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Assessing general and autism-relevant quality of life in autistic adults: A psychometric investigation using item response theory.

ABSTRACT: Although many interventions and services for autistic people have the ultimate goal of improving quality of life (QoL), there is relatively little research on how best to assess this construct in the autistic population, and existing scales designed for non-autistic individuals may not assess all meaningful facets of QoL in the autistic population. To address this need, the autism spectrum QoL form (ASQoL) was recently developed as a measure of the autism-relevant quality of life. However, the psychometrics of the ASQoL have not been examined beyond the authors' initial validation study, and important properties such as measurement invariance/differential item functioning (DIF) have not yet been tested. Using data from 700 autistic adults recruited from the Simons Foundation's SPARK cohort, the current study sought to perform a comprehensive independent psychometric evaluation of the ASQoL using item response theory, comparing its performance to a newly-proposed brief measure of general QoL (the WHOQOL-4). Our models revealed substantial DIF by sex and gender in the ASQoL, which caused ASQoL scores to grossly underestimate the self-reported QoL of autistic women. Based on a comparison of latent variable means, we demonstrated that observed sex/gender differences in manifest ASQoL scores were the result of statistical artifacts, a claim that was further supported by the lack of significant group differences on the sex/gender-invariant WHOQOL-4. Our findings indicate that the ASQoL composite score is psychometrically problematic in its current form, and substantial revisions may be necessary before valid and meaningful inferences can be made regarding autism-relevant aspects of QoL. LAY SUMMARY: Quality of life (QoL) is an extremely important outcome for autistic people, but many of the tools that are used to measure it does not take into account how QoL may be different for autistic people. Using data from 700 autistic adults, we examined the measurement properties of the autism spectrum quality of life form (ASQoL), a new measure of QoL designed specifically for autistic people. Our results indicate that the ASQoL shows a pronounced sex/gender bias, which causes it to underestimate QoL in autistic women. This bias needs to be eliminated before the ASQoL can be successfully used to measure QoL in the autistic population.

SUBMITTER: Williams ZJ

PROVIDER: S-EPMC8647037 | biostudies-literature |

REPOSITORIES: biostudies-literature

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Project description:BackgroundAlexithymia, a personality trait characterized by difficulties interpreting emotional states, is commonly elevated in autistic adults, and a growing body of literature suggests that this trait underlies several cognitive and emotional differences previously attributed to autism. Although questionnaires such as the 20-item Toronto Alexithymia Scale (TAS-20) are frequently used to measure alexithymia in the autistic population, few studies have investigated the psychometric properties of these questionnaires in autistic adults, including whether differential item functioning (I-DIF) exists between autistic and general population adults.MethodsThis study is a revised version of a previous article that was retracted due to copyright concerns (Williams and Gotham in Mol Autism 12:1-40). We conducted an in-depth psychometric analysis of the TAS-20 in a large sample of 743 cognitively able autistic adults recruited from the Simons Foundation SPARK participant pool and 721 general population controls enrolled in a large international psychological study. The factor structure of the TAS-20 was examined using confirmatory factor analysis, and item response theory was used to generate a subset of the items that were strong indicators of a "general alexithymia" factor. Correlations between alexithymia and other clinical outcomes were used to assess the nomological validity of the new alexithymia score in the SPARK sample.ResultsThe TAS-20 did not exhibit adequate model fit in either the autistic or general population samples. Empirically driven item reduction was undertaken, resulting in an 8-item general alexithymia factor score (GAFS-8, with "TAS" no longer referenced due to copyright) with sound psychometric properties and practically ignorable I-DIF between diagnostic groups. Correlational analyses indicated that GAFS-8 scores, as derived from the TAS-20, meaningfully predict autistic trait levels, repetitive behaviors, and depression symptoms, even after controlling for trait neuroticism. The GAFS-8 also presented no meaningful decrement in nomological validity over the full TAS-20 in autistic participants.LimitationsLimitations of the current study include a sample of autistic adults that was majority female, later diagnosed, and well educated; clinical and control groups drawn from different studies with variable measures; only 16 of the TAS-20 items being administered to the non-autistic sample; and an inability to test several other important psychometric characteristics of the GAFS-8, including sensitivity to change and I-DIF across multiple administrations.ConclusionsThese results indicate the potential of the GAFS-8 to robustly measure alexithymia in both autistic and non-autistic adults. A free online score calculator has been created to facilitate the use of norm-referenced GAFS-8 latent trait scores in research applications (available at https://asdmeasures.shinyapps.io/alexithymia ).

Project description:BackgroundAlexithymia, a personality trait characterized by difficulties interpreting one's own emotional states, is commonly elevated in autistic adults, and a growing body of literature suggests that this trait underlies a number of cognitive and emotional differences previously attributed to autism, such as difficulties in facial emotion recognition and reduced empathy. Although questionnaires such as the twenty-item Toronto Alexithymia Scale (TAS-20) are frequently used to measure alexithymia in the autistic population, few studies have attempted to determine the psychometric properties of these questionnaires in autistic adults, including whether differential item functioning (I-DIF) exists between autistic and general population adults.MethodsWe conducted an in-depth psychometric analysis of the TAS-20 in a large sample of 743 verbal autistic adults recruited from the Simons Foundation SPARK participant pool and 721 general population controls enrolled in a large international psychological study (the Human Penguin Project). The factor structure of the TAS-20 was examined using confirmatory factor analysis, and item response theory was used to further refine the scale based on local model misfit and I-DIF between the groups. Correlations between alexithymia and other clinical outcomes such as autistic traits, anxiety, and quality-of-life were used to assess the nomological validity of the revised alexithymia scale in the SPARK sample.ResultsThe TAS-20 did not exhibit adequate global model fit in either the autistic or general population samples. Empirically driven item reduction was undertaken, resulting in an eight-item unidimensional scale (TAS-8) with sound psychometric properties and practically ignorable I-DIF between diagnostic groups. Correlational analyses indicated that TAS-8 scores meaningfully predict autistic trait levels, anxiety and depression symptoms, and quality of life, even after controlling for trait neuroticism.LimitationsLimitations of the current study include a sample of autistic adults that was overwhelmingly female, later-diagnosed, and well-educated; clinical and control groups drawn from different studies with variable measures; and an inability to test several other important psychometric characteristics of the TAS-8, including sensitivity to change and I-DIF across multiple administrations.ConclusionsThese results indicate the potential of the TAS-8 as a psychometrically robust tool to measure alexithymia in both autistic and non-autistic adults. A free online score calculator has been created to facilitate the use of norm-referenced TAS-8 latent trait scores in research applications (available at http://asdmeasures.shinyapps.io/TAS8_Score ).

Project description:BackgroundThe investigation of patient-reported outcomes and psycho-oncological interventions mainly focuses on psychological distress or psychopathology. However, the recognition of the equal importance of positive mental health (PMH) has increased lately. The PMH-scale is a brief questionnaire allowing to assess well-being in individuals in the general population and in patients. Previous studies evaluated the psychometric properties of the PMH-scale using classical test theory (CTT). This study is the first to investigate the PMH-scale in patients with cancer using item analysis according to the Rasch model.MethodsIn total, N = 357 cancer patients participated in the study. A Rasch analysis of the PMH-scale was conducted including testing of unidimensionality, local independence, homogeneity and differential item functioning (DIF) with regard to age, gender, type of cancer, the presence of metastases, psycho-oncological support, and duration of disease. Additionally, the ordering of the item thresholds as well as the targeting of the scale were investigated.ResultsAfter excluding one misfitting item and accounting for local dependence by forming superitems, a satisfactory overall fit to the Rasch model was established (χ2 = 30.34, p = 0.21). The new PMH-8 scale proved to be unidimensional, and homogeneity of the scale could be inferred. All items showed ordered thresholds, there was no further item misfit. DIF was found for age, but as the impact of DIF was not substantial, no adjustment related to the age-DIF had to be made. The Person Separation Index (PSI = 0.89) was excellent, indicating excellent discriminatory power between different levels of positive mental health. Overall, the targeting of the PMH-8 was good for the majority of the present sample. However, at both ends of the scale item thresholds are missing as indicated by a slight floor effect (1.4%) and a considerable ceiling effect (9.8%).ConclusionsOverall, the results of the analysis according to the Rasch model support the use of the revised PMH-scale in a psycho-oncological context.

Project description:BACKGROUND:Brief screening instruments focusing on autism spectrum disorder (ASD) that can be administered in primary care are scarce; there is a need for shorter and more precise instruments. The Autism-Tics, AD/HD and other Comorbidities inventory (A-TAC) has previously been validated for ASD reporting excellent validity. This study aims to determine the psychometric properties of each item in the ASD domain (17 items) in the A-TAC using item response theory (IRT), and thereby construct and validate a short form that could be used as a screening instrument in the general population. METHODS:Since 2004, parents of all 9-year-old Swedish twins have been invited to participate in a telephone interview in the Child and Adolescent Twin Study in Sweden (CATSS). The CATSS is linked to the National Patient Register (NPR), which includes data from in- and outpatient care. Data on ASD (A-TAC) collected in CATSS were compared with diagnoses from the NPR. Diagnoses that had been made both before (previous validity) and after (predictive validity) the interviews were included. The sample was divided into a developmental sample and a validation sample. An IRT model was fitted to the developmental sample and item parameters were used to select a subset of items for the short form. The performance of the proposed short form was examined in the validation sample by the use of receiver operation characteristic curves. RESULTS:Four items which were able to discriminate among individuals with more autism traits were deemed sufficient for use in the short form. The values of the area under the receiver operating characteristic curve for a clinical diagnosis of ASD was .95 (previous validity) and .72 (predictive validity). CONCLUSIONS:The proposed short form with 4 out of the original 17 items from A-TAC, showed excellent previous validity while the predictive validity was fair. The validity of the short form was in agreement with previous validations of the full ASD domain. The short form can be a valuable screening instrument in primary care settings in order to identify individuals in need for further assessment and for use in epidemiological studies.

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Assessing general and autism-relevant quality of life in autistic adults: A psychometric investigation using item response theory.

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