Dataset Information

Observational and Reported Measures of Language and Pragmatics in Young People with Autism: A Comparison of Respondent Data and Gender Profiles.

ABSTRACT: Female children with autism spectrum disorder (FwASD) and performance intelligence quotient (PIQ) over 70 were compared with male children with ASD (MwASD) and typically developing (TD) controls (age 8-11 years) using a range of language and pragmatic measures. Functional ability was assessed using clinical observations and parent, teacher and self-reports. Results were compared between measures, and with direct assessments of language and pragmatics, in order to identify potential biases. This study found that FwASD performed better than MwASD but worse than TD controls on clinical observations of pragmatic ability. FwASD also performed worst overall on a parental measure of emotions. Additionally, there were patterns of differences between clinician, parent, teacher and self- reports and direct assessments, which indicate the need for assessment data to be collected from multiple informants. Findings also have implications for the accurate identification of ASD in females and appropriate provision of support.

SUBMITTER: Sturrock A

PROVIDER: S-EPMC7010622 | biostudies-literature | 2020 Mar

REPOSITORIES: biostudies-literature

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Observational and Reported Measures of Language and Pragmatics in Young People with Autism: A Comparison of Respondent Data and Gender Profiles.

Sturrock Alexandra A Marsden Antonia A Adams Catherine C Freed Jenny J

Journal of autism and developmental disorders 20200301 3

Female children with autism spectrum disorder (FwASD) and performance intelligence quotient (PIQ) over 70 were compared with male children with ASD (MwASD) and typically developing (TD) controls (age 8-11 years) using a range of language and pragmatic measures. Functional ability was assessed using clinical observations and parent, teacher and self-reports. Results were compared between measures, and with direct assessments of language and pragmatics, in order to identify potential biases. This ...[more]

PMID: 31758367

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Project description:BackgroundThe Rapkin and Schwartz appraisal theory and measure provided a path toward documenting response-shift effects and describing individual differences in ways of thinking about quality of life (QOL) that distinguished people in different circumstances. Recent work developed and validated the QOL Appraisal Profileversion 2 (QOLAPv2), an 85-item measure that taps response-shift-detection domains of Frame of Reference, Standards of Comparison, Sampling of Experience, and Combinatory Algorithm. Recent theoretical work proposed that appraisal measurement constitutes a new class of measurement (idiometric), distinct from psychometric and clinimetric. To validate an idiometric measure, one would document that its items reflect different circumstances and population characteristics, and explain variance in QOL. The present work sought to develop idiometric short-forms of the QOLAPv2 item bank by examining which items were most informative, retaining the appraisal-domain structure.MethodsThis secondary analysis (n = 1481) included chronically-ill patients and their caregivers from a longitudinal web-based survey (mean follow-up 16.6 months). Data included the QOLAPv2, the Center for Disease Control Healthy Days Core Module, the PROMIS-10 Global Health, and demographic/medical variables. Appraisal items were measured at baseline (relevant to understanding cognitive appraisal processes); and with change scores (sensitive to response-shift effects). Multivariate analysis of covariance examined what demographic and health-status change variables were reflected by each of 85 appraisal items (in five sets), as dependent variables, and other demographic/medical variables. Multiple linear regression examined how appraisal items explained variance in global physical- and mental-health change, after covariate adjustment. A tally summarized item performance across all five sets of cross-sectional and longitudinal analyses.ResultsThe vast majority (i.e., 80%) of the QOLAPv2 items performed well across the analyses presented. Using a relatively strict criterion of explaining meaningful variance across 60% of analyses, one would retain 68 items. A more lenient criterion (40%) would retain 71.ConclusionsThe present study provides heuristics to support investigators' creating 'discretionary' QOLAPv2 short-forms to fit their study aim and amplifying individual differences in the cognitive processes underlying QOL. This approach enables adapting the measure to the study population, as per the expectation that respondent populations differ in the predominant cognitive processes used.

Project description:ImportanceGender-affirming care is a key clinical area that can benefit from implementation of patient-reported outcome measures (PROMs). Identifying barriers to and enablers of PROM implementation is needed to develop an evidence-based implementation strategy.ObjectiveTo identify (1) PROMs previously implemented for gender-affirming care and constructs measured, (2) how patients completed PROMs and how results were reported and used, and (3) barriers to and enablers of PROM implementation.Evidence reviewIn this systematic review, PubMed, Embase, MEDLINE, PsycINFO, CINAHL, and Web of Science were searched from inception to October 25, 2021, and updated on December 16, 2022. Gray literature was searched through gray literature database, online search engine, and targeted website searching. Inclusion criteria were (1) original articles of (2) a formally developed PROM or ad hoc instrument administered for gender-affirming care to (3) patients accessing gender-affirming care. The Critical Appraisal Skills Programme tool was used to evaluate quality of included studies. This review was registered on PROSPERO (CRD42021233080).FindingsIn total, 286 studies were included, representing 85 395 transgender and nonbinary patients from more than 30 countries. A total of 205 different PROMs were used in gender-affirming care. No studies described using an implementation science theory, model, or framework to support PROM deployment. Key barriers to PROM implementation included issues with evidence strength and quality of the PROM, engaging participants, and PROM complexity. Key enablers of PROM implementation included using PROMs validated for gender-affirming care, implementing PROMs able to be deployed online or in person, implementing PROMs that are shorter and reduce patient burden, engaging key stakeholders and participants as part of developing an implementation plan, and organizational climate.Conclusions and relevanceIn this systematic review of barriers to and enablers of PROM implementation in gender-affirming care, PROM implementation was inconsistent and did not follow evidence-based approaches in implementation science. There was also a lack of patient input in creating implementation strategies, suggesting a need for patient-centered approaches to PROM implementation. Frameworks created from these results can be used to develop evidence-based PROM implementation initiatives for gender-affirming care and have potential generalizability for other clinical areas interested in implementing PROMs.

Dataset Information

Observational and Reported Measures of Language and Pragmatics in Young People with Autism: A Comparison of Respondent Data and Gender Profiles.

Publications

Observational and Reported Measures of Language and Pragmatics in Young People with Autism: A Comparison of Respondent Data and Gender Profiles.

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