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Measurement properties of the EQ-5D-5L and PROPr in patients with spinal muscular atrophy

Xu, Richard Huan ; Ma, Bin ; Xin, Huanping ; Zhang, Huanyu ; Zeng, Yan ; Luo, Nan ; Dong, Dong

Health and quality of life outcomes, 2023-11, Vol.21 (1), p.1-123, Article 123 [Periódico revisado por pares]

London: BioMed Central Ltd

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Título:
Measurement properties of the EQ-5D-5L and PROPr in patients with spinal muscular atrophy
Autor: Xu, Richard Huan ; Ma, Bin ; Xin, Huanping ; Zhang, Huanyu ; Zeng, Yan ; Luo, Nan ; Dong, Dong
Assuntos: Analysis ; Anxiety ; Associations ; Atrophy ; Ceilings ; Clinical outcomes ; Cognition & reasoning ; Convergence ; Data collection ; EQ-5D ; Exercise ; Fatigue ; Functional groups ; Genetic aspects ; Health surveys ; Health-related quality of life ; Informed consent ; Measurement ; Mental depression ; Neurological disorders ; Pain ; Patients ; PROMIS ; Quality of life ; Quantitative psychology ; Questionnaires ; Rare diseases ; Social networks ; Spinal muscular atrophy ; Surveys ; Validity
É parte de: Health and quality of life outcomes, 2023-11, Vol.21 (1), p.1-123, Article 123
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SourceType-Scholarly Journals-1
ObjectType-Feature-2
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Descrição: Spinal muscular atrophy (SMA) is a rare monogenic neuromuscular disorder caused by loss of function mutations. Measuring health-related quality of life to support economic evaluations in this population is encouraged. However, empirical evidence on the performance of preference-based measures (PBMs) in individuals with SMA is limited. This study aimed to assess the psychometric properties of the EQ-5D-5L and the Patient-Reported Outcomes Measure Information System Preference measure (PROPr) in individuals with SMA. The data used in this study were obtained via a web-based, cross-sectional survey. All participants completed the self-reporting EQ-5D-5L and PROMIS-29 questionnaires. Information about their socioeconomic and health status was also obtained. Ceiling and floor effects, convergent and divergent validity, known-group validity, and the agreement between the two measures were assessed. Strong ceiling and floor effects were observed for four dimensions of the EQ-5D-5L and three subscales, including pain intensity, pain interference, and physical function, of the PROMIS-29. All hypothesized associations between EQ-5D-5L/PROMIS-29 and other neuromuscular questions were confirmed, supporting good convergent validity. Moreover, both EQ-5D-5L and PROPr scores differentiated between impaired functional groups, demonstrating good discriminative ability. Poor agreement between the EQ-5D-5L and PROPr utility scores was observed. The EQ-5D-5L and PROPr both appear to be valid PBMs for individuals with SMA. However, PROPr yielded considerably lower utility scores than EQ-5D-5L and their agreement was poor. Therefore, these two PBMs may not be used interchangeably in economic evaluations of SMA-related interventions.
Editor: London: BioMed Central Ltd
Idioma: Inglês

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Measurement properties of the EQ-5D-5L and PROPr in patients with spinal muscular atrophy

Xu, Richard Huan ; Ma, Bin ; Xin, Huanping ; Zhang, Huanyu ; Zeng, Yan ; Luo, Nan ; Dong, Dong

London: BioMed Central Ltd

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