Development and psychometric evaluation of a psychosocial quality-of-life questionnaire for individuals with autism and related developmental disorders.
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ABSTRACT:
SUBMITTER: Markowitz LA
PROVIDER: S-EPMC6296263 | biostudies-literature | 2016 Oct
REPOSITORIES: biostudies-literature
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Development and psychometric evaluation of a psychosocial quality-of-life questionnaire for individuals with autism and related developmental disorders.
Markowitz Leslie A LA Reyes Charina C Embacher Rebecca A RA Speer Leslie L LL Roizen Nancy N Frazier Thomas W TW
Autism : the international journal of research and practice 20151210 7
This study investigated the psychometric properties of the Child and Family Quality of Life scale, a measure of psychosocial quality of life in those with autism and related developmental disorders. Parents of 212 children suspected of autism spectrum disorder completed the Child and Family Quality of Life prior to a diagnostic evaluation. Results indicated that the Child and Family Quality of Life measured six unique quality-of-life constructs (child, family/caregiver, financial, external suppo ...[more]
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Project description:BackgroundThere is considerable burden of illness in hereditary angioedema (HAE). However, instruments to assess health-related quality of life (HRQoL) in HAE are limited. The Angioedema Quality of Life Questionnaire (AE-QoL) was developed to measure HRQoL in patients with recurrent angioedema; the validity of the AE-QoL in patients with HAE is described.MethodsTo identify disease-related experiences with a focus on the impact of HAE on HRQoL, interviews were conducted with a group of clinician experts and patients with HAE from Canada, France, Germany, Spain, the United Kingdom, and the United States, along with a targeted literature review. Concepts were mapped to the AE-QoL to assess item relevance, interpretation, and conceptual coverage. Cognitive interviews assessed item clarity and relevance. A psychometric validation was performed using data from a phase 3 trial.ResultsInterviews were conducted with seven clinicians and 40 adult patients. Patients reported 35 unique impacts of HAE on their lives, the most frequent being on work/school, social relationships, physical activities, and emotions, particularly fear/worrying and anxiety. Saturation for these impacts was reached, and all concepts covered in the AE-QoL were reported during the interviews. Patients agreed that the questionnaire items and response options were clear and relevant, and the 4-week recall period was appropriate. The psychometric validation included data from 64 patients. For AE-QoL total scores, excellent internal consistency (Cronbach's alpha > 0.90), test-retest reliability (intraclass coefficient > 0.80), convergent validity with the Sheehan Disability Scale (r = 0.663), divergent validity with the EQ-5D-5L index (r = 0.292) and EQ-VAS (r = 0.337), and known-groups validity (p < 0.0001; ɳ2 = 0.56) were demonstrated.ConclusionsQualitative and psychometric analyses showed that the AE-QoL is a reliable and valid instrument for measuring HRQoL in adult patients with HAE from six countries.
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Project description:BACKGROUND:Quality of life (QoL) is considered a key treatment outcome in bipolar disorder (BD) across research, clinical, and self-management contexts. Web-based assessment of patient-reported outcomes offer numerous pragmatic benefits but require validation to ensure measurement equivalency. A web-based version of the Quality of Life in Bipolar Disorder (QoL.BD) questionnaire was developed (QoL Tool). OBJECTIVE:This study aimed to evaluate the psychometric properties of a web-based QoL self-report questionnaire for BD (QoL Tool). Key aims were to (1) characterize the QoL of the sample using the QoL Tool, (2) evaluate the internal consistency of the web-based measure, and (3) determine whether the factor structure of the original version of the QoL.BD instrument was replicated in the web-based instrument. METHODS:Community-based participatory research methods were used to inform the development of a web-based adaptation of the QoL.BD instrument. Individuals with BD who registered for an account with the QoL Tool were able to opt in to sharing their data for research purposes. The distribution of scores and internal consistency estimates, as indicated by Cronbach alpha, were inspected. An exploratory factor analysis using maximum likelihood and oblique rotation was conducted. Inspection of the scree plot, eigenvalues, and minimum average partial correlation were used to determine the optimal factor structure to extract. RESULTS:A total of 498 people with BD (349/498, 70.1% female; mean age 39.64, SD 12.54 years; 181/498, 36.3% BD type I; 195/498, 39.2% BD type II) consented to sharing their QoL Tool data for the present study. Mean scores across the 14 QoL Tool domains were, in general, significantly lower than that of the original QoL.BD validation sample. Reliability estimates for QoL Tool domains were comparable with that observed for the QoL.BD instrument (Cronbach alpha=.70-.93). Exploratory factor analysis supported the extraction of an 11-factor model, with item loadings consistent with the factor structure suggested by the original study. Findings for the sleep and physical domains differed from the original study, with this analysis suggesting one shared latent construct. CONCLUSIONS:The psychometric properties of the web-based QoL Tool are largely concordant with the original pen-and-paper QoL.BD, although some minor differences in the structure of the sleep and physical domains were observed. Despite this small variation from the factor structure identified in the QoL.BD instrument, the latent factor structure of the QoL Tool largely reproduced the original findings and theoretical structure of QoL areas relevant to people with BD. These findings underscore the research and clinical utility of this instrument, but further comparison of the psychometric properties of the QoL Tool relative to the QoL.BD instrument is warranted. Future adaptations of the QoL Tool, including the production of an app-based version of the QoL Tool, are also discussed.
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Project description:BACKGROUND:Physiological and behavioral factors including hunger, satiety, food intake, and cravings are health determinants contributing to obesity. Patient-reported outcome (PRO) measures focused on eating-related factors provide insight into the relationships between food choice and quantity, weight change, and weight-loss treatment for individuals living with obesity. The DAILY EATS is a novel 5-item, patient-reported measure evaluating key eating-related factors (Worst and Average Hunger, Appetite, Cravings, and Satiety). METHODS:Psychometric analyses, consistent with regulatory standards, were conducted to evaluate the DAILY EATS using data from two randomized trials that included individuals with severe obesity without diabetes (NCT03486392) and with severe obesity and type 2 diabetes (NCT03586830). Additional measures included Patient Global Impression of Status (PGIS) and Patient Global Impression of Change items, Impact of Weight on Quality of Life-Lite, Ease of Weight Management, and Patient-Reported Outcomes Measurement Information System Physical Function Short Form 8b and 10a. The reliability, validity, and responsiveness of the DAILY EATS were assessed, and a scoring algorithm and thresholds to interpret meaningful score changes were developed. RESULTS:Item-level analyses of the DAILY EATS supported computation of an Eating Drivers Index (EDI), comprising the related items Worst Hunger, Appetite, and Cravings. Internal consistency (Cronbach's coefficient alphas ?0.80) and test-retest reliability (coefficients >?0.7) of the EDI were robust. Construct validity correlation patterns with other PRO measures were as hypothesized, with moderate to strong significant correlations between the EDI and PGIS-Hunger (0.30???r???0.68), PGIS-Cravings (0.33???r???0.77) and PGIS-Appetite (0.52???r???0.77). Anchor- and distribution-based analyses support reductions ranging from 1.6 to 2.1 as responder thresholds for the EDI, representing meaningful within-person improvement. CONCLUSIONS:The DAILY EATS individual items and the composite EDI are reliable, sensitive, and valid in evaluating the concepts of hunger, appetite, and cravings for use in individuals with severe obesity with or without type 2 diabetes.
| S-EPMC7683653 | biostudies-literature
Project description:Background and objectiveQuality of life (QoL) is a multi-dimensional concept and its assessment is one of important themes of care for older people. Assessing QoL in older people needs specific scales. The aim of this study was to culturally adapt and investigate the psychometric properties of the Persian version of brief Older People's Quality of Life questionnaire (OPQOL-brief) in an Iranian older population.MethodsThis methodological cross-sectional study was conducted among 525 Persian-speaking older people (aged 60 and over), living in Isfahan, Iran. Translation of the OPQOL-brief questionnaire was performed using forward-backward method. Test-retest reliability was evaluated through Intra Class Correlation (ICC) coefficient and internal consistency by using Cronbach's α. Construct validity was investigated by using exploratory factor analysis (EFA), confirmatory factor analysis (CFA), and Latent class analysis (LCA). Criterion, convergent and discriminant validities were also assessed.ResultsPersian version of the OPQOL-brief showed good test-retest reliability (ICC = 0.842, 95% CI = 0.73-0.91; P < 0.001). Persian OPQOL-brief scale demonstrated high internal consistency (Cronbach's α = 0.83). It showed good discriminant validity and differentiated old patients from healthy older individuals (P < 0.001). Construct validity based on EFA led to extraction of three dimensions ("socioeconomic", "emotional", and "physical" well-being) and the CFA confirmed the adequacy of extracted construct from EFA (CFI = 0.909, PCFI = 0.52, PNFI = 0.5, CMIN/DF = 3.012, and RMSEA = 0.08). LCA classified participants into three classes in terms of QoL level (low (16%), middle (67%), and high (17%)). Criterion validity and convergent validity revealed significant positive correlations between OPQOL-brief and physical and psychological dimensions of the SF-36.ConclusionThe Persian version of the OPQOL-brief is a reliable and valid instrument for assessing QoL with applicability in a broad range of older Persian language population.
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Project description:BACKGROUND:Assessing quality of life (QOL) in elderly needs specific instruments. The Older People's Quality of Life Questionnaire (OPQOL-35) is one of the common tools that used for measuring quality of life in elderly populations. The questionnaires contains 35 items tapping into eight domains including life overall, health, social relationships and participation, independence, control over life and freedom, home and neighborhood, psychological and emotional well-being, financial circumstances, culture and religion. This study aimed to translate and validate the OPQOL-35 in Iran. METHODS:Forward-backward procedure was applied to translate the original questionnaire from English into Persian. Then following qualitative face and content validity, a sample of elderly people completed the questionnaire. In order to evaluate the construct validity, exploratory and confirmatory factor analyses was performed. Subsequently, convergent and divergent validity of the factors were evaluated. Reliability was evaluated by performing internal consistency analysis and Intraclass Correlation Coefficients (ICC). RESULTS:In all 500 older people completed the questionnaire. The mean age of participant was 68.92 (SD?=?6.97) years, and mostly were males (66.6%). The result of exploratory factor analysis showed 8 factors with Eigen values of greater than one, which explained 67.4% of the variance observed. Confirmatory factor analysis showed acceptable fit indexes for the data [Comparative Fit Index (CFI)?=?0.92, Minimum Discrepancy Function by Degrees of Freedom divided (CMIN/DF)?=?2.832, Root Mean Square Error of Approximation (RMSEA)?=?0.067]. The convergent and divergent validity did not support three latent factors (Life overall, Independence, control over life, freedom and Psychological and emotional well-being). Convergent and divergent validity shown that construct fulfilled for the health, social relationships and participation, home and neighborhood, financial circumstances, culture and religion latent factors, however the results did not support the convergent and divergent validity for three latent factors (Life overall, Independence, control over life, freedom and Psychological and emotional well-being). Cronbach's alpha coefficient for the subscales ranged from 0.65-0.95. Test-retest reliability (ICC) of the questionnaire with two weeks interval were ranged from 0.88-0.95 indicating a good range of reliability. CONCLUSION:The findings suggest that the Iranian version of OPQOL-35 is a valid measure for assessing quality of life in elderly populations in different settings.
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| S-EPMC6220785 | biostudies-literature
Project description:Self-reports of 'hearing handicap' are available, but a comprehensive measure of health-related quality of life (HRQOL) for individuals with adult-onset hearing loss (AOHL) does not exist. Our objective was to develop and evaluate a multidimensional HRQOL instrument for individuals with AOHL.The Impact of Hearing Loss Inventory Tool (IHEAR-IT) was developed using results of focus groups, a literature review, advisory expert panel input, and cognitive interviews.The 73-item field-test instrument was completed by 409 adults (22-91 years old) with varying degrees of AOHL and from different areas of the USA.Multitrait scaling analysis supported four multi-item scales and five individual items. Internal consistency reliabilities ranged from 0.93 to 0.96 for the scales. Construct validity was supported by correlations between the IHEAR-IT scales and scores on the 36-item Short Form Health Survey, version 2.0 (SF-36v2) mental composite summary (r?=?0.32-0.64) and the Hearing Handicap Inventory for the Elderly/Adults (HHIE/HHIA) (r???-0.70).The field test provides initial support for the reliability and construct validity of the IHEAR-IT for evaluating HRQOL of individuals with AOHL. Further research is needed to evaluate the responsiveness to change of the IHEAR-IT scales and identify items for a short-form.
| S-EPMC5005284 | biostudies-literature
Project description:ObjectiveThe Menopause-Specific Quality-of-Life (MENQOL) questionnaire was developed as a specific tool to measure the health-related quality-of-life of postmenopausal women. Thus far, the Chinese version questionnaire has not been subjected to psychometric assessment with a large sample. This study aims to evaluate the validity and reliability of the Chinese version of the MENQOL specific to postmenopausal women in China.MethodsA total of 1,137 menopausal symptomatic and 491 menopausal asymptomatic women from eight cities in China were recruited using a convenience sampling method. Psychometric properties were evaluated by descriptive statistics, validity, and reliability. Reliability was assessed for each subscale of the MENQOL through internal consistency reliability with Cronbach's ? and intersubscale correlations. Item-domain correlations, principal components analysis (PCA), and confirmatory factor analysis were performed to determine construct validity. t tests were used to compare the differences between the menopausal symptomatic and asymptomatic women and to evaluate the discriminate validity. Pearson correlation coefficients were calculated between MENQOL scores and the Kupperman index to assess criterion-related validity.ResultsThe most common symptoms in Chinese menopausal symptomatic women were "experiencing poor memory" (94.4%), "feeling tired or worn out" (93.8%), "aching in muscle and joints" (89.4%), "low backache" (86.9%), "decrease in physical strength" (86.6%), "aches in back of neck or head" (86.2%), "difficulty sleeping" (83.6%), "accomplishing less than I used to" (83.4%), "feeling a lack of energy" (83.3%), "change in your sexual desire" (81%), and "hot flash" (80.7%) among others. The symptoms of "increased facial hair" were rarely seen (9.9%). The vasomotor domain, as well as psychosocial, physical, and sexual domains showed high reliability (Cronbach's ? 0.84, 0.87, 0.89, and 0.86, respectively). Item-domain correlation analysis showed that all items correlated more strongly with their own domains than with other domains. In the PCA, after deleting the "increased facial hair" item, items in the vasomotor, sexual, and psychosocial subscales loaded on their respective domains by and large, and items in the physical subscale divided into two factors. The PCA revealed a latent structure of the Chinese version of MENQOL nearly identical to the original MENQOL domains. The confirmatory factor analysis demonstrated that the questionnaire fits well with a four-domain model. The MENQOL can discriminate between menopausal symptomatic women with asymptomatic women as it showed good discriminate validity. Criterion-related validity was confirmed by a significant correlation between MENQOL scores and the Kupperman index.ConclusionsThis study showed that Chinese version of MENQOL has good psychometric properties and would be suitable to measure the health-related quality-of-life of Chinese menopausal women except for item 21 (increased facial hair).
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Project description:BackgroundThe generic self-reported Recovering Quality of Life (ReQoL) measures were developed for measuring recovery-focused health-related quality of life (HrQoL) in persons with mental health conditions. The aim of this study was to assess the psychometric properties of the German version of the ReQoL measures in patients with affective disorders in Germany.MethodsData from a patient sub-sample in a randomized controlled trial have been used (N = 393). The internal consistency and the test-retest reliability of the ReQoL measures were assessed using Cronbach's Alpha and the intra-class correlation coefficient (ICC). The concurrent validity and the known-group validity of the ReQoL measures were assessed using Pearson's Correlation coefficient and Cohen's d. The responsiveness was assessed using Glass' Δ and the standardized response mean (SRM).ResultsThe reliability among the items of the ReQoL-20 was overall excellent. The ICC of the ReQoL-20 was r = 0.70, indicating moderate test-retest reliability. The concurrent validity of the ReQoL-20 with the clinical measure PHQ-9 was strong with a correlation coefficient of r = - 0.76. The known-group validity of the ReQoL-20 using PHQ-9 cut-off points was large with an effect size of d = 1.63. The ReQoL measures were sensitive to treatment response and remission of symptoms measured by the PHQ-9 with large effect sizes/SRM.DiscussionThe psychometric properties of the ReQoL measures for the assessment of patients with affective disorders were overall good. With the ReQoL, valid and reliable measures for the assessment of recovery-focused HrQoL for persons with affective disorders are available in German language.
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Project description:BACKGROUND: Dyspepsia and irritable bowel syndrome are suitable conditions for assessment of quality of life. Their similarities justify the elaboration of a single specific questionnaire for the two conditions. AIMS: To examine the process leading to the validation of the psychometric properties of the functional digestive disorders quality of life questionnaire (FDDQL). METHODS: Initially, the questionnaire was given to 154 patients, to assess its acceptability and reproducibility, analyse its content, and reduce the number of items. Its responsiveness was tested during two therapeutic trials which included 428 patients. The questionnaire has been translated into French, English, and German. The psychometric validation study was conducted in France, United Kingdom, and Germany by 187 practitioners. A total of 401 patients with dyspepsia or irritable bowel syndrome, defined by the Rome criteria, filled in the FDDQL and generic SF-36 questionnaires. RESULTS: The structure of the FDDQL scales was checked by factorial analysis. Its reliability was expressed by a Cronbach's alpha coefficient of 0.94. Assessment of its discriminant validity showed that the more severe the functional digestive disorders, the more impaired the quality of life (p<0.05). Concurrent validity was supported by the correlation found between the FDDQL and SF-36 questionnaire scales. The final version of the questionnaire contains 43 items belonging to eight domains. CONCLUSIONS: The properties of the FDDQL questionnaire, available in French, English, and German, make it appropriate for use in clinical trials designed to evaluate its responsiveness to treatment among patients with dyspepsia and irritable bowel syndrome.
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