Correction to: Use of the KDQOL-36™ for assessment of health-related quality of life among dialysis patients in the United States.
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ABSTRACT:
SUBMITTER: Cohen DE
PROVIDER: S-EPMC6902527 | biostudies-literature | 2019 Dec
REPOSITORIES: biostudies-literature
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Correction to: Use of the KDQOL-36™ for assessment of health-related quality of life among dialysis patients in the United States.
Cohen Dena E DE Lee Andrew A Sibbel Scott S Benner Deborah D Brunelli Steven M SM Tentori Francesca F
BMC nephrology 20191210 1
Following publication of the original article [1], the authors reported an error in Figs. 3 and S3. ...[more]
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Project description:BACKGROUND:Health-related quality of life (HRQOL) is a key outcome for dialysis patients, and its assessment is mandated by the Centers for Medicaid and Medicare Services. The Kidney Disease Quality of Life (KDQOL-36™) survey is widely used for this assessment. KDQOL-36™ completion rates, and the distributions of scores and item responses, have not been examined in a large, nationally representative cohort of dialysis patients. METHODS:This retrospective, observational study considered 413,951 survey opportunities contributed by adult patients who received dialysis at a large dialysis organization in the United States during calendar years 2014, 2015, and 2016 and were not Veterans Affairs beneficiaries. RESULTS:During the study period, 240,343 unique patients completed a total of 330,412 surveys (overall completion rate 79.8%). Mean domain scores on the physical component summary (PCS), mental component summary (MCS), burden of kidney disease (BKD), symptoms and problems of kidney disease (SPKD), and effects of kidney disease (EKD) subscales were 36.6, 49.0, 51.3, 78.1, and 73.0, respectively. Scores were similar across dialysis modalities. Patient perceptions of general health were not correlated (R < 0.05) with PCS or SPKD. The SPKD showed ceiling effects: among patients treated with in-center hemodialysis, for all 12 items, < 10% of patients were "extremely bothered," while > 65% of patients reported being "not at all" or only "somewhat bothered;" for 3 items, > 85% of patients gave these latter two responses. Interdialytic weight gain was not correlated with patient-reported shortness of breath, PCS, or SPKD. CONCLUSIONS:Survey completion rates for the KDQOL-36™ were high, and scores were similar across dialysis modalities. Ceiling effects were observed for SPKD. Revision of the KDQOL-36™ to address factors that are most important to contemporary dialysis patients may be warranted.
| S-EPMC6444438 | biostudies-literature
Project description:BackgroundThe Kidney Disease Quality of Life 36-item short form survey (KDQOL-36) is a widely used, patient-reported outcome measure for patients on dialysis. Efforts to aid interpretation are needed.MethodsWe used a sample of 58,851 dialysis patients participating in the Medical Education Institute (MEI) KDQOL Complete program, and 443,947 patients from the US Renal Data System (USRDS) to develop the KDQOL-36 Summary Score (KSS) for the kidney-targeted KDQOL-36 scales (Burdens of Kidney Disease [BKD], Symptoms and Problems of Kidney Disease [SPKD], and Effects of Kidney Disease [EKD]). We also used the MEI and USRDS data to calculate normative values for the Short Form-12 Health Survey's Physical Component Summary (PCS) and Mental Component Summary (MCS), and the KDQOL-36's BKD, SPKD, and EKD scales for the United States dialysis population. We used confirmatory factor analysis (CFA) models for KDQOL-36 kidney-targeted items, evaluated model fit with the comparative fit index (CFI; >0.95 indicates good fit) and root-mean-squared error of approximation (RMSEA; <0.06 indicates good fit), and estimated norms by matching the joint distribution of patient characteristics in the MEI sample to those of the USRDS sample.ResultsA bifactor CFA model fit the data well (RMSEA=0.046, CFI=0.990), supporting the KSS (?=0.91). Mean dialysis normative scores were PCS=37.8 and MCS=50.9 (scored on a T-score metric); and KSS=73.0, BKD=52.8, SPKD=79.0, and EKD=74.1 (0-100 possible scores).ConclusionsThe KSS is a reliable summary of the KDQOL-36. The United States KDQOL-36 normative facilitate interpretation and incorporation of patient-related outcome measures into kidney disease care.
| S-EPMC6442334 | biostudies-literature
Project description:BACKGROUND:In Malaysia, the prevalence of chronic kidney disease is high (9.1%). To date, no questionnaire that specifically assesses the health-related quality of life of patients with chronic kidney disease has been validated in Malaysia. Malay is the national language of Malaysia and spoken by the majority of its citizens. Therefore, the aim of our study was to cross-culturally adapt and validate the Malay Kidney Disease Quality of Life-36 (KDQOL-36) among patients with chronic kidney disease. METHODS:The English version of the KDQOL-36 was translated according to international guidelines to Malay. Content validity was verified by an expert panel and piloted in five patients. Our instrument was then administered to patients with chronic kidney disease stage 1-3A and patients on hemodialysis at baseline and 4?weeks later. RESULTS:A total of 181/232 patients agreed to participate (response rate?=?78.0%). The majority were male (69.6%) with a median age of 51.0?years. Exploratory factor analysis found that the KDQOL-36 had three domains. All three domains showed low to moderate correlation (Spearman's Rho?=?0.297-0.610) with the Europe Quality of Life Five Dimension questionnaire. Patients on hemodialysis (physical component summary?=?39.8; mental component summary?=?53.1;burden of disease?=?37.5; symptoms/burden list?=?75.0; effects of kidney disease on daily life?=?68.8) had significantly worse quality of life than patients with chronic kidney disease stage 1-3A (physical component summary?=?49.9; mental component summary?=?52.9; burden of disease?=?75.0; symptoms/burden list?=?85.4; effects of kidney disease on daily life?=?93.8, p?<?0.001) except for the mental component summary. This indicates that the Malay KDQOL-36 has achieved adequate known-groups validity. Cronbach alpha ranged from 0.872-0.901, indicating adequate internal consistency. At retest, intraclass correlation coefficient ranged from 0.584-0.902, indicating moderate to good correlation. CONCLUSION:The Malay Kidney Disease Quality of Life-36 was found to be a valid and reliable tool to assess the quality of life in patients with chronic kidney disease. This tool can now be used to assess the health-related quality of life (HRQOL) in patients with chronic kidney disease, as HRQOL is an important independent predictor of patient outcome.
| S-EPMC6585031 | biostudies-literature
Project description:The aim of this study was to evaluate the validity, reliability and sensitivity of the disease-specific items of the Kidney Disease Quality of Life-36 (KDQOL-36) in Chinese patients undergoing maintenance dialysis.The content validity was assessed by content validity index (CVI) in ten subjects. 356 subjects were recruited for pilot psychometric testing. The internal construct validity was assessed by corrected item-subscale total correlation. Confirmatory factor analysis (CFA) was used to confirm the factor structure. The convergent validity was assessed by Pearson's correlation test between the disease specific subscale scores and SF-12 version 2 Health Survey (SF-12 v2) scores. The reliability was assessed by the internal consistency (Cronbach's Alpha coefficient) and 2-week test-retest reliability (intraclass correlation coefficient (ICC)). The sensitivity was determined by performing known group comparisons by independent t-test.The CVI on clarity and relevance was ≥ 0.9 for all items. Corrected item- total correlation scores were ≥0.4 for all, except an item related to problems with access site. CFA confirmed the 3-factor structure of the disease-specific component of the KDQOL-36. The correlation coefficients between the disease-specific domain scores and the SF-12 v2 physical and mental component summary scores ranged from 0.328 to 0.492. The reliability was good (Cronbach's alpha coefficients ranged from 0.810 to 0.931, ICC ranged from 0.792 to 0.924). Only the effect subscale was sensitive in detecting differences in HRQOL between haemodialysis and peritoneal dialysis patients, with effect size = 0.68.The disease-specific items of the KDQOL-36 are a valid, reliable and sensitive measure to assess the health-related quality of life of Chinese patients on maintenance dialysis.
| S-EPMC4858254 | biostudies-other
Project description:BackgroundHealth-related quality of life (HRQOL) has a direct association with increased morbidity and mortality among end stage renal disease patients. Valid and reliable instruments to measure the HRQOL of patients with end stage renal disease are therefore required. This study aimed to translate, culturally adapt and evaluate the psychometric properties of the Amharic version of the Kidney Disease Quality of Life-36 (KDQOL-36) instrument in Ethiopian patients with end stage renal disease undergoing hemodialysis.MethodsThe KDQOL-36 instrument was developed for individuals with kidney disease who are being treated with dialysis and includes both generic and disease-specific components. The KDQOL-36 was translated to Amharic language and distributed to a cross-sectional sample of 292 hemodialysis patients. The psychometric evaluation included construct validity through corrected item-total correlation, confirmatory factor analysis and known group analysis. Convergent validity was evaluated by correlations between each of the three kidney disease targeted scales (symptoms/problems list, burden of kidney disease and effects of kidney diseases) and the European Quality of Life 5D-5L and Visual Analog Scales. Regarding reliability, internal consistency and test-retest reliability were assessed.ResultsTwo hundred ninety-two patients with a mean age of 48 (SD ± 14.7) completed the questionnaire. Corrected item- total correlation scores were > 0.4 for all items. Confirmatory factor analysis revealed a two χ2 /df was 4.4, Root Mean Square Error of Approximation (RMSEA) = 0.108 (90% CI 0.064-0.095), Comparative Fit Index (CFI) = 0.922, Tucker Lewis Index (TLI) = 0.948 and Standardized Root mean-squared residual (SRMR) = 0.058) and three χ2 /df = 3.1, RMSEA = 0.085 (90% CI 0.064-0.095), CFI = 0.854, TLI = 0.838 and SRMR = 0.067) factor models for the generic and disease specific components respectively. The mean scores of the three kidney disease targeted domains were correlated to the EQ-5D-5L & VAS with correlation coefficients of large magnitude (0.55-0.81). The reliability of the instrument was satisfactory (Cronbach's alpha = 0.81-0.91) and Intra-class correlation (ICC) = 0.90-0.96).ConclusionThe Amharic version of the KDQOL-36 is a reliable and valid instrument recommended for assessment of HRQOL of Ethiopian patients on hemodialysis.
| S-EPMC8832803 | biostudies-literature
Project description:ObjectivesTo develop algorithms mapping the Kidney Disease Quality of Life 36-Item Short Form Survey (KDQOL-36) onto the 3-level EQ-5D questionnaire (EQ-5D-3L) and the 5-level EQ-5D questionnaire (EQ-5D-5L) for patients with end-stage renal disease requiring dialysis.MethodsWe used data from a cross-sectional study in Europe (France, n?=?299; Germany, n?=?413; Italy, n?=?278; Spain, n?=?225) to map onto EQ-5D-3L and data from a cross-sectional study in Singapore (n?=?163) to map onto EQ-5D-5L. Direct mapping using linear regression, mixture beta regression and adjusted limited dependent variable mixture models (ALDVMMs) and response mapping using seemingly unrelated ordered probit models were performed. The KDQOL-36 subscale scores, i.e., physical component summary (PCS), mental component summary (MCS), three disease-specific subscales or their average, i.e., kidney disease component summary (KDCS), and age and sex were included as the explanatory variables. Predictive performance was assessed by mean absolute error (MAE) and root mean square error (RMSE) using 10-fold cross-validation.ResultsMixture models outperformed linear regression and response mapping. When mapping to EQ-5D-3L, the ALDVMM model was the best-performing one for France, Germany and Spain while beta regression was best for Italy. When mapping to EQ-5D-5L, the ALDVMM model also demonstrated the best predictive performance. Generally, models using KDQOL-36 subscale scores showed better fit than using the KDCS.ConclusionsThis study adds to the growing literature suggesting the better performance of the mixture models in modelling EQ-5D and produces algorithms to map the KDQOL-36 onto EQ-5D-3L (for France, Germany, Italy, and Spain) and EQ-5D-5L (for Singapore).
| S-EPMC6803593 | biostudies-literature
Project description:BackgroundHealth Related Quality of Life (HRQOL) instruments need disease and country specific validation. In Arab countries, there is no specific validated questionnaire for assessment of HRQOL in chronic kidney disease (CKD) patients. The aim of this study was to present an Arabic translation, adaptation, and the subsequent validation of the kidney disease quality of life-short form (KDQOL-SFTM) version 1.3 questionnaire in a representative series of Egyptian CKD patients.MethodsKDQOL-SFTM version 1.3 was translated into Arabic by two independent translators, and then subsequently translated back into English. After translation disparities were reconciled, the final Arabic questionnaire was tested by interviewing 100 pre-dialysis CKD (stage 1-4) patients randomly selected from outpatients attending the Nephrology clinic at the Main Alexandria University Hospital. Test re-test reliability was performed, with a subsample of 50 consecutive CKD patients, by two interviews 7 days apart and internal consistency estimated by Cronbach's ?. Discriminant, concept, and construct validity were assessed.ResultsAll items of SF-36 met the criterion for internal consistency and were reproducible. Of the 10 kidney disease targeted scales, only three had Cronbach's ? <0.7: quality of social interaction (0.23), work status (0.28), and cognitive function (0.60). All disease specific scales were reproducible. Results from discriminant validity showed that the study questionnaire could discriminate between patients' subgroups. As for concept validity, the correlation between all domains of the questionnaire with overall health ratewas significant for all domains except for the work status, sexual function, emotional wellbeing, and role emotional. Furthermore, the correlation between the disease specific domains and the two composite summaries of SF-36 (physical and mental composite summaries) was significant for all domains except for sexual function with mental composite summary. Construct validity was indicated by the observation that the majority of the domains of the kidney disease targeted scale of KDQOL-SFTM 1.3 were significantly inter-correlated. Finally, principal component analysis of the kidney disease targeted scale indicated that this part of the questionnaire could be summarized into 10 factors that together explained 70.9% of the variance.ConclusionThe results suggest that this Arabic version of the KDQOL-SFTM 1.3 questionnaire is a valid and reliable tool for use in Egyptian patients with CKD.
| S-EPMC3583144 | biostudies-literature
Project description:BackgroundQualitative patient interviews and patient-reported outcome instruments are important tools to understand the patient experience of disease. The aim of this study was to use patient interviews to identify concepts relevant and important to patients living with chronic kidney disease (CKD) stages 2-3b, develop a comprehensive conceptual model of the patient experience and debrief the Kidney Disease Quality of Life 36-item instrument (KDQOL-36) for patients with CKD stages 2-3b.MethodsConcept elicitation interviews were conducted with patients with CKD stages 2-3b to identify signs/symptoms and impacts most relevant and important to patients (i.e., 'salient' concepts) and develop a conceptual model for the disease. Based on the salient concepts identified in the interviews, new items were proposed to supplement the KDQOL-36. Cognitive debriefing was performed to evaluate the KDQOL-36 and the additional items.ResultsA total of 31 patients were interviewed in this study (22 for concept elicitation and 15 for cognitive debriefing). The interviews identified 56 concepts (33 signs/symptoms and 23 impacts), 17 of which had not been identified in a previous literature review. Four signs/symptoms ('fatigue/lack of energy/tiredness', 'sleep problems', 'increased urination [including nocturia]' and 'swelling in legs/ankles/feet') and two impacts ('anxiety/worry' and 'general negative emotional/mental impact') were identified as salient. Of the salient signs/symptoms, three were not covered by the KDQOL-36 (sleep problems, increased urination and swelling in legs/ankles/feet) and were represented during cognitive debriefing interviews through four additional items (trouble falling asleep, trouble staying asleep, increased urination [including nocturia] and swelling in legs/ankles/feet) generated in the style of the KDQOL-36. All patients found the KDQOL-36 plus the four additional items relevant, and the majority found them clear.ConclusionsBy identifying previously unknown concepts and augmenting the understanding of which are most important to patients, a comprehensive conceptual model was developed for patients who have CKD stages 2-3b. This study also demonstrates the suitability of the KDQOL-36 for patients who have CKD stages 2-3b and provides suggestions for how the instrument could be further developed to more comprehensively capture patient experience.
| S-EPMC9155979 | biostudies-literature
Project description:BACKGROUND:End-of-life care is a prominent consideration in patients on maintenance dialysis, especially when death appears imminent and quality of life is poor. To date, examination of race- and ethnicity-associated disparities in end-of-life care for patients with ESRD has largely been restricted to comparisons of white and black patients. METHODS:We performed a retrospective national study using United States Renal Data System files to determine whether end-of-life care in United States patients on dialysis is subject to racial or ethnic disparity. The primary outcome was a composite of discontinuation of dialysis and death in a nonhospital or hospice setting. RESULTS:Among 1,098,384 patients on dialysis dying between 2000 and 2014, the primary outcome was less likely in patients from any minority group compared with the non-Hispanic white population (10.9% versus 22.6%, P<0.001, respectively). We also observed similar significant disparities between any minority group and non-Hispanic whites for dialysis discontinuation (16.7% versus 31.2%), as well as hospice (10.3% versus 18.1%) and nonhospital death (34.4% versus 46.4%). After extensive covariate adjustment, the primary outcome was less likely in the combined minority group than in the non-Hispanic white population (adjusted odds ratio, 0.55; 95% confidence interval, 0.55 to 0.56; P<0.001). Individual minority groups (non-Hispanic Asian, non-Hispanic black, non-Hispanic Native American, and Hispanic) were significantly less likely than non-Hispanic whites to experience the primary outcome. This disparity was especially pronounced for non-Hispanic Native American and Hispanic subgroups. CONCLUSIONS:There appear to be substantial race- and ethnicity-based disparities in end-of-life care practices for United States patients receiving dialysis.
| S-EPMC6115657 | biostudies-literature
Project description:BackgroundIn 2019, an estimated 296 million people were living with chronic hepatitis B virus (HBV) globally with approximately 2.4 million living within the United States. Those living with HBV require years if not decades of regular monitoring to prevent liver complications from occurring. The aim of this study was to explore the working conceptual framework of health related quality of life (HRQL) for those living with chronic HBV through qualitative analysis.MethodsData were collected by in-depth telephone interviews conducted in 2019 using purposeful sampling as part of a disease understanding assessment on the HBV patient experience within the United States. A directed content analysis approach was utilized by creation of a codebook to guide the organization of data, codes were developed by review of the literature (a priori) and through line-by-line reading of a subsample of queries. All transcripts were analyzed by at least two members of the study team and intercoder reliability was assessed using Dedoose software.FindingsA sample of 19 individuals living with chronic HBV were included within this study. Themes identified from transcripts noted the significant overlap between the reported experience of HBV and constructs within the HRQL model. The psychological impact of chronic HBV on study participants' HRQL overall was considerable and contributed to depression, anxiety, homelessness, drug use, and incarceration.ConclusionOur analysis supports the hypothesis that HBV impacts HRQL and often negatively affects emotional health. Our findings suggest that it would be beneficial to include HRQL assessment in the medical management of HBV, so that interventions can focus on reducing the burden of disease and improving quality of life for those living with HBV.
| S-EPMC8581088 | biostudies-literature