Patients' assessment of quality of life instruments: a randomised study of SIP, SF-36 and SEIQoL-DW in patients with amyotrophic lateral sclerosis

Background: Amyotrophic Lateral Sclerosis-Specific Quality of Life-Revised (ALSSQOL-R) encompasses 50 items which assess quality of life (QOL) in patients with amyotrophic lateral sclerosis (ALS) in six major domains. This study aims to translate the ALSSQOL-R into Persian and evaluate its reliability and validity among Iranian patients. Methods: ALSSQOL-R was translated by the standard multi-step forward-backward method. Content validity was calculated using item content validity index (I-CVI). Three items in the “intimacy” domain were deleted considering Iranian culture. Cronbach’s alpha was used for all 6 dimensions to calculate the internal consistency reliability. Test-retest reliability was evaluated using intraclass correlation coefficient (ICC) with one-month interval. Concurrent validity was measured by the validated version of 36-Item Short Form Health Survey (SF-36) questionnaire. Results: Sixty-three patients with ALS were enrolled in the study. I-CVI was 70%, promoted to 85% after modifications (acceptable). Regarding internal consistency reliability, Cronbach’s alpha in all six domains was  0.70 and total Cronbach’s alpha was 0.89 which is assumed as good. In terms of test-retest reliability, ICC [95% confidence interval (CI)] was 0.91 (91%) and Pearson correlation coefficient (r) was 0.90 (P < 0.001), all indicating an excellent reliability. The concurrent validity was established based on a strong correlation with SF-36 (r = 0.744, P < 0.001). Conclusion: The findings show that the modified

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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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Quality-of-Life Assessments That Can Be Used for Patients Diagnosed With Amyotrophic Lateral Sclerosis: A Scoping Review

American Journal of Occupational Therapy ◽

10.5014/ajot.2021.75s2-rp33 ◽

2021 ◽

Vol 75 (Supplement_2) ◽

pp. 7512500033p1

Author(s):

Addie Broom ◽

Hannah Prescott ◽

Mallorie Savage ◽

Addie Broom ◽

Emily Crawford ◽

...

Keyword(s):

Quality Of Life ◽

Amyotrophic Lateral Sclerosis ◽

Scoping Review ◽

Lateral Sclerosis

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Coping strategies in relation to quality of life in amyotrophic lateral sclerosis

Muscle & Nerve ◽

10.1002/mus.22270 ◽

2011 ◽

Vol 45 (1) ◽

pp. 131-134 ◽

Cited By ~ 12

Author(s):

Sébastien Montel ◽

Laurence Albertini ◽

Elisabeth Spitz

Keyword(s):

Quality Of Life ◽

Amyotrophic Lateral Sclerosis ◽

Coping Strategies ◽

Lateral Sclerosis

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AN AYURVEDIC CASE REPORT ON AMYOTROPHIC LATERAL SCLEROSIS

November 2020 - International Ayurvedic Medical Journal ◽

10.46607/iamj4409112021 ◽

2021 ◽

Vol 9 (11) ◽

pp. 2903-2908

Author(s):

Ambika. K ◽

Arundhathi. K ◽

Lekshmi G. Krishna

Keyword(s):

Quality Of Life ◽

Skeletal Muscle ◽

Amyotrophic Lateral Sclerosis ◽

Case Report ◽

Lower Limbs ◽

Skeletal Muscle Weakness ◽

Treatment Principle ◽

Severe Type ◽

Lateral Sclerosis

Amyotrophic Lateral Sclerosis (ALS) is a common and most severe type of Motor Neuron Disease. It is characterized by progressive skeletal muscle weakness, wasting and fasciculations. Survival is for 3-5 years, and the death is from respiratory paralysis. The incidence of ALS is between 0.6 and 3.8 per 100000 persons per year. Males are predominantly affected. Here is a case report of 45yrs old male who presented with complaints of difficulty in walking since 3years, with an insidious asymmetric onset of weakness of bilateral lower limbs with wasting and fasciculations. In Ayurveda, the case was symptomatologically diagnosed as Mamsa Sosha, which occurs as the result of obstruction of Snayu and Rakthadhamanis (Mamsavaha srotomoolas). The assessment was done using ALSFRS-R Scale. The treatment was aimed at improving the quality of life and also decreasing the rate of disease progression. The treatment principle adopted was Srothosodhana (Ama- Avaranaghna cikitsa) and Brimhana. Promising results were obtained after treatment. Keywords: ALS, MND, Ayurveda, Avaranaghna cikitsa, Mamsa Sosha, Mamsa Kshaya

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