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      Improving CKD-Specific Patient-Reported Measures of Health-Related Quality of Life

      , , ,
      Journal of the American Society of Nephrology
      American Society of Nephrology (ASN)

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          Abstract

          Monitoring patient-reported outcomes to capture CKD’s effects on health-related quality of life (QOL) is important for population health and individual care. Current measures such as the Kidney Disease Quality of Life-36 (KDQOL-36) do not incorporate some proven measurement advances, and measures incorporating such advances are rarely compared with current methods. The authors evaluated the validity of a new approach to CKD-specific QOL measurement that comprehensively represents CKD-specific QOL, yields a single summary QOL impact score, and generally requires only 1 minute. Across CKD stages 3–5, dialysis, and transplant patients, results favored the new approach over the KDQOL-36 in comparisons of validity, including responsiveness (sensitivity to clinical change), across multiple clinical tests. Computerized adaptive test versions of the new approach were more efficient than static versions. Patient-reported outcome measures that are more practical and clinically useful are needed for patients with CKD. We compared a new CKD-specific quality-of-life impact scale (CKD-QOL) with currently used measures. Patients ( n =485) in different treatment groups (nondialysis stages 3–5, on dialysis, or post-transplant) completed the kidney-specific CKD-QOL and Kidney Disease Quality of Life-36 (KDQOL-36) forms and the generic SF-12 Health Survey at baseline and 3 months. New items summarizing quality of life (QOL) impact attributed to CKD across six QOL domains yielded single impact scores from a six-item static (fixed-length) form and from computerized adaptive tests (CATs) with three to six items. Validity tests compared the CKD-QOL, KDQOL-36 (Burden, Effects, and Symptoms/Problems subscales), and generic SF-12 measures across groups in four tests of clinical status and clinician assessment of change (CKD-specific tests), and number of comorbidities. ANOVA was used to test for group mean differences, variances in each measure explained by groups, and relative validity (RV) in comparison with the referent KDQOL-36 Burden subscale. KDQOL-36 and CKD-QOL measures generally discriminated better than generic SF-12v2 measures. The pattern of variances across CKD-specific tests comparing validity favored CKD-QOL two-fold over KDQOL-36. Two RV test results confirmed CKD-QOL improvements over the referent KDQOL scale. Results for static and CAT CKD-QOL forms were similar. SF-12 Physical and KDQOL-36 Symptoms scores worsened with increasing comorbid condition counts. Overall, compared with the KDQOL-36, the new approach to summarizing CKD-specific QOL impact performed better across multiple tests of validity. CAT surveys were more efficient than static surveys.

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          Most cited references21

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          Coefficient alpha and the internal structure of tests

          Psychometrika, 16(3), 297-334
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            Quality of life and survival in patients with advanced kidney failure managed conservatively or by dialysis.

            Benefits of dialysis in elderly dependent patients are not clearcut. Some patients forego dialysis, opting for conservative kidney management (CKM). This study prospectively compared quality of life and survival in CKM patients and those opting for dialysis. Quality-of-life assessments (Short-Form 36, Hospital Anxiety and Depression Scale, and Satisfaction with Life Scale) were performed every 3 months for up to 3 years in patients with advanced, progressive CKD (late stage 4 and stage 5). After 3 years, 80 and 44 of 170 patients had started or were planned for hemodialysis (HD) or peritoneal dialysis, respectively; 30 were undergoing CKM; and 16 remained undecided. Mean baseline estimated GFR ± SD was similar (14.0 ± 4.0 ml/min per 1.73 m(2)) in all groups but was slightly higher in undecided patients. CKM patients were older, more dependent, and more highly comorbid; had poorer physical health; and had higher anxiety levels than the dialysis patients. Mental health, depression, and life satisfaction scores were similar. Multilevel growth models demonstrated no serial change in quality-of-life measures except life satisfaction, which decreased significantly after dialysis initiation and remained stable in CKM. In Cox models controlling for comorbidity, Karnofsky performance scale score, age, physical health score, and propensity score, median survival from recruitment was 1317 days in HD patients (mean of 326 dialysis sessions) and 913 days in CKM patients. Patients choosing CKM maintained quality of life. Adjusted median survival from recruitment was 13 months shorter for CKM patients than HD patients.
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              The Factor Structure of the SF-36 Health Survey in 10 Countries

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                Author and article information

                Journal
                Journal of the American Society of Nephrology
                JASN
                American Society of Nephrology (ASN)
                1046-6673
                1533-3450
                March 29 2019
                April 2019
                April 2019
                March 21 2019
                : 30
                : 4
                : 664-677
                Article
                10.1681/ASN.2018080814
                6442339
                30898870
                4c9ed01e-e8f3-4033-8cf0-e24b32e5a9ab
                © 2019
                History

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