scholarly journals Translation and psychometric performance of the Serbian version of the Sarcopenia Quality of Life (SarQoL®) questionnaire

2020 ◽  
pp. 114-114
Author(s):  
Radmila Matijevic ◽  
Olivera Hrnjakovic ◽  
Aleksa Djurdjevic ◽  
Anton Geerinck ◽  
Charlotte Beaudart ◽  
...  
Keyword(s):  
Quality Of Life ◽  
High Risk ◽  
Construct Validity ◽  
Internal Consistency ◽  
Handgrip Strength ◽  
Community Dwelling ◽  
Psychometric Performance ◽  
Patient Reported ◽  
Ceiling Effects

Introduction/Objective. The Sarcopenia Quality of Life (SarQoL?) questionnaire is a patient-reported outcome measure specific to sarcopenia. The objective was to translate the SarQoL? questionnaire from English into Serbian and to investigate its psychometric performance. Methods. A five-stage forward-backward methodology with pre-test was used to translate the questionnaire. The validation sample in this study consisted of elderly, community-dwelling volunteers of both sexes. Three methods were used to screen for and diagnose sarcopenia: the SARC-F questionnaire (high/low risk), low handgrip strength [probable sarcopenia in the Working Group on Sarcopenia in Older People (EWGSOP2) algorithm], and the complete EWGSOP2 criteria. We investigated the questionnaire?s discriminative power, internal consistency, construct validity, and floor and ceiling effects. Results. The SarQoL? questionnaire was translated into Serbian. The validation study included 699 participants. In total, 200 participants were considered to be at high risk of sarcopenia by the SARC-F, 84 were diagnosed with low handgrip strength and 12 were confirmed to be sarcopenic. We did not find significantly lower overall QoL scores using the EWGSOP2 criteria (60.31 vs. 64.60; p = 0.155). We did find lower scores for the probably sarcopenic group (52.80 vs. 65.50; p < 0.001) and the high-risk group (50.91 vs. 69.02; p < 0.001). The Cronbach?s ? coefficient was 0.87, indicating a high internal consistency. Construct validity was adequate, with 75% of hypotheses on expected correlations with the SF-36 and EQ-5D questionnaires confirmed. No floor or ceiling effects were observed. Conclusion. We successfully translated the SarQoL? into Serbian, and showed that it is a valid tool for measuring QoL in the community-dwelling elderly.

Validation of the Bronchiectasis Impact Measure (BIM) – a novel patient reported outcome measure

2020 ◽  
pp. 2003156
Author(s):  
Megan L. Crichton ◽  
Emily K. Dudgeon ◽  
Amelia Shoemark ◽  
James D. Chalmers
Keyword(s):  
Quality Of Life ◽  
Construct Validity ◽  
Acute Exacerbation ◽  
Internal Consistency ◽  
General Health ◽  
Outcome Measure ◽  
Patient Reported Outcome ◽  
Patient Reported ◽  
Impact Measure

IntroductionExisting quality of life and symptom tools used in bronchiectasis trials are either not disease specific or are complex and have not been consistently responsive. We developed a simple patient reported visual analogue outcome measure, the bronchiectasis impact measure (BIM) for use in clinical research including clinical trials.MethodsPatients with bronchiectasis attending a tertiary referral clinic in the East of Scotland were invited to complete the BIM questionnaire and the Quality of life bronchiectasis questionnaire at baseline with repeat questionnaires after 2 weeks and 6 months. We assessed internal consistency, test-retest reliability, construct validity and responsiveness by evaluating change during an acute exacerbation.Results173 patients were included. The 8 domains (Cough, sputum, breathlessness, tiredness, activity, general health, control, exacerbations) showed excellent internal consistency (Cronbach α 0.93). The intraclass correlation coefficient (ICC) demonstrated excellent reliability over a 2-week period, cough (0.79 (95%CI 0.70–0.85)), sputum (0.86 (95%CI 0.80–0.90)), dyspnoea (0.82 (95%CI 0.74–0.87)), tiredness (0.88 (95%CI 0.82–0.91)), activity (0.84 (95%CI 0.77–0.89)), general health (0.81 (95%CI 0.74–0.87)), control (0.83 (95%CI (0.75–0.88)) and exacerbation (0.71 (95%CI (0.60–0.79)). Domains correlated strongly with bronchiectasis severity and exacerbation history. Both distribution and patient-based methods estimated the MCID for each domain as 1.5 points on a 10-point scale. Statistically significant changes in all BIM domains were observed during an acute exacerbation.ConclusionThe BIM is a simple patient reported outcome. This study validates the internal consistency, reliability, construct validity and response of the tool at acute exacerbation. Further validation of the tool is now required.

scholarly journals P487 Development and validation of a new patient-reported outcome measure for Crohn’s perianal fistula: Crohn’s anal fistula quality-of-life (CAF-QoL) scale

2020 ◽  
Vol 14 (Supplement_1) ◽  
pp. S428-S428
Author(s):  
S Adegbola ◽  
L Dibley ◽  
K Sahnan ◽  
P Tozer ◽  
T Wade ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Systematic Review ◽  
Construct Validity ◽  
Anal Fistula ◽  
Internal Consistency ◽  
Perianal Fistula ◽  
Specific Patient ◽  
Perianal Fistulas ◽  
Patient Reported

Abstract Background Crohn’s perianal fistulas are challenging for patients and clinicians. Many do not respond to available treatments, and despite recommendations by a recent global consensus, there are currently no specific patient-derived quality of life (QoL) tools to measure outcomes including response to treatment, in patients with Crohn’s perianal fistulas. Exploratory qualitative work has demonstrated that Crohn’s perianal fistulas reduce QoL far beyond restricting daily and sexual activities, and a patient-centred, patient-derived tool is needed. We present a patient-reported outcomes measure (PROM) for this complicated disease phenotype. Methods A 35 item draft questionnaire was generated using information from: (a) unstructured qualitative patient interviews, exploring the experience of living with Crohn’s perianal fistulas; (b) a consensus exercise analysing outcomes from a systematic review of studies assessing medical, surgical and combined (medical/surgical) treatment of Crohn’s perianal fistula; and (c) a patient and public involvement meeting. Psychometric properties were assessed including construct validity (by comparison with the Hospital Anxiety and Depression Scale, HADS and the United Kingdom version of the Inflammatory Bowel Disease Questionnaire, UK-IBDQ), and reliability and responsiveness assessed by test-retest analysis. Results Data from 211 patients contributed to the development of the CAF-QoL scale, following the collation of items including patient experience interviews, a systematic review and a consensus exercise involving 187 stakeholders (patients, gastroenterologists, surgeons, IBD specialist nurses, radiologists). Internal consistency was good with Cronbach’s α of 0.88. Analysis aided reduction of the questionnaire to 26 items that demonstrated good internal consistency, good stability (intra-class correlation 0.98) and good construct validity and responsiveness with positive correlation with the UK IBDQ and HADS. Conclusion A disease-specific PROM to assess clinical outcome (i.e. QoL) as baseline and following interventions in patients with Crohn’s anal fistula—the CAF-QoL—is ready for use. Translation and cross-cultural validation will aid wider international dissemination.

scholarly journals Evaluating the measurement properties of the 26-item Expanded Prostate Cancer Index Composite (EPIC-26) with a multicenter cohort

2019 ◽  
Vol 14 (4) ◽  
Author(s):  
R. Trafford Crump ◽  
Alex Peterson ◽  
Camille Charbonneau ◽  
Kevin V. Carlson ◽  
Jason M. Sutherland ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Prostate Cancer ◽  
Factor Analysis ◽  
Confirmatory Factor Analysis ◽  
Construct Validity ◽  
Localized Prostate Cancer ◽  
Measurement Properties ◽  
Confirmatory Factor ◽  
Ceiling Effects

Introduction: We aimed to evaluate the psychometric properties of the 26-item Expanded Prostate Cancer Index Composite (EPIC-26) for measuring the quality of life in patients treated for localized prostate cancer. The EPIC-26 is a patient-reported outcome instrument recommended for use with patients treated for localized prostate cancer. Methods: This study is based on data collected prospectively between September 2014 and February 2017 in Alberta, Canada. Men were treated with either radical prostatectomy or radiation therapy and administered the EPIC-26. Responses to the EPIC-26 were the primary outcome. Construct validity was measured using confirmatory factor analysis. Reliability was measured using Chronbach’s alpha and item-total correlation. Ceiling and floor effects were also investigated. Results: EPIC-26 response data from 205 participants (prostatectomy =138; radiation=60; both=7) were used in this analysis. The EPIC-26 was administered an average of 33.8 weeks after treatment. The confirmatory factor analysis model did not meet the threshold for adequate fit. Several items had near-zero factor loadings and were non-significant. Four out of the EPIC- 26’s five domains met the acceptable reliability threshold based on Cronbach’s alpha. Ceiling effects were observed in four out of five domains. Conclusions: The EPIC-26 demonstrated poor construct validity, adequate reliability, and large ceiling effects. Several issues were observed, suggesting that the instrument’s five domains were not well-defined by their respective items. The original EPIC’s conceptual framework should be reviewed and the shortened instrument revised to improve its performance for measuring post-treatment quality of life.

scholarly journals Hydroxycarbamide Plus Aspirin Versus Aspirin Alone in Patients With Essential Thrombocythemia Age 40 to 59 Years Without High-Risk Features

2018 ◽  
Vol 36 (34) ◽  
pp. 3361-3369 ◽  
Author(s):  
Anna L. Godfrey ◽  
Peter J. Campbell ◽  
Cathy MacLean ◽  
Georgina Buck ◽  
Julia Cook ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Risk Factors ◽  
Platelet Count ◽  
High Risk ◽  
Vascular Events ◽  
End Point ◽  
High Risk Factors ◽  
Patient Reported

Purpose Cytoreductive therapy is beneficial in patients with essential thrombocythemia (ET) at high risk of thrombosis. However, its value in those lacking high-risk features remains unknown. This open-label, randomized trial compared hydroxycarbamide plus aspirin with aspirin alone in patients with ET age 40 to 59 years and without high-risk factors or extreme thrombocytosis. Patients and Methods Patients were age 40 to 59 years and lacked a history of ischemia, thrombosis, embolism, hemorrhage, extreme thrombocytosis (platelet count ≥ 1,500 × 109/L), hypertension, or diabetes requiring therapy. In all, 382 patients were randomly assigned 1:1 to hydroxycarbamide plus aspirin or aspirin alone. The composite primary end point was time to arterial or venous thrombosis, serious hemorrhage, or death from vascular causes. Secondary end points were time to first arterial or venous thrombosis, first serious hemorrhage, death, incidence of transformation, and patient-reported quality of life. Results After a median follow-up of 73 months and a total follow-up of 2,373 patient-years, there was no significant difference between the arms in the likelihood of patients reaching the primary end point (hazard ratio, 0.98; 95% CI, 0.42 to 2.25; P = 1.0). The incidence of significant vascular events was low, at 0.93 per 100 patient-years (95% CI, 0.61 to 1.41). There were also no differences in overall survival; in the composite end point of transformation to myelofibrosis, acute myeloid leukemia, or myelodysplasia; in adverse events; or in patient-reported quality of life. Conclusion In patients with ET age 40 to 59 years and lacking high-risk factors for thrombosis or extreme thrombocytosis, preemptive addition of hydroxycarbamide to aspirin did not reduce vascular events, myelofibrotic transformation, or leukemic transformation. Patients age 40 to 59 years without other clinical indications for treatment (such as previous thrombosis or hemorrhage) who have a platelet count < 1,500 × 109/L should not receive cytoreductive therapy.

Validity of the PROMIS-29 in a large Australian cohort of patients with systemic sclerosis

2017 ◽  
Vol 2 (3) ◽  
pp. 188-195 ◽  
Author(s):  
Kathleen Morrisroe ◽  
Wendy Stevens ◽  
Molla Huq ◽  
Joanne Sahhar ◽  
Gene-Siew Ngian ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Systemic Sclerosis ◽  
Construct Validity ◽  
Short Form ◽  
Good Alternative ◽  
Measurement Information ◽  
Internal Reliability ◽  
Sf 36 ◽  
Patient Reported

Background We aimed to evaluate the construct validity of the Patient-Reported Outcomes Measurement Information System 29 (PROMIS-29) in Australian systemic sclerosis (SSc) patients. Methods SSc patients, identified through the Australian Scleroderma Cohort Study database, completed two quality-of-life instruments concurrently, the PROMIS-29 and the Medical Outcomes Study 36-Item Short Form Health Survey (SF-36). The construct validity of the PROMIS-29 was assessed by the correlations between the PROMIS-29 and the SF-36 and Health Assessment Questionnaire Disability Index (HAQ-DI). Cronbach's alpha was used to test the internal reliability of all instruments in Australian SSc patients and non-parametric correlation, including Spearman's correlation, was used to test the construct validity of PROMIS-29 against the SF-36 and HAQ-DI. Results A total of 477 completed questionnaires were returned, equating to a response rate of 59.6%. The mean (±SD) age of respondents at the time of the survey was 64.1 (±11.1) years. They were predominantly female (87.4%), with limited disease subtype (lcSSc) (77.8%) and long disease duration from onset of first non-Raynaud's phenomenon symptom at the time of survey (10.9 ± 11.1 years). For the correlation analysis between the PROMIS-29 and the legacy instruments, all Spearman correlation coefficients were in the logical direction and highly significant suggesting that the PROMIS-29 is a good alternative to other validated measures of disease burden. Conclusions Our study indicates that the PROMIS-29 questionnaire is a valid instrument for measuring health-related quality of life in Australian females with lcSSc of long duration.

Measuring Patient-Reported Health-Related Quality of Life in Velopharyngeal Insufficiency: Reliability and Validity of the Brazilian Portuguese Version of the VELO Instrument

2019 ◽  
Vol 56 (9) ◽  
pp. 1195-1205 ◽  
Author(s):  
Rafael Denadai ◽  
Cassio Eduardo Raposo-Amaral ◽  
Anelise Sabbag ◽  
Rafael Andrade Ribeiro ◽  
Celso Luiz Buzzo ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Construct Validity ◽  
Internal Consistency ◽  
Reliability And Validity ◽  
Brazilian Portuguese ◽  
Velopharyngeal Insufficiency ◽  
Retest Reliability ◽  
Related Quality ◽  
Test Retest Reliability

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).

scholarly journals Association of Physical Activity, Muscle Mass, Strength, and Function to Quality of Life in Older Adults

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 185-186
Author(s):  
Murad Taani ◽  
Chi Cho ◽  
Julie Ellis
Keyword(s):  
Quality Of Life ◽  
Physical Activity ◽  
Older Adults ◽  
Muscle Mass ◽  
Handgrip Strength ◽  
Community Dwelling ◽  
Steps Per Day ◽  
Mental Hrqol ◽  
And Function

Abstract Physical inactivity and loss of muscle mass, strength, and function are associated with negative outcomes including disability and a decline in health-related quality of life (HRQoL) among older adults. Older adults living in continuing care retirement communities (CCRCs) are at greater risk for declining physical activity and muscle outcomes compared to community-dwelling older adults. Few researchers studying the association of muscle and physical activity have examined the distinction between physical and mental HRQoL. Understanding the differential association of physical and mental HRQoL to physical activity and muscle outcomes can inform the development of useful interventions. The aim of this study was to examine the relationships between physical activity, muscle mass, strength, function and physical and mental HRQoL. Using a descriptive, correlational design, 105 older adults living in CCRCs were recruited. Light physical activity (LPA), moderate physical activity (MPA), sedentary behavior, and steps per day were assessed using ActiGraph GT3X. Appendicular skeletal muscle mass (ASMM) was assessed with bioelectrical impedance spectroscopy, handgrip strength with JAMAR Smart Hand Dynamometer, muscle function with the Short Physical Performance Battery (SPPB) test, and physical and mental HRQoL with the SF-36 questionnaire. The mean age of participants was 83 (SD=7.4). Using multiple regression models adjusted for sex and age, steps per day and SPPB score explained 38.4 % of the variance in physical HRQoL. Handgrip strength explained 8 % of the variance in mental HRQoL. These findings suggest that QoL improvement programs should include components to improve physical activity, muscle strength and function.

scholarly journals Validating an Instrument for Direct Patient Reporting of Distress and Chemotherapy-Related Toxicity among South African Cancer Patients

Cancers ◽  
2021 ◽  
Vol 14 (1) ◽  
pp. 95
Author(s):  
Charmaine L. Blanchard ◽  
Keletso Mmoledi ◽  
Michael H. Antoni ◽  
Georgia Demetriou ◽  
Maureen Joffe ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Construct Validity ◽  
Cancer Patients ◽  
South African ◽  
Pearson Correlation ◽  
Performance Status ◽  
Summary Score ◽  
Life Questionnaire ◽  
Patient Reported

Patient-reported outcome measures (PROM) for monitoring treatment toxicity improve quality of life (QoL) and clinical outcomes. However, no such PROMs exist for sub-Saharan African cancer patients. We aimed to validate the Patient Reported Symptoms-South Africa (PRS-SA) survey, a novel PROM for measuring distress and chemotherapy-related symptoms in South African cancer patients. We enrolled patients at the oncology clinic at Charlotte Maxeke Hospital, Johannesburg. At three separate visits, participants simultaneously completed the PRS-SA survey and several previously validated questionnaires. We constructed a receiver operator characteristics curve for distress levels predicting a Hospital Anxiety and Depression Scale (HADS) score ≥15. We evaluated construct validity for symptom items by comparing severity to the EORTC Core Quality of Life Questionnaire (QLQ-C30) summary score (Pearson correlation tests) and ECOG performance status (Mann–Whitney U tests). We assessed symptom item responsiveness by comparing change in severity to change in QLQ-C30 summary score and comparing standardized mean scores with negative, no, or positive change on the Global Impression of Change (GIC) questionnaire (Jockheere–Terpstra trend test). Overall, 196 participants with solid tumors completed instruments. A distress score of 4 had 82% sensitivity and 55% specificity for clinical depression/anxiety. All symptom items showed construct validity by association with either QLQ-C30 score or performance status (highest p = 0.03). All but cough showed responsiveness to change in QLQ-C30 score (highest p = 0.045). In South African cancer patients, the PRS-SA’s stress scale behaves similarly to the distress thermometer in other populations, and the symptom items demonstrated construct validity and responsiveness. Of note, 46% and 74% of participants who completed the PRS-SA in English or isiZulu, respectively, required assistance reading half or more of the instrument.

scholarly journals Validation of a Filipino Translation of the Children's Dermatology Life Quality Index Text Version

2020 ◽  
Vol 54 (3) ◽  
Author(s):  
Paula Karina N. Gonzales-Carait ◽  
Rowena F. Genuino ◽  
Katrina Angela Z. Reyes ◽  
Belen L. Dofitas
Keyword(s):  
Quality Of Life ◽  
Construct Validity ◽  
Internal Consistency ◽  
Skin Disease ◽  
Dermatology Life Quality Index ◽  
Quality Index ◽  
Skin Diseases ◽  
Life Quality ◽  
Internal Consistency Reliability

Background. Skin diseases that are longstanding or highly symptomatic can have devastating consequences in the quality of life of children. There is a need to have a validated Filipino translation of a dermatology quality of life tool for young patients with skin diseases. Objectives. To assess the validity and reliability of the Indeks ng Kalidad ng Buhay Pang-dermatolohiya ng mga Bata (IKPaB), a Filipino translation of the Children’s Dermatology Life Quality Index (CDLQI). Methods. This cross-sectional study was conducted among children aged 4 to 16 years at a tertiary hospital outpatient department. The IKPaB was pretested and revised using focus group discussion until it was approved by the original developers for validation. Face validity was determined through cognitive debriefing interviews. Construct validity was determined by comparing IKPaB scores of participants with skin disease and without skin disease using Mann-Whitney U test. Criterion validity was determined by comparing IKPaB with a validated Filipino-translated PedsQL as the criterion, using Spearman rank correlation. Internal consistency reliability was determined using Cronbach’s coefficient. Multiple regression was used to correlate age, sex and disease duration. Results. The IKPaB was assessed to be comprehensible, clear, and culturally appropriate. Among 288 participants, it showed satisfactory construct validity (U = 8849, Z= 0.87; P = 0.89) and internal consistency reliability (α = 0.89), with a negative but weak correlation with the PedsQL® (rho= -0.300, P = 0.000). Conclusion. The IKPaB is a valid and reliable Filipino translation of CDLQI. We recommend further validation for use in clinical practice and research.

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