scholarly journals Cultural adaptation of the Polish version of the PAH-SYMPACT questionnaire (PL)

Author(s):  
Kathie Sarzyńska ◽  
Jacek Polański ◽  
Grzegorz Kopeć ◽  
Ewa Mroczek ◽  
Beata Jankowska-Polańska

Abstract Background: Pulmonary arterial hypertension (PAH) is a rare chronic disease that significantly affects patients' ability to perform daily activities, decreasing physical and mental well-being and social functioning. Symptoms of the disease increase as it progresses, leading to disability and death. In addition, the quality of life of patients deteriorates as the disease progresses and may reflect the effectiveness of the therapy used. Most questionnaires used in PAH clinical trials are generic quality-of-life (QoL) measures that may do not adequately reflect the clinical status and symptoms, changes in health status, or prognosis of patients with PAH. The purpose of this study was to translate and culturally adapt the Polish version of the PAH-SYMPACT questionnaire to reflect the severity of symptoms and their effects on patients’ daily functioning. Material and methods: The study included 55 patients with PAH treated, as part of a pulmonary hypertension treatment program in Poland. Validation of this questionnaire met the guidelines for translation and validation of questionnaires, which are set out in the document on the process of translation and adaptation of World Health Organization tools. Reliability was tested using a measure of internal consistency (Cronbach's α) and test-retest reliability. Correctness was confirmed using known group validity.Results: Moderate internal consistency (Cronbach's) was found for all questionnaire domains (cardiopulmonary symptoms α=0.706; cardiovascular symptoms α=0.806, physical effects α=0.904, psychological effects α=0.817) and test-retest reliability was satisfactory. The PAH-SYMPACT questionnaire (PL) met all validation criteria and can be used to assess quality of life in patients with PAH.Conclusion: Psychometric evaluation of the Polish version of the PAH-SYMPACT (PL) indicates that it is a reliable and valid measure tool to detect quality of life patients with PAH.

2021 ◽  
Vol 20 (Supplement_1) ◽  
Author(s):  
K Sarzynska ◽  
J Polanski ◽  
G Kopec ◽  
E Mroczek ◽  
B Jankowska-Polanska

Abstract Funding Acknowledgements Type of funding sources: None. Background Pulmonary arterial hypertension (PAH) is a rare chronic disease that significantly affects patients" ability to perform daily activities, decreasing physical and mental well-being and social functioning. Symptoms of the disease increase as it progresses, leading to disability and death. In addition, the quality of life of patients deteriorates as the disease progresses and may reflect the effectiveness of the therapy used. Most questionnaires used in PAH clinical trials are generic quality-of-life (QoL) measures that may do not adequately reflect the clinical status and symptoms, changes in health status, or prognosis of patients with PAH. Purpose The purpose of this study was to translate and culturally adapt the Polish version of the PAH-SYMPACT questionnaire to reflect the severity of symptoms and their effects on daily functioning. Material and methods The study included 55 patients with PAH treated, as part of a pulmonary hypertension treatment program in Poland. Patients were asked to complete the PAH-SYMPACT questionnaire. After about 2 weeks, a follow-up was carried out. Validation of this questionnaire met the guidelines for translation and validation of questionnaires, which are set out in the document on the process of translation and adaptation of World Health Organization tools.  Reliability was tested using a measure of internal consistency (Cronbach"s α) and test-retest reliability. Correctness was confirmed using known group validity. Results Moderate internal consistency (Cronbach"s) was found for all questionnaire domains (cardiopulmonary symptoms α=0.706; cardiovascular symptoms α=0.806, physical effects α=0.904, psychological effects α=0.817) and test-retest reliability was satisfactory. The PAH-SYMPACT questionnaire (PL) met all validation criteria and can be used to assess quality of life in patients with PAH. Conclusion Psychometric evaluation of the Polish version of the PAH-SYMPACT (PL) indicates that it is a reliable and valid measure tool to detect quality of life patients with PAH.


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).


2006 ◽  
Vol 24 (18_suppl) ◽  
pp. 18527-18527
Author(s):  
A. K. Nowak

18527 Background: ZEST is a placebo-controlled trial of sertraline for people with advanced cancer who feel depressed, anxious or tired but do not have a clear indication for antidepressants. We describe here the aspects of quality of life (QL) rated most troublesome at baseline by the first 150 subjects. Methods: Subjects completed a battery of QL questionnaires including the CES-D, HADS, FACT-G, FACT-Fatigue, and the Patient Disease and Treatment Assessment Form (Pt DATA Form). The Pt DATA Form assesses pertinent symptoms and concerns using 40 single items with a uniform response scale from 0 (no trouble at all) to 10 (worst I can imagine). Test-retest reliability was assessed with the intraclass correlation coefficient (ICC). Convergent validity was assessed by testing correlations between single items from the PT DATA Form and the corresponding, validated, multi-item scales. Results: The median age was 66 (IQR 59 to 73); median Karnofsky Perfomance Status was 80 (IQR 70 to 90); 63% were male; commonest primaries were colorectal (17%), lung (16%), prostate, (14%), breast (13%), and gynaecologic (10%). The aspects rated worst (mean score, proportion scoring >3) were: Fatigue (5.5, 90%), Problems with sex (4.1, 51%), Trouble sleeping (3.6, 49%), Drowsiness (3.5, 54%), Not feeling myself (3.5, 51%), Pain (3.4, 45%), Shortness of breath (3.4, 47%), Problems doing what I wanted (3.1, 45%), Anxiety (3.0, 40%), Depression (2.7, 36%), Dry mouth (2.7, 38%), Trouble concentrating (2.7, 30%), Irritability (2.6, 32%), Altered sense of taste (2.5, 34%), Difficulty walking (2.4, 32%), and Constipation (2.1, 24%). Mean scores were higher in men than women for Problems with sex (5.0 v 2.4, p < 0.001); and, in subjects aged 65 or younger for Hair loss (2.4 v 1.1, p = .01). There were no other significant differences by gender or age. Correlations supported the validity of the single item scales for depression, anxiety, fatigue; and for physical, emotional and overall well-being. The test-retest reliability of the Pt DATA Form was good (ICC >0.5 for 34 of 40 items). Conclusions: Pertinent aspects of QL were validly measured with single item scales. Insomnia, dry mouth, altered sense of taste and irritability were more troublesome than many other, better studied symptoms. No significant financial relationships to disclose.


2017 ◽  
Vol 11 (4) ◽  
pp. 586-593
Author(s):  
Parisa Azimi ◽  
Taravat Yazdanian ◽  
Ali Montazeri

<sec><title>Study Design</title><p>Prospective clinical study.</p></sec><sec><title>Purpose</title><p>To translate and validate the Quality of Life Questionnaire of the European Foundation for Osteoporosis (ECOS-16) in patients with osteoporotic vertebral fractures in Iran.</p></sec><sec><title>Overview of Literature</title><p>It is important to assess the psychometric properties of instruments measuring patient-reported outcomes.</p></sec><sec><title>Methods</title><p>The translation was performed using the backward-forward translation method. The final version was generated by consensus among the translators. Every woman who had a T-score of &lt;−2.5 completed ECOS-16. Patients were divided into two study groups according to the World Health Organization's criteria: those with at least one vertebral fracture (surgery group) and those with no fractures (control group). They were asked to respond to the questionnaire at three points in time: preoperative and twice within 1-week interval after surgery assessments (6-month follow-up). The 36-item short-form health survey (SF-36) also was completed. The psychometric properties of the questionnaire were assessed using internal consistency, test-retest reliability, convergent validity, discriminant validity, and responsiveness.</p></sec><sec><title>Results</title><p>Of 137 recruited women, 39 underwent surgery and 98 did not. Analysis of the ECOS-16 scales showed an appropriate reliability with Cronbach's alpha of &gt;0.70 for all scales. Test-retest reliability as indicated by intraclass correlation coefficient was found to be 0.85 (0.68–0.91). Additionally, the correlation of each item with its hypothesized domain of the ECOS-16 showed acceptable results, suggesting that the items had a substantial relationship with their own domains. Further analysis also indicated that the questionnaire was responsive to change (effect size, 0.85; standardized response mean, 0.93) (<italic>p</italic>&lt;0.001). Significant correlations existed between scores of similar subscales of ECOS-16 and SF-36 (<italic>p</italic>&lt;0.001).</p></sec><sec><title>Conclusions</title><p>ECOS-16 is an acceptable, reliable, valid, and responsive measure to assess the quality of life in patients with osteoporotic vertebral fractures.</p></sec>


2022 ◽  
Author(s):  
Eranthi Weeratunga ◽  
Chandanie Senadheera ◽  
Manjula Hettiarachchi ◽  
Bilesha Perera

Abstract Background: Religious and spiritual support (RSS) is considered a vital method of coping among patients with cancer and cancer survivors. Measuring religion and spiritual support received by cancer patients has very little evidence in Sri Lanka compared to the western countries. It would be affected on cancer care management and speedy recovery process of cancer patients; could be benefited to reduce long-term suffering of patients with cancer. This study aimed to develop and validate a tool to measure religion and spiritual support in patients with cancer. Methods: WHO guidelines were incorporated into the cross-cultural adaptation of the newly developed religious and spiritual support scale (RSSS). Internal consistency for the overall RSSS was investigated using Cronbach’s alpha. Intra-class correlation coefficient (ICC) was used to examine the test-retest reliability of the RSSS for the same sample. Validity was checked using convergent and divergent validity. Principal component analysis (PCA) was performed to test factorial/construct validity.Results: The Sinhalese version of RSSS showed a high internal consistency (Cronbach’s alpha-0.883). The scale revealed favourable test-retest reliability (ICC = 0.981). The overall RSSS score correlated negatively and positively with depressive symptoms (r= - 0.338, p<0.05) and quality of life scores; overall (r=0.421, p<0.001), physical (r=0.340, p<0.05), psychological (r=0.279, p=0.08), social (r=0.373, p<0.05) and environmental quality of life (r=0.429, p<0.001) confirming satisfactory divergent and convergent validity of the Sinhalese version of the RSSS. Factor analysis with PCA extracted two factors explaining 74.47% of the variance.Conclusions: The Sinhalese version of RSSS is a reliable and valid scale to assess the religious and spiritual support of patients with cancer in Sri Lanka.


2020 ◽  
Vol 2020 ◽  
pp. 1-5
Author(s):  
Ekaterina S. Philippova ◽  
Igor V. Bazhenov ◽  
Alexander V. Ziryanov ◽  
Ekaterina Y. Moskvina

The Short Form Qualiveen (SF-Qualiveen) is an 8-item version of the Qualiveen questionnaire used to evaluate the impact of urinary symptoms on the quality of life in patients with urological dysfunction due to neurological disorders. The questionnaire was never available in the Russian language before. The study is aimed at providing the translation, cultural adaptation, and validation of a Russian version of the SF-Qualiveen for the use in patients with multiple sclerosis (MS). Materials and Methods. The original English language version of the SF-Qualiveen was translated into Russian according to the cultural and linguistic adaptation algorithm. The participants (50 MS patients with neurogenic bladder and 10 relatively healthy volunteers) filled out the finalized Russian version of the SF-Qualiveen and the Neurogenic Bladder Symptom Score (NBSS) twice, 2 weeks apart. The data obtained was used to determine the internal consistency (Cronbach’s alpha), external validity (the Spearman correlation), and test-retest reliability (intraclass correlation coefficient (ICC)) of the questionnaire. Results. The mean SF-Qualiveen total score was 2.51±0.79 in patients with a neurogenic bladder and 0.1±0.02 in the control group (p<0.001). Cronbach’s alpha exceeded 0.9 indicating an excellent internal consistency of the questionnaire. The retest did not reveal any significant differences between the findings. The test-retest reliability was good for all items and domains (ICC 0.81-0.89). The total score demonstrated the highest ICC (0.89). The external validity was verified by a strong correlation demonstrated between the SF-Qualiveen and NBSS scores. Conclusions. The Russian SF-Qualiveen questionnaire is a reliable, valid, and consistent tool for the assessment of a urinary disorder impact on the quality of life in patients with MS.


2018 ◽  
Vol 59 (3) ◽  
pp. 1-6
Author(s):  
Juan Pablo Martínez Cano ◽  
Ana Sofia Arango Gutiérrez ◽  
Carolina Cabrera Salom ◽  
Andres Mauricio Castro Llanos ◽  
Alfredo Martínez Rondanelli

Background: The Western Ontario Rotator Cuff Index (WORC) is an assessment tool developed to evaluate quality of life in patients with rotator cuff disease (RCD). The purpose of this study is to translate the WORC index into Spanish and to evaluate its reproducibility and internal consistency in patients with RCD. Methods: Following guidelines from literature, the WORC index was translated. Sixty patients with RCD were asked to complete the questionnaire. To evaluate reliability, they were asked to answer it for a second time within the next 14 days. The Cronbach’s α (CA) and the intraclass correlation coefficient (ICC) were calculated to determine test-retest reliability and internal consistency. Bland-Altman plot and reliable change index (RCI) were used to evaluate measurement error. Results: Cronbach’s α was 0.96 for the total WORC score (ranges 0.85-0.94 for the five domains).Excellent test-retest reliability was seen with an ICC of 0.98, with the domains ranging between 0.91-0.97. The Bland-Altman plot showed no systematic differences, and the RCI for the total WORC index was 7.6%. Conclusion: The Spanish version of the WORC index is a valid and reliable tool for evaluating quality of life in patients with RCD and may be used in Spanish speaking countries like Colombia. Level of evidence: Basic Science Study, Development or Validation of Outcomes Instruments/Classification Systems.


Author(s):  
Suet-Lai Leung ◽  
Hiroyuki Tanaka ◽  
Timothy C.Y. Kwok

<b><i>Introduction:</i></b> Valid assessments of quality of life (QoL) and cognition are important in caring for individuals with severe dementia; there is an urgent need for validated assessment tools for specific populations. This study aimed to develop and validate Chinese versions of the Quality of Life in Late-Stage Dementia (QUALID-C) scale and the Cognitive Test for Severe Dementia (CTSD-C) for Chinese older adults. <b><i>Methods:</i></b> This was a cross-sectional validation study comprised of 93 Chinese older adults with severe dementia recruited from 6 residential homes. The content and cultural validity of the QUALID-C and CTSD-C were evaluated by a 7-member expert panel, and interrater reliability, test-retest reliability, internal consistency, concurrent validity, and factorial structure were examined. <b><i>Results:</i></b> The QUALID-C showed acceptable internal consistency (Cronbach α = 0.65), good interrater reliability (intraclass correlation coefficient [ICC] = 0.99), and good test-retest reliability (ICC = 0.96). Principal component analysis yielded 3 factors; the items loaded on the factors were comparable to those in previous studies and suggested the scale’s multidimensionality to measure QoL. The CTSD-C showed satisfactory internal consistency (Cronbach α = 0.862), good interrater reliability (ICC = 0.99), and good test-retest reliability (ICC = 0.958). Principal component analysis yielded 3 factors; the items loaded on factors 1 and 2 resembled the items of the automatic response and attentional control factors of the original study. <b><i>Conclusion:</i></b> The QUALID-C and the CTSD-C are reliable and valid scales to measure the QoL and cognitive functions of Chinese older adults with severe dementia. These assessments can be utilized to evaluate the effectiveness of treatment and future research work.


Author(s):  
Lynne Turner-Stokes ◽  
Klemens Fheodoroff ◽  
Jorge Jacinto ◽  
Jeremy Lambert ◽  
Christine De La Loge ◽  
...  

Objective: Psychometric evaluation of the Spasticity-related Quality of Life 6-Dimensions instrument (SQoL-6D). Design: A clinimetric evaluation conducted in a multicentre, prospective, longitudinal cohort study at 8 UK sites. Patients: Adult patients (n=104) undergoing focal treatment of upper-limb spasticity. Methods: The SQoL-6D was administered in the clinic at enrolment and at 8 weeks, then 1–4 days later at home to assess test-retest reliability. Results: The SQoL-6D demonstrated adequate construct validity and unidimensionality of the scale, allowing the calculation of a Total score. Cronbach’s alpha (0.74) supported the internal consistency reliability, while the intraclass correlation coefficient supported test-retest reliability (0.82). Correlation coefficients with established instruments supported convergent validity, while significant differences between known-groups (of differing clinical severity) in SQoL-6D Total score confirmed its sensitivity to both cross-sectional and longitudinal differences. Conclusion: The SQoL-6D is a promising new measure to assess health status for patients with upper-limb spasticity of any aetiology. Further investigation and exploration of the allocation of weights to convert the SQoL-6D to a health-related quality of life utility index, are required.


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