Prevalence and Outcomes of Chronic Kidney Disease Associated Pruritus: International Results from PDOPPS.

BACKGROUND: Pruritus is common in hemodialysis (HD) patients. Less is known about the prevalence and outcomes of pruritus among patients receiving peritoneal dialysis (PD). Herein, we describe the prevalence of pruritus and its associations with patient-reported outcomes (PROs) and mortality/transfer to HD. METHODS: We analyzed a multicenter, international cohort of PD patients enrolled in the Peritoneal Dialysis Outcomes and Practice Patterns Study (PDOPPS) from 2014-2022. Pruritus was assessed at entry into PDOPPS with a single-question Likert Scale capturing the extent to which patients were bothered by itch ranging from 1: Not at all, to 5: Extremely. The KDQOL-36 and the Centre for Epidemiological Studies Depression Scale assessed various PROs. Moderate to extreme pruritus was defined as a Likert scale score ≥3. The associations of pruritus with PROs were assessed using linear/logistic regression where appropriate. Death or HD transfer was assessed using multivariable Cox regression models. RESULTS: Overall, 5535 patients from seven countries were included; 43% had moderate to extreme pruritus which was highest in Thailand (50%) and lowest in the United States (33%). The adjusted odds ratios (aOR) of moderate to extreme pruritus were higher for diabetes, low albumin, and elevated phosphorus but lower for residual urine volume (aOR= 0.98 per 200 ml increase in 24-hour urine volume, 95% confidence interval [CI]; 0.96-1.00, P=0.05). Patients with extreme pruritus had the lowest mental and physical health component scores and a higher burden of other PROs including restless legs and disturbed sleep. Overall, 899 patients died and 1221 transferred to HD. Patients with moderate to extreme pruritus were at higher adjusted risk for death or HD transfer (adjusted hazard ratio [aHR] 1.12, 95% CI 1.02-1.23, P=0.02) with similar point estimates for each subcomponent of the composite outcome. CONCLUSIONS: Pruritus is highly prevalent in PD and associated with poor health outcomes. Efforts to better identify and manage pruritus should be considered in this population.

The impact of shortening patient-doctor contact duration on early peritoneal dialysis-related infections.

Early peritoneal dialysis (PD)-related infection is a severe complication. This study investigated the relationship between patient-doctor contact (PDC) duration and early PD-related infection. In the Peritoneal Dialysis Outcomes and Practice Patterns Study (PDOPPS) Korea, incident dialysis patients receiving PD were divided into two groups based on PDC duration (< 15 min versus ≥ 15 min), which was defined as the duration a nephrologist typically spends with a patient receiving PD during each visit according to the facility practice pattern. Early risks of PD-related infections, such as peritonitis and catheter-related infection (onset within 3 and 12 months of PD), were compared to the PDC duration using Cox regression. The study included 276 patients (184 [66.7%] in the shorter PDC group [< 15 min] and 92 [33.3%] in the longer PDC group [≥ 15 min]). The average age did not differ between the groups. The incidences of 3- and 12-month PD-related infections were significantly lower in the longer PDC group than in the shorter PDC group (3 months: 1.1% versus 9.8%, P = 0.007; 12 months: 9.8% versus 23.4%, P = 0.007). Longer PDC was independently associated with a lower risk of PD-related infections at 3 and 12 months (3 months: adjusted hazard ratio [aHR], 0.11; 95% confidence interval [CI], 0.02-0.85, P = 0.034; 12 months: aHR, 0.43; 95% CI 0.19-0.99, P = 0.048). Overall, a longer PDC duration was associated with a significantly lower risk of early PD-related infection.

Structures for quality assurance and measurements for kidney replacement therapies: A multinational study from the ISN-GKHA.

AIM: Optimal care for patients with kidney failure reduces the risks of adverse health outcomes, including cardiovascular events and death. We evaluated data from the third iteration of the International Society of Nephrology Global Kidney Health Atlas (ISN-GKHA) to assess the capacity for quality service delivery for kidney failure care across countries and regions. METHOD: We explored the quality of kidney failure care delivery and the monitoring of quality indicators from data provided by an international survey of stakeholders from countries affiliated with the ISN from July to September 2022. RESULTS: One hundred and sixty seven countries participated in the survey, representing about 97.4% of the world's population. In countries where haemodialysis (HD) was available, 81% (n = 134) provided standard HD sessions (three times weekly for 3-4 h per session) to patients. Among countries with peritoneal dialysis (PD) services, 61% (n = 101) were able to provide standard PD care (3-4 exchanges per day). In high-income countries, 98% (n = 62) reported that >75% of centers regularly monitored dialysis water quality for bacteria compared to 28% (n = 5) of low-income countries (LICs). Capacity to monitor the administration of immunosuppression drugs was generally available in 21% (n = 4) of LICs, compared to 90% (n = 57) of high-income countries. There was significant variability between and within regions and country income groups in reporting the quality of services utilized for kidney replacement therapies. CONCLUSION: Quality assurance standards on diagnostic and treatment tools were variable and particularly infrequent in LICs. Standardization of delivered care is essential for improving outcomes for people with kidney failure.

Barriers and enablers to salt intake reduction in Australian adults with high blood pressure.

High dietary salt intake is a known risk factor for hypertension. However, Australians continue to consume excessive amounts of salt. The purpose of this study was to identify barriers, enablers and strategies to reduce salt in a sample of Australian adults with hypertension. This was a qualitative study. Participants were asked a set of open-ended questions during focus groups conducted between October 2020 and April 2021. Sessions were recorded and transcribed. Using an inductive approach, the transcript data from the focus groups were thematically analysed. This involved checking accuracy, becoming familiar with the data, coding responses based on questions, identifying themes through common patterns and validating themes by grouping similar questions that represented the data and study aim effectively. Thirty-one adults (55 % females) with high blood pressure participated in the focus group discussions. Participants demonstrated good knowledge of high blood pressure risk factors but lacked an understanding of recommended salt intake levels and sources of hidden salt. Challenges in reducing salt intake included the limited availability of low-salt commercial foods. Participants suggested improved food labelling and the use of technology-based interventions to promote healthier choices. Findings highlight the need for behavioural interventions, policy reforms and collaborations between the government, food industries and health organisations to address high salt intake in the population.

Patient navigator programmes for children and adolescents with chronic diseases.

BACKGROUND: Despite a substantial global improvement in infant and child mortality from communicable diseases since the early 1990s there is now a growing burden of chronic disease in children and adolescents worldwide, mimicking the trend seen in the adult population. Chronic diseases in children and adolescents can affect all aspects of their well-being and function with these burdens and their health-related consequences often carried into adulthood. Up to one third of disability-adjusted life years for children and adolescents globally are a result of chronic disease. This has profound implications for the broader family unit, communities, and health systems in which these children and young people reside. Models of chronic care delivery for children and adolescents with chronic disease have traditionally been adapted from adult models. There is a growing recognition that children and adolescents with chronic diseases have a unique set of healthcare needs. Their needs extend beyond disease education and management appropriate to the developmental stage of the child, to encompass psychological well-being for the entire family and a holistic care approach focusing on the social determinants of health. It is for this reason that patient navigators have been proposed as a potential intervention to help fulfil this critical healthcare gap. Patient navigators are trained medical or non-medical personnel (e.g. lay health workers, community health workers, nurses, or people with lived experience) who provide guidance for the patients (and their primary caregivers) as they move through complex (and often bewildering) medical and social systems. The navigator may deliver education, help to co-ordinate patient care, be an advocate for the patient (and their primary caregivers), or combinations of these. Patient navigators can assist people with a chronic illness (especially those who are vulnerable or from a marginalised population, or both) to better understand their diagnoses, treatment options, and available resources. As there is considerable variation in the purpose, design, and target population of patient navigator programmes, there is a need to systematically review and summarise the existing literature on the effectiveness of navigator programmes in children and young adults with chronic disease. OBJECTIVES: To assess the effectiveness of patient navigator programmes in children and adolescents with chronic diseases. SEARCH METHODS: We searched the Cochrane Library and Epistemonikos up to 20 January 2023 for related systematic reviews using search terms relevant to this review. We searched CENTRAL, MEDLINE, Embase, CINAHL EBSCO, conference proceedings, the International Clinical Trials Register (ICTRP) Search Portal, and ClinicalTrials.gov for primary studies. SELECTION CRITERIA: We included randomised controlled trials reporting the effect of patient navigator interventions on children and adolescents (aged 18 years or younger) with any chronic disease in hospital or community settings. Two review authors independently assessed the retrieved titles and abstracts, and where necessary, the full text to identify studies that satisfied the inclusion criteria. DATA COLLECTION AND ANALYSIS: Two review authors extracted data using a standard data extraction form. We used a random-effects model to perform a quantitative synthesis of the data. We used the I² statistic to measure heterogeneity amongst the studies in each analysis. We indicated summary estimates as mean differences (MD), where studies used the same scale, or standardised mean differences (SMD), where studies used different scales, with 95% confidence intervals (CI). We used subgroup and univariate meta-regression to assess reasons for between-study differences. We used the Cochrane RoB 1 tool to assess the methodological quality of the included studies. We used GRADE to assess the certainty of the evidence. MAIN RESULTS: We included 17 studies (2895 randomised participants). All studies compared patient navigators with standard care. Most studies were at unclear or high risk of bias. Meta-analysis was undertaken only for those studies that had the same duration of patient navigator intervention and follow-up/reporting of outcome measures. The evidence is very uncertain about the effects of patient navigator programmes compared with standard care on self-reported quality of life of children with chronic illness (SMD 0.63, 95% CI -0.20 to 1.47; I2 = 96%; 4 studies, 671 participants; very low-certainty evidence); parent proxy-reported quality of life (SMD 0.09, 95% CI -2.21 to 2.40; I2 = 99%; 2 studies, 309 participants; very low-certainty evidence); or parents' or caregivers' quality of life (SMD -1.98, 95% CI -4.13 to 0.17; I2 = 99%; 3 studies, 757 participants; very low-certainty evidence). It is uncertain whether duration of patient navigator intervention accounts for any of the variances in the changes in quality of life. The evidence is very uncertain about the effects of patient navigator programmes compared with standard care on the number of hospital admissions (MD -0.05, 95% CI -0.34 to 0.23; I2 = 99%; 2 studies, 381 participants; very low-certainty evidence) and the number of presentations to the emergency department (MD 0.06, 95% CI -0.23 to 0.34; I2 = 98%; 2 studies, 381 participants; very low-certainty evidence). Furthermore, it is unclear whether patient navigator programmes reduce the number of missed school days as data were sparse (2 studies, 301 participants). Four studies (629 participants) reported data on resource use. However, given the variation in units of analysis used, meta-analysis was not possible (very low-certainty evidence). All studies reported cost savings or quality-adjusted life year improvement (or both) in the patient navigation arm. No studies reported on adverse events (specifically, abuse of any type against the navigator, the patient, or their family members). AUTHORS' CONCLUSIONS: There is insufficient evidence at present to support the use of patient navigator programmes for children and adolescents with chronic diseases. The current evidence is based on limited data with very low-certainty evidence. Further studies are likely to significantly change these results.

A global snapshot on health systems capacity for detection, monitoring, and management of acute kidney injury: A multinational study from the ISN-GKHA.

Acute kidney injury (AKI) is a significant cause of morbidity and mortality, especially in low and lower-middle income countries. Data from the third iteration of the International Society of Nephrology Global Kidney Health Atlas (ISN-GKHA) were used to evaluate the organization of structures and services for the provision of AKI care in world countries and ISN regions. An international survey of key stakeholders (clinicians, policymakers, and patient advocates) from countries affiliated with the ISN was conducted from July to September 2022 to assess structures and services for AKI care across countries. Main findings of the study show that overall, 167 countries or jurisdictions participated in the survey, representing 97.4% of the world's population. Only 4% of countries had an AKI detection program based on national policy or guideline, and 50% of these countries used a reactive approach for AKI identification (i.e., cases managed as identified through clinical practice). Only 19% of national governments recognized AKI as a healthcare priority. Almost all countries (98% of the countries surveyed) reported capacity to provide acute hemodialysis (HD) for AKI, but in 31% of countries, peritoneal dialysis (PD) was unavailable for AKI. About half of all countries (44% of countries surveyed) provided acute dialysis (HD or PD) via public funding, but funding availability varied across ISN regions, including less than a quarter of countries in Oceania and South East Asia (17%) and Africa (24%) and highest availability in Western Europe (91%). Availability increased with the increasing country income level. Initiatives have been developed to propose and promote optimal care for AKI (including the ISN 0-by-25 initiative), but capacity for optimal AKI care remains low, particularly in low- and lower-middle-income countries. Concerted efforts by the global community are required to close these gaps, to improve AKI outcomes across the world.

Progress of nations in the organisation of, and structures for, kidney care delivery between 2019 and 2023: cross sectional survey in 148 countries.

OBJECTIVE: To assess changes in key measures of kidney care using data reported in 2019 and 2023. DESIGN: Cross sectional survey in 148 countries. SETTING: Surveys from International Society of Nephrology Global Kidney Health Atlas between 2019 and 2023 that included participants from countries in Africa (n=36), Eastern and Central Europe (n=16), Latin America (n=18), the Middle East (n=11), Newly Independent States and Russia (n=10), North America and the Caribbean (n=8), North and East Asia (n=6), Oceania and South East Asia (n=15), South Asia (n=7), and Western Europe (n=21). PARTICIPANTS: Countries that participated in both surveys (2019 and 2023). MAIN OUTCOME MEASURES: Comparison of 2019 and 2023 data for availability of kidney replacement treatment services, access, health financing, workforce, registries, and policies for kidney care. Data for countries that participated in both surveys (2019 and 2023) were included in our analysis. Country data were aggregated by International Society of Nephrology regions and World Bank income levels. Proportionate changes in the status of these measures across both periods were reported. RESULTS: Data for 148 countries that participated in both surveys were available for analysis. The proportions of countries that provided public funding (free at point of delivery) increased from 27% in 2019 to 28% in 2023 for haemodialysis, 23% to 28% for peritoneal dialysis, and 31% to 36% for kidney transplantation services. Centres for these treatments increased from 4.4 per million population (pmp) to 4.8 pmp (P<0.001) for haemodialysis, 1.4 pmp to 1.6 pmp for peritoneal dialysis, and 0.43 pmp to 0.46 pmp for kidney transplantation services. Overall, access to haemodialysis and peritoneal dialysis improved, however, access to kidney transplantation decreased from 30 pmp to 29 pmp. The global median prevalence of nephrologists increased from 9.5 pmp to 12.4 pmp (P<0.001). Changes in the availability of kidney registries and in national policies and strategies for kidney care were variable across regions and country income levels. The reporting of specific barriers to optimal kidney care by countries increased from 55% to 59% for geographical factors, 58% to 68% (P=0.043) for availability of nephrologists, and 46% to 52% for political factors. CONCLUSIONS: Important changes in key areas of kidney care delivery were noted across both periods globally. These changes effected the availability of, and access to, kidney transplantation services. Countries and regions need to enact enabling strategies for preserving access to kidney care services, particularly kidney transplantation.

Worldwide organization and structures for kidney transplantation services.

BACKGROUND: Kidney transplantation (KT) is the preferred modality of kidney replacement therapy with better patient outcomes and quality of life compared with dialytic therapies. This study aims to evaluate the epidemiology, accessibility and availability of KT services in countries and regions around the world. METHODS: This study relied on data from an international survey of relevant stakeholders (clinicians, policymakers and patient advocates) from countries affiliated with the International Society of Nephrology that was conducted from July to September 2022. Survey questions related to the availability, access, donor type and cost of KT. RESULTS: In total, 167 countries responded to the survey. KT services were available in 70% of all countries, including 86% of high-income countries, but only 21% of low-income countries. In 80% of countries, access to KT was greater in adults than in children. The median global prevalence of KT was 279.0 [interquartile range (IQR) 58.0-492.0] per million people (pmp) and the median global incidence was 12.2 (IQR 3.0-27.8) pmp. Pre-emptive KT remained exclusive to high- and upper-middle-income countries, and living donor KT was the only available modality for KT in low-income countries. The median cost of the first year of KT was $26 903 USD and varied 1000-fold between the most and least expensive countries. CONCLUSION: The availability, access and affordability of KT services, especially in low-income countries, remain limited. There is an exigent need to identify strategies to ensure equitable access to KT services for people with kidney failure worldwide, especially in the low-income countries.

Global access and quality of conservative kidney management.

BACKGROUND: Conservative kidney management (CKM) describes supportive care for people living with kidney failure who choose not to receive or are unable to access kidney replacement therapy (KRT). This study captured the global availability of CKM services and funding. METHODS: Data came from the International Society of Nephrology Global Kidney Health survey conducted between June and September 2022. Availability of CKM, infrastructure, guidelines, medications and training were evaluated. RESULTS: CKM was available in some form in 61% of the 165 responding countries. CKM chosen through shared decision-making was available in 53%. Choice-restricted CKM-for those unable to access KRT-was available in 39%. Infrastructure to provide CKM chosen through shared decision-making was associated with national income level, reported as being "generally available" in most healthcare settings for 71% of high-income countries, 50% of upper-middle-income countries, 33% of lower-middle-income countries and 42% of low-income countries. For choice-restricted CKM, these figures were 29%, 50%, 67% and 58%, respectively. Essential medications for pain and palliative care were available in just over half of the countries, highly dependent upon income setting. Training for caregivers in symptom management in CKM was available in approximately a third of countries. CONCLUSIONS: Most countries report some capacity for CKM. However, there is considerable variability in terms of how CKM is defined, as well as what and how much care is provided. Poor access to CKM perpetuates unmet palliative care needs, and must be addressed, particularly in low-resource settings where death from untreated kidney failure is common.

A global overview of health system financing and available infrastructure and oversight for kidney care.

BACKGROUND: Governance, health financing, and service delivery are critical elements of health systems for provision of robust and sustainable chronic disease care. We leveraged the third iteration of the International Society of Nephrology Global Kidney Health Atlas (ISN-GKHA) to evaluate oversight and financing for kidney care worldwide. METHODS: A survey was administered to stakeholders from countries affiliated with the ISN from July to September 2022. We evaluated funding models utilized for reimbursement of medications, services for the management of chronic kidney disease, and provision of kidney replacement therapy (KRT). We also assessed oversight structures for the delivery of kidney care. RESULTS: Overall, 167 of the 192 countries and territories contacted responded to the survey, representing 97.4% of the global population. High-income countries tended to use public funding to reimburse all categories of kidney care in comparison with low-income countries (LICs) and lower-middle income countries (LMICs). In countries where public funding for KRT was available, 78% provided universal health coverage. The proportion of countries that used public funding to fully reimburse care varied for non-dialysis chronic kidney disease (27%), dialysis for acute kidney injury (either hemodialysis or peritoneal dialysis) (44%), chronic hemodialysis (45%), chronic peritoneal dialysis (42%), and kidney transplant medications (36%). Oversight for kidney care was provided at a national level in 63% of countries, and at a state/provincial level in 28% of countries. CONCLUSION: This study demonstrated significant gaps in universal care coverage, and in oversight and financing structures for kidney care, particularly in in LICs and LMICs.

Global data monitoring systems and early identification for kidney diseases.

BACKGROUND: Data monitoring and surveillance systems are the cornerstone for governance and regulation, planning, and policy development for chronic disease care. Our study aims to evaluate health systems capacity for data monitoring and surveillance for kidney care. METHODS: We leveraged data from the third iteration of the International Society of Nephrology Global Kidney Health Atlas (ISN-GKHA), an international survey of stakeholders (clinicians, policymakers and patient advocates) from 167 countries conducted between July and September 2022. ISN-GKHA contains data on availability and types of kidney registries, the spectrum of their coverage, as well as data on national policies for kidney disease identification. RESULTS: Overall, 167 countries responded to the survey, representing 97.4% of the global population. Information systems in forms of registries for dialysis care were available in 63% (n = 102/162) of countries, followed by kidney transplant registries (58%; n = 94/162), and registries for non-dialysis chronic kidney disease (19%; n = 31/162) and acute kidney injury (9%; n = 14/162). Participation in dialysis registries was mandatory in 57% (n = 58) of countries; however, in more than half of countries in Africa (58%; n = 7), Eastern and Central Europe (67%; n = 10), and South Asia (100%; n = 2), participation was voluntary. The least-reported performance measures in dialysis registries were hospitalization (36%; n = 37) and quality of life (24%; n = 24). CONCLUSIONS: The variability of health information systems and early identification systems for kidney disease across countries and world regions warrants a global framework for prioritizing the development of these systems.

A global assessment of kidney care workforce.

BACKGROUND: An adequate workforce is needed to guarantee optimal kidney care. We used the International Society of Nephrology Global Kidney Health Atlas (ISN-GKHA) to provide an assessment of the global kidney care workforce. METHODS: We conducted a multinational cross-sectional survey to evaluate the global capacity of kidney care and assessed data on the number of adult and paediatric nephrologists, the number of trainees in nephrology and shortages of various cadres of the workforce for kidney care. Data are presented according to the ISN region and World Bank income categories. RESULTS: Overall, stakeholders from 167 countries responded to the survey. The median global prevalence of nephrologists was 11.75 per million population (pmp) (interquartile range [IQR] 1.78-24.76). Four regions had median nephrologist prevalences below the global median: Africa (1.12 pmp), South Asia (1.81 pmp), Oceania and Southeast Asia (3.18 pmp) and newly independent states and Russia (9.78 pmp). The overall prevalence of paediatric nephrologists was 0.69 pmp (IQR 0.03-1.78), while overall nephrology trainee prevalence was 1.15 pmp (IQR 0.18-3.81), with significant variations across both regions and World Bank income groups. More than half of the countries reported shortages of transplant surgeons (65%), nephrologists (64%), vascular access coordinators (59%), dialysis nurses (58%) and interventional radiologists (54%), with severe shortages reported in low- and lower-middle-income countries. CONCLUSIONS: There are significant limitations in the available kidney care workforce in large parts of the world. To ensure the delivery of optimal kidney care worldwide, it is essential to develop national and international strategies and training capacity to address workforce shortages.

Global structures, practices, and tools for provision of chronic peritoneal dialysis.

BACKGROUND: Worldwide, the uptake of peritoneal dialysis (PD) compared with hemodialysis remains limited. This study assessed organizational structures, availability, accessibility, affordability and quality of PD worldwide. METHODS: This cross-sectional study relied on data from kidney registries as well as survey data from stakeholders (clinicians, policymakers and advocates for people living with kidney disease) from countries affiliated with the International Society of Nephrology (ISN) from July to September 2022. RESULTS: Overall, 167 countries participated in the survey. PD was available in 79% of countries with a median global prevalence of 21.0 [interquartile range (IQR) 1.5-62.4] per million population (pmp). High-income countries (HICs) had an 80-fold higher prevalence of PD than low-income countries (LICs) (56.2 pmp vs 0.7 pmp). In 53% of countries, adults had greater PD access than children. Only 29% of countries used public funding (and free) reimbursement for PD with Oceania and South East Asia (6%), Africa (10%) and South Asia (14%) having the lowest proportions of countries in this category. Overall, the annual median cost of PD was US$18 959.2 (IQR US$10 891.4-US$31 013.8) with full private out-of-pocket payment in 4% of countries and the highest median cost in LICs (US$30 064.4) compared with other country income levels (e.g. HICs US$27 206.0). CONCLUSIONS: Ongoing large gaps and variability in the availability, access and affordability of PD across countries and world regions were observed. Of note, there is significant inequity in access to PD by children and for people in LICs.

Global structures, practices, and tools for provision of hemodialysis.

BACKGROUND: Hemodialysis (HD) is the most commonly utilized modality for kidney replacement therapy worldwide. This study assesses the organizational structures, availability, accessibility, affordability and quality of HD care worldwide. METHODS: This cross-sectional study relied on desk research data as well as survey data from stakeholders (clinicians, policymakers and patient advocates) from countries affiliated with the International Society of Nephrology from July to September 2022. RESULTS: Overall, 167 countries or jurisdictions participated in the survey. In-center HD was available in 98% of countries with a median global prevalence of 322.7 [interquartile range (IQR) 76.3-648.8] per million population (pmp), ranging from 12.2 (IQR 3.9-103.0) pmp in Africa to 1575 (IQR 282.2-2106.8) pmp in North and East Asia. Overall, home HD was available in 30% of countries, mostly in countries of Western Europe (82%). In 74% of countries, more than half of people with kidney failure were able to access HD. HD centers increased with increasing country income levels from 0.31 pmp in low-income countries to 9.31 pmp in high-income countries. Overall, the annual cost of in-center HD was US$19 380.3 (IQR 11 817.6-38 005.4), and was highest in North America and the Caribbean (US$39 825.9) and lowest in South Asia (US$4310.2). In 19% of countries, HD services could not be accessed by children. CONCLUSIONS: This study shows significant variations that have remained consistent over the years in availability, access and affordability of HD across countries with severe limitations in lower-resourced countries.

Experiences of social isolation and loneliness in chronic kidney disease: a secondary qualitative analysis.

BACKGROUND: Many patients with chronic kidney disease (CKD) experience loneliness and social isolation, which are associated with a higher risk of mortality, morbidity, and poor mental health. We aimed to describe the perspectives of patients with CKD and their caregivers on loneliness and social isolation, to inform strategies to increase social participation. METHODS: A secondary analysis of qualitative data from the Standardized Outcomes in Nephrology (SONG) initiative dataset (36 focus groups, three Delphi surveys and seven consensus workshops) was conducted. We extracted and thematically analyzed data from patients with CKD, including those receiving hemodialysis or peritoneal dialysis and those with a kidney transplant, as well as their caregivers, on the perspectives and experiences of loneliness and social isolation. RESULTS: Collectively the studies included 1261 patients and caregivers from 25 countries. Six themes were identified: restricted by the burdens of disease and treatment (withdrawing from social activities due to fatigue, consumed by the dialysis regimen, tethered to treatment, travel restrictions); external vulnerability (infection risk, anxiety of dining out); diminishing societal role (grieving loss of opportunities, social consequences of inability to work); fending for oneself in healthcare (no one to relate to, lost in uncertainty, unmet psychosocial needs); undermining self-esteem (unable to engage in activities which previously defined self, shame and self-consciousness about appearance, hindering confidence for intimate relationships); and feeling ostracized (disconnected by family and friends, fear of stigma and being misunderstood, guilt of burdening others). CONCLUSIONS: For patients with CKD and their caregivers, social participation is substantially impaired by the burden of CKD and its treatment, and fear of risks to health such as infection. This undermines patient and caregiver mental health, particularly self-esteem and sense of belonging. Additional interventions are needed to improve social connections among people with CKD and their caregivers.

Long-term effect of increasing water intake on repeated self-assessed health-related quality of life (HRQoL) in autosomal dominant polycystic kidney disease.

Background: The aim of this study was to determine the long-term effect of increasing water intake in patients with autosomal dominant polycystic kidney disease (ADPKD) on longitudinal changes in health-related quality of life (HRQoL) in the setting of a clinical trial. Methods: Self-completed HRQoL (using the KDQoL-SF, v.1.3 questionnaire) was assessed annually in participants of a 3-year randomized controlled clinical trial (n = 187), allocated (1:1) either to increase water intake to reduce urine osmolality to ≤270 mosmol/kg (implemented by dietetic coaching, self-monitoring tools, text messaging) or continue usual water intake. Results: Overall, 96% and 81.8% of participants (n = 187) completed the questionnaire at the baseline and final study visits, respectively. At baseline, the physical component summary score (PCS) and mental component summary score (MCS) were similar in the two groups (P > 0.05) and the five dimensions with the lowest scores in both groups were: energy and fatigue; general and overall health; sleep; emotional well-being; and pain. Within each group, there were no longitudinal changes over time. At the final visit, the PCS was higher in the increased water intake group (51.3 ± 7.6, mean ± standard deviation) compared to the usual water intake group 48.8 ± 9.3; P = 0.037) whereas the MCS was numerically similar. The improvement in the PCS was due to higher sub-scale values for physical functioning and pain (both P < 0.05). By multivariate analysis, only baseline PCS and height-corrected total kidney volume were associated with the final PCS (P < 0.05). Conclusion: HRQoL scores remained stable over a 3 year period, and were not adversely affected by the intervention to increase water intake. Future studies should evaluate the clinical significance of the higher PCS in the increased water intake group.