Abstract
Background
Despite declining physical function, individuals with ALS report relative preservation
of overall health perception, or health-related quality of life (HRQoL). This paradoxical
finding is attributed to psychological adaptation to deficits.
Objective
The aim of this cross-sectional study was to examine reprioritization of factors that
determine HRQoL with disease progression.
Methods
As standard care, patients with ALS self-reported ALSFRS-R (measure of bulbar, motor,
and respiratory function), PHQ-9 (measure of depression), and EQ-5D-3L (utility index
that includes a visual analog scale asking about health perception [EQ-VAS]). ALS
was staged by the FT9 method and classified into early (stages 0–2) and late (stages
3–4) disease. Multigroup structural equation modeling was used to evaluate weights
of physical (PHY) and psychological well-being (PSY) for early and late disease, on
EQ-VAS (as a measure of overall HRQoL).
Results
There were 578 patients (mean age 61.5 ± 11.9, 59% male) with ALS: 423 (73%) early
and 155 (27%) late disease. A measurement model was established with good model fit
(RMSEA = 0.076, CFI = 0.943, SRMR = 0.045). In adjusted models, standardized weights
of PHY and PSY on HRQoL in early disease were 0.34 (standard error = 0.06) and 0.24
(0.06) respectively, whereas for late disease they were 0.39 (0.07) and 0.42 (0.07).
Importantly, PHY and PSY were significantly correlated in early but not in late disease.
Conclusions
Our study found health perception is more representative of psychological well-being
and less representative of physical function across the disease progression. Greater
allocation for psychological health would be the most effective strategy to maximize
subjective health status as ALS advances.
Keywords
Abbreviations:
ALS (Amyotrophic lateral sclerosis), ALSFRS-R (Revised ALS Functional Rating Score), CFI (Comparative fit index), EQ-VAS (EQ-5D Visual Analog Scale, and overall measure of health perception), HRQoL (Health-related quality of life), RMSEA (Root mean square error of approximation), PHY (Latent variable indicating psychological health), PHY (Latent variable indicating physical health), SEM (Structural equation modeling), SRMR (Standardized root mean square residual), QoL (Quality of life)To read this article in full you will need to make a payment
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Article info
Publication history
Published online: September 30, 2022
Accepted:
September 26,
2022
Received:
June 17,
2022
Identification
Copyright
© 2022 Elsevier B.V. All rights reserved.
