Agreement among three quality of life measures in patients with ALS

In ALS it would be expected that quality of life (QoL) would be decreased. However, studies to date show diverging results. Our study focuses on how ALS affects QoL on the different domains of the SF-36 cross-sectionally and during progression. The method used was a prospective cohort study, with assessments at baseline, at six months, and at one year. Patients were included with possible, probable or definite ALS according to the revised El Escorial criteria and were between 30 and 70 years of age. ALS functional rating scale was used to establish disease status, SF-36 as QoL scale. At baseline 73 completed ALSFRS forms were available and 62 completed SF-36 forms. The ALSFRS showed disease progression. SF-36 scores showed lower QoL scores of persons with ALS compared to the general population both in cross-sectional and longitudinal aspects in the domains of Physical Functioning, Role Physical, and Social Functioning, but similar compared with the general population in the Mental Health and Role Emotional domains. This study shows deteriorating physical health but stable mental health, thereby illustrating the diverging correlations between ALS severity and HRQoL. The diverging pattern of physical and mental health suggests a frame-shift in the experience of HRQoL.

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“…The SF-36 is today the most popular HRQoL measure (13). It is a reliable and valid HRQoL measure for ALS research (9,25,26).…”

Section: Instrumentsmentioning

confidence: 99%

Cross‐sectional and longitudinal correlations between disease progression and different health‐related quality of life domains in persons with amyotrophic lateral sclerosis

Groot

Post

Heuveln

et al. 2007

Amyotrophic Lateral Sclerosis

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“…ALS severity was classified according to (i) the ALS Functional Rating Scale-Revised (ALSFRS-R) (mean score = 32.63) [ 29 ]; (ii) the ALS Severity Scale (ALSSS) (mean score = 27.1) [ 31 ]; (iii) high or low severity classified as requiring caregiver assistance or not (75% of sample classified as high) [ 32 ]; or (iv) the ALS Health State Scale (ALS/HSS) (27–29% of sample classified as moderate or severe ALS) [ 33 , 34 ]. If ALS severity was not reported, ALS diagnosis was classified using the El Escorial criteria with 21% to 47% of the sample classified as probable or definite ALS [ 30 , 35 ].…”

Section: Resultsmentioning

confidence: 99%

“…Two PBMs were examined in the included studies: the EQ-5D-3L ( n = 6) [ 29 – 34 ] and the QWB Self-Administered (QWB-SA) scale ( n = 1) [ 35 ]. The EQ-5D-3L is a widely used generic PBM of HRQL [ 37 ].…”

Section: Resultsmentioning

confidence: 99%

“…Only one [ 35 ] of the seven included studies' primary purpose was to evaluate the psychometric property of a generic PBM, the QWB-SA scale. The remaining six [ 29 – 34 ] studies reported information on the psychometric properties of a generic PBM, the EQ-5D-3L; however, it was not the purpose of their study.…”

Section: Resultsmentioning

confidence: 99%

“…Mean EQ-5D-3L scores ranged from 0.18 to 0.54, and a range of 37 to 214 individuals with ALS were included in these studies. A mean QWB-SA score of 0.43 was reported, and nineteen individuals with ALS were included in this study [ 35 ].…”

Section: Resultsmentioning

confidence: 99%

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Psychometric Properties of Preference-Based Measures for Economic Evaluation in Amyotrophic Lateral Sclerosis: A Systematic Review

Peters

Bello-Haas

Packham

et al. 2021

Neurology Research International

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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.

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Assessing the psychometric properties of quality of life measures in individuals with amyotrophic lateral sclerosis: a systematic review

et al. 2023

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Agreement among three quality of life measures in patients with ALS

Cited by 9 publications

References 8 publications

Cross‐sectional and longitudinal correlations between disease progression and different health‐related quality of life domains in persons with amyotrophic lateral sclerosis

Cross‐sectional and longitudinal correlations between disease progression and different health‐related quality of life domains in persons with amyotrophic lateral sclerosis

Psychometric Properties of Preference-Based Measures for Economic Evaluation in Amyotrophic Lateral Sclerosis: A Systematic Review

Assessing the psychometric properties of quality of life measures in individuals with amyotrophic lateral sclerosis: a systematic review

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