken major this, policy makers should also encourage programs that

PEDIATRICS Volume 120, Supplement 1, July 2007 S19 Downloaded from www.aappublications.org/news by guest on September 26, 2021 TABLE 6 Key Findings of the Review and Recommendations Area of Research Available Information and Gaps in Knowledge Recommendations Type of disability Some information on intellectual and hearing disabilities More research needs to be conducted to gather and disseminate is available, but little is known of other types of information about different types of childhood disability and disabilities the long-term consequences of morbidities that stem from delivery complications and neonatal and early childhood illness; national and international collaborations should be forged to use the available knowledge base and limited budget in the most effective manner Regional variation More information about disabilities is available from Other countries besides those mentioned should generate more some speciﬁc countries such as India, China, research to have a better understanding of regional Bangladesh, Pakistan, Nigeria, and South Africa, but differences, if any little is known from other countries Assessment of disability The TQ seems to be the most widely used screening tool The TQ is a screening tool and a more comprehensive used in community-based studies; studies on hearing instrument that can assess different types of disabilities, and impairment have often used the Liverpool Field related covariates need to be developed; new instruments, Audiometer; different instruments have been used to while being comprehensive should also be easy to administer assess intellectual disability in a community setting; instruments to assess different types of disabilities accurately need to be developed and validated across cultures; more instruments should be generated to screen disabilities among children Ͻ3 y old Epidemiology Research design Majority are cross-sectional studies using community- or More sophisticated studies should be conducted to have better school-based study populations; fewer numbers of understanding of the problem of childhood disability; studies more sophisticated designs such as case-control and should also maintain stringent methods to account for biases cohort studies or RCTs have been conducted and confounders and use appropriate statistical analyses Descriptive Some information about prevalence of intellectual and Although studies on intellectual and hearing disabilities need to epidemiology hearing disabilities in different study populations is improve, studies on other disabilities need to be conducted available, but little information is known about other more frequently; cohort studies that report on incidences types of disabilities; no information is available on should be conducted; particular attention is needed on incidences outcomes of delivery complications and early illnesses, such as birth asphyxia and serious neonatal infections, as well as preterm birth Analytical Information about severity of disability across different More focus should be given to address severity of disabilities epidemiology age groups is not available, although some across different age groups to develop better services; more information about age distribution is available; cohort studies should be conducted to understand causality although some information about risk factors is (eg, antenatal, intrapartum, and early postnatal risk factors); available, causal inferences cannot be made, because more longitudinal studies are needed to study developmental most studies are cross-sectional; few longitudinal issues and ascertain problems faced by these children over studies are available that have ascertained different time periods and for different forms of impairments development issues and disability, and all seem to be in the area of intellectual disability Prevention and Some information is available about interventions in the While continuing research in the areas of intellectual and hearing promotion area of intellectual and hearing disability, compared disabilities, researchers should also study other disabilities; to to other disabilities, but it is inadequate; only a develop good prevention and promotion strategies, more handful of RCTs have been performed to study RCTs need to be conducted; authors of future studies on different prevention methods; because of the paucity intervention should try to build economic evaluation into of appropriate intervention strategies, there are no their study framework; more studies on different interventions studies on economic evaluation; what little is known need to be conducted across different countries; once more about interventions is limited to countries in Asia; effective interventions are identiﬁed, they should be taken to almost nothing is known about community-based scale and implemented within larger communities and interventions that have public health implications evaluated for effectiveness Services Little is known about available services for children with More research should be services oriented and generate interest disabilities, both within the community and in the in developing adequate services that are both community area of special education and training; almost no based and special-school based; more family-support facilities information is available about family-support facilities; should be developed; the need to develop intersectoral what little is known about services shows that there is collaboration between services should be stressed through inadequate intersectoral collaboration; no research; because caring for children with disabilities involves information is available about training of staff and specialized training with support from other staff, it is essential human resources except for anecdotal references to to develop training programs and address this issue through inadequate numbers and poor training research Legislation and policies Limited information is available on legislation for More debate should be generated about evidence-based public children with disability in China and in some Arabian health policies and legislation; the effectiveness of legislation countries and iodine supplementation policies in to support children with disabilities and their families should India; no information is available about the be studied effectiveness of the policies or legislation

S20 MAULIK, DARMSTADT Downloaded from www.aappublications.org/news by guest on September 26, 2021 provide knowledge and supportive services to families ability compared with other questions, and the question with at-risk children. on “slowness” is highly dependent on cultural understanding and parental perceptions and is most likely to Knowledge About Childhood Disability and Regional Variation result in heterogeneity across different cultures.103 More- This review highlights the paucity of information on over, TQ-positive individuals must undergo secondary childhood disability available from LAMI countries. A testing to identify the precise nature of the disability. cursory search of medical databases for childhood dis- Thus, more research needs to be done to develop stan- ability shows the vast discrepancies in knowledge be- dardized, culturally sensitive, valid instruments for use tween LAMI and high-income countries. Researchers in by professionals that can conform to the standard defi- different high-income countries have a better sense nitions of the concept of disability as outlined by re- about the burden of the problem, its economic impact, searchers in the area of childhood disability, or research- and trends over time.97–100 ers in LAMI countries need to use the standard WHO It is evident from the review that there is a paucity of instrument in conducting research. Moreover, strategies research from some parts of the world, especially South that link community-based screening (eg, with the TQ) and Central America, southeast Asia, central Asia, and with gold-standard professional assessment and devel- large parts of Africa. Some research is available from opment of a tailored intervention approach need to be Asian countries such as India, Bangladesh, Pakistan and worked out. China and African countries such as South Africa and An oft-used technique by researchers in LAMI coun- Nigeria. tries was to use a standard instrument and translate and Although one reason for this asymmetry could be back-translate it into their native language and use that that most indexed medical journals accept only English- translated version for their research. This fails to address language articles, it is possible that the true reason is cultural differences in expression of symptoms, and a an actual deficit in quality research; for example, China more complex process that requires generating new is able to publish a number of studies in international questions and performing extensive psychometric tests journals despite its medical fraternity not being taught in to assess reliability and validity is needed. Unfortunately, English. However, a better understanding of this is only this would take time and money, both of which are possible through a multilanguage search of regional da- limited in LAMI countries, given their limited pool of tabases. expertise and funding. Collaboration with international institutes with experience in such research could be a Definitions and Screening Instruments way of reducing the implication of inadequate human One issue that has often been a major concern among resources. Also, given the expense of modern research, researchers in the area of childhood disability is the collaborations with other institutes and even across sec- definitions used to define the problems and standardized tors, both nationally and internationally, might be a way methods of measuring them. The studies reviewed failed of sharing the cost and burden of research. to address this issue and used varying definitions of disability that were based on either cutoff scores on Epidemiology different measures of intellectual impairment or levels of Another issue that prevents researchers in LAMI coun- sound above which hearing loss was assumed. This re- tries from developing a better understanding of the bur- sults in a medical diagnosis, which is not the best way to den of childhood disability is the type of research under- ascertain level of disability in children because it does taken. A majority of the studies from LAMI countries are not take into account the level of functional limitations, cross-sectional in nature and provide some epidemio- degree of service utilization, or impairment of role per- logic estimate; however, few researchers have conducted formances.101 The WHO102 has developed a specific tool cohort studies, and none have addressed the issue of and assigned specific definitions for standardized assess- developmental changes over time and their effect on ment of disability and impairment that incorporate all disability. All the cohort studies focused on intellectual the above-mentioned concerns in the measure. How- disabilities and primarily studied clinical outcomes. Be- ever, none of the recent studies from LAMI countries cause cohort studies provide good estimates of causality used a comprehensive definition or used any measure and allow one to track changes of different predictors that provides a wholesome estimate of the problem of over time, it is imperative that more research in LAMI childhood disability. countries focus on conducting longitudinal studies to Although the TQ was the most common screening improve the understanding of childhood disability. tool used by researchers, its validity is highest for iden- Other advantages of longitudinal studies are that they tifying forms of disabilities on the more severe end of the allow one to assess multiple outcomes such as different spectrum but has limitations in detecting milder disabil- types of disabilities or different types of service utiliza- ities. Research has also found that the questions on tion. This, in turn, would allow better estimation of the hearing, vision, and seizures in the TQ have lower reli- burden of disability and the gap in health-related service

PEDIATRICS Volume 120, Supplement 1, July 2007 S21 Downloaded from www.aappublications.org/news by guest on September 26, 2021 utilization. The limited number of RCTs make it difficult grams and clinic-based family care services, including to evaluate the efficacy of any intervention. All the RCTs diagnostic and intervention services. The need for proper mainly focused on intellectual disability, primarily from supervision and effective referral services was also a south-Asian perspective. Although these studies are stressed by others when they assessed the importance of invaluable, especially given the paucity of quality re- trained birth attendants in reducing perinatal complica- search, others will need to use this information to de- tions of mothers and newborns.105 The importance of all velop studies that are suitable for their own setting and these factors has also been realized by researchers work- area of focus. ing in a LAMI setup in which community-based clinics This review shows that a number of researchers had that provide family-based interventions are being pro- focused on certain epidemiologic aspects of childhood moted along with more emphasis on intersectoral col- disability. However, most of the epidemiologic research laboration to develop comprehensive programs.67,68,85,86 is related to descriptive epidemiology that outlines the Another important issue related to disabilities, espe- prevalence of different types of disabilities and enumer- cially in LAMI countries, is the stigma attached to certain ates their association with certain etiologies. Less is disabilities such as intellectual disability. Intellectual dis- known about the impact of childhood development on ability along with other mental disorders and epilepsy disability or the variation across age groups according to are highly stigmatizing.106,107 Stigma attached to hearing severity, although the importance of the neonatal period impairment has also been found.108 Some research- is evident. Even the etiology is mere association, because ers47,69,83 have identified this issue and have tried to most studies were cross-sectional in nature. One way in address it through their research, but more needs to be which the epidemiologic research could be improved is done. Stigma often unknowingly begins at home, where by generating more analytically oriented research. Some families undermine the efforts of their children and re- of the areas of research that epidemiologic studies need strict activities in which they would like to be involved. to address are the association between different types of This is further amplified within the community when disabilities and child development and the association there is failure to assimilate individuals, particularly between service utilization and type or severity of im- those with mild disabilities within the mainstream, and pairment. Parental needs and expectations and their link they are marginalized to special schools or offered re- with available service-utilization rates are other areas stricted job opportunities suitable only for people with that need to be investigated. More qualitative research disabilities. Evidences of such an attitude are develop- on culturally appropriate assessment techniques, per- ment of special schools and admission of any child with ceptions of stigma, and needs assessment is also re- a minimal level of disability in such schools. Educators quired. often realize the importance of including these children in normal schools and providing special care, but advo- Prevention and Promotion and Services Related to Disability cacy is lacking. In LAMI countries, inadequate assess- Although researchers have identified a number of pre- ment of the child’s degree of impairment often results in vention and promotion activities that are deemed ben- faulty choices. In some cases, simple readjustments such eficial in alleviating childhood disability in the context of as using microphones in class or placing a child near the LAMI countries (Table 4), few have actually reported on teacher can alleviate the problem associated with hear- specific early childhood intervention–related research ing or vision impairment.31 Thus, childhood disability that they have conducted, the exception being RCTs in needs to be recognized and addressed by the society. the area of intellectual disability45,56,58 or involvement in Although milder forms of disability can be managed national programs on salt iodization in India,87 which better by providing wholesome community-based ser- have been found to be beneficial in reducing neonatal vices that provide education to the children besides hypothyroidism.65 However, researchers realize the im- other services, the more severe forms can be tackled by portance of community-based interventions and services addressing the different etiologic factors that lead to that involve families as the most sustainable of activities. severe disabilities (eg, encephalitis, meningitis, cerebral This is encouraging, given that recent evaluation of the malaria, birth asphyxia/intrapartum hypoxia, iodine de- Integrated Management of Childhood Illness program in ficiency, iron-deficiency anemia, consanguinity, etc).6 Bangladesh, Brazil, Peru, Tanzania, and Uganda has However, some children who suffer from severe dis- highlighted the importance of community-based, fami- ability do require special training. The need for addi- ly-oriented programs that are based on a sound epide- tional adequately trained staff to deliver such special miologic and cultural framework.104 One strategy could care is highlighted by many researchers. The activities be to include key indicators of neurodevelopment for could entail services related to screening17,53 or specialist preschool children across a range of domains including activities related to rehabilitation70 or establishment of motor, vision, hearing, and intellectual within larger special schools.72 The importance of developing manage- maternal and child health care programs; this would rial skills to coordinate effectively is an important com- require strong linkage between community-based pro- ponent of any intersectoral activity and is required in

S22 MAULIK, DARMSTADT Downloaded from www.aappublications.org/news by guest on September 26, 2021 services related to disability. The need for staff trained in other similar situations. More focused, organized, and the coordination of services between different profes- higher-quality research that embodies greater interna- sionals and services has been highlighted by others.82,85 tional collaboration is needed before implementation of From a research perspective, no studies could be iden- sound public health practices for prevention and man- tified that addressed the issue of cost evaluations of agement of childhood disabilities and impairments in specific intervention in LAMI countries. The reasons are such countries. inadequate knowledge about the efficacy of interven- ACKNOWLEDGMENTS tions in LAMI countries and, where information is avail- This review was supported by the Thrasher Research able, lack of knowledge about their effectiveness in com- Fund, March of Dimes, Save the Children-US (through a munity settings. In the presence of limited budgets grant from the Bill & Melinda Gates Foundation to the dedicated to specific interventions, the importance of Saving Newborn Lives program), the Wellcome Trust more research in the area of cost-effective interventions Burroughs Wellcome Fund, and the Programme for using rigorous study designs is further underlined. Global Paediatric Research. Legislation REFERENCES Almost no information is available about existing poli- 1. Ahmad OB, Lopez AD, Inoue M. The decline in child cies and legislation with regards to childhood disability mortality: a reappraisal. Bull World Health Organ. 2000;78: in LAMI countries. 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S26 MAULIK, DARMSTADT Downloaded from www.aappublications.org/news by guest on September 26, 2021 APPENDIX 1 Qualitative Information on Services, Prevention, and Promotion, and Legislation and Policy Article Country Services Prevention and Promotion Legislation and Policy Bender et al88 Bolivia Only 8% of women with children —— with developmental delay had prenatal care, and they were 4.3 times less likely to have Ͼ2 prenatal visits and 2.6 times less likely to receive the same level of care Bhatara et al65 India The study suggests implementing The study suggests implementing Discusses the current program on iodine- neonatal screening for neonatal screening for deficiency disorders and outlines the thyrotropin in a phased manner thyrotropin and antenatal need to develop low-cost in different hospitals in India and monitoring of mothers with comprehensive programs to tackle the improving antenatal monitoring hypothyroidism to reduce the problem and include neonatal of mothers with hypothyroidism risk of congenital screening for thyroid function hypothyroidism-induced intellectual disability Bhatia and Joseph39 India The primary care physician failed to —— assess for other disabilities, and epilepsy was the only disability that received adequate treatment Biritwum et al90 Ghana — Steps to increase public awareness — to reduce discrimination and developing education and training activities for such children were advocated Black109 Bangladesh Rudimentary services for —— handicapped children were available only in Dhaka at that time; the role of families and involvement of families in therapy was identified; the therapist not only identified roles for the child within the family setup, but therapy included meeting periodically with the child within a family setup and assessing progress Chen and Simeonsson14 China Convalescent homes and hospitals Different prevention techniques Laws to protect women and children so to manage different physical have been implemented; that disabilities are limited are needed; conditions causing disabilities universal prevention laws banning consanguineous marriage and special education schools (immunization), indicated and facilitating compulsory are present; there are future prevention (genetic counseling), immunization and protection of those plans to integrate disability- secondary prevention (improved with disabilities are also essential reducing measures with primary maternal and child care and care and increasing public screening for phenylketonuria), education, increasing training of and tertiary prevention personnel, and improving (rehabilitation services) research Christianson et al15 South Africa Most children with severe —— intellectual disability and epilepsy were on antiepileptic drugs, but few with mild intellectual disability and epilepsy were on antiepileptic drugs Dave et al17 India There is a need for training of staff —— to improve awareness among clients about genetic screening for intellectual disability and its treatment including rehabilitation facilities whenever available; the development of a proper referral system for screening for genetic factors is also required

PEDIATRICS Volume 120, Supplement 1, July 2007 S27 Downloaded from www.aappublications.org/news by guest on September 26, 2021 APPENDIX 1 Continued Article Country Services Prevention and Promotion Legislation and Policy Davidson et al64 Developing — Some of the common causes of — countries disability are sickle cell anemia giving rise to motor disability, Down syndrome, consanguinity, intrauterine growth retardation, cerebral palsy, HIV/AIDS, nutritional deficiencies, infections, postnatal injuries including trauma related to war, lead and arsenic in water, poverty, and poor maternal education; preventive measures like immunization, oral rehydration therapies, nutritional supplements, screening for vision and hearing impairment and prevention of mother-to- child transmission of HIV are some of the preventive measures in practice Gell et al62 Developing — Reviewed articles outlined the — countries importance of early screening in school-going children using field audiometers and clinical examination; they also suggested screening infants by using distraction techniques and performance tests Gopal et al84 Mauritius Majority of parents contacted Some prevention and promotion — public- or private-sector methods being practiced are hospitals or clinics once they public campaigns to raise identified hearing impairment awareness about hearing in their children and were impairment, development of a referred to an ear, nose, and national screening program, throat specialist or speech and increase awareness among therapist; although parents, community workers, identification of impairment teachers, and government to was within acceptable period identify and manage hearing of time, there was a big time impairment among children lag between referral for more effectively assessment and placement of hearing aid; the delay had been attributed to break-up of a smooth network of referral between specialists and the organization that distributes hearing aids; the role of community workers to speed up this process has been underlined Grantham-McGregor Developing — Small for gestational age and — and Fernald66 countries protein-energy malnutrition led to reduced cognitive development; providing school breakfast has shown better cognitive performance in the short-term but long-term benefits have not been ascertained; iodine supplementation, especially during pregnancy, is beneficial; iron-deficiency anemia treated by iron supplementation is

S28 MAULIK, DARMSTADT Downloaded from www.aappublications.org/news by guest on September 26, 2021 APPENDIX 1 Continued Article Country Services Prevention and Promotion Legislation and Policy beneficial in older children, but its effect on children Ͻ2yis unsubstantiated; other micronutrient deficits like vitamin A and zinc are also beneficial Gustavson53 Pakistan Steps were taken to improve A structured prevention program — maternal health care and was initiated in 1997 in several screening facilities for genetic villages and involved 12 000 risks for disabilities children under the age of 12 y; trained birth attendants/health workers were initiated into the prevention model to improve maternal and child health care; other services like providing information about the risks of genetic disorders, screening for hypothyroidism where necessary, vaccination schemes, identification of children with developmental delay, and organizing specific stimulation activities for them were also started Hamadani et al56 Bangladesh — Study aimed to find the effect of — antenatal zinc supplementation on neurobehavioral development of the infant Hamadani et al57 Bangladesh — Study aimed to find the effect of — zinc supplementation on neurobehavioral development of the infant Hartley and Wirz82 Nigeria and Different providers have specific —— Uganda roles; the government’s roles are to increase social awareness, increase cooperation between different governmental agencies, and develop community-based services; professionals should involve other professionals from different expertise working in the areas of disabilities, include semiprofessionals and expertise from all sources, involve families in decision-making, increase the issue of social awareness in research, and develop skills- training modules; families should reduce labeling, have involvement in decision-making, and promote active listening and communication; nongovernmental organizations should involve those affected and their families in rehabilitation and decision-making, coordinate with different service providers, and use nonspecialists where feasible

PEDIATRICS Volume 120, Supplement 1, July 2007 S29 Downloaded from www.aappublications.org/news by guest on September 26, 2021 APPENDIX 1 Continued Article Country Services Prevention and Promotion Legislation and Policy Hartley89 Uganda The Ministry of Education has an —— Education Assessment and Resources Service to cover all children with learning disorders; the Uganda Institute for Special Education provides training for teachers and also conducts a 1-y postgraduate course on community-based rehabilitation; other organizations also conduct local training of community workers to meet the needs of children with disabilities Izuora54 Nigeria Maternal and child health services The importance of better maternal — and genetic counseling services and child health care and need to be improved; immunization facilities was rehabilitation facilities are few, underlined especially for the youngest group; families form a strong resource for care Kello and Gilbert41 Ethiopia There is a need to improve primary Common prevention practices like — care and maternal and child improved primary health care, health care facilities with the immunization, vitamin A active involvement of the supplementation, health government education, and family spacing are being used Kochupillai87 India — The authors identified the link — between iodine deficiency and intellectual impairment, which led to the development of the national program to combat iodine deficiency in the form of iodized salt, especially in the endemic areas of India McConachie et al45 Bangladesh The study found that a distance —— training package had a definite role in community-based rehabilitation of children with disabilities, though accessibility needed to be improved by creating more centers providing such services McConachie et al37 Bangladesh The Bangladesh Protibandhi —— Foundation has set up 2 outreach centers (rural and urban) where mothers with children with disabilities drop in for training in skills to manage their children; a distance training package has been developed that provides physical, daily- living, speech, language, and cognitive skills training to parents McConkey and Mphole35 Lesotho The parents wanted services that —— involved themselves as trainers for future service providers; they also wished for increased awareness of human rights and better understanding by the community of their children’s problems and a better interaction; the need for more specialists was highlighted, including community-based workers

S30 MAULIK, DARMSTADT Downloaded from www.aappublications.org/news by guest on September 26, 2021 APPENDIX 1 Continued Article Country Services Prevention and Promotion Legislation and Policy McConkey et al110 Lesotho The study evaluated the activities —— conducted by parents of children with disabilities after an earlier study had shown that they wanted to be involved in further activities; each community had been able to conduct at least 1 meeting (total of 15 meetings) where issues like disability rights, involvement of schools and other members of the community, approaching health professionals for services, identifying children in need, and programs suited best to help them were discussed; the primary outcome of the increased awareness in the community had been increased enrollment of children in schools, improved acceptance of the children in daily community activities and sports, identification of income-generating schemes for the affected, ensuring that an interpreter is available at the clinics to help the parents to communicate with the health staff, and increase in membership Miles60 Pakistan The review reports on community- —— based rehabilitation programs and school-based programs and surveys carried out among common people and professionals about awareness regarding disabilities; inadequacy of quality research and poor dissemination of available research due to lack of funds were cited as some of the common issues affecting proper service development Mittler63 Developing It was felt that mere identification The Portage guide to home — countries of cases, especially those at risk, teaching was highlighted where was not sufficient and more community workers went into needed to be done to provide homes to identify short-term assistance to those in need in the goals and means of achieving wider context of service them using simple language and provision and education; the play skills and improved means importance of developing of communication and social manpower and involving the communication; the objectives family was also stressed in the spanned 1–2 wk and were workshop modified after they were reached Nair and Radhakrishnan67 India The review focuses on early child Some of the activities that facilitate Discusses the issues of targeting deprived care and development programs child development were infant urban children, especially the girl child, like the Integrated Child stimulation, creation of referral through national- and state-level Development Service and Urban services, community-based actions; it also highlights the Basic Services; it highlighted identification and intervention in importance of the Integrated Child some of the problems faced by cases with developmental delay, Development Scheme and national these programs: inadequate creation of well-infant clinics and education programs that strive to

PEDIATRICS Volume 120, Supplement 1, July 2007 S31 Downloaded from www.aappublications.org/news by guest on September 26, 2021 APPENDIX 1 Continued Article Country Services Prevention and Promotion Legislation and Policy funds and infrastructure, poorly community-owned early child provide free education to all children trained staff, absence of pro- development clinics, screening Ͻ14yofage grams for those Ͻ3 y of age, lack of toddlers and preschool of community participation and screening, child-to-child ownership, and inability to approach, primary education detect cases early in life enhancement program, and identification of mental subnormality in primary school children Olusanya31 Nigeria — Early identification of hearing — impairment in children with better seating arrangements for them in order to provide a quieter atmosphere and proximity to the teacher’s desk were suggested; different tools to amplify sound were also suggested Pal et al47 India Some of the services that were —— identified to improve the condition of children with disabilities were development of parent group meetings and outings to discuss common issues, using drama as a means of interacting with students in class, holding different social events for children with disabilities to express themselves, and interacting with village councils, teachers, and the elderly and involving them in decision-making Paul et al92 Jamaica There is a community-based —— rehabilitation center that takes care of children with disabilities Qi-hua et al50 China — The need for genetic counseling — and improvement of good sociocultural practices was outlined Ran et al70 China Rehabilitation was formally started —— only in the 1980s; Chinese Union of the Handicapped was formed, and later a rehabilitation section was created in the Ministry of Health; a survey had found a large number of people with untreated mental illnesses who were being mistreated; community-based rehabilitation incorporates sheltered work- shops, civil administration bureau, medical bureau, Union of the Handicapped, Community Based Rehabilitation Ministry, and community hospital; the government set up a “welfare factory” on each street that served as a rehabilitation center; these centers provided shelter, medical examination, food, training in hygiene, and skills for daily living; basic education and vocational training was also

S32 MAULIK, DARMSTADT Downloaded from www.aappublications.org/news by guest on September 26, 2021 APPENDIX 1 Continued Article Country Services Prevention and Promotion Legislation and Policy provided; they were often employed within the factory; the supervisors had experience in medicine and teaching Replogle111 Guatemala Although the Ministry of Public —— Health in Guatemala is working to set up early-detection systems, health workers and advocates for the disabled say many child disabilities are detected late, which can limit options for treatment and recovery; because most births in rural areas are conducted by poorly trained midwives, a large number of cases of disability go undetected at birth; there are some centers that cater to the needs of the disabled, but they are few and mostly around the capital; there is a lack of knowledge among the population about disability and lack of coordination between health and education; 2005 was the year of the disabled in Guatemala; the referral system needs streamlining Richmond et al85 Developing Improvement of services and —— countries ﬁnancing sectors is required; services should be coordinated; training of staff both in technical and managerial setups should be improved; important criteria for good services are community- based and primary-care–based services, interdisciplinary interaction, uniform distribution of staff across rural and urban settings, national and international programs tailored to local needs, development of professional and managerial skills at local level, development of national policies based on a prevention strategy, use of expertise from United Nations bodies wherever required, and development of programs that are not only cost-effective but also easily measurable and evaluated Shah68 Developing Involvement of family and The review highlights some of the — countries community in services related to primary prevention strategies, management of disabilities is especially because tertiary care is essential; intersectoral costly and often not easily collaboration is required, as is accessible; moreover, there is collaboration between different shortage of trained staff; some national and international bodies well-tested community-based practices were home-based methods to monitor pregnancy like maternal charts, partographs, fetal movement monitoring, nutrition of mother, identifying

PEDIATRICS Volume 120, Supplement 1, July 2007 S33 Downloaded from www.aappublications.org/news by guest on September 26, 2021 APPENDIX 1 Continued Article Country Services Prevention and Promotion Legislation and Policy risk factors in mothers that can lead to disabilities in children, growth monitoring, card to identify home risks, card to monitor child’s psychosocial development, and identification of neonatal jaundice; the need to provide trained birth attendants skills to manage problems like birth asphyxia and development of appropriate parenting skills is important; programs like Safe Motherhood needs encourage- ment; the review also highlighted the importance of intersectoral collaboration in managing malnutrition and disability Simeonsson86 Developing Services need to be based on Primary prevention strategies could The health policy should be geared to countries epidemiologic findings, cultural involve identification of risk manage different infant and maternal and definitional norms as factors in children and parents health issues that lead to reduced accepted in the country, and and promote parenting skills; mortality and morbidity in a stepwise presence of proper screening secondary prevention could manner depending on the countries’ tools involve reduction of disability by health condition teaching new skills to the child or helping the family to address issues related to problems faced due to their child’s disability; tertiary prevention could involve corrective/augmentative measures for the child’s impairment and improving family relationships, values, and dynamics Sonnander and Claesson69 China Community-based practices and Genetic screening, immunization, Different legislation and national policies special education facilities for iodine supplementation, and are geared toward supporting those affected are also prenatal and postnatal care are population affected with some disability encouraged; more family- some of the common preventive oriented research is required measures suggested Tao61 China Some of the services available —— include community-based rehabilitation provided by social welfare institutes and educational programs within normal schools and schools for children with disabilities; occupational therapy stations are also present Thorburn83 Jamaica Family responses depended on —— many factors; many still believed in supernatural causes, especially among old people and those with low education; they also have misconceptions about available treatments but generally are convinced about some treatment although priorities are low; often, children live separate from their parents, and father living away from the child affected the acceptability of the child in the society; child- rearing practices like punishment and negative feedback were not

S34 MAULIK, DARMSTADT Downloaded from www.aappublications.org/news by guest on September 26, 2021 APPENDIX 1 Continued Article Country Services Prevention and Promotion Legislation and Policy useful; even information given by professionals was found to be inadequate and created a negative impact on the overall attitude and practices of parents Wirz and Lichtig71 Developing Services are inadequate and varies —— countries from few well-equipped centers in large cities to poorly equipped to absent centers in smaller towns and villages; generally the services follow a medical model; however, some home-based programs to assist parents in teaching children with hearing impairment have been implemented in India and Jamaica; community-based services are not adequately developed, and use of nonspecialists is limited Yousef72 Developing The ﬁrst schools were set up in The importance of increased public Legislation to protect the right of children countries Cairo and Baghdad in 1958; awareness of disabilities and with intellectual disabilities and provide (primarily) education of children with early detection and special education is needed; national among intellectual disabilities is under commencement of special policies should provide integrated Arab the Ministry of Social education for children with schooling facilities for children with countries Development; education is intellectual disabilities was intellectual disabilities provided from special schools encouraged and is not community based; there is no appropriately developed curricula; formal teacher training is not well developed; there is no accepted deﬁnition of mental retardation and no good assessment tools — indicates that data were not available.

PEDIATRICS Volume 120, Supplement 1, July 2007 S35 Downloaded from www.aappublications.org/news by guest on September 26, 2021 S36 APPENDIX 2 Qualitative and Quantitative Information on Epidemiologic Studies Article Country Method Epidemiology SS AD, % ND, % ID, % VD, % HD, % SD, % MD, % ALK DARMSTADT MAULIK, al-Ansari12 Bahrain RD: cross-sectional household About 4.5% (2672) of the households in Bahrain were 5938 0.4 — — — — — — survey to study national sampled using a questionnaire similar to the US morbidity Household Survey; total population was 11 521, of SP: community which 5938 were children and adolescents (0–19 ST: questionnaire on the y); questions were related to type and cause of pattern of US Household disability; the questions were answered by the Survey head-of-household, and the disabled person was not interviewed; altogether, 26 children (aged Downloaded from 0–19 y) suffered from some disability, and the prevalence rates varied according to age and gender; in the 0- to 9-y-old group: male, 0.4%; female, 0.3%; and in the 10- to 19-y-old group: male, 0.6%; female, 0.4%; intellectual disability was common, and birth trauma and infections were www.aappublications.org/news common causes al-Ansari49 Bahrain RD: case-control study to Cases were selected from a special school for 109 — — — — — — — study the risk factors for handicapped children; of the total, 47.7% were mild intellectual disability male; mean age was 9.5 y; prenatal causes were SP: special schools responsible for 38.5% of mild mental retardation; ST: adapted version of other causes of mental retardation were Down American Association on syndrome (14.7%), a perinatal cause (11.9%), Mental Retardation postnatal cause (7.4%), and unknown etiology Adaptive Behavior Scale (42.2%); low socioeconomic status, consanguinity, illiteracy, and family history of mental retardation

byguestonSeptember 26,2021 were associated with being a case Arens and Molteno38 South Africa RD: cross-sectional study to Prevalence of cerebral palsy in different ethnic 588 — — — — — — — assess the prevalence of groups was 2.2% (white population), 2.9% postnatally acquired (colored population), 2.1% (black population); cerebral palsy in children cerebral infection was the commonest cause (Ͻ13 y) followed by head trauma; spasticity was the SP: hospitals, clinics, and commonest complication; almost a third of white special schools and colored children had severe or profound ST: none intellectual disability, and almost 50% of black children had severe or profound intellectual disability Bashir et al52 Pakistan RD: prospective cohort study Pregnant women were registered at an earlier period 649 — — 6.2 — — — — to assess the prevalence of of time, and baseline data were collected about mild intellectual disability them; once their children reached 4–6 y of age, SP: community they were included in the study, and intellectual ST: Wechsler Intelligence capacity was ascertained; the children were Scale for Children, Griffith’s evaluated using standardized tools and by Mental Development physicians; blood tests were conducted to assess Scale, TQ metabolic causes; highest prevalence of mild intellectual disability was in the periurban and urban slum areas; speech impairment was the most common associated problem Bastos et al26 Tanzania RD: cross-sectional study Schoolchildren from 1 urban and 1 rural district were 854 — — — — 3.0 — — where schoolchildren were chosen to assess hearing impairment; 3 urban and assessed for hearing 5 rural schools were chosen; the children were impairment aged between 6 and 13 y in urban schools with SP: community 47% of the students being boys; the age range in ST: electronic instrument to rural schools was 6–16 y and 58% of them were assess hearing boys; battery-driven screening instrument was used to assess hearing; bilateral loss was 10.5% in urban schools and 4.7% in rural schools; impairment increased with age and was more common in urban girls than boys (girls/boys, Downloaded from ϳ5:3), although no difference was seen in the rural population; middle-ear infection was common Bender et al88 Bolivia RD: cross-sectional study A subgroup of infants aged 6–18 mo were included; 30 — — — — — — — based on a subgroup from they were from a larger group of mothers involved a larger WHO study on in a breastfeeding and child-spacing research of www.aappublications.org/news breast feeding the WHO; probable developmental delay was SP: community found in 20% of the subsample ST: Bayley Scales of Infant Development Berg et al13 Bangladesh RD: cross-sectional study that Community health workers administered 2 screening 4003 — — — — — — — aimed to find simple tools to 2 samples of children in rural settings; the screening tools for children age of the children varied between 2 and 9 y; in with hearing impairment in the first screen using audiometry there were 4003 the community children (median age: 5 y) and in the second SP: community group there was a subsample of 569 children byguestonSeptember 26,2021 ST: Conditioned play (median age: 3 y); in both groups, a little more audiometry and than 50% were boys; both groups were otoacoustic emissions/ comparable for maternal education (ϳ65% tympanometry uneducated, ϳ11% with more than primary

EITISVlm 2,Splmn ,Jl 2007 July 1, Supplement 120, Volume PEDIATRICS education, literacy ϳ35%); ϳ50% were farmers; median maternal age was just above 30 y; consanguinity was 7%–9%; using the Conditioned Play Audiometry, 1.6% were referred for further checkup; children who did well on the otoacoustic emission were not given the tympanometry test; although Conditioned Play Audiometry was a useful screening tool among the older children (age 6–9 y), otoacoustic emission/ tympanometry was especially useful to identify hearing impairment among the younger group (2–5 y), although it was also beneﬁcial as a second-stage screening tool for the older children S37 S38 APPENDIX 2 Qualitative and Quantitative Information on Epidemiologic Studies Article Country Method Epidemiology SS AD, % ND, % ID, % VD, % HD, % SD, % MD, % ALK DARMSTADT MAULIK, Bhatia and Joseph39 India RD: cross-sectional study of Records of 100 children from cerebral palsy clinics 100 — 27.0 40.0 54.0 7.0 36.0 — disabilities among children were checked for disabilities and intervention; age with cerebral palsy ranged between 1 and 18 y (mean: 6.9 y) with SP: clinic based male/female ϭ 1:6; spastic diplegic type of ST: Receptive and Expressive cerebral palsy was present in 68%; parents were Emergent Language Scale, aware of the gross disabilities but were not aware Behavioral Observation of visual disabilities in their children Audiometry, Vineland Downloaded from Adaptive Behavior scale, Binet-Kamath Test, Brainstem Evoked Response for hearing, different ophthalmic tests, EEG, genetic and metabolic www.aappublications.org/news diagnostics, tests to asses orthopedic problems Biritwum et al90 Ghana RD: cross-sectional study to A 2-stage cluster sampling was done in 1 region of 2556 1.8 — 0.2 0.4 0.5 0.5 0.6 assess prevalence and Ghana; both rural and urban communities were causes of childhood randomly selected; children aged 0–15 y were disability included in the study; there was an almost equal SP: community number of male and female children, and those ST: household disability from a rural community were twice that from an questionnaire urban community; disability varied according to age: 1–5 y (1.4%), 6–9 y (1.7%), 10–15 y (0.4%);

byguestonSeptember 26,2021 the rate among the rural population was 2%, and that in the urban population was 1.5%; inadequate immunization rate was one of the commonest causes of disability, and the commonest type was hearing and speech problems found in 26% of the children with disability; infections, vitamin A deficiency, and birth injuries were common etiologic factors; ϳ30% of children reported feeling discriminated against in the society Chen and China RD: cross-sectional The prevalence of any disability was 2.9% (males) and 12 242 2.7 — 1.8 0.1 0.4 — 0.2 Simeonsson14 population–based survey 2.5% (females); the causes for disability were over 29 provinces to assess unknown (47.2%), prenatal causes like infections, disability consanguineous marriage, inherited disease, SP: community drugs, and medicines (20.9%), perinatal birth- ST: none related complications (2.5%), and postnatal causes like infections, malnutrition, tumors, and accidents (29.3%); among the different types of disabilities, 66% were intellectual and 14% were hearing Chen and China RD: cross-sectional study to Urban and rural families with children with some 101 — — 6.0 2.0 62.0 — 22.0 Simeonsson44 assess the needs of families impairment were selected for the study; they were of children with disabilities selected either from the local school for children SP: families of children with with impairment or from the community after disabilities initial identification of the children; the ST: Abilities Index, Family instruments were administered to the caregivers; Needs Survey the caregivers consisted of parents, grandparents, relatives, and others; 60% were boys; ages ranged from 0–13 y; the children from the rural setting had more disabilities, and the level of education and economy was lower in the rural setting; Downloaded from compared to the rural families, the urban families expressed more need for community support, family support, professional help, and better coordination with teachers; rural families expressed more concern about child health, finance, marriage, and education, and urban www.aappublications.org/news families showed more concern about future employment opportunities; both groups received equal familiy support, but the rural community received more government, neighbour, and welfare support; compared to studies done in the United States, this group was more concerned about identifying proper professional support and financial assistance Christianson et al15 South Africa RD: cross-sectional household The household survey included 2- to 9-y-old children 6692 — — 3.6 — — — — survey to study the from 8 villages; there was a 2-phase screening; byguestonSeptember 26,2021 prevalence of intellectual initial screening involved using the TQ, followed disability by a pediatric assessment using Griffith’s Scale and SP: community other visual and auditory assessments; most ST: TQ, Griffith’s Scale of children were born in hospitals/clinics with ϳ20%

EITISVlm 2,Splmn ,Jl 2007 July 1, Supplement 120, Volume PEDIATRICS Mental Development, born at home; phase I screened 6692 children visual and auditory clinical and phase II screened 722 children; intellectual assessment measures disability of severe type was present in 0.6% and mild type in 2.9%; Ͼ60% were male, although the commonest cause for intellectual disability was congenital disorders, 60.5% were of unknown etiology; commonest complications were epilepsy (15.5%), cerebral palsy (8.4%), and auditory disability (7.1%) Couper79 South Africa RD: cross-sectional study to Speciﬁc areas were chosen based on criteria; children 2036 6.0 4.7 — 0.2 2.0 2.4 2.8 assess disability in children Ͻ10 y of age were included and initially screened in a particular district for any type of disability using the screening SP: community questionnaire; those screening positive were ST: modiﬁed version of TQ with further assessed by the rehabilitation specialists; a 6 additional questions to subsample was reinterviewed for validation; about enquire about Ͻ 2y half of the affected children were male; prevalence

S39 development S40 APPENDIX 2 Qualitative and Quantitative Information on Epidemiologic Studies Article Country Method Epidemiology SS AD, % ND, % ID, % VD, % HD, % SD, % MD, % ALK DARMSTADT MAULIK, increased with age: 2% (0–2 y), 4.8% (2–5 y), and 6.3% (5–9 y); neurocognitive disabilities and hearing disabilities were most prevalent Datta et al16 India RD: cross-sectional study to Participants were primary caregivers of children with 31 — — — — — — — assess the level of burden intellectual disability attending a tertiary center in among caregivers of a given locality; the children had to be diagnosed children with intellectual with intellectual disability based on different disability in an Indian instruments and DSM-IV criteria and not have any Downloaded from setting other psychiatric comorbidity; the parents were SP: children with intellectual interviewed regarding burden and expressed disability and their emotion within 2 wk of enrollment in the study; caregivers they were also asked to rate the prognosis of their ST: Binet Kamat Scale of child’s impairment; of 98 children identified, 31 Intelligence, Gessell could be included and assessed; the children were www.aappublications.org/news Development Schedule, all Ͻ16 y of age and 22 of 31 were boys; in 19 Vineland Social Maturity children the mother was the primary caregiver Scale, Family Burden included in the study; high expressed emotion Interview Schedule, was associated with increased burden; burden was DSM-IV more among the poor; common areas of burden were financial, lack of family interaction and leisure activity, disruption of routine, and burden due to effect on physical and mental health of others; statistically nonsignificant association was found between burden and increasing age of child and

byguestonSeptember 26,2021 perceived prognosis Dave et al17 India RD: cross-sectional study to A community was screened and cases referred to the 550 000 — — 0.1 — — — — identify screening facilities genetic counseling clinic for confirmation; among and appropriate services to genetic causes the most common were Down reduce genetic causes for syndrome (64%) and metabolic disorders (23%); disabilities environmental causes included pregnancy-related SP: community complications like infections (9.0%), low birth ST: different screening tools weight (8.6%), and birth asphyxia (8.4%); to assess genetic problems, consanguineous marriage was common instruments to measure IQ Durkin59 Developing RD: overview of different The importance of appropriate study population and —— — — — — — — countries research methods like criteria for defining disability is stressed; the study surveys, use of also reviewed the different risk factors associated administrative data, and with disabilities in developing countries 2-phase screening SP: community ST: none Durkin et al18 Pakistan RD: cross-sectional survey to 2-phase cluster sampling of houses was done, and all 6365 — — 3.6 — — — — assess mental retardation children aged between 2 and 9 y within the SP: community selected community were included; a little over ST: TQ, Stanford Binet half were male; those screening positive in the first Intelligence Test phase and a selection of those screening negative were reviewed by a clinician and a diagnosis of intellectual impairment was reached by consultation between a clinician and a psychologist; the diagnosis was based on established criteria; 90 children had severe impairment, and 140 had a milder type of Downloaded from impairment; more than half of those with serious impairment had other disabilities too; higher prevalence was seen in rural population, among children with mothers having less education, consanguineous marriage, history of goiter in mother or child, poor antenatal and postnatal care, www.aappublications.org/news low immunization, and perinatal complications like injuries and infections Gomes and Lichtig34 Brazil RD: cross-sectional Respondents included parents of children aged 3–6 133 — — — — 9.0 — — community-based study y; their children were given an audiometric assessing hearing assessment; the questionnaire was found to be impairment effective, and 14 of 33 questions had a significant SP: community concordance rate between community workers ST: parent-report and researcher; conductive deafness of varying questionnaire used by intensities was the main type of deafness nonprofessionals to assess identified byguestonSeptember 26,2021 hearing loss and audiometry Gopal et al84 Mauritius RD: cross-sectional Children with hearing impairment at 70 dB were 37 — — — — — — — assessment of risk factors identified through an administrative database, and

EITISVlm 2,Splmn ,Jl 2007 July 1, Supplement 120, Volume PEDIATRICS for hearing impairment their parents were approached for responding to SP: community the survey questionnaire; ϳ65% of children were ST: questionnaire addressed male, 45% were primary school children, and to parents to report 51% were secondary school children; high risk hearing impairment in indicators were present in 54% of children, and their children 21.6% had a family history of hearing impairment; maternal history of rubella infection was present in 18.9% Grantham-McGregor Jamaica RD: case-control with multiple Children aged 9–24 mo and 2 SDs below normal 129 — — — — — — — et al46 arms of intervention to length were divided into 4 groups: control, on study the effect of supplement, on stimulation, and on supplement nutritional supplement on and stimulation; a ﬁfth group had almost normal stunted growth growth; the stimulated group included SP: community 1 h/wk training of mothers to play with their ST: Grifﬁths Mental children using homemade toys; the supplement Development Scale group was provided milk based formulation;

S41 physical measurements, IQ of both the child and S42 APPENDIX 2 Qualitative and Quantitative Information on Epidemiologic Studies Article Country Method Epidemiology SS AD, % ND, % ID, % VD, % HD, % SD, % MD, % ALK DARMSTADT MAULIK, mother, socioeconomic status, and a 24-h dietary recall (done at 2 d, 6 mo, and 15 mo) were recorded; the study lasted for 2 y; assessment was done with respect to development quotient, hearing, hand-eye cordination, motor, locomotor, and performance; stimulation had significant effect on development quotient and all other parameters like motor, hand-eye, hearing Downloaded from and speech, locomotor, and performance; supplementation had effect on development quotient, locomotor, and performance; use of both had best results after controlling for confounders; the effect of supplementation was delayed but had a more sustained effect later on, whereas the effect of www.aappublications.org/news stimulation was the opposite Gustavson53 Pakistan RD: 12-y cohort study to assess All pregnant women within a specified period and 1476 — — 2.8 — — — — causes of intellectual residing in 4 selected urban and rural slum areas disabilities were monitored from their fifth month of pregnancy; SP: community the children were closely followed-up from birth until ST: none the age of 12 y; the children were examined every third month up to the age of 6 y and subsequently twice a year until the age of 12 y by pediatricians, psychologists, and social workers; prevalence of mild mental retardation was 6.2%, and that of severe

byguestonSeptember 26,2021 mental retardation was 1.1%; perinatal mortality was 54 in 1000; infant mortality was 10%, and increased risk was noted in consanguineous marriage, low birth weight, and past history of infant death; serious birth defects were present in 5.6%, the commonest being neural tube defects; psychomotor development was more delayed among the poor (mean time to walk: 15 mo) compared to the rich (mean time to walk: 12 mo) Hamadani et al56 Bangladesh RD: RCT to study the effect of 559 pregnant women were randomly assigned to 240 — — — — — — — antenatal zinc supplemen- receive zinc or a placebo from 4 mo gestation on tation on infant develop- wards and the development of the infants was ment and behavior at 13 mo monitored until 13 mo of age; 120 randomly of age selected children from each group were followed SP: community up; zinc supplementation had a worse effect on ST: Bayley Scales of Infant development and behavior; although the Development, Caldwell difference was small, it remained significant Home Inventory to assess stimulation; behavior assessed by a modified version of a scale by Wolke Hamadani et al57 Bangladesh RD: RCT to study the effect of After a house-to-house survey of 3 slum areas, infants 301 — — — — — — — zinc supplementation on aged 4 wk were randomly assigned to receive infant development and zinc supplements or a placebo; they were given behavior supplements for 5 mo and monitored until 13 mo SP: community of age to assess neurobehavioral development; ST: Bayley Scales of Infant the results showed that children on placebo fared Development, Caldwell better Home Inventory to assess stimulation; behavior assessed by a modified version of a scale by Wolke Downloaded from Hartley and Wirz82 Nigeria and RD: cross-sectional qualitative Data were collected over a period of3yinavariety 1372 — — — — — — — Uganda study assessing of research settings using 5 separate studies; communication disability included participant observation, surveys, SP: community semistructured interviews, focus group ST: none discussions, field notes, and reflective diaries; the study interviewed professionals, disabled people, www.aappublications.org/news parents, and community members; there were 166 subjects from Nigeria and 1206 from Uganda; information was gathered on services and practices, knowledge, attitude, and practice regarding communication disabilities and prevalence estimates; a communication disability model was developed; the discussion highlighted the role that each stakeholder can play in improving the conditions for people with communication disability byguestonSeptember 26,2021 Hartley89 Uganda RD: cross-sectional study to Among those responding to the questionnaire, 57% 1041 — — 18.3 12.5 19.7 49.4 62.2 estimate the prevalence of were boys; within each type of disability, verbal verbal communication communication was affected, and overall almost disability and its impli- half the children had some form of problem

EITISVlm 2,Splmn ,Jl 2007 July 1, Supplement 120, Volume PEDIATRICS cations for services among children with some disability SP: community ST: a verbal communication questionnaire adapted from the TQ Hatcher et al 27 Kenya RD: cross-sectional Primary school children from 57 schools were 5368 — — — — 5.6 — — assessment of hearing included in the study; age ranged from 5 to 21 y impairment among (53% were 10–14 y); besides questions related to primary school children socioeconomic status, the children were physically SP: community examined and hearing was assessed using an ST: Liverpool field audiometer audiometer; wax in the ear was the commonest cause (8.6%) S43 S44 APPENDIX 2 Qualitative and Quantitative Information on Epidemiologic Studies Article Country Method Epidemiology SS AD, % ND, % ID, % VD, % HD, % SD, % MD, % ALK DARMSTADT MAULIK, Izuora54 Nigeria RD: 4-y cohort study, using Children from a pediatric neurology clinic were 291 — — — — — — — prospective and retro- included in the study; different laboratory, spective data, to assess radiologic, and electrophysiological tests were causes of intellectual done; a total of 291 children with mental disability retardation were identified, of which 172 were SP: pediatric neurology clinic male; they were followed up for 4 y; ages ST: Denver Development ranged from 0 to 15 y; commonest causes were Screening Test, Draw a acquired (44%), congenital (33%), and idiopathic Downloaded from Person Test (23%); commonest congenital cause was Down syndrome; birth trauma was the most frequent acquired cause (59.4%) followed by neonatal jaundice (19.5%) Keeffe et al81 Developing RD: cross-sectional study on The E-test was found to have good sensitivity and —— — — — — — — countries validation of screening specificity in studies conducted across different www.aappublications.org/news tools for visual impairment developed and developing countries SP: clinic based and special schools for the blind ST: visual acuity test card, pinhole mask Kello and Gilbert41 Ethiopia RD: cross-sectional study to 3 schools for the blind were selected, and of 360 360 — — — — — — — assess causes of visual students, 232 were male; while 11 students had no impairment in children visual impairment, 36 had some form of visual SP: special schools for the impairment but no blindness; childhood factors, blind mainly vitamin A deficiency and measles,

byguestonSeptember 26,2021 ST: Snellen E-type optotype accounted for almost 50% of the cases, but in almost 45% the cause was unknown; avoidable causes of visual loss were identified in 68% of children Khan et al55 Bangladesh RD: 3-y prospective cohort Children from a cerebral palsy clinic were followed- 92 — 16.0 83.0 — — — — study of children with up for 3 y; of the 92 children, 49 were from an cerebral palsy to determine urban setting, and 70% belonged to a low their outcome socioeconomic status; the ages varied from 16 to SP: cerebral palsy clinic 67 mo; detailed clinical assessment was done by ST: Independent Behavior pediatricians; the type of cerebral palsy and type of Assessment Scale disability were assessed by using standardized tools Kirkpatrick et al28 Nepal RD: cross-sectional study to Children from 4 primary schools were screened; the 309 — — — — 7.0 — — test a screening tool and initial screening was at 30 dB, and those failing that assess prevalence of were rescreened at the same frequency level as well hearing impairment as at higher frequencies; those with confirmed SP: community hearing impairment were examined clinically; ST: Liverpool field audiometer rescreening helped to reduce the number of false- positive cases of hearing impairment Lyn et al29 Jamaica RD: cross-sectional study of Children from 27 public and 5 private schools were 2202 — — — — 4.9 — — hearing impairment in screened; of the 2202 children, 1047 were boys; school children the ages ranged from 5 to 7 y; initial screening was SP: community by pure tone audiometry and tympanometry. This ST: tympanometry and pure- was followed by clinical examination for those tone audiogram who failed the first screening. Wax in the ear was the commonest of hearing impairment McConachie et al45 Bangladesh RD: RCT that evaluated the The study compared efficacy of center-based and 85 — — — — — — — efficacy of 3 different types minimal outreach programs; there were 3 study of services for mothers arms: distance training packages (DTP), mother- with children with cerebral child group, and health advice and nutritional Downloaded from palsy supplements; the urban arm compared DTP with SP: clinic based and mother-child, and the rural arm compared DTP rehabilitation centers with health advice; IBAS was used to measure ST: Independent Behavior children’s adaptive skills, self-report questionnaire Assessment Scale (IBAS), for maternal stress, Judson Scale for maternal self-report questionnaire, adaptation to the child, and Family Support www.aappublications.org/news Judson Scale, and Family Scale for perceived family support; qualitative Support Scale information was collected on mothers’ experiences about supporting their child and reasons for inadequate follow-up; ages ranged between 1.5 and 5 y; there were 45 urban and 40 rural children; 58 children were followed-up for the whole study period (9–12 mo), and 71% of them were boys; the urban parents fared better than the rural parents, probably due to their increased education level; the mother-child group byguestonSeptember 26,2021 did the best although the DTP was beneficial too; there were concerns regarding accessibility to the DTP program especially among mothers coming to the centres from far away

EITISVlm 2,Splmn ,Jl 2007 July 1, Supplement 120, Volume PEDIATRICS McConachie et al37 Bangladesh RD: cross-sectional qualitative The Independent Behavior Assessment Scale was used 47 — — — — — — — study that aimed to ﬁnd the to measure children’s adaptive skills, Self-report reasons that hinder access to questionnaire for maternal stress, Judson Scale for distance training package maternal adaptation to the child, and Family Support among parents with Scale for perceived family support; qualitative children with cerebral palsy information was also collected on mothers’ experiences SP: clinic based about supporting their child and reasons for not ST: Independent Behaviour being able to follow-up appropriately with the Assessment Scale, Self- centers; children were from rural and urban centers report questionnaire, with a mean age of 40.5 mo; rural mothers were Judson Scale, and Family younger and less educated; rural children were more Support Scale malnourished; follow-up was more among male children and in mothers who reported being less adapted toward their child; some of the reasons for not being able to follow-up were cost of travel, household work pressures, nonpermission to travel

S45 alone (especially in cities), and illness of child S46 APPENDIX 2 Qualitative and Quantitative Information on Epidemiologic Studies Article Country Method Epidemiology SS AD, % ND, % ID, % VD, % HD, % SD, % MD, % ALK DARMSTADT MAULIK, McConkey and Lesotho RD: 2 cross-sectional 68 parents were included from an association of parents 68 — — — — — — — Mphole35 qualitative studies to assess with children with mental handicap; the group sizes the needs of parents with were between 7 and 16; median age of the children children with disabilities; was 14 y; a selection of parents, community health the initial study explored workers, teachers, and other service providers were the wishes of parents for asked about the need for training different types of their children and the service providers and the need for training of trainers degree to which those had within the parent group; the parents wished Downloaded from been fulfilled; the second independence for their children, jobs and schooling study addressed training facilities, protection of their child’s rights, and training needs for parents and facilities; creation of parent groups and organizing children in a subsample of village gatherings was considered useful; increasing the original group awareness was identified as an important theme; SP: community key themes identified in the second study were www.aappublications.org/news ST: none improving parenting skills, raising awareness within the community about acceptance of children with disabilities, and training professionals and teachers about ways to deal with such children; need for greater accessibility to community service providers and skills for training other parents was highlighted McPherson and Gambia RD: cross-sectional study Sampling was done from 8 districts in Gambia using a 32 000 — — — — — — — Holborow19 using both community- national survey, 29 other districts through hospitals and clinic-based sample to and clinics, 11 primary schools using survey over wet assess the prevalence of and dry season, and individuals with hearing

byguestonSeptember 26,2021 hearing impairment impairment in outreach rural and urban clinics; in the SP: community and clinic national survey, the health team screened all children based from 2 to 10 y who were either suspected of suffering ST: none from some hearing impairment or speech problem; the total number of children (2–10 y) in the 8 districts were almost 26 000; village leaders and health workers identified local children with any such problem; the national survey identified 259 children with severe-to-profound hearing impairment with a male/female ratio of 3:2; the incidence of severe-to- profound deafness was 2.7 in 1000 in the village survey; meningitis (31%) was the commonest cause followed by rubella, measles, and familial factors; otitis media was common among schoolchildren, especially in the wet season; ϳ4000 children from hospitals and clinics were examined, and ϳ50% suffered from otitis media McPherson and Sub- RD: overview of different Studies involved population- and school-based surveys; — — — — — 0.27– —— Swart73 Saharan studies on epidemiology the sample sizes varied; the prevalence of deafness 13.5 Africa and etiology with and some individual population characteristics in the implications for future different countries were Gambia 0.27% (children research directions aged 2–10 y from rural population), Nigeria 13.5% SP: community (schoolchildren), Sierra Leone 0.4% (population- ST: Liverpool field audiometry based survey of children aged 5–15 y), Angola 2.0% (schoolchildren), Zimbabwe 3.3% (schoolchildren), Kenya 2.2% (schoolchildren), Tanzania 3.0% (schoolchildren), Swaziland 1.0% (schoolchildren), and South Africa 7.5–9.2% (schoolchildren); the commonest etiologies were meningitis, measles, maternal rubella, febrile illnesses, genetic causes, and a large proportion of unknown etiology; the need for more epidemiology studies, especially community- Downloaded from based surveys, studies on cultural healing practices, use of systematic research methods and standard definitions to define hearing impairment, and use of good instruments to assess hearing loss were emphasized Mittler 63 Developing RD: review of workshop Issues like development of simple screening tools ———————— www.aappublications.org/news countries proceeding on different that could be used by lay workers compared to epidemiology and services- more specific tools that would lead to lower false- oriented activity as positive cases but involve trained interviewers was applicable to developing underlined countries SP: community ST: none Mutua et al36 Kenya RD: cross-sectional qualitative The study included families of children with 351 — — — — — — — study that assessed the disabilities like different levels of intellectual discrepancies in concepts disabilities, hearing and visual problems, and byguestonSeptember 26,2021 that parents with children autism; of the 351 children, 64% were boys; with disabilities had about 2 rural and 2 urban districts were selected; existing services and their different support opportunities like health, expected use education, friend, husband/wife, religion,

EITISVlm 2,Splmn ,Jl 2007 July 1, Supplement 120, Volume PEDIATRICS SP: community acceptance, employment, and home were ST: parents were questioned scored according to expected use and importance; about 8 different physical there was a match between expectations and and human resources importance for health, friend, religion, acceptance available in the community in a community, and home; education and in a parent-appraisal scale employment were thought to be important but underutilized; parents felt that having a spouse for their child was important, but most felt that the male child was unlikely to have a spouse; it was felt that girls would be more unlikely to utilize employment opportunities; many parents felt that their children would require special education and on-job training to be accepted, although research has shown results to the contrary S47 S48 APPENDIX 2 Qualitative and Quantitative Information on Epidemiologic Studies Article Country Method Epidemiology SS AD, % ND, % ID, % VD, % HD, % SD, % MD, % ALK DARMSTADT MAULIK, Nair and India RD: review on etiology of It discusses the biological and environmental risk factors ———————— Radhakrishnan 67 developmental delay and that cause delayed development, like low birth evaluation of early child care weight, perinatal complications, antenatal and development programs complications, etc SP: community ST: none Nasir et al51 Afghanistan RD: case-control study to Children attending a clinic were assessed for type of 633 — — — — — — — assess causes for different disability and probable causes of disability; controls Downloaded from types of disability in were age and gender matched and were randomly children attending a clinic selected from a register of the same community; the SP: children attending a clinic ages varied between 0 and 15 y; children with ST: none cerebral palsy, mental retardation, and motor disability were included; parents were narrated detailed symptoms of conditions that they might www.aappublications.org/news have been affected with during pregnancy that could have led to the disability in the child and were asked to respond to symptoms that they could identify; based on those, a probable list of etiologic factors was developed; some of the common causes for such disability were family history of disability, pregnancy-related complications, low birth weight, birth trauma, infections, psychological problems, and consanguinity; consanguinity was high (46%); illiteracy among the mothers was 97%, and

byguestonSeptember 26,2021 antenatal care was available for only 22% of mothers Natale et al20 India RD: cross-sectional study to 2 groups of families in the lowest 2 economic classes 640 12.7 — — — — — — ascertain the prevalence of were studied to assess prevalence of disability in 2- to disability among children 9-y-old children; only 1 child per family was selected; SP: community the number of families in the 2 social strata were ST: Tamil version of the TQ approximately equivalent; the mean age of the children was 5 y, and ϳ50% were boys; while 17.2% of families in the lowest strata had a child with disability, 8.4% in the next lowest group had a child with disability; disability varied across age groups, and it was 26% in 2-y-olds, 9% in 3- to 6-y-olds and 15% in 7- to 9-y-olds; ϳ57% of the disabled children were boys; only speech-related disability varied significantly between the 3 age groups, with the highest prevalence seen in the 0- to 2-y group Newton et al30 Kenya RD: cross-sectional study to Nursery-grade children belonging to 6 districts were 757 — — — — 1.7 — — validate a questionnaire to screened; the schools were selected randomly; the detect hearing loss questions assessed bilateral hearing impairment at SP: community 40 dB; the respondents were school teachers, parents, ST: a questionnaire designed to and caregivers and community nurses at maternal collect information on child’s and child health clinics; the type of respondent was behavioral response to randomly selected in each district and the parents/ sound and communication caregivers accompanying the child were ability and also causes of questioned while attending a clinic; the mean hearing impairment; pure- age of the children was 5.7 y; validation of the tone audiometry questionnaire was done using pure-tone audiometry; while the sensitivity of the questionnaire was 100%, specificity was 75% Nirmalan et al21 India RD:cross-sectional community- Community workers assessed visual acuity using 1250 — — — 9.2 — — — based assessment of Cambridge Crowded Cards and also conducted blindness and its functional external physical examination; those with impact in children suspected visual problems were referred to a SP: community pediatric ophthalmologist; functional ability was Downloaded from ST: Cambridge Crowded Cards assessed using a previously validated LVP-VFQ; and LV Prasad Visual the mean age of the children was 10.3 y (range: Function Questionnaire 0–15 y); results showed that visual impairment (LVP-VFQ) within the community was not identified appropriately because a majority of children with some type of visual impairment were not www.aappublications.org/news identified as suffering from it before the visual tests; this underlined the importance of screening for visual impairment among children in the community Olusanya31 Nigeria RD: cross-sectional study of Schoolchildren were chosen through a process of 359 — — — — 8.9 — — hearing impairment in randomization and evaluated for hearing school children impairment using screening tools; ages ranged SP: community from 4.5 to 10 y, and there were 190 girls and 169 ST: tympanometry and pure- boys; educational performance was also noted; high- tone audiogram frequency hearing loss was common, with otitis byguestonSeptember 26,2021 media and unconjugated hyperbilirubinemia as common causes Olusanya et al32 Nigeria RD: cross-sectional study to New school entrants in 1 city were included in the study; 359 — — — — 13.9 — — estimate prevalence of the ages of the children varied from 4.5 to 10.9 y; of

EITISVlm 2,Splmn ,Jl 2007 July 1, Supplement 120, Volume PEDIATRICS hearing impairment in the 76 schools in the city, 8 were randomly selected school children for the study, and in each school the first child was SP: community selected randomly followed by every third child; ST: parental interviews, while 14.5% failed the audiometric test, and 32.9% otoscopy, pure-tone failed the tympanometric test; of the 50 children with audiometric screening, and hearing loss, 18 (36%) had conductive hearing loss, tympanometric 12 (24%) had sensorineural hearing loss, and 20 examinations (40%) had mixed hearing loss; impacted cerumen and otitis media were the commonest causes Pal and Chaudhury43 India RD: cross-sectional validation A screening tool was validated among mothers of 46 — — — — — — — of a scale to assess parental children with epilepsy; they had negative attitudes, attitudes toward their felt incapable of helping their children, and resorted children who suffered from to overcontrol or undercontrol of their children’s some disability activities; the scale was validated in the sample but SP: children with epilepsy needed to have more external validation S49 S50 APPENDIX 2 Qualitative and Quantitative Information on Epidemiologic Studies Article Country Method Epidemiology SS AD, % ND, % ID, % VD, % HD, % SD, % MD, % ALK DARMSTADT MAULIK, ST: scale to measure parental adjustment toward their children with disability Pal et al47 India RD: case-control study to A subgroup from a group of children on antiepileptic 333 — — — — — — — examine the societal drugs was included in the study; a questionnaire was integration of children with developed based on nonparticipatory observation, epilepsy in a rural setting by disability workers, of children’s activities, and their SP: neurology clinic social integration in the villages; the parents reported Downloaded from ST: questionnaire developed the reasons for the child not participating in a to assess social integration particular activity; 88 cases were compared against controls who were randomly selected through age- stratified sampling of healthy population within the same cohort; there were 5 groups with 50 controls for each group; the groups were preschool (2–5 y) www.aappublications.org/news children, school-aged boys and girls (6–12 y), and adolescent boys and girls (13–18 y); the parents influenced school attendance, and often the children’s activities were restricted to running errands and tending of animals; boys missed out on peer interactions and play, and girls had restricted social activities; a quarter of parents had negative feelings about their children, and some feared for their safety; parents’ negative attitudes and societal perceptions were important factors that affected social

byguestonSeptember 26,2021 integration of the children Paul et al92 Jamaica RD: cross-sectional house-to- Community workers initially screened 2- to 9-y-olds 5468 9.4 0.2 8.1 1.1 0.9 1.4 0.4 house survey of disability using the TQ; those who screened positive and 8% of in children those who screened negative were further assessed SP: community using a protocol developed for this research; of 193 ST: TQ children with disabilities, mild disability was prevalent in 6.9%, moderate in 1.9%, and severe in 0.6%; while 70% had 1 disability, almost 30% had Ն2 disabilities; in the motor disability group, 70% were due to cerebral palsy; a majority of the causes of disability were unknown; infections were a common cause for hearing impairment Prescott et al33 South Africa RD: cross-sectional study to The study group consisted of 177 children from clinics 378 — — — — — — — ascertain the reliability of a and 201 from classrooms; a 3-level “voice test” was voice test to identify developed, refined, and standardized, and its validity hearing impairment was assessed against a standardized audiometric test; SP: community and clinics the specificity of the new test was 95.9%, and the ST: voice test sensitivity was 80% in clinical studies; in the classroom-based study, the specificity was 97.8% and sensitivity was 83.3% Qi-hua et al50 China RD: matched case-control Children (Ͻ14 y) living in an urban area were included 7150 — — 0.8 — — — — study to ascertain the in the study; Ͼ50% were boys; those who screened causes of intellectual positive on the screening tools were clinically disability in a population assessed; mental retardation was identified in SP: community 56 children; the prevalence increased with age, ST: Denver Development reaching a peak of 1.1% in the 10- to 14-y-old group; Screening Tool, Good- there were no gender differences; of the identified enough’s Draw a Picture cases, mild cases were most common (62.5%) Test, Gesell’s Develop- followed by moderate (28.6%) and severe (8.9%); the mental Test, Wechsler prevalence was higher in the poor, those with Intelligence Scale for parents with lower education, those with family Downloaded from Children-Revised history of alcoholism, those with increased age of the mother, and those with a previous history of a child with mental retardation; 4 age-gender/ residential- area–matched controls were selected for each case, and the risk factors were assessed; perinatal factors like maternal viral infection, low birth weight, birth www.aappublications.org/news asphyxia, use of drugs, past history of seizures after birth, brain injury, malnutrition, and deficient preschool education were some of the common factors with Ͼ4- times higher relative risks Richmond et al85 Developing RD: reviews some of the The study also highlights some factors that affect the —— — — — — — — countries issues associated with prevalence of children with disability like population disability in children growth leading to increased absolute numbers SP: community of disabled children, increase in the number of ST: none high-risk births, and urbanization leading to increased exposure to accidents; some of the indicators that byguestonSeptember 26,2021 help to ascertain disability trends are infant mortality rate, low birth weight, degree of malnutrition, prevalence of infectious disease, mental disorders, other chronic diseases, and accidents

EITISVlm 2,Splmn ,Jl 2007 July 1, Supplement 120, Volume PEDIATRICS Russell et al58 India RD: RCT to assess the benefit Consecutive biological parents of children with 58 — — — — — — — of interactive group intellectual disability (based on DSM-IV criteria) with psychoeducation among no other comorbidity were randomly assigned to families with children with either receive 10 wk of integrated group intellectual disability psychoeducation (IGP) or didactic lectures; while SP: children with disabilities both groups received knowledge on issues like and their families behavioral problems, legal issues, marriage, ST: Binet Kamat Scale of comorbidity, and skills development, the Intelligence, Gessell experimental groups were allowed discussion with Development Schedule, an expert and problem-solving skill development; the Parental Attitude Scale children in both groups were taught skills Towards Management of development, improvement of social skills, training in Intellectual Disability self-care, and prevocational training; parents S51 S52 APPENDIX 2 Qualitative and Quantitative Information on Epidemiologic Studies Article Country Method Epidemiology SS AD, % ND, % ID, % VD, % HD, % SD, % MD, % ALK DARMSTADT MAULIK, reported on their attitudes by completing the attitudes scale at the end of the 1st and 10th wk; there were 29 in the experimental group and 28 controls; two thirds had mild intellectual disability, and three fourths were boys; a similar proportion was from a rural background; the mean age of the parents was 31.6 y, and that of the children was 6.4 y; the IGP was found to be beneficial in improving attitudes of Downloaded from the parents over a short term, especially among those with children with mild intellectual disability Sauvey et al22 Nepal RD: Cross-sectional study of Households over 24 rural development committees 28 376 1.0 — — — — — — rural households to assess were asked 2 questions about the presence of prevalence of disability in anyone with a disability in the household aged the Ͻ20-y age group Ͻ20 y and the type of disability; the interview was www.aappublications.org/news SP: community supervised by surveyors; half of the population ST: none surveyed were female; 829 children and adolescents were identified; among those with disability, the male/female ratio was 3:2; the prevalence across the different communities varied between 0.4% and 6.2%; the commonest disability was motor (89%) followed by speech (22%), vision (13%), hearing (8%), and learning (6%) Sebikari93 Uganda RD: cross-sectional study to Children attending a particular neurology clinic were 370 — 40.5 37.8 4.3 — 13.2 37.0 assess the types of included in the study; ages ranged from 0 to 11

byguestonSeptember 26,2021 neurologic disorders and years and the male/female ratio was 1.3:1; some of their etiology the commonest etiologic factors were congenital SP: neurology clinic problems, infections, prematurity, birth trauma, ST: none etc; the commonest diagnosis was convulsions followed by mental retardation Serpell23 Developing RD: cross-sectional study to find A house-to-house survey was done in Bangladesh, ———————— countries out clinical criteria to Brazil, India, Jamaica, Malaysia, Nepal, Pakistan, and describe severe intellectual Sri Lanka to assess severe intellectual disability as part disability in some countries of the International Pilot Study of Severe Childhood as used by the clinicians Disability; the TQ and Child Disability Questionnaire working in those countries were used as screening tools, but it was found that to reach a comprehensive discrepancies existed between the screening tools description and criteria used by clinicians to diagnose severe SP: community intellectual disability in the second phase; ST: TQ, Child Disability information was sought from clinicians involved in Questionnaire the project about their concepts regarding definition of severe intellectual disability with the aim of developing a common understanding of the problem; behavioral domain was important, and consensus was found on 5 domains, although variations based on characteristics of the clinicians were observed; training, cultural issues, and competence in English played a major role in determining the criteria by which diagnosis was made by the clinicians Shah68 Developing RD: reviews studies on International studies have shown that the prevalence of ———————— countries disabilities and its severe mental retardation in developing countries prevention methods, like India, Pakistan, Bangladesh, Nepal, and Sri Lanka especially from the vary between 0.5% and 1.5%; across the world the perspective of intellectual common causes are birth asphyxia and trauma, disability intrauterine growth retardation, infection, SP: community malnutrition, iodine deficiency, iron deficiency, ST: none neonatal jaundice, and genetic and metabolic Downloaded from disorders Shawky et al40 Saudi RD: cross-sectional study to Children from special schools with mental, hearing, and 4670 — — — — — — — Arabia assess the maternal risk visual disability were included in the study along with factors that contribute to nondisabled normal schoolchildren; while children childhood disability with disability were selected from specific schools, SP: children with and without normal children were selected through a process of www.aappublications.org/news disabilities stratified random sampling of 42 boys’ and girls’ ST: none schools; the mean age of the children was 13.7 y (range: 6–20 y) with Ͼ55% in the 10- to 14-y- old group; there were 3405 children with no disability, 421 with auditory disability, 178 with visual disability, and 666 with intellectual disability; overall, ϳ43% were boys; illiteracy and unemployment in the families of disabled children were higher; consanguinity was common; mothers Ͻ16yor Ͼ30 y were at increased risk; multiparity added byguestonSeptember 26,2021 to the risk Singhi et al42 India RD: cross-sectional study to The children were selected from a rehabilitation 1000 — — — — — — — ascertain causes and centre; the mean age was 36.4 mo, and 67.5% associated disabilities in were male; commonest antenatal causes were

EITISVlm 2,Splmn ,Jl 2007 July 1, Supplement 120, Volume PEDIATRICS children with cerebral palsy antenatal hemorrhage, fever, preeclamtic toxemia, SP: children with cerebral palsy and drug use; commonest neonatal causes were ST: none birth asphyxia, low birth weight, convulsion, and neonatal jaundice; spastic type of cerebral palsy accounted for 70% of cases; Ͼ72% had mental retardation, 41% had visual impairment, 32% had convulsions, 51% had malnutrition, and 14% had hearing problems Sonnander and China RD: review of literature on Overall, studies point to a figure of ϳ2% of —— — — — — — — Claesson69 classification, prevention, intellectual disability among children; the male/ epidemiology, and rehab- female ratio was 108:100; rural areas have higher ilitation of children with rates, especially in hilly regions with iodine intellectual disability in deficiency; other causes were perinatal causes like China between 1990 and injuries during labor, genetic factors, infections, etc 1995 SP: community

S53 ST: Different standardized scales used in studies since S54 APPENDIX 2 Qualitative and Quantitative Information on Epidemiologic Studies Article Country Method Epidemiology SS AD, % ND, % ID, % VD, % HD, % SD, % MD, % ALK DARMSTADT MAULIK, their use was initiated in 1980, although not all have been validated in the Chinese population Stein et al24 Developing RD: 2-stage multicountry A 2-stage survey was used to assess the rates of 8557 — — 0.5–4.0 — — — — countries cross-sectional survey of disability in 10 different countries; age of the intellectual disability children ranged from 3 to 9 y; initial door-to-door SP: community survey using the TQ was followed by clinical Downloaded from ST: TQ assessment of positive cases; rates for severe mental retardation varied from 5 in 1000 in the Philippines to 40.3 in 1000 in India; other rates were Bangladesh 16.2 in 1000, SriLanka 5.2 in 1000, Malaysia 11.2 in 1000, Pakistan 15.1 in 1000, Brazil 6.7 in 1000 and Zambia 5.3 in 1000. The prevalence www.aappublications.org/news of mild mental retardation were: 138 in 1000 (Bangladesh), 61 in 1000 (Brazil), 18 in 1000 (India); 9 in 1000 (Malaysia), 21 in 1000 (Pakistan), 4 in 1000 (Philippines), 7 in 1000 (Sri Lanka), and 30 in 1000 (Zambia); the commonest cause for the variation was difference in assessments; in Malaysia, the commonest reason for intellectual disability was perinatal factors; in Pakistan, it was genetic and prenatal causes; both mild and severe mental retardation were more common in boys; severe

byguestonSeptember 26,2021 mental retardation was common among the poor; consanguinity was a major cause; movement disorders, sensory deficits, and seizures were most common; mild mental retardation was often not recognized by mothers Tamrat et al91 Ethiopia RD: cross-sectional household Houses were selected based on random stratification 1628 3.1 — — — — — — assessment done on the basis of rural or urban setting; while SP: community the survey assessed disability across all age groups, ST: TQ children aged 5–14 y accounted for ϳ39% of those assessed; the commonest causes of blindness were vitamin A deficiency, trauma, and measles Tao61 China RD: review of epidemiologic Epidemiologic studies and understanding of mental —— — — — — — — studies on children with retardation were not present in China before 1950; intellectual impairment since the 1970s cluster sampling has been the SP: community most common method of assessment and often ST: different standardized trained interviewers followed by mental health screening tools used in professionals help in identifying cases; the China prevalence of mental retardation varies between 0.1% and 0.8% across community-based studies with generally higher rates in rural areas; prenatal and postnatal causes were the more common etiologic factors and included congenital disorders, birth trauma, prematurity, convulsions, infections, etc Tekle-Haimanot et al25 Ethiopia RD: cross-sectional survey to The study involved a door-to-door survey of Ͼ60 000 35 139 — — 0.2 — — — 0.3 assess common neurologic rural and urban population (ϳ35 000 children aged disorders leading to 0–19 y) in Bujatira; lay interviewers from the villages disability were trained; a medical officer was also trained in SP: community neurology; experts from the Mapping Institute ST: questionnaires on provided simple techniques of mapping the area; socioeconomic status, prior to launching the project, the questionnaire was general medical and piloted; information on different neurologic disorders Downloaded from psychiatric disorders, and or disability was obtained from the head of the neurologic disorders household or spouse; initial screening led to identification of persons with physical or mental disabilities; trained medical officers reinterviewed some cases for validation; those with probable neurologic problems were screened further using a www.aappublications.org/news detailed neurologic questionnaire and clinical examination and provided treatment, if required; intellectual disability was identified in 81 children; severe mental retardation varied across age groups: 0.2% (0–4 y), 0.2% (5–9 y), and 0.3% (10–14 y); overall there were 106 children with poliomyelitis, giving a prevalence of 0.3%; consanguinity was associated with higher rates of all problems Thorburn et al48 Jamaica RD: cross-sectional study to Initial door-to-door survey using the TQ was followed 5478 — 0.2 1.7 0.1 0.4 0.6 0.1 test the validity of the TQ by clinical examination of the positive cases and a byguestonSeptember 26,2021 and detect childhood selection of normal cases; community workers disabilities gathered data; children were 2- to 9-y-olds; while SP: community specificity across all disabilities was ϳ85%, sensitivity ST: TQ, Medical Assessment was 100% except for severe cognitive disabilities, for

EITISVlm 2,Splmn ,Jl 2007 July 1, Supplement 120, Volume PEDIATRICS Form, Psychological which it was 52% because of false-negative Assessment Procedure moderate cases Tombokan-Runtukahu Indonesia RD: cross-sectional study to The scale was subjected to qualitative and ———————— and Nitko78 assess the adaptation and quantitative analysis during translation, cross- validity of the Indonesian cultural adaptation, ﬁne-tuning, and data Adaptation of the Vineland collections Adaptive Behavior Scale SP: children with and without intellectual disability ST: Indonesian Adaptation of the Vineland Adaptive Behavior Scale SS indicates sample size; AD, all disabilities; ND, neurologic disability; ID, intellectual disability; VD, vision disability; HD, hearing disability; SD, speech disability; MD, motor disability; RD, research design; SP, study population; ST, screening tool(s); —, data not available; DSM-IV, Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition. S55 Childhood Disability in Low- and Middle-Income Countries: Overview of Screening, Prevention, Services, Legislation, and Epidemiology Pallab K. Maulik and Gary L. Darmstadt Pediatrics 2007;120;S1 DOI: 10.1542/peds.2007-0043B

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Downloaded from www.aappublications.org/news by guest on September 26, 2021 Childhood Disability in Low- and Middle-Income Countries: Overview of Screening, Prevention, Services, Legislation, and Epidemiology Pallab K. Maulik and Gary L. Darmstadt Pediatrics 2007;120;S1 DOI: 10.1542/peds.2007-0043B

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Pediatrics is the official journal of the American Academy of Pediatrics. A monthly publication, it has been published continuously since 1948. Pediatrics is owned, published, and trademarked by the American Academy of Pediatrics, 345 Park Avenue, Itasca, Illinois, 60143. Copyright © 2007 by the American Academy of Pediatrics. All rights reserved. Print ISSN: 1073-0397.

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