Abstract
Objective The aim of this review was to synthesize the psychometric properties of generic preference-based measures (PBMs) of health-related quality of life (HRQL) in Amyotrophic Lateral Sclerosis (ALS). Methods A systematic review was conducted according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. Four databases were searched from inception to April 2019: OVID Medline, Embase, PsycINFO, and CINAHL. Studies were included if (1) the sample represented individuals with ALS, (2) a generic PBM was utilized and reported on, and (3) information on the psychometric property of a generic PBM was provided. Results Ninety-one articles were screened, and 39 full-text articles were reviewed. Seven full-text articles were included in this review. The mean age of participants ranged from 58.1 to 63.8 years, and mean time since diagnosis ranged from 20.5 to 44.6 months. Two generic PBMs were found, the EQ-5D-3L (n = 6) and the Quality of Well-Being Self-Administered (QWB-SA) scale (n = 1). Convergent validity of the EQ-5D-3L was large against a global scale of self-perceived health (r = 0.60) and small to large against ALS specific HRQL measures (r = 0.19 to 0.75). For the QWB-SA scale, correlations were small against a generic measure (r = 0.21) and large against ALS specific measures (r = 0.55). The EQ-5D-3L discriminated across different disease severity; however, floor effects were reported. Conclusion This review highlights the need for more rigorously designed studies to assess the psychometric properties of generic PBMs in ALS and the development of an ALS specific PBM that adequately reflects the health concerns of individuals with ALS.
Highlights
Amyotrophic lateral sclerosis (ALS) is a neurodegenerative disease characterised by selective and progressive degeneration of voluntary motor neurons [1]
In grading the quality of evidence using the GRADE approach and in accordance with hypotheses, there was serious inconsistency, very serious imprecision, and serious indirectness. is resulted in an overall rating of very low (Table 1). This was the first study systematically reviewing the psychometric properties of generic preference-based measures (PBMs) in Amyotrophic Lateral Sclerosis (ALS)
PBMs can be of great use to patients, clinicians, and researchers alike; our results indicate there is limited evidence of their psychometric properties in ALS
Summary
Amyotrophic lateral sclerosis (ALS) is a neurodegenerative disease characterised by selective and progressive degeneration of voluntary motor neurons [1]. With disease progression and the resulting symptoms and loss of independence, the health-related quality of life (HRQL) of individuals with ALS is severely impacted [4,5,6,7]. HRQL can be assessed using health profiles or preference-based measures (PBMs; known as utility measures). Health profiles, such as the ALS Specific Quality of Life-Revised (ALSSQOL-R) scale, are scored by subscales and do not produce a single index score useful for economic evaluation purposes [5, 9, 10]. Ey can be Neurology Research International used by researchers and policymakers for economic decision-making purposes to calculate quality-adjusted life years (QALYs) and determine the cost-effectiveness of interventions in ALS [9] PBMs, on the other hand, are scored from 0.0 (death) to 1.0 (full health) and provide a single value of HRQL [9]. ey can be Neurology Research International used by researchers and policymakers for economic decision-making purposes to calculate quality-adjusted life years (QALYs) and determine the cost-effectiveness of interventions in ALS [9]
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