scholarly journals Is it feasible to assess self-reported quality of life in individuals who are deaf and have intellectual disabilities?

Author(s):  
Johannes Fellinger ◽  
Magdalena Dall ◽  
Joachim Gerich ◽  
Maria Fellinger ◽  
Katharina Schossleitner ◽  
...  

Abstract Purpose There is consensus that Quality of Life (QOL) should be obtained through self-reports from people with intellectual Disability (ID). Thus far, there have been no attempts to collect self-reported QOL from people who are deaf and have ID. Methods Based on an established short measure for QOL (EUROHIS-QOL), an adapted easy-to-understand sign language interview was developed and applied in a population (n = 61) with severe-to-profound hearing loss and mild-to-profound ID. Self-reports were conducted at two time points (t1 and t2), 6 months apart. The Stark QOL, an established picture-based questionnaire, was also obtained at t2 and three Proxy ratings of QOL (from caregivers) were conducted for each participant at t1. Results Self-reported QOL was successfully administered at both time points for 44 individuals with mild and moderate ID (IQ reference age between 3.3 and 11.8 years). The self-reports showed sufficient test–retest reliability and significant correlations with the Stark QOL. As anticipated, self-reported QOL was higher than proxy-reported QOL. Test–retest reliability and internal consistency were good for self-reported QOL. Conclusion Reliable and valid self-reports of QOL can be obtained from deaf adults with mild-moderate ID using standard inventories adapted to the linguistic and cognitive level of these individuals.

2009 ◽  
Vol 18 (2) ◽  
pp. 245-251 ◽  
Author(s):  
Jantina L. van der Velde ◽  
Bertine M. J. Flokstra-de Blok ◽  
Berber J. Vlieg-Boerstra ◽  
Joanne N. G. Oude Elberink ◽  
Jan P. Schouten ◽  
...  

2022 ◽  
Vol 11 (2) ◽  
pp. 441
Author(s):  
Laura Quellhorst ◽  
Grit Barten-Neiner ◽  
Andrés de Roux ◽  
Roland Diel ◽  
Pontus Mertsch ◽  
...  

Patients with bronchiectasis feature considerable symptom burden and reduced health-related quality of life (QOL). We provide the psychometric validation of the German translation of the disease-specific Quality of Life Questionnaire-Bronchiectasis (QOL-B), version 3.1, using baseline data of adults consecutively enrolled into the prospective German bronchiectasis registry PROGNOSIS. Overall, 904 patients with evaluable QOL-B scores were included. We observed no relevant floor or ceiling effects. Internal consistency was good to excellent (Cronbach’s α ≥0.73 for each scale). QOL-B scales discriminated between patients based on prior pulmonary exacerbations and hospitalizations, breathlessness, bronchiectasis severity index, lung function, sputum volume, Pseudomonas aeruginosa status and the need for regular pharmacotherapy, except for Social Functioning, Vitality and Emotional Functioning scales. We observed moderate to strong convergence between several measures of disease severity and QOL-B scales, except for Social and Emotional Functioning. Two-week test-retest reliability was good, with intraclass correlation coefficients ≥0.84 for each scale. Minimal clinical important difference ranged between 8.5 for the Respiratory Symptoms and 14.1 points for the Social Functioning scale. Overall, the German translation of the QOL-B, version 3.1, has good validity and test-retest reliability among a nationally representative adult bronchiectasis cohort. However, responsiveness of QOL-B scales require further investigation during registry follow-up.


1995 ◽  
Vol 13 (5) ◽  
pp. 1249-1254 ◽  
Author(s):  
M J Hjermstad ◽  
S D Fossa ◽  
K Bjordal ◽  
S Kaasa

PURPOSE The European Organization for Research and Treatment of Cancer Core Quality of Life Questionnaire (EORTC QLQ-C30) is a well-validated instrument that assesses health-related quality of life (HRQOL) in cancer patients. It is used in cancer clinical trials in Europe, Canada, and the United States, and has demonstrated high reliability and validity in different groups of cancer patients. Despite thorough testing of reliability and validity, we have not identified any reports on its test/retest reliability; thus, a test/retest study was performed at the Norwegian Radium Hospital (NRH). MATERIALS AND METHODS Cancer patients from the outpatient clinic who were off treatment for > or = 3 months were eligible for the study. The EORTC QLQ-C30 was given to the patients when they presented for their visit. The second questionnaire was received by the patients 4 days later. Of 291 eligible patients, 270 (93%) agreed to participate and 190 (73%) completed both questionnaires. RESULTS The test/retest reliability measured by Pearson's correlation coefficient was high for all functional scales, with a range from .82 for cognitive and role function to .91 for physical function. The r value for global HRQOL was .85. For the symptom scales--nausea/vomiting, fatigue, and pain--the coefficients were .63, .83, and .86, respectively. The single-item coefficients ranged from .72 for diarrhea to .84 for financial impact. The Spearman rank correlation was in the same range for all dimensions. CONCLUSION The EORTC QLQ-C30 seems to yield high test/retest reliability in patients with various cancer diagnoses whose condition is not expected to change during the time of measurement.


2019 ◽  
Vol 2019 ◽  
pp. 1-7
Author(s):  
Riwanti Estiasari ◽  
Yuhyi Fajrina ◽  
Diatri Nari Lastri ◽  
Syarli Melani ◽  
Kartika Maharani ◽  
...  

Introduction. Multiple Sclerosis (MS) can affect cognitive function that might interfere with quality of life. Processing speed and memory are the most common area of cognitive impairment. Cognitive evaluation in daily practice is often difficult to be performed since it needs neuropsychological expert and is time-consuming. Brief International Cognitive Assessment for MS (BICAMS) is valid and practical for cognitive evaluation. This study aims to validate BICAMS in Indonesian MS patients and healthy controls (HC) and to analyse the effect of cognitive impairment on quality of life. Methods. BICAMS, which composes Symbol Digits Modalities Test (SDMT), California Verbal Learning Test-Second Edition (CVLT-II), and Brief Visuospatial Memory Test-Revised (BVMT-R), was translated and cross-culturally adapted to Indonesian from the original BICAMS and then administered to 40 Indonesian MS patients and 66 HC matched by sex, age, and education. Test-retest reliability was performed on 16-MS patients and 42 HC. Quality of life was measured using Multiple Sclerosis Quality of Life (MSQOL-54) instrument. Results. The SDMT, CVLT-II, and BVMT-R score in MS patients were significantly lower than those in HC (effect size, r: 0.61, 0.36, and 0.47, respectively). Test-retest reliability for all tests was satisfactory with correlation coefficient for SDMT, CVLT-II, and BVMT-R in MS subjects 0.86, 0.81, and 0.83, respectively. Using 5th percentile of HC score as cut-off, 15% MS subjects had impairment in one test, 27.5% in two tests, and 40% in three tests. BICAMS was moderately correlated with EDSS but was not correlated with disease duration and relapse rate. SDMT score correlated with physical function and physical and mental role limitation. Conclusion. BICAMS is valid and reliable for assessing cognitive function of Indonesia MS patients.


2013 ◽  
Vol 38 (1) ◽  
pp. 21-26 ◽  
Author(s):  
Gustav Jarl ◽  
Marie Holmefur ◽  
Liselotte MN Hermansson

Background:The Orthotics and Prosthetics Users’ Survey consists of five modules to assess outcomes of orthotic and prosthetic interventions: lower extremity functional status, upper extremity functional status, client satisfaction with device, client satisfaction with services and health-related quality of life.Objectives:To investigate the test–retest reliability and calculate the smallest detectable difference for all modules of the Swedish Orthotics and Prosthetics Users’ Survey.Study design:Test–retest reliability study design.Methods:A total of 69 patients at a Department of Prosthetics and Orthotics completed Orthotics and Prosthetics Users’ Survey on two occasions separated by a 2-week interval, giving 18 answers on lower extremity functional status, 41 on upper extremity functional status, 53 on client satisfaction with device, 12 on client satisfaction with services and 67 answers on health-related quality of life. Raw scores were converted into Orthotics and Prosthetics Users’ Survey units on a 0–100 scale. Intra-class correlation coefficients, Bland–Altman plots, common person linking plots and t-tests of person mean measures were used to investigate the reliability. The 95% confidence level smallest detectable differences were calculated.Results:The intra-class correlation coefficients ranged from 0.77 to 0.96 for the modules, and no systematic differences were detected between the response occasions. The smallest detectable differences ranged from 7.4 to 16.6 units.Conclusions:The test–retest reliability was satisfactory for all Orthotics and Prosthetics Users’ Survey modules. The smallest detectable difference was large on all modules except the health-related quality of life module.Clinical relevanceThe Orthotics and Prosthetics Users’ Survey modules are reliable and, thus, can be recommended for repeated measurements of patients over time. Relatively large changes are needed to achieve statistical significance when assessing individual patients.


1998 ◽  
Vol 13 (5) ◽  
pp. 231-234 ◽  
Author(s):  
L Hansson ◽  
B Svensson ◽  
T Björkman

SummaryThere has been a growing interest in the quality of life (QoL) of the mentally ill, subsequently a number of instruments to measure QoL have been developed. One of the measures of QoL which has received considerable attention is the Lancashire QoL Profile (LQOLP). The present study investigated test-retest reliability and internal consistency in the Swedish translation of the LQOLP using a cross-sectional sample of 29 inpatients. The results showed that test-retest reliability of subjective life satisfaction in the nine life domains covered by the LQOLP was satisfactory in seven of the domains, and acceptable in two (social relations and religion). Test-retest reliability for total subjective satisfaction score, global well-being, and an interviewer rated QoL were all on a satisfactory level (r > 0.80). The internal consistency and homogeneity of the total subjective QoL scale and the nine life domain subscales was satisfactory except for the social relations scale, where it was somewhat low.


2019 ◽  
Vol 56 (9) ◽  
pp. 1195-1205 ◽  
Author(s):  
Rafael Denadai ◽  
Cassio Eduardo Raposo-Amaral ◽  
Anelise Sabbag ◽  
Rafael Andrade Ribeiro ◽  
Celso Luiz Buzzo ◽  
...  

Objective: To test the Brazilian Portuguese velopharyngeal insufficiency (VPI) Effects on Life Outcome (VELO) instrument for reliability and validity. Design: Cross-sectional methodological study. Setting: Tertiary craniofacial medical center. Participants: Participants with VPI (VPI group, n = 60), with cleft and without VPI (no VPI/cleft group, n = 60), and with no cleft nor VPI (no VPI/no cleft group, n = 60) and their parents (n = 180). Interventions: All patients with VPI 8+ years old and their parents completed the Brazilian–Portuguese VELO instrument and other questionnaires (Pediatric Quality of Life Inventory4.0, PedsQL4.0; Pediatric Voice-Related Quality of Life, PVRQOL; and Intelligibility in Context Scale, ICS) at baseline; patients with VPI and their parents completed the VELO instrument again 2 weeks later. Main Outcome Measures: The VELO instrument was tested for internal consistency, test–retest reliability, discriminant validity (participants with VPI against participants with no VPI), concurrent validity against other questionnaires, criterion validity against hypernasality severity, and construct validity against nasal air emission and overall velopharyngeal competence (speech construct) and velopharyngeal gap (anatomic construct). Results: The VELO had excellent internal consistency (Cronbach α 0.99 for parents and 0.98 for participants with VPI) and test–retest reliability (all intraclass correlation coefficient > 0.87). The VELO discriminated well between VPI group and unaffected groups (all P < .05). The VELO was significantly correlated with the PedsQL4.0, PVRQOL, and ICS (– r > 0.75; P < .001). The VELO met criterion validity, speech construct validity, and anatomic construct validity ( r > 0.7; P < .001). Conclusions: The Brazilian-Portuguese VELO instrument demonstrated reliability (internal consistency and test–retest) and validity (discriminant, concurrent, criterion, and construct).


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