scholarly journals Validating the Persian version of the amyotrophic lateral sclerosis-specific quality of life-revised instrument

Author(s):  
Motahareh Afrakhteh ◽  
Sara Esmaeili ◽  
Mohsen Shati ◽  
Seyedeh Fahimeh Shojaei ◽  
Maryam Bahadori ◽  
...  

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

2021 ◽  
Author(s):  
Danny Claessens ◽  
Esther A. Boudewijns ◽  
Lotte C.E.M. Keijsers ◽  
Annerika H.M. Gidding-Slok ◽  
Bjorn Winkens ◽  
...  

Abstract Background Chronic conditions impose a major impact on quality of life and on healthcare. The Assessment of Burden of Chronic Conditions (ABCC-)tool was developed to improve experienced quality of care and quality of life by facilitating shared decision-making and self-management. It assesses the experienced burden of one or multiple conditions, and visualises and integrates the burden in daily care. However, its scale’s validity and reliability are yet unknown. The aim of this study is to evaluate whether the ABCC-scale is valid and reliable in people with Chronic Obstructive Pulmonary Disease (COPD), asthma, or Type 2 Diabetes Mellitus (T2DM). Methods The Saint George Respiratory Questionnaire (SGRQ), the Standardized Asthma Quality of Life Questionnaire (AQLQ-S), and the Audit of Diabetes Dependent Quality of Life Questionnaire (ADDQoL19) were compared to the ABCC-scale to assess convergent validity. Convergent validity was assumed when at least 75% of the postulated correlations were higher than 0.7, or between 0.3 and 0.7 for single-item subscales. To measure known-group validity, participants were categorized according to exacerbation status, depression, asthma control, insulin dependence, complications and obesity. The ABCC-scale was deemed internally consistency upon a Cronbach’s alpha ≥ 0.90 for the total scale, and ≥ 0.70 for subscales. Test-retest reliability was evaluated at a two-week interval. Results A total of 65, 62, and 60 people with COPD, asthma, T2DM respectively were included. The ABCC-scale correlated, in accordance with hypotheses, with the SGRQ (75%), AQLQ-S (100%), and ADDQoL19 (75%). Differentiation of known-groups based on the ABCC-scale was possible for all specified groups. The total score and subscores of the ABCC-scale were internally consistent with a Cronbach’s alpha of 0.90, 0.92, and 0.91 for the total score for people with COPD, asthma, and T2DM respectively. The ABCC-scale had a good test-retest reliability with an Intraclass Correlation Coefficient of 0.95, 0.93, and 0.95 for people with COPD, asthma and T2DM respectively. Conclusions The ABCC-scale is a valid and reliable questionnaire that can be used within the ABCC-tool for people with COPD, asthma or T2DM. Future research should indicate whether this also applies to people with multimorbidity, and what the effects and experiences are upon clinical use.


2014 ◽  
Vol 48 (1) ◽  
pp. 63-67 ◽  
Author(s):  
Paula Costa Castro ◽  
Patrícia Driusso ◽  
Jorge Oishi

OBJECTIVE : To compare the reliability and convergent validity of instruments assessing quality of life in Brazilian older adults. METHODS : Cross-sectional study of 278 literate, community-dwelling older adults attending a municipal university for the elderly in Sao Carlos, SP, Southeastern Brazil between 2006 and 2008. The Brazilian versions of the SF-36 and WHOQOL-BREF instruments to assess quality of life were compared. Cronbach’s alpha coefficient was used to estimate reliability and Pearson’s correlation for comparison between the two scales. RESULTS : Most of participants were women (87.8%) with a mean age of 63.83±7.22 years. Both scales showed an acceptable internal consistency – WHOQOL-BREF Cronbach’s alpha was 0.832 and SF-36 was 0.868. There was a weak (r ≤ 0.6) correlation between the related fields in the two questionnaires. CONCLUSIONS : The SF-36 and WHOQOL-BREF are reliable instruments for clinical and research uses in Brazilian older women. To select one, researchers should consider which aspects of quality of life they aim to capture because of weak convergent validity signs. This study’s results indicate that WHOQOL-BREF may be more relevant to evaluate changes in the quality of life of older women because it prioritizes responses to the aging process and avoids focusing on impairment.


2021 ◽  
Vol 62 (4) ◽  
Author(s):  
Dinh Thi Thuy Linh ◽  
Nguyen Viet Quang ◽  
To Thi Ngoc Anh ◽  
Vu Thi Anh

Objectives: To describe the current situation of the quality of life of students in preventive medicineat Thai Nguyen University of Medicine and Pharmacy in 2020.Subjects and methods: research was conducted according to over 189 students specialized inpreventive medicine - Thai Nguyen University of Medicine and Pharmacy with the EQ-5D-5Lquality of life assessment toolkit.Results: The test-retest reliability of the EQ-5D-5L was good with Cronbach’s alpha =0,728. Themean EQ-5D-5L were 0,93. The rate of all aspects was good, accounting for 55.6%. There was arelationship between the number of year student and quality of life (p <0.05).


2010 ◽  
Vol 8 (1) ◽  
pp. 75-82 ◽  
Author(s):  
Anneli G. Olsson ◽  
Inga Markhede ◽  
Susann Strang ◽  
Lennart I. Persson

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.


Neurology ◽  
2018 ◽  
Vol 91 (3) ◽  
pp. e258-e267 ◽  
Author(s):  
Jonathan R. Wolpaw ◽  
Richard S. Bedlack ◽  
Domenic J. Reda ◽  
Robert J. Ringer ◽  
Patricia G. Banks ◽  
...  

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.


2021 ◽  
Vol 10 (10) ◽  
pp. 2081
Author(s):  
Edyta Kinel ◽  
Krzysztof Korbel ◽  
Piotr Janusz ◽  
Mateusz Kozinoga ◽  
Dariusz Czaprowski ◽  
...  

The study aimed to carry on the process of the cultural adaptation of the Italian Spine Youth Quality of Life Questionnaire (ISYQOL) into Polish (ISYQOL-PL). The a priori hypothesis was: the ISYQOL-PL questionnaire is reliable and appropriate for adolescents with a spinal deformity. Fifty-six adolescents (mean age 13.8 ± 1.9) with idiopathic scoliosis (AIS) with a mean Cobb angle 29.1 (±9.7) and two with Scheuermann juvenile kyphosis (SJK) with a kyphosis angle 67.5 (±17.7) degrees were enrolled. All patients had been wearing a corrective TLSO brace for an average duration of 2.3 (±1.8) years. The Institutional Review Board approved the study. The cross-cultural adaptation of the ISYQOL-PL was performed following the guidelines set up by the International Quality of Life Assessment Project. The reliability was assessed using internal consistency (the Cronbach’s alpha coefficient) and test–retest reliability (intraclass correlation coefficient ICC2.1, CI = 95%); moreover, floor and ceiling effects were calculated. The internal consistency was satisfactory (Cronbach’s alpha coefficient 0.8). The test–retest revealed high reliability with the value of ICC2.1 for the entire group 0.90, CI (0.84 to 0.94). There was neither floor nor ceiling effect for the ISYQOL-PL overall score. The ISYQOL-PL is reliable and can be used in adolescents with spinal deformity.


2021 ◽  
Vol 75 (Supplement_2) ◽  
pp. 7512500033p1
Author(s):  
Addie Broom ◽  
Hannah Prescott ◽  
Mallorie Savage ◽  
Addie Broom ◽  
Emily Crawford ◽  
...  

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