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INTRODUCTION: Psoriatic arthritis (PsA) is a multifaceted inflammatory disease that can cause joint destruction and impair quality of life. The Psoriatic Arthritis Quality of Life Questionnaire (PsAQoL) was the first disease-specific tool for determining the impact of the disease on the quality of life of people with PsA. OBJECTIVES: The primary objective was to develop and validate a Brazilian Portuguese version of the PsAQoL. METHODS: The UK PsAQoL was translated into Brazilian Portuguese using two translation panels. This translation then checked for face validity and construct validity with new samples of patients. Finally, a test-retest validation study was conducted with 52 patients with PsA. The survey included the Nottingham Health Profile (NHP) as a comparator instrument. RESULTS: Internal consistency and reproducibility were both excellent for the new adaptation (0.91 and 0.90 respectively Scores on the PsAQoL were found to correlate as expected with the comparator measure and the instrument was able to detect differences in score related to perceived severity of PsA, general health status and presence of a flare. CONCLUSION: The Brazilian PsAQoL was found easy to understand and complete and has excellent reliability and construct validity. The new measure will be a valuable new tool for use in routine PsA practice and clinical trials.
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Artritis Psoriásica , Encuestas Epidemiológicas , Lenguaje , Calidad de Vida , Traducciones , Adulto , Anciano , Brasil , Cultura , Femenino , Humanos , Masculino , Persona de Mediana Edad , Psicometría , Reproducibilidad de los ResultadosRESUMEN
Abstract Introduction: Psoriatic arthritis (PsA) is a multifaceted inflammatory disease that can cause joint destruction and impair quality of life. The Psoriatic Arthritis Quality of Life Questionnaire (PsAQoL) was the first disease-specific tool for determining the impact of the disease on the quality of life of people with PsA. Objectives: The primary objective was to develop and validate a Brazilian Portuguese version of the PsAQoL. Methods: The UK PsAQoL was translated into Brazilian Portuguese using two translation panels. This translation then checked for face validity and construct validity with new samples of patients. Finally, a test-retest validation study was conducted with 52 patients with PsA. The survey included the Nottingham Health Profile (NHP) as a comparator instrument. Results: Internal consistency and reproducibility were both excellent for the new adaptation (0.91 and 0.90 respectively Scores on the PsAQoL were found to correlate as expected with the comparator measure and the instrument was able to detect differences in score related to perceived severity of PsA, general health status and presence of a flare. Conclusions: The Brazilian PsAQoL was found easy to understand and complete and has excellent reliability and construct validity. The new measure will be a valuable new tool for use in routine PsA practice and clinical trials.
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Humanos , Calidad de Vida , Artritis Psoriásica/fisiopatología , Encuestas y Cuestionarios , Reproducibilidad de los ResultadosRESUMEN
BACKGROUND: Pulmonary Hypertension (PH) impacts negatively on patients' health-related quality of life (HRQoL). The Cambridge Pulmonary Hypertension Outcome Review (CAMPHOR) was the first PH-specific and validated instrument for use in different languages worldwide. This report describes the adaptation and psychometric validation of the CAMPHOR into Brazilian Portuguese language. METHODS: The translation and validation process included a bilingual and lay panel translation; cognitive debriefing interviews; psychometric testing in two repeated times assessing internal consistency, reproducibility and validity of the questionnaire. The Nottingham Health Profile (NHP) questionnaire was used as a comparator to test for convergent validity. RESULTS: The translation captured the same concepts as the English questionnaire and produced a comprehensive instrument in a Brazilian-Portuguese version expressing common, natural language. The psychometric evaluation involved 102 patients (48.8 ± 14.5 years, 80,4% female]. Cronbach's alpha coefficients were above 0.9 on all three CAMPHOR scales. There was excellent test-retest reliability (coefficients above 0.85 on all scales). CAMPHOR Symptoms scale and Activities scale correlated highly with Physical Mobility section and CAMPHOR QoL scale was strongly associated with the Emotional Reactions and Social Isolation sections of NHP. There was a significant association between gender and perceived general health (p < 0.05). There were significant differences in CAMPHOR scale scores between patients who differed according to their perceived disease severity and general health. CONCLUSIONS: The present CAMPHOR version demonstrated good psychometric properties and provides a reliable instrument for assessing HRQL and QoL in Brazilian PH patients, addressing patients' perspective of their illness in a comprehensive way.
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Background: The Nottingham Health Profile (NHP) is a generic measure of perceived distress that has been used widely as an outcome measure in clinical practice and trials. The availability of two Brazilian datasets provided the opportunity to assess the psychometric performance of the NHP in different populations - adult growth hormone deficiency (GHD) and pulmonary hypertension (PH). The purpose of the study was to see how valuable the NHP could be in assessing outcomes in diseases where no disease-specific measures are available. Methods: Secondary analyses were performed with NHP data. Patients diagnosed with adult GHD or PH were administered the NHP during clinic visits on two occasions, two weeks apart. A disease-specific measure of quality of life (QoL) was also administered to the relevant sample of patients on each occasion. Results: The psychometric properties of the NHP were good for both disease groups. As expected, both samples reported high scores on energy level, the PH sample scored high on physical functioning and the GHD sample on emotional reactions. For both samples, most of the NHP sections were able to distinguish between groups of respondents with different ratings of perceived general health. While most sections of the NHP were relatively highly correlated with the QoL measures, pain and sleep did not seem to be important predictors of QoL in either of the samples. Conclusions: The use of the NHP in adult GHD and PH populations in Brazil is not recommended as there are high-quality disease-specific measures available for each disease. However, where no disease-specific measures are available, the NHP can provide good descriptive information of the impact of disease on different patient populations.
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Hipertensión Pulmonar , Calidad de Vida , Adulto , Brasil , Hormona del Crecimiento , Humanos , PsicometríaRESUMEN
OBJECTIVE: To develop and validate the Mexican-Spanish version of the Rheumatoid Arthritis Quality of Life questionnaire (RAQoL). METHODS: The original UK English version of RAQoL was translated into Mexican-Spanish version by a bilingual translation panel. An independent lay panel reviewed the instrument's item phrasing to ensure comprehensiveness and appropriateness in colloquial Mexican-Spanish. Structured cognitive debriefing interviews were conducted with 15 Rheumatoid Arthritis (RA) patients to assess face and content validity. Finally, an independent sample of RA patients completed the RAQoL and additional assessments were performed to assess reproducibility and construct validity. RESULTS: Translation and adaptation was successful as both the lay panel and cognitive debriefing participants considered the new language version to be appropriate. Fifty-seven patients were included in the final evaluation of the Mexican-Spanish version of RAQoL (73.8% female, mean age 52.4 years, SD 14.1, RA duration range 2-27 years). Cronbach's α for the new RAQoL was 0.91 and the test-retest reliability 0.92, indicating that the measure has good internal consistency and low random measurement error. The Mexican-Spanish version of RAQoL could discriminate between patients who differed on their perception of disease activity, general health status, current rating of perceived RA severity and whether or not they were experiencing a disease flare. CONCLUSIONS: The Mexican-Spanish version of RAQoL was well accepted by RA patients. The psychometric quality of the adapted questionnaire shows that it is suitable for use in clinical studies and trials of patients with RA.