Lydia Edward Raj

Bio: Lydia Edward Raj is an academic researcher from Christian Medical College & Hospital. The author has contributed to research in topics: Intraclass correlation & Intra-rater reliability. The author has an hindex of 1, co-authored 2 publications receiving 53 citations.

Diagnostic accuracy, reliability and validity of Childhood Autism Rating Scale in India

Abstract: Background Since there is no established measure for autism in India, we evaluated the diagnostic accuracy, reliability and validity of Childhood Autism Rating Scale (CARS).

Reliability of Box and Block Test for manual dexterity in patients with rheumatoid arthritis: a pilot study.

Abstract: Objective This study is aimed to determine the reliability of the Box and Block (B&B) Test for manual dexterity of upper extremity function in patients with rheumatoid arthritis (RA) and to compare the results with age- and sex-matched healthy controls, and also with available normative data. Methods The reliability of B&B Test was assessed within and between testers using the intraclass correlation coefficient (ICC) in patients with RA attending rheumatology clinics of Christian Medical College Hospital, India. The dexterity scores of patients were then compared with age- and sex-matched controls and the Mathiowetz's population-based normative data by Student's independent t-test. Results The interrater and intrarater reliability of the BB contralateral hand 52.65 vs. 65.6, P < 0.001) and population-based normative score (dominant hand 54.87 vs. 80.02, P < 0.001; contralateral hand 52.65 vs. 77.23; P < 0.001). The control group scores were also lower than the normative data. Higher age of patient, longer disease duration and higher disease activity reflected by Disease Activity Score of 28 joints (DAS-28) also correlated well with lower dexterity score. Conclusions The B&B Test is a reliable tool for assessing upper extremity function in patients with RA and the dexterity scores are lower for RA patients. The scores had correlation with age, disease duration and disease activity.

Childhood Autism Rating Scale

Abstract: The CARS-2 is an update of the Childhood Autism Rating Scale (CARS), an older and widely-used rating scale for autism. The original CARS was developed primarily with individuals with comorbid intellectual functioning and was criticized for not accurately identify higher functioning individuals with ASD. The CARS-2 retained the original CARS form for use with younger or lower functioning individuals (now renamed the CARS2-ST for “Standard Form”), and it developed a separate rating scale for use with higher functioning individuals (named the CARS2-HF for “High Functioning”). Clinically, the original CARS was often misused as a parent questionnaire; it was designed as a clinician rating scale to be completed after a direct observation of the child by a professional familiar with autism who had also obtained some brief training on how to rate the CARS items. The CARS-2 retains this same format. Information from parents can be obtained with the CARS2-QPC (Questionnaire of Parent Concerns), an unscored form for parents to record observations.

Systematic review of tools to measure outcomes for young children with autism spectrum disorder

Abstract: BACKGROUND: The needs of children with autism spectrum disorder (ASD) are complex and this is reflected in the number and diversity of outcomes assessed and measurement tools used to collect evidence about children's progress. Relevant outcomes include improvement in core ASD impairments, such as communication, social awareness, sensory sensitivities and repetitiveness; skills such as social functioning and play; participation outcomes such as social inclusion; and parent and family impact. OBJECTIVES: To examine the measurement properties of tools used to measure progress and outcomes in children with ASD up to the age of 6 years. To identify outcome areas regarded as important by people with ASD and parents. METHODS: The MeASURe (Measurement in Autism Spectrum disorder Under Review) research collaboration included ASD experts and review methodologists. We undertook systematic review of tools used in ASD early intervention and observational studies from 1992 to 2013; systematic review, using the COSMIN checklist (Consensus-based Standards for the selection of health Measurement Instruments) of papers addressing the measurement properties of identified tools in children with ASD; and synthesis of evidence and gaps. The review design and process was informed throughout by consultation with stakeholders including parents, young people with ASD, clinicians and researchers. RESULTS: The conceptual framework developed for the review was drawn from the International Classification of Functioning, Disability and Health, including the domains 'Impairments', 'Activity Level Indicators', 'Participation', and 'Family Measures'. In review 1, 10,154 papers were sifted - 3091 by full text - and data extracted from 184; in total, 131 tools were identified, excluding observational coding, study-specific measures and those not in English. In review 2, 2665 papers were sifted and data concerning measurement properties of 57 (43%) tools were extracted from 128 papers. Evidence for the measurement properties of the reviewed tools was combined with information about their accessibility and presentation. Twelve tools were identified as having the strongest supporting evidence, the majority measuring autism characteristics and problem behaviour. The patchy evidence and limited scope of outcomes measured mean these tools do not constitute a 'recommended battery' for use. In particular, there is little evidence that the identified tools would be good at detecting change in intervention studies. The obvious gaps in available outcome measurement include well-being and participation outcomes for children, and family quality-of-life outcomes, domains particularly valued by our informants (young people with ASD and parents). CONCLUSIONS: This is the first systematic review of the quality and appropriateness of tools designed to monitor progress and outcomes of young children with ASD. Although it was not possible to recommend fully robust tools at this stage, the review consolidates what is known about the field and will act as a benchmark for future developments. With input from parents and other stakeholders, recommendations are made about priority targets for research. FUTURE WORK: Priorities include development of a tool to measure child quality of life in ASD, and validation of a potential primary outcome tool for trials of early social communication intervention. STUDY REGISTRATION: This study is registered as PROSPERO CRD42012002223. FUNDING: The National Institute for Health Research Health Technology Assessment programme.

Updated report on tools to measure outcomes of clinical trials in fragile X syndrome.

Abstract: Fragile X syndrome (FXS) has been the neurodevelopmental disorder with the most active translation of preclinical breakthroughs into clinical trials. This process has led to a critical assessment of outcome measures, which resulted in a comprehensive review published in 2013. Nevertheless, the disappointing outcome of several recent phase III drug trials in FXS, and parallel efforts at evaluating behavioral endpoints for trials in autism spectrum disorder (ASD), has emphasized the need for re-assessing outcome measures and revising recommendations for FXS. After performing an extensive database search (PubMed, Food and Drug Administration (FDA)/National Institutes of Health (NIH)’s www.ClinicalTrials.gov , etc.) to determine progress since 2013, members of the Working Groups who published the 2013 Report evaluated the available outcome measures for FXS and related neurodevelopmental disorders using the COSMIN grading system of levels of evidence. The latter has also been applied to a British survey of endpoints for ASD. In addition, we also generated an informal classification of outcome measures for use in FXS intervention studies as instruments appropriate to detect shorter- or longer-term changes. To date, a total of 22 double-blind controlled clinical trials in FXS have been identified through www.ClinicalTrials.gov and an extensive literature search. The vast majority of these FDA/NIH-registered clinical trials has been completed between 2008 and 2015 and has targeted the core excitatory/inhibitory imbalance present in FXS and other neurodevelopmental disorders. Limited data exist on reliability and validity for most tools used to measure cognitive, behavioral, and other problems in FXS in these trials and other studies. Overall, evidence for most tools supports a moderate tool quality grading. Data on sensitivity to treatment, currently under evaluation, could improve ratings for some cognitive and behavioral tools. Some progress has also been made at identifying promising biomarkers, mainly on blood-based and neurophysiological measures. Despite the tangible progress in implementing clinical trials in FXS, the increasing data on measurement properties of endpoints, and the ongoing process of new tool development, the vast majority of outcome measures are at the moderate quality level with limited information on reliability, validity, and sensitivity to treatment. This situation is not unique to FXS, since reviews of endpoints for ASD have arrived at similar conclusions. These findings, in conjunction with the predominance of parent-based measures particularly in the behavioral domain, indicate that endpoint development in FXS needs to continue with an emphasis on more objective measures (observational, direct testing, biomarkers) that reflect meaningful improvements in quality of life. A major continuous challenge is the development of measurement tools concurrently with testing drug safety and efficacy in clinical trials.

Diagnostic tests for autism spectrum disorder (ASD) in preschool children

Abstract: Background Autism spectrum disorder (ASD) is a behaviourally diagnosed condition. It is defined by impairments in social communication or the presence of restricted or repetitive behaviours, or both. Diagnosis is made according to existing classification systems. In recent years, especially following publication of the Diagnostic and Statistical Manual of Mental Disorders ‐ Fifth Edition (DSM‐5; APA 2013), children are given the diagnosis of ASD, rather than subclassifications of the spectrum such as autistic disorder, Asperger syndrome, or pervasive developmental disorder ‐ not otherwise specified. Tests to diagnose ASD have been developed using parent or carer interview, child observation, or a combination of both.

Assessing autism with DSM-IV and DSM-5 criteria using the Childhood Autism Rating Scale (CARS)

Abstract: Introduction. The Childhood Autism Rating Scale (CARS) is an observational instrument for assessing autism. It is the most widely used instrument for the diagnosis of autism in Mexico. Objective. To study the psychometric properties in the Mexican population using DSM-IV and DSM-5 criteria. Method. This is an observational, cross-sectional study. Participants (N = 137) were 78.8% male, with an age range between 2 and 18 years, mean 8.5. Parents completed the M-CHAT, the ABC, the ADI-R, and semi-structured clinical interviews with DSM-IV. We inferred DSM-5 criteria by selecting atypical sensory items from the ABC. Results. The internal consistency for the total CARS items was α = .88. The concurrent validity of the CARS and the DSM-IV criteria showed a Spearman coefficient of correlation of rs = .62. The convergent validity with the ADI-R showed moderate correlations, rs = .32 to .61, with the DSM-IV k = .33 and DSM-5 k = .36. The concordance with the DSM-IV and DSM-5 was 71% and 84.5%, sensitivity was 58.1% and 46-7%, and specificity 76.6% and 90.5%, respectively. The discriminant analysis showed that the CARS correctly classified 97% of children with autism, 70% with pervasive developmental disorders not otherwise specified (PDD-NOS), and 12.5% with Asperger’s syndrome. Discussion and conclusion. The Mexican version of the CARS is a valid and reliable instrument for diagnosing autism in Mexican children and adolescents.