Quality of life in ALS is maintained as physical function declines

Robbins, Rosemary A.; Simmons, Zachary; Bremer, Barbara A.; Walsh, Susan; Fischer, S.

doi:10.1212/wnl.56.4.442

Cited by 205 publications

(147 citation statements)

References 22 publications

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“…This also applies if the persons suffering from neuromuscular diseases and having a higher degree of education degree of education report on the general overall quality of life. In contrast to the findings of Robbins et al (2001), Lulé et al (2008), and Raspe (1990), the assessment of overall quality of life within the scope of this survey of persons having a neuromuscular disease is lower than in a comparison sample with persons not suffering from neuromuscular or other chronic diseases.…”

Section: Resultscontrasting

confidence: 91%

“…It means that difficult living conditions do not necessarily have to result in poorer assessments of subjective well-being or quality of life (Daig & Lehmann, 2007). Robbins et al (2001) showed that the assessment of the quality of life of patients with ALS does not primarily depend on the physical state of health. In a study by Lulé et al (2008), the average subjective quality of life of ALS patients was 66-72 % and thus in an area that is comparable with healthy control persons.…”

Section: Quality Of Life Within the Framework Of Neuromuscular Diseasesmentioning

confidence: 99%

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Neuromuscular Diseases in the Context of Psychology and Educational Science

Pieter¹,

Fröhlich²

2012

Neuromuscular Disorders

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Section: Resultscontrasting

confidence: 91%

Section: Quality Of Life Within the Framework Of Neuromuscular Diseasesmentioning

confidence: 99%

Neuromuscular Diseases in the Context of Psychology and Educational Science

Pieter¹,

Fröhlich²

2012

Neuromuscular Disorders

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“…In our study, most patients had moderate to high grade lymphedema and just a few low grade patients with lymphedema were present to be evaluated. PF improvement in the present study, as other studies showed (24,25) is not significantly related to HRQoL. So improvement in PF and HRQOL after treatment of lymphedema must be evaluated from different aspects (11).…”

Section: Discussionsupporting

confidence: 45%

The Effect of Complex Decongestive Therapy on Post-Breast Surgery Quality of Life in Breast Cancer Patients With Unilateral Lymphedema and Its Predictive Factors

et al. 2016

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Background: Complex decongestive therapy (CDT) is one of the most common treatments used in lymphedema. Effects of lymphedema treatment and its predictive factors were studied previously but its impact on quality of life (HRQOL) is still unknown. Objectives: This study, in addition to investigating CDT effects on HRQOL, examined factors that can influence it, to estimate the effect of treatment according to patient's condition in our setting. Patients and Methods:The present study was a quasi-experimental study on health-related HRQOL. A general data gathering form was used in 120 patients who developed lymphedema following breast cancer surgery and referred for treatment to Shiraz Motahari clinic in 2014. All patients' arm size was measured by "direct voltmeter" before the intervention to determine the grade of lymphedema. SF-36 questionnaire was used pre-and one month post-intervention to collect HRQOL data. Complete decongestive therapy (CDT) with or without Pump was used as the intervention. Results: Patients had higher scores after treatment in all subscales of quality of life (except for "role limitation due to physical problems"), but a statistically significant difference (P = 0.023) was observed only in the "mental health" subscale. The results showed significant changes in bodily pain after the intervention in patients less than 40 years old (P = 0.03), "general health" and "vitality" in single patients (P values equal to 0.013 and 0.02, respectively) and "mental health" in those with education "less than high school" (P = 0.018). In the case of household patients, only PF changed significantly after treatment (P = 0.027). Moreover, "role limitation due to physical problems" and "mental health" subscales changed significantly after treatment with CDT + Pump (P values equal to 0.004 and 0.003). Other groups represented no significant changes in other subscales. Besides, duration of lymph edema had no effect on improvement of HRQOL after treatment. Conclusions: Although this study showed that some factors can improve patients' feeling and HRQOL after treatment in our population, in many aspects no changes were observed. It is recommended to improve patients' HRQOL through more social and physiological support in our setting. Also, more follow-up duration after the intervention is recommended in future studies.

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“…The primary outcome measure was slope of the ALSFRS-R. Secondary measures consisted of changes in FVC slope, weight loss, the single-item ALS Quality of Life Scale, 15 and time to failure (defined as death, endotracheal intubation, tracheostomy-assisted ventilation, or use of noninvasive ventilation 23 hours/day for 14 days). Safety was assessed by adverse events and abnormal laboratory studies.…”

Section: Procedures Als Functional Rating Scale-revisedmentioning

confidence: 99%

Phase II screening trial of lithium carbonate in amyotrophic lateral sclerosis

Miller¹,

Moore²,

Forshew³

et al. 2011

Neurology

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Objective: To use a historical placebo control design to determine whether lithium carbonate slows progression of amyotrophic lateral sclerosis (ALS).Methods: A phase II trial was conducted at 10 sites in the Western ALS Study Group using similar dosages (300-450 mg/day), target blood levels (0.3-0.8 mEq/L), outcome measures, and trial duration (13 months) as the positive trial. However, taking riluzole was not a requirement for study entry. Placebo outcomes in patients matched for baseline features from a large database of recent clinical trials, showing stable rates of decline over the past 9 years, were used as historical controls. Results:The mean rate of decline of the ALS Functional Rating Scale-Revised was greater in 107 patients taking lithium carbonate (Ϫ1.20/month, 95% confidence interval [CI] Ϫ1.41 to Ϫ0.98) than that in 249 control patients (Ϫ1.01/month, 95% CI Ϫ1.11 to Ϫ0.92, p ϭ 0.04). There were no differences in secondary outcome measures (forced vital capacity, time to failure, and quality of life), but there were more adverse events in the treated group. Conclusions:The lack of therapeutic benefit and safety concerns, taken together with similar results from 2 other recent trials, weighs against the use of lithium carbonate in patients with ALS. The absence of drift over time and the availability of a large database of patients for selecting a matched historical control group suggest that use of historical controls may result in more efficient phase II trials for screening putative ALS therapeutic agents. Classification of evidence:This study provided Class IV evidence that lithium carbonate does not slow the rate of decline of function in patients with ALS over 13 months. Neurology ® 2011;77:973-979 GLOSSARY ALS ϭ amyotrophic lateral sclerosis; ALSFRS-R ϭ ALS Functional Rating Scale-Revised; CI ϭ confidence interval; FVC ϭ forced vital capacity; MINO ϭ minocycline in ALS trial; NSAE ϭ nonserious adverse event; QOL ϭ quality of life; SAE ϭ serious adverse event; WALS ϭ Western ALS Study Group.

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Quality of life in ALS is maintained as physical function declines

Cited by 205 publications

References 22 publications

Neuromuscular Diseases in the Context of Psychology and Educational Science

Neuromuscular Diseases in the Context of Psychology and Educational Science

The Effect of Complex Decongestive Therapy on Post-Breast Surgery Quality of Life in Breast Cancer Patients With Unilateral Lymphedema and Its Predictive Factors

Phase II screening trial of lithium carbonate in amyotrophic lateral sclerosis

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