Health-related quality of life across all stages of autosomal dominant polycystic kidney disease

Eriksson, Daniel; Karlsson, Linda; Eklund, Oskar; Dieperink, Hans; Honkanen, Eero; Melin, Jonas; Selvig, Kristian; Lundberg, Johan

doi:10.1093/ndt/gfw335

Cited by 20 publications

(25 citation statements)

References 16 publications

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“…Similar findings were found in the studies conducted by Pagel M et al, Eriksson E et al, reported that the QoL was impaired in stage 5D compared to other stages (p -0.000). 10,11 Eriksson E et al, also reported the better EQ-5D index and VAS scores for the CKD stages 3-5 and 5D than the present study. 11 Whereas in a study conducted by Kathib ST et al, reported comparatively less EQ-5D index and VAS scores and Sakthong P et al, reported the better EQ-5D index and VAS scores for the CKD-5D than present study.…”

Section: Resultssupporting

confidence: 61%

“…10,11 Eriksson E et al, also reported the better EQ-5D index and VAS scores for the CKD stages 3-5 and 5D than the present study. 11 Whereas in a study conducted by Kathib ST et al, reported comparatively less EQ-5D index and VAS scores and Sakthong P et al, reported the better EQ-5D index and VAS scores for the CKD-5D than present study. 12,13 In the study, the most commonly affected domains among the study population were usual activities (79%), pain (76.20%) and anxiety and depression (71.91%).…”

Section: Resultssupporting

confidence: 61%

“…In an another study conducted by Saffari M et al, reported that mobility (59.4%) was the most commonly affected domain followed by pain (47.8%). 11,14 In our study, most of the CKD patients were in the age group between 51 and 65 years (43.33%) and the mean age of the study population was 52 ± 16.04. The EQ-5D index and VAS scores had strong association with age groups (p -0.000).…”

Section: Resultsmentioning

confidence: 59%

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Dimensions of quality of life in the different stages of chronic kidney disease patients – A cross-sectional study

Pauly

Mateti

Shenoy

et al. 2020

Clinical Epidemiology and Global Health

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Background: Chronic Kidney Disease (CKD) is an emerging disease that causes morbidity, mortality and affects patient's quality of life (QoL). Objectives: To assess and compare dimensions of QoL in the different stages of CKD patients and also to identify the factors affecting QoL. Data and methods: A cross-sectional study was carried out for a period of 8 months in the Dept. of Nephrology. The inclusion criterion of the study is patients above 18 years age diagnosed with CKD stage 3-5 and patients undergoing maintenance haemodialysis. The patients were assessed for QoL using European-QoL-5-dimensional (EQ-QoL-5D) and visual analog scale (VAS) questionnaires. Results: Out of 210 patients, most of the patients were in the age group 51-65 years (43.33%) and the mean age of study population was 52 ± 16.04. In the present study, most of the patients were males (79.04%). The most common comorbidities were hypertension (90%) and 51% of diabetes mellitus (DM). The mean EQ-5D index scores of the CKD stage 3, 4, 5 and 5D patients were 0.77 ± 0.09, 0.67 ± 0.10, 0.62 ± 0.12 and 0.50 ± 0.15 and the mean VAS scores for these stages were 74.10 ± 7.68, 66.52 ± 10.90, 66.45 ± 8.80 and 55.04 ± 12.82 respectively. Conclusion: The most commonly affected domains were usual activities (79%), pain (76.20%) and anxiety/depression (71.91%). Factors such as age (> 65 yrs), BMI (Underweight and Obese), educational background (Illiterate), Unemployment, domiciliary status (Rural), number of medications (> 11) had significant association with EQ-5D index and VAS scores (p-0.000). It was found that QoL was impaired in stage 5D compared to other stages (p-0.000).

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Section: Resultssupporting

confidence: 61%

Section: Resultssupporting

confidence: 61%

Section: Resultsmentioning

confidence: 59%

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Dimensions of quality of life in the different stages of chronic kidney disease patients – A cross-sectional study

Pauly

Mateti

Shenoy

et al. 2020

Clinical Epidemiology and Global Health

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“…Eriksson and colleagues (2017) present a study assessing HRQL across all stages of autosomal dominant polycystic kidney disease (ADPKD): chronic kidney disease, dialysis, and transplant. PCS scores for these patients ranged from 34.9 for dialysis patients to 51.2 for early chronic kidney disease patients [ 38 ]. MCS scores ranged from 47.0 for dialysis patients to 52.7 for kidney transplant patients.…”

Section: Discussionmentioning

confidence: 99%

Burden of renal angiomyolipomas associated with tuberous sclerosis complex: results of a patient and caregiver survey

Rentz

Skalicky

Liu

et al. 2018

J Patient Rep Outcomes

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BackgroundTuberous sclerosis complex (TSC) is a rare genetic disorder characterized by benign tumors in multiple organs, including non-cancerous kidney lesions known as renal angiomyolipomas. This study’s objective is to describe the age-stratified morbidity, treatment patterns, and health-related quality of life of TSC patients with renal angiomyolipomas in the United States. A cross-sectional, anonymous web-based survey was conducted with a convenience sample of TSC patients and caregivers identified through a patient advocacy organization.ResultsOut of the total sample of 676, 182 respondents reported having kidney complications with 33% of the pediatric group and 25% of the adult group with TSC reporting them. Of those with kidney complications, 110 (60%) reported a diagnosis of renal angiomyolipomas, of which 79 (72%) were adult patients and 31 (28%) were pediatric age patients. Eighty-four percent of the pediatric group and 76% of the adult group reported lesions on both kidneys. Of the patients experiencing involvement of only one kidney, 60% of the pediatric group and 21% of the adult group reported having multiple tumors within the affected kidney. Almost all of the sample (99%) reported seeing a physician and having a procedure or test for TSC in the past year. Less than half the respondents (44%) reported being hospitalized in the past year. Thirty-nine percent reported an emergency room visit as well. Compared to scores for patients with kidney disease, the angiomyolipoma adult patients reported significantly lower Mental Component Summary scores on the SF-12.ConclusionsRenal angiomyolipomas burden leads to frequent healthcare resource use including hospitalization, invasive treatments, and surgical procedures, which result in an impaired mental health related quality of life.

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“…stages 4–5) and available data are derived from monocentric, cross-sectional studies conducted prior to the availability of tolvaptan [ 2 ]. A small number of studies have investigated QoL in early-stage ADPKD (CKD stages 1–3) finding that, while QoL is higher in early stages of the diseases than during the later stages, early-stage ADPKD has significant physical and emotional impact on patients [ 15 , 16 ]. However, these studies used generic measures of HRQoL, rather than questionnaires specifically designed to assess the disease-specific effects ADPKD has on patients’ HRQoL.…”

Section: Introductionmentioning

confidence: 99%

Rationale and study protocol of ACQUIRE, a prospective, observational study measuring quality of life, treatment preference and treatment satisfaction of autosomal dominant polycystic kidney disease (ADPKD) patients in Europe

et al. 2020

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Background Autosomal dominant polycystic kidney disease (ADPKD) is considered the most common inherited renal disease. Patient-Reported Outcomes (PROs) and patient experience in ADPKD are difficult to quantify and have not been well studied, particularly in the early stages of the disease. There is evidence to suggest that early-stage ADPKD patients have a lower Health-Related Quality of Life (HRQoL) than the general population due to the signs and symptoms of early-stage ADPKD. However, no research has been carried out on the HRQoL of early-stage ADPKD patients using validated ADPKD-specific PRO measures. Additionally, a new disease progression delaying treatment option has recently emerged for ADPKD. Patient preference for this treatment and unmet treatment needs have not yet been investigated. Methods The ACQUIRE study is a prospective, observational study investigating the influence of early-stage ADPKD-related symptoms and treatments on PROs. It aims to collect real-world data on patient demographics, treatment patterns, clinical outcomes, and PROs such as HRQoL, treatment satisfaction and treatment preference in early-stage ADPKD. Adult ADPKD patients in stages 1–3 of chronic kidney disease (CKD) with evidence of rapidly progressing disease are being recruited from seven European countries. At baseline and every 3 months, for a follow-up period of 18 months, general and disease-specific questionnaires are completed remotely to capture patients’ own assessment of their overall and ADPKD-related HRQoL. A Discrete Choice Experiment (DCE) is also used to investigate the value patients place on different attributes of hypothetical treatment options (e.g. treatment outcomes, side effects) and the role each attribute plays in determining overall patient treatment preference. Discussion The results of this study will highlight the real-world effects of ADPKD-related challenges on PROs including HRQoL, treatment experience and satisfaction; and help physicians gain greater insight into likely disease outcomes based on early-stage patient symptoms and patients’ experience with treatment. Data captured by the DCE may inform ADPKD treatment decision-making from a patient perspective. The DCE will also provide insights into which patients are more likely to perceive benefit from treatments based on the value and trade-offs they place on specific treatment attributes. Trial registration NCT02848521 . Protocol Number/Version : 156–303-00096/Final

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Health-related quality of life across all stages of autosomal dominant polycystic kidney disease

Cited by 20 publications

References 16 publications

Dimensions of quality of life in the different stages of chronic kidney disease patients – A cross-sectional study

Dimensions of quality of life in the different stages of chronic kidney disease patients – A cross-sectional study

Burden of renal angiomyolipomas associated with tuberous sclerosis complex: results of a patient and caregiver survey

Rationale and study protocol of ACQUIRE, a prospective, observational study measuring quality of life, treatment preference and treatment satisfaction of autosomal dominant polycystic kidney disease (ADPKD) patients in Europe

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