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Use of the KDQOL-36™ for assessment of health-related quality of life among dialysis patients in the United States.

ABSTRACT: 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??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.

SUBMITTER: Cohen DE

PROVIDER: S-EPMC6444438 | biostudies-literature | 2019 Apr

REPOSITORIES: biostudies-literature

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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 20190401 1

<h4>Background</h4>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.<h4>Methods</h4>This retrospective, observational study consi ...[more]

PMID: 30935377

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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.

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.

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.

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.

Dataset Information

Use of the KDQOL-36™ for assessment of health-related quality of life among dialysis patients in the United States.

Publications

Use of the KDQOL-36™ for assessment of health-related quality of life among dialysis patients in the United States.

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