Purpose To investigate the level of agreement between child self-reports and parent proxy-reports of the health-related quality of life (HRQoL) in boys with Duchenne muscular dystrophy (DMD) using both classical test theory (CTT) and Rasch analysis. Methods A total of 63 boys with DMD and their parents completed the pediatric quality of life inventory version 4.0 child self-report and parent proxy-report of HRQoL, respectively. The data were analyzed using both the CTT (scale-score level) and Rasch analysis (item-level). Results The intraclass correlation coefficient (ICC, scale-score level) between children and parents showed good to moderate agreement, although parents consistently underestimated their child HRQoL. In Rasch analysis (item-level), 1 out of 8 items was significantly different between children and parents in the physical health scale. Also, 3 out of 15 items were significantly different between those two groups in the psychosocial health scale. Conclusions By applying both scale-score and item-level analyses, our study seeks to broaden the understanding of the discrepancy of the ratings between child self-reports and parent proxy-reports. The findings could provide further information about the decision-making process when selecting therapy and care programs.
The Rasch equating method successfully created three crosswalks between the FIM motor items and K-MBI, with the equated test items demonstrating good psychometrics. The crosswalks would address the incomparable scoring systems between the FIM motor items and K-MBI. Implications for Rehabilitation The three crosswalk tables (scoring tables) would allow clinicians to compare or translate a patient's motor scores between the FIM and K-MBI. The crosswalk tables would allow health-care administrators to track patients' functional status across various rehabilitation facilities that exclusively use the FIM or K-MBI.
ObjectiveTo demonstrate the clinical application of the Korean version of the Modified Barthel Index (K-MBI) using Rasch analysis.MethodsA total of 276 patients with neurological disorders were assessed with the K-MBI in outpatient clinics. The Rasch partial-credit model was used to generate a keyform based on investigating the psychometric properties of the K-MBI, including dimensionality, precision (person strata and reliability), and hierarchical item difficulty. The Minimal Detectable Change (MDC) in item difficulty was used to establish right-challenging treatment goals and long-term treatment plans.ResultsThe findings demonstrated that the Korean version of the MBI satisfied the assumption of unidimensionality. It also showed a hierarchical structure in terms of item difficulty, good reliability (Cronbach alpha, 0.92), and approximately five distinct person strata (4.6). The MDC (raw score, 20.1) of the item difficulty of the test items demonstrated equivalent cutoff scores for targeted short-term treatment goals on the keyform, a Rasch-derived display of patient responses. Long-term treatment goals were identified based on the test items of the keyform.ConclusionsThe findings suggest that a Rasch keyform can be applied to clinical practice in Korean settings by identifying clinically and statistically meaningful test items and their step thresholds as short- and long-term goals.
PURPOSE. We conducted a systematic review examining the extent to which pediatric intervention research recently published in the American Journal of Occupational Therapy reflects occupational therapy's holistic occupation-based tenets. METHOD. We surveyed 10 systematic reviews and analyzed 38 single effectiveness studies for intervention approach, type, level of environmental targeting, level of occupational task and participation practice, and measures used. RESULTS. Of the 38 single effectiveness studies, 12 (32%) explicitly incorporated both environmental targets of intervention and practice of complex or in vivo occupational tasks, with steady increases during the 2009-2013 time frame. CONCLUSION. In the area of children and youth, occupational therapy is making steady gains in reflecting and demonstrating the effectiveness of the profession's holistic, occupation-based tenets. Occupational therapy researchers must be mindful to ensure that despite the reductionist nature of intervention research, interventions reflect the profession's holistic understanding of the interplay between the child, environment, and occupations.
Purpose: Barth syndrome is an X-linked rare disorder that typically affects only males. This study investigates 1) agreement between child self-reports and parent proxy-reports of HRQoL in boys with Barth syndrome and 2) relationship between parental HRQoL and parent proxy-reports of HRQoL for the child. Materials and methods: Twenty-eight boys with Barth syndrome and their parents participated in this study. The PedsQL™ 4.0 and the PedsQL™ Family Impact Module were used to measure HRQoL of the boys, and the parents’ HRQoL, respectively. The Intraclass Correlation Coefficient was used to test agreement between the child self-reports and parent proxy-reports of HRQoL. The Spearman correlation coefficient was used to test the relationship between parental HRQoL and parent proxy-reports of HRQoL for the child. Results: The agreement between the child self-reports and the parent proxy-reports showed moderate-to-good agreement. Higher parental HRQoL was significantly related to higher ratings of the parents on their children’s HRQoL ( p < .05). Conclusions: This study broadens understanding of HRQoL of boys with Barth syndrome using both child self-reports and parent proxy-reports. The findings indicate that the parent proxy-report of HRQoL should be used in conjunction with the child self-report when making client-centered health decisions.
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