Trends of quality of life changes in amyotrophic lateral sclerosis patients

Shamshiri, Hosein; Fatehi, Farzad; Abolfazli, Roya; Harirchian, Mohammad Hossein; Sedighi, Behnaz; Zamani, Babak; Roudbari, Ali; Razazian, Nazanin; Khamseh, Fatemeh; Nafissi, Shahriar

doi:10.1016/j.jns.2016.06.056

Cited by 18 publications

(45 citation statements)

References 29 publications

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“…Because there has been no biomarker for tracking diseases severity in ALS, functional status is usually used as a primary outcome in clinical trials because it is a feature of disease progression (Paganoni et al, 2014). Although a number of studies have examined the relationship between the progress of this disease and QOL, such studies have produced inconsistent results concerning such relationship (Shamshiri et al, 2016). Many recent studies have indicated that QOL in patients with ALS appears to be maintained over time as physical function declines and is not equivalent to their disease progression (Felgoise et al, 2018), which can be explained by the results of recalibrating their expectations, the so-called “response shift” (Simmons, 2015).…”

Section: Discussionmentioning

confidence: 99%

“…Because QOL is a subjective concept reflecting perceived wellbeing in various areas of life, it is influenced not only by health conditions but also cultural perspectives, value, and environmental supports (Simmons et al, 2006). There has been some debate on the relationship between QOL and progression of the disease in ALS patients (Shamshiri et al, 2016). Studies in Western countries have provided increasing evidence that the QOL of patients with ALS does not change over time, despite a decrease in functional status (Simmons, 2015); the worse the functional status is, the lower the QOL in non-Western countries’ studies (Geng et al, 2017; Oh et al, 2018; Shamshiri et al, 2016).…”

Section: Introductionmentioning

confidence: 99%

“…There has been some debate on the relationship between QOL and progression of the disease in ALS patients (Shamshiri et al, 2016). Studies in Western countries have provided increasing evidence that the QOL of patients with ALS does not change over time, despite a decrease in functional status (Simmons, 2015); the worse the functional status is, the lower the QOL in non-Western countries’ studies (Geng et al, 2017; Oh et al, 2018; Shamshiri et al, 2016). The latter results could be explained by the problems associated with ALS, such as dependence on others and the negative effects on patients as the disease progresses, which restricts their normal daily activities.…”

Section: Introductionmentioning

confidence: 99%

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Unmet supportive care needs mediate the relationship between functional status and quality of life in patients with amyotrophic lateral sclerosis

Kim

2019

Pall Supp Care

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ObjectiveThe aims of this study were to identify the unmet care needs and to examine the mediating effect of unmet supportive care needs in the relationship between functional status and quality of life (QOL) in Korean patients with amyotrophic lateral sclerosis (ALS).MethodThis was a cross-sectional study conducted among 186 patients with ALS recruited from a tertiary hospital in Seoul, South Korea. ALS patients' functional status, unmet supportive care needs, and QOL were assessed by Amyotrophic Lateral Sclerosis Functional Rating Scale-Revised, the Amyotrophic Lateral Sclerosis Supportive Care Needs Instrument, and the Amyotrophic Lateral Sclerosis Specific Quality of Life – Revised Instrument, respectively. Mediation analysis was tested using Baron and Kenny's regression analysis and a Sobel test.ResultThe mean score for functional status was 33.35 ± 8.89; for unmet supportive care needs it was 2.40 ± 0.66; and for QOL it was 4.95 ± 1.29. Functional status was significantly correlated with unmet care needs and QOL. Unmet care needs satisfaction demonstrated a complete mediating effect on the relationship between functional status and QOL of the patients with ALS (β = –0.53, p < 0.001) and the effect was significant (Sobel test; Z = 5.48, p < 0.001).Significance of resultsAlthough QOL was negatively affected by the functional status in our sample, the relationship was fully mediated via unmet supportive care needs. Because there is no cure for ALS, and the condition is rapidly progressive with a lethal outcome, providing care by meeting patients’ needs is a critical aspect of caring for these patients. Early assessment of supportive care needs, providing services, and referring ALS patients to appropriate resources could enhance their QOL.

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Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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Unmet supportive care needs mediate the relationship between functional status and quality of life in patients with amyotrophic lateral sclerosis

Kim

2019

Pall Supp Care

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“…Indicators of mental wellbeing are low depressiveness and high levels of quality of life (QoL), both parameters provide evidence for successful psychosocial adaptation. Findings of good mental wellbeing in ALS have been challenged by other studies proclaiming positive correlation between the progression of physical disabilities and mental wellbeing, indicated by increase in depressiveness and loss of QoL, e.g., Shamshiri et al suggested that during the course of 1 year, QoL decreases as the physical and functional abilities deteriorate [5]. Others suggest that depressive symptoms may occur as a reaction following the communication of ALS diagnosis [6], or that depression might be present even 1 year before symptom onset already [7].…”

Section: Introductionmentioning

confidence: 94%

Disease progression but not physical state per se determines mental wellbeing in ALS

et al. 2020

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Background Studies 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. Methods In 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). Results Both 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. 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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“…Amyotrophic lateral sclerosis (ALS) is a rapidly progressive neurodegenerative disease. Patients gradually lose the ability to control their muscles and 3–5 years following diagnosis, they typically experience respiratory failure and succumb ( 1 ). Patient's ALS Assessment Questionnaire (ALSAQ-40) scores decrease from 40 (normal motor capabilities) at the onset of disease to 0 (total loss of motor capabilities) over an average of 4.4 years ( 1 , 2 ).…”

Section: Introductionmentioning

confidence: 99%

GEMALS: A promising therapy for amyotrophic lateral sclerosis

Geffard¹,

Mangas²,

Bedat³

et al. 2018

Exp Ther Med

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Amyotrophic lateral sclerosis (ALS) is a neurodegenerative disease that currently has no cure. At present, the only approved treatment for ALS is Riluzole, a glutamate release blocker that improves life expectancy by 3–6 months. ALS-Endotherapia (GEMALS) is a novel therapeutic approach to treat ALS and the aim of the present study was to investigate the potential beneficial effects of this novel treatment. A total of 31 patients with ALS were assessed in the current study. Deceleration of the disease was observed in 83.87% (P<0.0001) of patients and mean life expectancy was increased by 38 months. Motor functions, including breathing, walking, salivation, speech, swallowing and writing, were also improved in patients treated with GEMALS. The results of the present study demonstrate that long-term treatment with GEMALS has a curative effect in patients with ALS. Furthermore, the overall effectiveness of GEMALS was assessed using the ALS Assessment Questionnaire. The score improvement was 76.2 and 100% for men and women, respectively (P<0.0001), compared with the worldwide reference score. The present study provides a promising basis for the use of GEMALS as a therapeutic treatment for patients with ALS; however, these results must be confirmed in a double-blinded and randomized clinical trial.

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Trends of quality of life changes in amyotrophic lateral sclerosis patients

Cited by 18 publications

References 29 publications

Unmet supportive care needs mediate the relationship between functional status and quality of life in patients with amyotrophic lateral sclerosis

Unmet supportive care needs mediate the relationship between functional status and quality of life in patients with amyotrophic lateral sclerosis

Disease progression but not physical state per se determines mental wellbeing in ALS

GEMALS: A promising therapy for amyotrophic lateral sclerosis

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