Using Patient-Reported Measures to Improve Outcomes in Kidney Disease

Mclaren, Sofia; Jhamb, Manisha; Unruh, Mark

doi:10.1159/000515640

Cited by 11 publications

(9 citation statements)

References 20 publications

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“…Identification of the burden of symptoms for patients with advanced CKD is important: Many of the symptoms reported can be mitigated by changes in clinical management [ 19 ]. This synthesis will support clinicians and patients in consultations, to ensure that all potential symptoms associated with CKD are recognised, facilitating shared decision-making regarding management [ 20 ]. In addition, the data highlight key variations in symptom burden between kidney disease modalities, allowing clinicians to identify fundamental differences and administer appropriate treatment.…”

Section: Discussionmentioning

confidence: 99%

Symptom burden and health-related quality of life in chronic kidney disease: A global systematic review and meta-analysis

et al. 2022

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Background The importance of patient-reported outcome measurement in chronic kidney disease (CKD) populations has been established. However, there remains a lack of research that has synthesised data around CKD-specific symptom and health-related quality of life (HRQOL) burden globally, to inform focused measurement of the most relevant patient-important information in a way that minimises patient burden. The aim of this review was to synthesise symptom prevalence/severity and HRQOL data across the following CKD clinical groups globally: (1) stage 1–5 and not on renal replacement therapy (RRT), (2) receiving dialysis, or (3) in receipt of a kidney transplant. Methods and findings MEDLINE, PsycINFO, and CINAHL were searched for English-language cross-sectional/longitudinal studies reporting prevalence and/or severity of symptoms and/or HRQOL in CKD, published between January 2000 and September 2021, including adult patients with CKD, and measuring symptom prevalence/severity and/or HRQOL using a patient-reported outcome measure (PROM). Random effects meta-analyses were used to pool data, stratified by CKD group: not on RRT, receiving dialysis, or in receipt of a kidney transplant. Methodological quality of included studies was assessed using the Joanna Briggs Institute Critical Appraisal Checklist for Studies Reporting Prevalence Data, and an exploration of publication bias performed. The search identified 1,529 studies, of which 449, with 199,147 participants from 62 countries, were included in the analysis. Studies used 67 different symptom and HRQOL outcome measures, which provided data on 68 reported symptoms. Random effects meta-analyses highlighted the considerable symptom and HRQOL burden associated with CKD, with fatigue particularly prevalent, both in patients not on RRT (14 studies, 4,139 participants: 70%, 95% CI 60%–79%) and those receiving dialysis (21 studies, 2,943 participants: 70%, 95% CI 64%–76%). A number of symptoms were significantly (p < 0.05 after adjustment for multiple testing) less prevalent and/or less severe within the post-transplantation population, which may suggest attribution to CKD (fatigue, depression, itching, poor mobility, poor sleep, and dry mouth). Quality of life was commonly lower in patients on dialysis (36-Item Short Form Health Survey [SF-36] Mental Component Summary [MCS] 45.7 [95% CI 45.5–45.8]; SF-36 Physical Component Summary [PCS] 35.5 [95% CI 35.3–35.6]; 91 studies, 32,105 participants for MCS and PCS) than in other CKD populations (patients not on RRT: SF-36 MCS 66.6 [95% CI 66.5–66.6], p = 0.002; PCS 66.3 [95% CI 66.2–66.4], p = 0.002; 39 studies, 24,600 participants; transplant: MCS 50.0 [95% CI 49.9–50.1], p = 0.002; PCS 48.0 [95% CI 47.9–48.1], p = 0.002; 39 studies, 9,664 participants). Limitations of the analysis are the relatively few studies contributing to symptom severity estimates and inconsistent use of PROMs (different measures and time points) across the included literature, which hindered interpretation. Conclusions The main findings highlight the considerable symptom and HRQOL burden associated with CKD. The synthesis provides a detailed overview of the symptom/HRQOL profile across clinical groups, which may support healthcare professionals when discussing, measuring, and managing the potential treatment burden associated with CKD. Protocol registration PROSPERO CRD42020164737.

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Section: Discussionmentioning

confidence: 99%

Symptom burden and health-related quality of life in chronic kidney disease: A global systematic review and meta-analysis

et al. 2022

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“…Patient-reported outcome measures (PROMs) are very useful tools to capture patients’ experience with the disease and health care [ 7 , 10 ]. Translation and validation of PROMs are needed, as they are used not only in clinical practice but also in research and auditing.…”

Section: Discussionmentioning

confidence: 99%

“…They focus mainly on physical symptoms and rely on standard consultation, and the recognition of the severity of symptoms is often poor [ 7 , 8 ]. Using patient-reported outcome measures (PROMS) on a regular basis can improve QoL and outcomes in advanced kidney disease [ 9 , 10 ]. The optimal PROMS should be short, sensitive to a change in health status, easy to administer, valid, and reliable for the tested population [ 11 , 12 ].…”

Section: Introductionmentioning

confidence: 99%

Translation, cultural adaptation, and validation of the Integrated Palliative Outcome Scale-renal (IPOS-r) to Czech

Křemenová

Vlčková

2022

BMC Palliat Care

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Background Patients with advanced kidney disease suffer from burdensome symptoms, which should be assessed by valid and reliable patient-reported outcome measures. This study aimed to provide a translation, cultural adaptation, and validation of the Czech version of the IPOS-r. Methods The IPOS-r was translated to Czech and culturally adapted using cognitive interviews. During the validation phase, patients and staff in dialysis centres and outpatient renal clinics completed the IPOS-r. Internal consistency was tested with Cronbach’s alpha, its reliability via intraclass correlation coefficient for total IPOS-r score, and weighted Kappa (for test-retest and interrater reliability of individual items). Convergent validity was tested with Spearman correlation to Kidney Disease Quality of Life Survey-Short Form 1.2 (KDQOL-SF 1.2). We assessed sensitivity to change using a distribution-based approach. Results Two sets of translators independently performed forward and backward translations of the IPOS-r. Ten patients and ten health care professionals participated in cognitive pre-testing. The sample size for validation included 88 patients (mean age 66 ± SD13.8; 58% men) who were treated with haemodialysis (70.5%), home haemodialysis (5.5%), peritoneal dialysis (3%), and conservative management (21%). Cronbach’s alpha was 0.72, and the intraclass correlation was 0.84 for test-retest reliability and 0.73 for interrater reliability. The IPOS-r correlated with KDQOL-SF 1.2 had a rho between 0.4–0.8 for most of the IPOS-r items, showing good convergent validity. The IPOS-r measure is feasible and takes 9 minutes to complete. Patients who reported a change in health status after 1 month demonstrated a total IPOS-r score change of eight points in both positive and negative directions. Conclusions The process of translation and cultural adaptation of the IPOS-r was successful, and the Czech IPOS-r measure is a valid and reliable tool. The Czech IPOS-r can be used to assess symptoms in patients with advanced chronic kidney disease. Trial registration GAUK [82121].

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“…Clinical trials are needed to assess the effect of deprescribing on hospitalizations and patient-reported outcomes, such as health-related quality of life, in patients across the continuum of kidney disease. 87 Last, there is a need for observational studies to identify patient factors that may increase risk associated with specific medications.…”

Section: Recommended Areas For Researchmentioning

confidence: 99%

Less is More: Deprescribing Medications in Older Adults with Kidney Disease: A Review

Mohottige

Manley²,

Hall

2021

Kidney360

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Due to both age and impaired kidney function, older adults with kidney disease are at increased risk of medication-related problems and related hospitalizations. One proactive approach to minimize this risk is deprescribing. Deprescribing refers to the systematic process of reducing or stopping a medication. Aside from preventing harm, deprescribing can potentially optimize patients' quality of life by aligning medications with their goals of care. For some patients, deprescribing could involve less aggressive management of their diabetes and/or hypertension. In other instances, deprescribing targets may include potentially inappropriate medications that carry greater risk of harm than benefit in older adults, medications that have questionable efficacy, including medications that have varying efficacy by degree of kidney function, and that increase medication regimen complexity. We include a guide for clinicians to utilize in deprescribing, the List, Evaluate, Shared Decision-Making, Support (LESS) framework. The LESS framework provides key considerations at each step of the deprescribing process that can be tailored for the medications and context of individual patients. Patient characteristics or clinical events that warrant consideration of deprescribing include limited life expectancy, cognitive impairment, and health status changes, such as dialysis initiation or recent hospitalization. We acknowledge patient, clinician, and system-level challenges to the deprescribing process. These include patient hesitancy and challenges to discussing goals of care, clinician time constraints and a lack of evidence-based guidelines, as well as system-level challenges of interoperable electronic health records and limited incentives for deprescribing. However, novel evidence-based tools designed to facilitate deprescribing and future evidence on effectiveness of deprescribing could help mitigate these barriers. This review provides foundational knowledge on deprescribing as an emerging component of clinical practice and research within nephrology.

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Using Patient-Reported Measures to Improve Outcomes in Kidney Disease

Cited by 11 publications

References 20 publications

Symptom burden and health-related quality of life in chronic kidney disease: A global systematic review and meta-analysis

Symptom burden and health-related quality of life in chronic kidney disease: A global systematic review and meta-analysis

Translation, cultural adaptation, and validation of the Integrated Palliative Outcome Scale-renal (IPOS-r) to Czech

Less is More: Deprescribing Medications in Older Adults with Kidney Disease: A Review

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