scholarly journals Health-related quality of life questionnaires used in primary biliary cholangitis: a systematic review

Author(s):  
Xin Ai ◽  
Xian Yang ◽  
Jia-min Xu ◽  
Wen-xia Yang ◽  
Ying-Mei Tang

Objective The purpose of this systematic review was to assess the suitability of HRQOL questionnaires in patients with primary biliary cholangitis. Methods Five electronic databases were searched. The validity of translated questionnaires, floor and ceiling effects, internal consistency and test-retest reliability were investigated. Results Forty-four studies were included, of which fifteen HRQOL questionnaires were identified. The instruments used most frequently were the PBC-40 (n = 22), followed by the SF-36 (n = 19), PBC-27(n=4), CLDQ (n = 3) and NIDDK-QA(n=2), the remaining instruments were uesd only once. Tweenty-six studies used a translated HRQOL questionnaire and only six reported or referenced a validation of the translated questionnaire. Conclusions PBC-specific HRQOL questionnaires used in primary biliary cholangitis have generally good psychometric properties. But lots of studies directly applied the HRQOL tools without verifying the HRQOL tools validity and reliability in PBC patients. Thus, it is better for clinicians and researchers to test the measurement properties of HRQOL questionnaires before use it.

Author(s):  
Diego Gómez Herrero ◽  
Rafael Sanjuan-Cerveró ◽  
Pedro Vazquez-Ferreiro ◽  
Francisco Javier Carrera-Hueso ◽  
Marina Sáez-Belló ◽  
...  

Objective: The objective of this study is to carry out a systematic review of the outcome measures reported by the patient that are used to measure the quality of life of patients with Dupuytren´s disease (DD), assessing their relevance and effectiveness. Methods: A systematic literature search was carried out in the PubMed®, Web of Sciencie®, SciELO®, EMBASE®, Google Scholar® and Cochrane® databases. We searched for peer-reviewed articles evaluating health related quality of life (HR-QoL) in patients with DD diagnosed and/or treated until April 1, 2017, for English or Spanish language. The following keywords were used: “Dupuytren´s disease (MeSH)” AND “health related quality of life (MeSH)”. The documents were eligible for inclusion if they described data on the HR-QoL domains in relation to diagnosis or treatment of DD after a revision process by two independent authors. The checklist (STROBE) was used to evaluate the quality of the works. Results: From 352 identified articles were finally selected 26 studies in the systematic review, mostly European. A total of nine outcomes measures specifically reported by the patient were identified: DASH (used in 13 of the 26 selected studies), Quick-DASH (8/26), MHQ (7/26), briefMHQ (1/26), URAM (4/26), POS-HAND/ARM (1/26), SDSS (1/26), DDSP (1/26) and CHFS (1/26) questionnaires. We analyze their quantitative results to evaluate the effectiveness and evaluate the methodological quality of the studies on the measurement properties of the results reported by patients related to health. Conclusion: More work is urgently needed in these areas before we can reach a consensus on which instrument is the best to assess functional deterioration and improvement in patients with DD.


2019 ◽  
Vol 27 (7) ◽  
pp. 2395-2412
Author(s):  
Anja van der Hout ◽  
Koen I. Neijenhuijs ◽  
Femke Jansen ◽  
Cornelia F. van Uden-Kraan ◽  
Neil K. Aaronson ◽  
...  

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.


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