scholarly journals Angioedema quality of life questionnaire (AE-QoL) - interpretability and sensitivity to change

2019 ◽  
Vol 17 (1) ◽  
Author(s):  
Kanokvalai Kulthanan ◽  
Leena Chularojanamontri ◽  
Chuda Rujitharanawong ◽  
Puncharas Weerasubpong ◽  
Marcus Maurer ◽  
...  

Abstract Background The Angioedema Quality of Life (AE-QoL) is the first patient reported outcome measure developed for the assessment of quality of life (QoL) impairment in patients with recurrent angioedema (RAE). This study aimed to evaluate the clinimetric properties of the AE-QoL in Thai patients and to establish categories of QoL impairment assessed by the AE-QoL. Methods The validated Thai version of the Dermatology Life Quality Index (DLQI) and Patient Global Assessment of Quality of Life (PGA-QoL) were used to comparatively evaluate the Thai version of AE-QoL. Spearman correlations between the Thai AE-QoL and two other standard measurements (DLQI and PGA-QoL) were investigated to determine convergent validity. The Thai DLQI and PGA-QoL were used to categorize patients according to their QoL. Known-group validity of the Thai AE-QoL was later analyzed. The reliability of the Thai AE-QoL was investigated using Cronbach’s alpha and intraclass correlation. Three different approaches including the distribution method, receiver operating characteristic curve analysis, and the anchor based-method were used for the interpretability. Results A total of 86 patients with RAE with a median age of 38.0 ± 15.1 years (range 18–76) were enrolled. Of those, 76 patients (88%) had RAE with concomitant wheals, and 10 patients (11.6%) had RAE only. The AE-QoL assessed RAE-mediated QoL impairment with high convergent validity and known-groups validity, high internal consistency and test-retest reliability, and good sensitivity to change. Although the AE-QoL did not differentiate between patients with moderate and large effect as measured by PGA-QoL or DLQI in this study, AE-QoL total values of 0–23, 24 to 38, and ≥ 39 could define patients with “no effect”, “small effect”, and “moderate to large effect” of RAE on their QoL, respectively. Conclusions This study supports the validity and reliability of the Thai version of the AE-QoL, which is a very different language from the original version. Categories allow to classify the effect of RAE on patients’ QoL as “none”, “small”, and “moderate to large”. Further studies are needed to confirm the applicability of AE-QoL in other Asian populations”.

Author(s):  
Helen Beckmann ◽  
Christoph Heesen ◽  
Matthias Augustin ◽  
Christine Blome

Abstract Background: Treatment- and work-related aspects have been neglected in health-related quality of life (HRQOL) measures in multiple sclerosis (MS). We aimed to develop a brief instrument covering all important impairment-, activity-, participation-, and treatment-related aspects for use in research and practice. Methods: The 27-item Multiple Sclerosis Quality of Life Questionnaire (MS-QLQ27) was developed using open item collection, a multidisciplinary expert panel, and cognitive pretesting. It was evaluated for reliability, construct validity, and responsiveness with 100 patients presenting with relapse (84 at follow-up ~14 days later). Construct validity was analyzed by correlating the MS-QLQ27 with the disease-specific Hamburg Quality of Life Questionnaire in MS (HAQUAMS) and generic HRQOL instuments. The Expanded Disability Status Scale (EDSS) was used to analyze known-groups validity. Responsiveness was determined as the correlation of changes in MS-QLQ27 scores with changes in validation criteria. Results: Internal consistency was high (Cronbach α = 0.94 at baseline and 0.93 at follow-up). Convergent validity was supported by direction and magnitude of associations with disease-specific and generic instruments. Correlations with change in convergent criteria were strong, indicating responsiveness. The HAQUAMS showed the strongest associations with the MSQLQ27. The MS-QLQ27 showed the highest effect size compared with other patient-reported outcomes and the EDSS. It successfully distinguished between levels of disease severity. Conclusions: These results indicate that the MS-QLQ27 is a reliable, valid, and highly responsive instrument for assessing HRQOL during relapse evolution in MS. Its advantages are that it is brief yet comprehensive, covering work- and treatment-related aspects not addressed in previous measures.


2021 ◽  
Vol 19 (1) ◽  
Author(s):  
Sun Hyoung Bae ◽  
Myeong-Ho Yoon ◽  
Jin-Hee Park

Abstract Background Myocardial infarction and unstable angina are prevalent in Korea. The MacNew Heart Disease health-related quality of life questionnaire is a widely used patient-reported outcome measure for patients with heart disease in several countries. In this study, we tested the validity and reliability of the Korean version of the MacNew (K-MacNew). Methods Participants were 200 patients who had experienced unstable angina or myocardial infarction, and were recruited from a tertiary hospital in Korea. The K-MacNew was developed using forward–backward translation techniques. Construct validity (including discriminative validity), concurrent validity, and internal consistency reliability of the K-MacNew were assessed. Discriminative validity was assessed by examining the between-group differences in the K-MacNew scores according to functional capacity, anxiety, and depression levels. Concurrent validity was examined by correlating the K-MacNew dimensions with the physical and mental health domains of the 36-item Short Form Health Survey Instrument (SF-36). Results Factor analysis results of the K-MacNew demonstrated a three-factor structure (emotional, physical, and social) that explained 57.92% of the variance. Significant differences in the K-MacNew scores were observed according to patients’ functional capacity, anxiety, and depression levels. The SF-36 physical health domain score showed a moderate positive correlation with the physical dimension score of the K-MacNew (r = 0.517, P < 0.001), and the SF-36 mental health domain score showed a strong positive correlation with the emotional dimension of K-MacNew (r = 0.745, P < 0.001). The K-MacNew showed good internal consistency, with a Cronbach’s α of 0.947 for the global scale. Conclusion The K-MacNew demonstrated good reliability and validity for use as a patient-reported outcome measure and is ready for the assessment of the health-related quality of life of patients with coronary artery disease in Korea. To establish the clinical validity of the K-MacNew, additional studies should be conducted to verify the validity and reliability of the K-MacNew in a number of participants, including those with various types of coronary artery disease.


2019 ◽  
Vol 4 (1) ◽  
Author(s):  
Mingkwan Lumyongsatien ◽  
Benjama Keeratidamkerngsakul ◽  
Kanokrat Pornpanich ◽  
Sumalee Vangveeravong ◽  
Preamjit Saonanon ◽  
...  

Abstract Purpose To develop and assess the psychometric properties of the Thai version of the Graves’ Ophthalmopathy Quality of Life (GO-QOL) questionnaire. Background Graves’ ophthalmopathy (GO) is a chronic condition that causes negative self-image and impaired visual function. These conditions impact quality of life (QOL) but are rarely documented. Graves’ Ophthalmopathy Quality of Life Questionnaire (GO-QOL) has good validity, reliability and responsiveness. In this study we developed a Thai GO-QOL questionnaire by translating the questionnaire from English to the Thai language and evaluated its reliability and validity. Patients and methods Forward and backward translations were performed independently by four translators with extensive experience in both English and Thai. Seventy patients at the thyroid clinic responded to the Thai translated version upon their first visit and again 2–3 weeks afterwards. Validity was assessed by the content validity index (CVI) and correlation with relevant clinical parameters. Reliability was evaluated by Cronbach’s alpha, the intraclass correlation coefficient, and the Bland-Altman plot. Results The Thai GO-QOL version showed high CVI (0.97) and a moderate negative correlation of the functional QOL score with disease severity (r = − 0.49), the clinical activity score (r = − 0.31), and exposure parameter (r = − 0.32). It showed good reliability with a high intraclass correlation coefficient (0.92) and high Cronbach’ s coefficient (0.86). Conclusion The Thai GO-QOL has good validity and reliability. It can be used to evaluate the quality of life of Graves’ ophthalmopathy patients as a consequence of their disease in thyroid treatment programs.


2020 ◽  
Vol 19 (4) ◽  
pp. 259-288
Author(s):  
Stephanie Antonella Queirolo Ore ◽  
Miguel Barboza-Palomino ◽  
José Ventura-León

Introducción: Los adultos mayores experimentan cambios a nivel físico, cognitivo, social y emocional que tienen un impacto en su calidad de vida. Por lo tanto, resulta necesario disponer de instrumentos con adecuadas propiedades de medición para identificar y medir esta variable, de modo que las inferencias o interpretaciones sean válidas para la toma de decisiones. Objetivo: El objetivo del estudio fue analizar las propiedades de medición del cuestionario de calidad de vida WHOQOL-OLD en adultos mayores peruanos institucionalizados.Método: Participaron 300 adultos mayores de 65 años (Medad=78.41) institucionalizados en un asilo de la ciudad de Lima, donde 173 (57.7%) fueron hombres y 127 (42.3%) fueron mujeres. Se analizó la estructura interna del WHOQOL-OLD a través del análisis factorial confirmatorio (AFC) y la validez convergente con el Índice de Calidad de Vida (ICV). Asimismo, se estimaron puntuaciones de fiabilidad y se obtuvo un baremo para la muestra de estudio.Resultados: Los resultados indican que la estructura de seis factores del WHOQOL-OLD presenta un ajuste satisfactorio con los datos (CFI = .97; TLI = .97; SRMR = .02; RMSEA= .06) y una adecuada consistencia interna (alfa de Cronbach entre .94 y .98). Asimismo, se evidencian relaciones significativas con las dimensiones autonomía (rs = .13, p < .05) y participación social del ICV (rs = .16, p < .01).Conclusiones: El cuestionario de calidad de vida WHOQOL-OLD cuenta con evidencias empíricas de validez y fiabilidad que lo sitúan como un instrumento adecuado para medir la variable de la calidad de vida. Introduction: Older adults experience physical, cognitive, social, and emotional changes that impact their quality of life. It is therefore necessary to have instruments with appropriate measurement properties to identify and measure this variable, so that inferences or interpretations are valid for decision-making.Objective: This study analyzes the measurement properties of the WHOQOL-OLD questionnaire for Peruvian institutionalized seniors.Method: Participants included 300 adults over 65 years (Mage=78.41) institutionalized in a nursing home in the city of Lima, of which 173 (57.7%) were men and 127 (42.3%) were women. The internal structure of the WHOQOL-OLD was assessed through confirmatory factor analysis (CFA), whereas the convergent validity was analyzed using the Quality of Life Index (QLI). In addition, reliability scores were calculated and a scale for the study sample was obtained.Results: The results show that the structure of the six factors involved in the WHOQOL-OLD is suitably adjusted to data (CFI = .97; TLI = .97; SRMR = .02; RMSEA = .06), with proper internal consistency (Cronbach’s α ranging from .94 to .98). Likewise, it is possible to observe significant relationships with the autonomy (rs = .13, p < .05) and social involvement (rs = .16, p < .01) dimensions included in the QLI.Conclusions: The WHOQOL-OLD Quality of Life Questionnaire has empirical evidence of validity and reliability that makes it an appropriate instrument to measure the quality of life variable.


2021 ◽  
Author(s):  
Sun Hyoung Bae ◽  
Myeong-Ho Yoon ◽  
Jin-Hee Park

Abstract Background: Myocardial infraction and unstable angina are prevalent in Korea. A widely used patient-reported outcome for patients with heart disease in other countries is the The MacNew Heart Disease health-related quality of life questionnaire In this study we tested the validity and reliability of the Korean version of the MacNew (K-MacNew). Methods: Participants included 200 patients who had experienced unstable angina or myocardial infarction, and they were recruited from a tertiary hospital in Korea. The K-MacNew was developed using forward-backward translation techniques. Its internal consistency reliability, construct validity, and concurrent validity were assessed. Results: Factor analysis results of the revised K-MacNew demonstrated that it has a three-factor structure (emotional, physical, and social) that supports construct validity. The K-MacNew had a moderate relationship between the physical and mental components of the SF-36 (r = 0.517 to 0.745) and depression and anxiety (r = -0.730 to -0.520). The K-MacNew showed reliable internal consistency, with a Cronbach’s α of .947 for the total scale. Conclusion: The K-MacNew demonstrated good reliability and validity for use as a patient-reported outcome measure and is ready for the assessment of the health-related quality of life of patients with coronary artery disease in Korea. In order to establish the clinical validity of K-MacNew, additional studies should be conducted to verify the validity and reliability of K-MacNew in a number of participants including various types of coronary artery disease.


2010 ◽  
Vol 162 (1) ◽  
pp. 161-167 ◽  
Author(s):  
Torquil Watt ◽  
Laszlo Hegedüs ◽  
Mogens Groenvold ◽  
Jakob Bue Bjorner ◽  
Åse Krogh Rasmussen ◽  
...  

BackgroundAppropriate scale validity and internal consistency reliability have recently been documented for the new thyroid-specific quality of life (QoL) patient-reported outcome (PRO) measure for benign thyroid disorders, the ThyPRO. However, before clinical use, clinical validity and test–retest reliability should be evaluated.AimTo investigate clinical (‘known-groups’) validity and test–retest reliability of the Danish version of the ThyPRO.MethodsFor each of the 13 ThyPRO scales, we defined groups expected to have high versus low scores (‘known-groups’). The clinical validity (known-groups validity) was evaluated by whether the ThyPRO scales could detect expected differences in a cross-sectional study of 907 thyroid patients. Test–retest reliability was evaluated by intra-class correlations of two responses to the ThyPRO 2 weeks apart in a subsample of 87 stable patients.ResultsOn all 13 ThyPRO scales, we found substantial and significant differences between the groups expected to have high versus low scores. Test–retest reliability was above 0.70 (range 0.77–0.89) for all scales, which is usually considered necessary for comparisons among patient groups, but below 0.90, which is the usual threshold for use in individual patients.ConclusionWe found support for the clinical validity of the new thyroid-specific QoL questionnaire, ThyPRO, and evidence of good test–retest reliability. The questionnaire is now ready for use in clinical studies of patients with thyroid diseases.


2020 ◽  
Vol 103 (11) ◽  
pp. 1194-1199

Objective: To develop and validate a Thai version of the Wisconsin Quality of Life (TH WISQoL) Questionnaire. Materials and Methods: The authors developed the TH WISQoL Questionnaire based on a standard multi-step process. Subsequently, the authors recruited patients with kidney stone and requested them to complete the TH WISQoL and a validated Thai version of the 36-Item Short Form Survey (TH SF-36). The authors calculated the internal consistency and interdomain correlation of TH WISQoL and compared the convergent validity between the two instruments. Results: Thirty kidney stone patients completed the TH WISQoL and the TH SF-36. The TH WISQoL showed acceptable internal consistency for all domains (Cronbach’s alpha 0.768 to 0.909). Interdomain correlation was high for most domains (r=0.698 to 0.779), except for the correlation between Vitality and Disease domains, which showed a moderate correlation (r=0.575). For convergent validity, TH WISQoL demonstrated a good overall correlation to TH SF-36, (r=0.796, p<0.05). Conclusion: The TH WISQoL is valid and reliable for evaluating the quality of life of Thai patients with kidney stone. A further large-scale multi-center study is warranted to confirm its applicability in Thailand. Keywords: Quality of life, Kidney stone, Validation, Outcome measurement


2021 ◽  
Vol 11 (1) ◽  
Author(s):  
Svetlana Orlova ◽  
Galina Dikke ◽  
Gisele Pickering ◽  
Eliso Djobava ◽  
Sofya Konchits ◽  
...  

AbstractThis study was aimed to assess the effectiveness of magnesium (Mg)-vitamin B 6 replenishment and its correlation with clinical status in pregnant women (PW), and quality of life in women with hormone-related conditions (HRCW) and hypomagnesemia (HME). Data collected in four observational studies were pooled and analysed. All women received Mg supplementation for 4 weeks. The proportion of women with normalized Mg level, and the correlation between serum Mg dynamics and number of symptoms/complaints (PW) or changes in World Health Organization quality of life questionnaire scores (WHOQOL; HRCW) were evaluated. 869 PW and 957 HRCW were included in the study. Normalization of serum Mg level to ≥ 0.66 mmol/L occurred in 92.1% of PW and 78.4% of HRCW, and to ≥ 0.8 mmol/L in 73.8% and 58.9%, respectively. Mg normalization was accompanied by a median decrease of 1 symptom and 1 complaint in PW. Serum Mg level increase by 0.1 mmol/L was associated to significant changes in the WHOQOL scores in HRCW. Treatment of HME with the Mg for approximately 4 weeks provided a high response rate of Mg serum level, was associated with an improvement in symptom severity and complaints in PW, and WHOQOL score in HRCW. A 0.8 mmol/L cut-off appeared to be more relevant in terms of patient-reported outcomes.


2021 ◽  
Author(s):  
Jalal Maghfour ◽  
Torunn Elise Sivesind ◽  
Cory A. Dunnick ◽  
Robert Paul Dellavalle

BACKGROUND While there has been an increase in the number of randomized, controlled trials (RCTs) evaluating treatment efficacy for HS, instrument measurements of disease severity and quality of life (QoL) are varied, making compilation of data and comparison between studies a challenge for clinicians. OBJECTIVE The aim of this review is to evaluate trends in disease severity scales and patient reported outcome measures used in RCTs assessing treatment interventions among HS patients. METHODS A primary systematic literature review was conducted in August 2020. PubMed/MEDLINE, Embase, Web of Science, and Cochrane databases were used to identify all articles published from January 1964 to July 2020. The study was prospectively registered with PROSPERO (ID: 209582). Twenty-five articles were included in the systematic review. RESULTS Sartorius and modified Sartorius scores (n=8), and Hidradenitis Suppurativa Clinical score (HiSCs) (n=8) were the most commonly used instruments for disease severity. Participants’ pain, followed by Dermatology Life Quality Index (DLQI), were the most common QoL measures used in the reviewed studies. CONCLUSIONS Heterogeneity of data characterizing both the validity and reliability of existing outcome measures hinders interpretation and translation of the results from RCTs into clinical practice. Many of the QoL measures identified were not specific to HS and may not be representative of all factors impacting patients.


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