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While neurodevelopmental abnormalities are common in children with HIV infection, their detection can be challenging in settings with limited availability of health professionals. The aim of this study was to assess the ability to identify developmental disability among HIV positive and HIV negative children living in South Africa with an internationally used screen. This analysis uses a sample of 1, 4—6 year old children and 1, of their caregivers in KwaZulu-Natal, South Africa, including administration of the Ten Questions TQ screen, a standardized medical history and physical examination conducted by a medical doctor, with hearing and vision screening, psychological assessment for cognition and language delay, and voluntary HIV testing.
There was a high prevalence of disability among the sample.
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In this first report of the use of the TQ screen in the isiZulu language, it was found to have high sensitivity for detecting serious developmental disabilities in children, especially HIV positive children. The performance of the TQ in this sample indicates utility for making best use of limited neurodevelopmental resources by screening HIV positive children. This is an open access article distributed under the terms of the Creative Commons Attribution License , which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.
Data Availability: Data for this project are from the Asenze study. Data is not publicly available because participants from this study did not provide informed consent to have their information made publicly available. The data also contains potentially identifying and sensitive patient information. Questions regarding access to the data can be directed to the authors of the study, who may be contacted at: lld1 cumc.
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De-identified data can be made available to qualified researchers who meet the guidelines determined by the ethics committees that approved this study. The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript. Competing interests: The authors have declared that no competing interests exist. Although early initiation of ART appears to prevent many of the most severe sequelae, neurologic impairment remains an important co-morbidity among children living with HIV [ 4 — 7 ].
Insults to the brain from HIV and associated illnesses during early child development may impede optimal social, emotional, physical, and educational functioning and outcomes resulting in impairments, limitations and restrictions that persist throughout childhood and adolescence and beyond.
As a result, the burden and character of neurodevelopmental disabilities throughout childhood has emerged as an important area for research, clinical care, policy and planning for health, educational and social services sectors in many high burden countries [ 8 — 10 ].
In general, the capacity for evaluating neurodevelopment of children living in many low- and middle- income countries is poor due to limited numbers of specialist healthcare professionals.
A 2-stage strategy involving an initial screening questionnaire followed by more extended evaluation for those identified at-risk has been devised to overcome human resource shortcomings. The Ten Question TQ is a widely used screen that measures caregiver perception of how well their child functions compared to his or her peers in the realms of neurodevelopmental functioning.
It was developed to identify serious moderate and severe cognitive, motor, seizure, speech, vision and hearing disabilities and developmental delays in settings with limited access to professional resources [ 11 ].
It can also be used as a planning tool for educators, health professionals and social services. The TQ demonstrated good validity and reliability to identify children with serious disabilities. The validation, using known psychological measures and a standardized assessment of disabilities by a biomedical doctor, was carried out on approximately 22, children in 3 cultures including Jamaica, Bangladesh, and Pakistan [ 13 ].
However, the validity and potential utility of the TQ for assessing HIV positive children for risk of neurodevelopmental disabilities is not known. Because of the limited availability of trained medical doctors; there are 0.
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However, neurodevelopmental assessments are beyond the scope of practice for many nurse clinicians as well as non-pediatric trained medical doctors in this setting. The aims of this study were 1 to determine whether the TQ screen can identify HIV positive children who are and are not at risk for neurodevelopmental disability serious and mild in order to efficiently refer those who are at risk for further assessment and 2 to characterize neurodevelopmental disabilities in a population based sample of South African pre-school children, including both HIV positive and HIV negative.
The Asenze Study is a longitudinal epidemiologic study of health and psychosocial need and related contextual factors among young children. The primary caregiver of all year-old children was identified through a door-to-door household survey of five isiZulu tribal areas in the eThekwini District, KwaZulu-Natal, South Africa, and were invited to enrol themselves and the child in a longitudinal study of their health and psychosocial functioning. The area comprises peri-urban dwellings, and is characterized by high levels of HIV infection, food insecurity and unemployment.
Children aged between 4—6 years at the time of the first wave of data collection who were residents in the area for past 6 months were eligible to participate in the study. At the household visit, following informed consent from primary caregivers, the TQ screen for child disability was administered. The TQ is a brief questionnaire for childhood disability designed to be used in a range of cultures in low- and middle-income countries [ 18 ].
The TQ screen had been translated and back translated into isiZulu following standard procedures for psychometric instruments [ 19 ]. A child scores positive for a possible disability if one or more of the ten questions are positive.
A medical doctor, blinded to the results of the TQ screen, administered a standardized semi-structured pre-coded medical history and physical exam including a developmental history and brief structured observations of functioning in language, motor skills, following instructions adapted from Durkin et al.
All adults and children attending the assessment were offered HIV testing with counseling. Consent for HIV testing was obtained by trained counselors in accordance with national guidelines [ 22 ]. The caregiver responses to the TQ screen were compared with disability assessments obtained by a medical doctor using a standardized pre-coded history and physical, including hearing and vision testing.
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Additional independent assessments of language delay the Reynell and cognitive ability the Grover Counter test [ 23 ]were obtained independent of the doctor by native isiZulu speaking trained mid-level psychological assessors trained by an experienced child psychologist.
The Grover Counter test has been developed and validated for the South African population [ 24 , 25 ]. Comparisons made between HIV positive and HIV negative children were conducted using independent sample t-tests for continuous variables and chi-square tests for categorical variables.
Odds ratios and confidence intervals were calculated to assess strength of association.
Children with any health issues, including HIV or a probable disability, were referred to local services for care, as described elsewhere [ 26 ]. The door-to-door survey identified 14, households and 2, children ages 4—6 years old who were eligible for the study.
During the household assessment, 1, children were screened with the TQ in their homes during Stage 1 and among these, reported to the study center for Stage 2 assessment Fig 1. During the assessment, Of note, only 20 children were previously known to be HIV positive less than a third and 18 of these were receiving ART.
Among children who underwent HIV testing, also completed the standardized disabilities assessment by the medical doctor including 61 of the 62 HIV positive children and children who tested negative for HIV.
Characteristics of the children with information on their HIV status and disability are presented in Table 1. Nearly half None of the differences between HIV positive and HIV negative children with respect to age, school enrollment or caregiver arrangement achieved statistical significance.
More than two thirds A third The high HIV prevalence among participating caregivers is in line with the HIV prevalence reported in KwaZulu-Natal province at the time that the study was conducted [ 15 , 27 ]. Table 3 presents a comparison of disability status as determined by the TQ screen stratified by HIV status.
Scores were not summarized for individuals with missing information on at least one item. Nearly half of the children Among 61 HIV positive children 24 Whereas among HIV-negative children Caregivers of HIV positive children were nearly 4 times more likely to report that their child was delayed in sitting, standing or walking OR 3.
Children with uncertain status were combined with the other disability groups because the medical doctor was unable to complete the disability assessment for a number of domains as a result of the child being aggressive, uncooperative or shy.
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Receiving an uncertain diagnosis occurred among a higher proportion of HIV positive children than HIV negative children data available from authors.
Table 4 also presents a comparison of cognition and language delay as determined by the Grover Counter test and the Reynell, respectively, which were conducted independently of the medical assessment by mid-level psychological assessors trained by an experienced child psychologist -level, stratified by HIV status. TQ screening results were collapsed in this way because the TQ was developed to identify serious disability and it has been shown to be a valid screening tool for identifying the presence of disability not necessarily specific types of disability [ 11 — 13 , 18 , 20 ].
Children where the doctor was uncertain whether there was a disability were excluded from this analysis. The results in Table 5 can be used to calculate the sensitivity, specificity, negative and positive predictive value of the TQ for detection of mild disability vs.
Thirteen Two HIV positive children with negative TQ screens were determined by the medical doctor to have a mild disability, including 1 child with abnormal vision and 1 child with abnormal vision and delayed fine motor skills. The positive predictive value was Three 5.
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These numbers were used to calculate sensitivity, specificity, negative and positive predictive value of the TQ for detecting serious disability vs. Among 24 HIV positive children with a positive TQ screen and either serious or no disability , 21 were found at medical assessment to have no disability.
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There were no HIV positive children with a negative TQ result that were determined to have a serious disability i. Therefore, among HIV-positive children, the sensitivity and specificity of the TQ for serious disability was Among HIV-negative children with a positive TQ screen and either serious or no disability , were found at medical assessment to have no disability. There were 4 HIV negative children with a negative TQ screen who were found at medical assessment to have a serious disability i.
Therefore, among HIV-negative children, the sensitivity and specificity of the TQ for serious disability was The positive predictive value was 9.
In this first report of the use of the TQ screen to validate its use in HIV-positive children in a low resource setting, a high percentage of children screened positive for disability.
We identified a high yield 4. There were elevated levels of neurodisability overall and more children with several types of disability among HIV-positive children. The findings of the medical doctor were largely corroborated by structured tests by the independent mid-level assessors. Overall, the TQ was found to have high sensitivity for detecting serious developmental disabilities in children with and without HIV.
However, the low specificity and positive predictive values make it important to consider whether screening with the TQ would be an efficient use of resources. This is also the first report of the use of the TQ screen in the isiZulu language. The proportion who screened positive among both HIV positive and HIV negative children in this study are among the highest reported in population-based studies.
Gross motor concerns were especially prominent including: delays in learning to sit and stand, difficulty walking or moving arms, and weakness. Gross motor problems were especially prominent, including delays in learning to sit and stand, difficulty walking or weakness in the arms or legs.
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The reason for these differences is not known nor can comparisons be made of the rate and types of underlying disabilities, as no additional assessment beyond TQ screening were conducted in the Malawi study [ 29 ].
We observed a higher proportion of disability among HIV positive children, as detected by the TQ screen. Hearing and speech disability, while relatively high in general, was also more prevalent among children with HIV, as assessed by the TQ screen, the medical doctor assessment and OAE and Tympanometry in the case of impaired hearing.
Our findings of high prevalence of disability among HIV positive children are comparable to other published reports from sub-Saharan Africa. For example, the prevalence of disabilities that we observed are comparable to a population-based study among children in a Tsonga-speaking area of South Africa that also used the TQ screen, which reported a 3.
Differences between what we observed and other studies on developmental disability conducted in sub-Saharan Africa are likely due to differences among the samples in terms of age, sociodemographic characteristics and other determinants, as well as differences in terms of how disability was assessed. For example, motor delay is considerably lower in the present study as determined by medical assessment than results reported among 30—72 month old HIV positive children from Kinshasa [ 31 ].
Differences in this case are likely due to the inclusion of slightly younger children in the Kinshasa study and their use of a different measure the Peabody Developmental motor scales. Higher rates of mental and psychomotor developmental delay were reported in a cohort of children less than 18 months old who were born to HIV-positive mothers in Tanzania [ 32 ].