Amyotrophic lateral sclerosis-specific quality of life-short form (ALSSQOL-SF): A brief, reliable, and valid version of the ALSSQOL-R

Background: Caregivers of patients with amyotrophic lateral sclerosis (ALS) may suffer from anxiety, depression, and reduced quality of life (QoL). Our goal was to evaluate the QoL and mood disorders in caregivers and their correlation with the patients' demographic, physical, and mental conditions. Methods: We analyzed data from 39 patients with ALS and their caregivers. Patients completed questionnaires of anxiety assessed by Generalised Anxiety Disorder Assessment (GAD-7), depression using the Beck Depression Inventory-II (BDI-II), and QoL via 40-item Amyotrophic Lateral Sclerosis Assessment Questionnaire (ALSAQ-40). Physical impairment was also measured in the patients using the revised Amyotrophic Lateral Sclerosis Functional Rating Scale (ALSFRS-R). Caregivers were also assessed by BDI-II, GAD-7, and 36-item Short-Form Health Survey questionnaire (SF-36). Results: The prevalence of depression and anxiety in the patients was 82.1% and 71.8%, respectively. Caregivers also had higher rates of anxiety and depression and lower levels of QoL in comparison with the general population (anxiety: 66.7%, depression: 43.6%). Depression and anxiety were considerably associated with worsened QoL in the caregivers. None of the demographic, physical, or mental characteristics of patients with ALS were related to either mood status or QoL of the caregiver population. Conclusion: Caregivers experience higher rates of anxiety and depression and lower QoL in comparison with the general population. The severity of mood disorders is inversely associated with the physical and mental domains of caregivers' QoL. Nonetheless, QoL in the caregivers is not affected by the physical or mental disability of the patients.

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Amyotrophic Lateral Sclerosis-Specific Quality of Life--Short Form; Brazilian Portuguese Version

PsycTESTS Dataset ◽

10.1037/t76936-000 ◽

2020 ◽

Author(s):

Maisa Vitória Gayoso ◽

Flávia Seullner Domingues ◽

Marcondes Cavalcante França Junior ◽

Stephanie H. Felgoise ◽

Acary Souza Bulle Oliveira ◽

...

Keyword(s):

Quality Of Life ◽

Amyotrophic Lateral Sclerosis ◽

Short Form ◽

Brazilian Portuguese ◽

Portuguese Version ◽

Lateral Sclerosis

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Effects of prolonged interruption of rehabilitation routines in amyotrophic lateral sclerosis patients

Palliative & Supportive Care ◽

10.1017/s1478951521000584 ◽

2021 ◽

pp. 1-6

Author(s):

Filipe Gonçalves ◽

Bruno Magalhães

Keyword(s):

Quality Of Life ◽

Palliative Care ◽

Amyotrophic Lateral Sclerosis ◽

Rating Scale ◽

Negative Impact ◽

Short Form ◽

Physical Symptoms ◽

Rank Test ◽

Lateral Sclerosis

Abstract Objective Patients with amyotrophic lateral sclerosis (ALS) experienced prolonged interruption of their rehabilitation palliative care routines due to restrictive COVID-19 pandemic public health measures. This study assesses the effects of before and after the lockdown on functionality rates and quality of life (QoL) in patients with ALS. Methods A longitudinal observational study was conducted. Participants were assessed three times — early January (T0), before mandatory lockdown (T1), and during lockdown (T2) — using the ALS Functional Rating Scale-revised (ALSFRS-R), Fatigue Severity Scale (FSS), and the ALS-Specific Quality of Life-Short Form (ALSSQOL-SF). The paired-sample t-test and Wilcoxon signed-rank test were used. Results Thirty-two patients were included with a mean age of 56.9 (SD 14.2) years and mean symptoms onset of 27.1 (SD 14.3) months. ALSFRS-R mean scores decayed significantly over time when comparing T0–T1 (0.26 ± 0.38) and T1–T2 (1.36 ± 1.43) slopes (p < 0.001). Significant differences were observed between T1 and T2 for ALSSQOL-SF scores (115.31 ± 17.06 vs. 104.31 ± 20.65), especially in four specific domains, and FSS scores (34.06 ± 16.84 vs. 40.09 ± 17.63). Negative correlations between negative emotions and physical symptoms assessed by ALSSQOL-SF and FSS were found. Significance of the results Rehabilitation treatment routines in palliative care, such as physiotherapy and speech therapy, appear to mitigate the ALSFRS-R slope. Prolonged interruption of rehabilitation during the lockdown may have accelerated the functional decline in ALS patients’ motor skills with as measured after 2 months by the ALSFRS-R in the limb and bulbar subscores, but not respiratory subscore. Other short-term effects, increased fatigue and negative impact on QoL, were also verified.

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Differences in quality of life modalities give rise to needs of individual support in patients with ALS and their next of kin

Palliative & Supportive Care ◽

10.1017/s1478951509990733 ◽

2010 ◽

Vol 8 (1) ◽

pp. 75-82 ◽

Cited By ~ 20

Author(s):

Anneli G. Olsson ◽

Inga Markhede ◽

Susann Strang ◽

Lennart I. Persson

Keyword(s):

Quality Of Life ◽

Amyotrophic Lateral Sclerosis ◽

Rating Scale ◽

Short Form ◽

Anxiety And Depression ◽

Next Of Kin ◽

Sf 36 ◽

Lateral Sclerosis ◽

Over Time

AbstractObjective:The aim of this study was to examine health-related quality of life (HRQoL), individual QoL, anxiety and depression in patients with amyotrophic lateral sclerosis (ALS) and their next of kin in relation to patients' physical function over time.Methods:35 patients and their next of kin were studied using the Short Form-36 Health Survey (SF-36), Schedule for Evaluation of Individual Quality of Life-Direct Weighting (SEIQoL-DW), and Hospital Anxiety and Depression Scale (HADS) and patients also by the Amyotrophic Lateral Sclerosis Functional Rating Scale-Revised and the Norris scale every fourth to sixth month, one to four times.Results:Changes were found over time in both patients and their next of kin in the SF-36 but not in the SEIQoL-DW or HADS. Patients rated worse than their next of kin in the SF-36 physical subscales and next of kin rated worse than the patients in the global QoL score in SEIQoL-DW. Health, hobbies, and total relations were important areas in the SEIQoL-DW among all participants, but some important areas also differed between the patients and their next of kin. In most important areas among the pairs, the next of kin estimated their functioning/satisfaction worse than patients estimated their functioning/satisfaction.Significance of results:There were few changes over time in the QoL among the participants. Although most of the estimates in patients and their next of kin were equal, there were also some differences. These results emphasize the importance of support for both patients and their next of kin and that support ought to be given on both individual bases and together in pairs. The SEIQoL-DW might give signposts in the care through the course of the disease about what should be focused on to increase satisfaction of the important areas of life and might help the person to find coping strategies to handle his or her life situation.

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Longitudinal association between health-related quality of life and personality factors in patients with amyotrophic lateral sclerosis (ALS)

Pharmacopsychiatry ◽

10.1055/s-2007-991863 ◽

2007 ◽

Vol 40 (05) ◽

Author(s):

H Krampe ◽

C Bartels ◽

D Victorson ◽

CK Enders ◽

J Beaumont ◽

...

Keyword(s):

Quality Of Life ◽

Amyotrophic Lateral Sclerosis ◽

Personality Factors ◽

Health Related Quality ◽

Longitudinal Association ◽

Related Quality ◽

Health Related ◽

Lateral Sclerosis

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Health outcome and quality-of-life measurements in amyotrophic lateral sclerosis

Journal of Neurology ◽

10.1007/bf03160578 ◽

1997 ◽

Vol 244 (S2) ◽

pp. S26-S29 ◽

Cited By ~ 10

Author(s):

Michael Swash

Keyword(s):

Quality Of Life ◽

Health Outcome ◽

Amyotrophic Lateral Sclerosis ◽

Lateral Sclerosis ◽

Quality Of Life Measurements

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Independent home use of a brain-computer interface by people with amyotrophic lateral sclerosis

Neurology ◽

10.1212/wnl.0000000000005812 ◽

2018 ◽

Vol 91 (3) ◽

pp. e258-e267 ◽

Cited By ~ 39

Author(s):

Jonathan R. Wolpaw ◽

Richard S. Bedlack ◽

Domenic J. Reda ◽

Robert J. Ringer ◽

Patricia G. Banks ◽

...

Keyword(s):

Quality Of Life ◽

Amyotrophic Lateral Sclerosis ◽

Brain Computer Interface ◽

Computer Interface ◽

It Use ◽

Technical Problems ◽

Rapid Disease Progression ◽

And Performance ◽

Lateral Sclerosis

ObjectiveTo assess the reliability and usefulness of an EEG-based brain-computer interface (BCI) for patients with advanced amyotrophic lateral sclerosis (ALS) who used it independently at home for up to 18 months.MethodsOf 42 patients consented, 39 (93%) met the study criteria, and 37 (88%) were assessed for use of the Wadsworth BCI. Nine (21%) could not use the BCI. Of the other 28, 27 (men, age 28–79 years) (64%) had the BCI placed in their homes, and they and their caregivers were trained to use it. Use data were collected by Internet. Periodic visits evaluated BCI benefit and burden and quality of life.ResultsOver subsequent months, 12 (29% of the original 42) left the study because of death or rapid disease progression and 6 (14%) left because of decreased interest. Fourteen (33%) completed training and used the BCI independently, mainly for communication. Technical problems were rare. Patient and caregiver ratings indicated that BCI benefit exceeded burden. Quality of life remained stable. Of those not lost to the disease, half completed the study; all but 1 patient kept the BCI for further use.ConclusionThe Wadsworth BCI home system can function reliably and usefully when operated by patients in their homes. BCIs that support communication are at present most suitable for people who are severely disabled but are otherwise in stable health. Improvements in BCI convenience and performance, including some now underway, should increase the number of people who find them useful and the extent to which they are used.

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