scholarly journals Measurement properties of the PBC-40 and PBC-27: a Dutch validation study

2021 ◽  
Vol 8 (1) ◽  
pp. e000758
Author(s):  
Rozanne C de Veer ◽  
Geraldine da Silva ◽  
Maria C van Hooff ◽  
Maren H Harms ◽  
Herold J Metselaar ◽  
...  
Keyword(s):  
Short Form ◽  
Reliability And Validity ◽  
Measurement Properties ◽  
Primary Biliary Cholangitis ◽  
Specific Measure ◽  
Dutch Version ◽  
Dutch Translation ◽  
Ceiling Effects ◽  
Related Quality ◽  
Health Related

ObjectivePatients with primary biliary cholangitis (PBC) have an impaired health-related quality of life (HRQoL). Practice guidelines recommend evaluating the HRQoL in all patients with PBC. The aim of this study was to assess the reliability and validity of our Dutch translation of the PBC-40, a PBC-specific measure of the HRQoL.DesignThe PBC-40 was translated into Dutch following standardised forward–backward procedures. Participants received the Dutch PBC-40 and the RAND-36 (a validated Dutch version of the 36-Item Short Form Health Survey) through postal mail. The PBC-27 is an abridged version of the PBC-40. Internal consistency between the items within the PBC-40/PBC-27 domains was assessed by Cronbach’s alpha. In addition, score distributions were analysed on floor and ceiling effects. Construct validity was assessed by hypotheses testing using Pearson’s correlation between the PBC-40/PBC-27 domains and RAND-36 scales.Results177 patients with PBC were included. The mean age was 61.1 (SD 9.9) years and the majority of patients was female (n=164, 92.7%). From the 7080 PBC-40 items, 61 items (0.9%) were missing and 342 items (4.8%) were answered with the ‘does not apply’ option. Each PBC-40 domain had a Cronbach’s α of >0.70, with the highest in the domain fatigue (0.95). For the PBC-27, the lowest Cronbach’s α was 0.69. Floor effects were present in three domains (cognition 19.3%, itch 27.0% and social 25.0% (only for PBC-27)). No ceiling effects were observed. All domains were significantly correlated with the corresponding RAND-36 scale(s) (p<0.001 for all). The strongest correlation was between the PBC-40 domain fatigue and the RAND-36 vitality scale (r=−0.834).ConclusionOur findings demonstrate the reliability and validity of the Dutch PBC-40 and PBC-27 for the assessment of the HRQoL in patients with PBC. This PBC-specific measure can be used in Dutch-speaking patients with PBC for both research and clinical purposes.

Evaluation of an Instrument Assessing Influence of Gout on Health-Related Quality of Life

2008 ◽  
Vol 35 (12) ◽  
pp. 2406-2414 ◽  
Author(s):  
JAN D. HIRSCH ◽  
SUSAN J. LEE ◽  
ROBERT TERKELTAUB ◽  
DINESH KHANNA ◽  
JASVINDER SINGH ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Short Form ◽  
Demographic Data ◽  
Reliability And Validity ◽  
Health Related Quality ◽  
Patient Reported ◽  
Related Quality ◽  
Health Related ◽  
The Impact

ObjectiveTo evaluate the reliability and validity of an instrument assessing the influence of gout (acute and chronic) on health-related quality of life (HRQOL).MethodsFocus groups were used to examine the content of an existing Gout Assessment Questionnaire (GAQ1.0). GAQ2.0 was developed, consisting of a section describing the impact of gout on HRQOL [Gout Impact (GI)] and 4 sections describing subjects’ gout overall and demographic data. The GAQ2.0 and the Medical Outcomes Study Short Form-36 Version 2 (SF-36v2) were completed by gout patients in 3 US cities. GI scales were examined using clinical judgment, review of item statistics, Rasch analysis, and confirmatory factor analysis.ResultsSubjects (n = 308) were predominantly male (90.2%), Caucasian (75.9%), with a mean age 62.2 ± 11.8 years. Half the subjects (49.7%) reported ≥ 3 attacks in the past year. Two-week test-retest reliability for each scale was good (0.77 to 0.89) for all 5 GI scales. All scales achieved high sufficient (0.86 to 0.89) or excellent (0.93 to 0.97) ratings based on 10-item adjusted alpha coefficients. Correlations and tests among known groups indicated subjects with more severe gout had higher GI scores (i.e., greater gout impact). GI scores correlated more highly with patient-reported measures of gout severity than the SF-36v2 and several traditional measures of gout severity.ConclusionThe GAQ2.0 is an instrument for measuring the impact of gout on HRQOL. The GI section exhibited acceptable reliability and validity characteristics. Future studies should assess GI responsiveness, minimally important differences, and psychometric properties in other patient populations.

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

2020 ◽  
Author(s):  
Xin Ai ◽  
Xian Yang ◽  
Jia-min Xu ◽  
Wen-xia Yang ◽  
Ying-Mei Tang
Keyword(s):  
Systematic Review ◽  
Measurement Properties ◽  
Primary Biliary Cholangitis ◽  
Validity And Reliability ◽  
Hrqol Questionnaire ◽  
Sf 36 ◽  
Related Quality ◽  
Health Related ◽  
Test Retest Reliability

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.

scholarly journals Comparing EQ-5D-3L and EQ-5D-5L in Measuring the HRQoL Burden of 4 Health Conditions in China

2020 ◽  
Author(s):  
Yani Tan ◽  
Zhen Zhang ◽  
Yanming Hong ◽  
Zhihao Yang ◽  
Nan Luo ◽  
...  
Keyword(s):  
Relative Efficiency ◽  
Relative Difference ◽  
Superior Performance ◽  
Health Conditions ◽  
Measurement Properties ◽  
Ceiling Effects ◽  
Related Quality ◽  
Health Related ◽  
Index Value

Abstract Background: This study was conducted to compare the measurement properties of both the EQ-5D-3L and EQ-5D-5L in quantifying health related quality of life (HRQoL) burden for 4 different health conditions in China.Methods: A total of 500 participants from China were recruited to complete the 3L and 5L questionnaire via Internet. The 3L and 5L were compared in terms of distribution properties, ceiling effects and relative efficiency. Distributions of responses were also examined. Results: Ceiling effects decreased significantly in the 5L in all domains (P＜0.01), especially in the pain/discomfort dimension (relative difference: 43.10%). Relative efficiency suggested that 5L had a higher absolute discriminatory power than the 3L version between perfectly healthy participant and 4 condition groups, especially for the HIV/AIDS group when the 3L results was not significant. 5L also had smoother and less clustered index value distributions. Conclusions: Both the 3L and 5L are demonstrated to be valid HRQoL instruments for quantifying disease burden in China. The 5L system may be preferable to the 3L, as it demonstrated superior performance with respect to lower ceiling effect, better relative efficiency and distributions.

Association of Physical Morbidity and Health-Related Quality of Life in a Representative Sample of Older German People

2018 ◽  
Vol 25 (4) ◽  
pp. 140-151
Author(s):  
Markus A. Wirtz ◽  
Matthias Morfeld ◽  
Elmar Brähler ◽  
Andreas Hinz ◽  
Heide Glaesmer
Keyword(s):  
Quality Of Life ◽  
Representative Sample ◽  
Short Form ◽  
Physical Symptoms ◽  
German Population ◽  
Health Related Quality ◽  
Patient Reported ◽  
Related Quality ◽  
Health Related

Abstract. The association between health-related quality of life (HRQoL; Short-Form Health Survey-12; SF-12) and patient-reported morbidity-related symptoms measured by the Patient Health Questionnaire-15 (PHQ-15) is analyzed in a representative sample of older people in the general German population. Data from 1,659 people aged 60 to 85 years were obtained. Latent class analysis identified six classes of patients, which optimally categorize clusters of physical symptoms the participants reported: musculoskeletal impairments (39.8%), healthy (25.7%), musculoskeletal and respiratory/cardiac impairments (12.8%), musculoskeletal and respiratory impairments, along with bowel and digestion problems (12.9%), general impairments (4.9%), and general impairments with no bowel and digestion problems (4.8%). The participants’ SF-12 Physical Health Scores (η2 = .39) and their Mental Health Scores (η2 = .28) are highly associated with these latent classes. These associations remain virtually identical after controlling for age. The results provide evidence that profiles of patient-reported physical impairments correspond strongly with reduced HRQoL independently from aging processes.

Factors Affecting Health-Related Quality of Life After the Arterial Switch Operation

2021 ◽  
Vol 12 (3) ◽  
pp. 344-351
Author(s):  
Julie Cleuziou ◽  
Anna-Katharina Huber ◽  
Martina Strbad ◽  
Masamichi Ono ◽  
Alfred Hager ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Short Form ◽  
Arterial Switch Operation ◽  
Health Related Quality ◽  
Switch Operation ◽  
Sf 36 ◽  
Related Quality ◽  
Health Related ◽  
Cardiac Medication

Background: Long-term morbidity and mortality outcomes of the arterial switch operation (ASO) in patients with transposition of the great arteries and Taussig-Bing anomaly are excellent. With an increasing number of patients reaching adolescence and adulthood, more attention is directed toward quality of life. Our study aimed to determine the health-related quality of life (hrQoL) outcomes in patients after the ASO and identify factors influencing their hrQoL. Methods: In this cross-sectional study, hrQoL of patients after ASO was assessed with the German version of the Short Form-36 (SF-36) and the potential association of specified clinical factors was analyzed. Patients of at least 14 years of age who underwent ASO in our institution from 1983 were considered eligible. Results: Of the 355 questionnaires sent to eligible patients, 261 (73%) were available for analysis. Compared to the reference population, patients who had undergone ASO had a significantly higher score in all subscales of the SF-36 except for vitality ( P < .01). Patients with an implanted pacemaker ( P = .002), patients who required at least one reoperation ( P < .001), and patients currently taking cardiac medication ( P < .004) or oral anticoagulation ( P = .036) had lower physical component scores compared to patients without these factors. Conclusions: Patients’ self-assessed and self-reported hrQoL after ASO (using German version of the Short Form 36) is very good. In this population, hrQoL is influenced by reoperation, the need for a pacemaker, and current cardiac medication or anticoagulant use. The development of strategies designed to mitigate or minimize the requirements for, and/or impact of these factors may lead to better hrQoL in this patient population.

scholarly journals The expanded prostate cancer index composite short form (EPIC-26) for measuring health-related quality of life: content analysis of patients’ spontaneous comments written in survey margins

2021 ◽  
Author(s):  
Anna-Maija Talvitie ◽  
Hanna Ojala ◽  
Teuvo Tammela ◽  
Ilkka Pietilä
Keyword(s):  
Prostate Cancer ◽  
Content Analysis ◽  
Short Form ◽  
Health Related Quality ◽  
Urinary Catheters ◽  
Additional Information ◽  
Response Data ◽  
Related Quality ◽  
Health Related

Abstract Introduction This study investigates comments that prostate cancer patients spontaneously write in the margins of the Expanded Prostate Cancer Index Short Form (EPIC-26) questionnaire. We aim to show the possible barriers that patients face while answering the survey, and to consider how these barriers may affect the response data generated. We investigate the kind of information patients’ comments on EPIC-26 contain, and patients’ motivations to provide this information. We also study why some EPIC domains spark more comments than others. Method We analyzed 28 pages of transcribed comments and four pages of supplementary letters from our survey participants (n = 496). Using inductive content analysis, we generated 10 categories describing the content of participants’ comments, and four themes demonstrating their motives for commenting. The comments regarding each EPIC domain were quantified to discover any differences between domains. Results The sexual domain of EPIC-26 provoked over half of all comments. Patients without recent sexual activity or desire had difficulties answering sexual function questions 8–10. The lack of instructions on whether to take erectile aid use into account when answering erectile function questions led to a diversity of answering strategies. Patients with urinary catheters could not find suitable answer options for questions 1–4. All domains sparked comments containing additional information about experienced symptoms. Conclusion Patients are mainly willing to report their symptoms, but a lack of suitable answer options causes missing data and differing answering strategies in the sexual and urinary domains of EPIC-26, weakening the quality of the response data received.

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