Abstract
BackgroundStudies provide inconclusive results on the question whether loss of mental wellbeing is actually associated with decline in physical function in amyotrophic lateral sclerosis (ALS). The purpose of this study was to determine predictors of mental wellbeing in ALS.MethodsIn total, n = 330 ALS patients were interviewed on parameters of mental wellbeing to evaluate the patients’ capacity of psychosocial adaptation. These parameters were global and subjective quality of life (QoL), and depressiveness. A subsample of n = 82 ALS patients were interviewed again within approximately a year (mean 14.34 ± 5.53 months).ResultsBoth global and subjective QoL were stable, whereas depressiveness increased within the course of 1 year after diagnosis. Physical function decline was associated with mental wellbeing. Progression of physical disabilities and symptom duration were significant predictors of wellbeing in the sense that fast progression and short time since symptom onset (both indicating short time to adapt) were associated with low wellbeing.ConclusionsThere is evidence for subsamples in ALS with regard to mental wellbeing, which are mainly determined by clinical parameters. Those subjects being reported in the literature to present with high mental wellbeing are often long survivors. High progression rate and low physical function when attending the clinic for the first time should be red flags and need special attention in clinical counseling.
Highlights
Amyotrophic lateral sclerosis (ALS) is a fatal diagnosis, leaving the patient in a devastating state of physical immo‐ bility and incapacity to speak [1]
Since the early 1990s, there have been reports of satis‐ factory mental wellbeing despite the severe loss of physi‐ cal function in amyotrophic lateral sclerosis (ALS), and that mental wellbeing depends on factors other than clinical parameters [3, 4]
Over a period of approximately 12 months, there was a significant decline in the mean score of physical function (p < 0.01), losing 6.23 points on average on the ALSFRS-r scale
Summary
Amyotrophic lateral sclerosis (ALS) is a fatal diagnosis, leaving the patient in a devastating state of physical immo‐ bility and incapacity to speak [1]. Indica‐ tors of mental wellbeing are low depressiveness and high levels of quality of life (QoL), both parameters provide evidence for successful psychosocial adaptation. Methods In total, n = 330 ALS patients were interviewed on parameters of mental wellbeing to evaluate the patients’ capac‐ ity of psychosocial adaptation. These parameters were global and subjective quality of life (QoL), and depressiveness. Conclusions There is evidence for subsamples in ALS with regard to mental wellbeing, which are mainly determined by clinical parameters Those subjects being reported in the literature to present with high mental wellbeing are often long survivors. High progression rate and low physical function when attending the clinic for the first time should be red flags and need special attention in clinical counseling
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