Pub Date : 2024-09-01DOI: 10.1016/j.semnephrol.2025.151573
Chee Kay Cheung PhD, FRCP , Jonathan Barratt PhD, FRCP
The past few years have heralded a sea change in the treatment landscape of IgA nephropathy (IgAN). An increasing understanding of its pathogenesis coupled with favorable changes in the regulatory approval pathway has led to an explosion of clinical drug development in this disease. This has directly resulted in the approval of three novel therapies specifically for the treatment of IgAN (nefecon, sparsentan, and iptacopan), and several others are in the late stages of clinical development. In this review, we outline the rationale for new therapies in development for IgAN and emerging clinical trial data and propose a new paradigm for the treatment of this condition.
{"title":"The Rapidly Changing Treatment Landscape of IgA Nephropathy","authors":"Chee Kay Cheung PhD, FRCP , Jonathan Barratt PhD, FRCP","doi":"10.1016/j.semnephrol.2025.151573","DOIUrl":"10.1016/j.semnephrol.2025.151573","url":null,"abstract":"<div><div>The past few years have heralded a sea change in the treatment landscape of IgA nephropathy (IgAN). An increasing understanding of its pathogenesis coupled with favorable changes in the regulatory approval pathway has led to an explosion of clinical drug development in this disease. This has directly resulted in the approval of three novel therapies specifically for the treatment of IgAN (nefecon, sparsentan, and iptacopan), and several others are in the late stages of clinical development. In this review, we outline the rationale for new therapies in development for IgAN and emerging clinical trial data and propose a new paradigm for the treatment of this condition.</div></div>","PeriodicalId":21756,"journal":{"name":"Seminars in nephrology","volume":"44 5","pages":"Article 151573"},"PeriodicalIF":3.5,"publicationDate":"2024-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143586824","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-09-01DOI: 10.1016/j.semnephrol.2025.151565
Jan Novak MSc, PhD , Colin Reily PhD , Nicholas J. Steers PhD , Tillie Schumann , Dana V. Rizk MD , Bruce A. Julian MD , Krzysztof Kiryluk MD, PhD , Ali G. Gharavi MD, PhD , Todd J. Green PhD
IgA nephropathy is a mesangioproliferative glomerular disease with significant morbidity and mortality. Most patients with IgA nephropathy develop kidney failure in their lifetime, reducing their life expectancy by a decade. Since its first description in 1968, it has been established that kidneys of IgA nephropathy patients are injured as “innocent bystanders” by nephritogenic IgA1-containing immune complexes. Results from clinical, biochemical, immunologic, and genetic studies suggest a multistep pathogenetic mechanism. In genetically predisposed individuals, this process results in formation of circulating immune complexes due to the binding of IgG/IgA autoantibodies to the polymeric IgA1 molecules with incomplete O-glycosylation. This event is followed by the addition of other proteins, such as complement C3, resulting in the formation of nephritogenic immune complexes. These complexes are not effectively removed from the circulation, and some of them pass through the fenestration of glomerular endothelial cells to enter the mesangial space and activate mesangial cells. It is thought that the process is initiated by soluble immune complexes and that their accumulation results in the formation of immunodeposits that further amplify glomerular injury. Here we summarize current understanding of the pathogenesis of IgA nephropathy and discuss experimental model systems that can inform development of new therapeutic strategies and targets.
IgA 肾病是一种间质增生性肾小球疾病，发病率和死亡率都很高。大多数 IgA 肾病患者终生都会出现肾衰竭，从而使预期寿命缩短十年。自 1968 年首次描述 IgA 肾病以来，人们已经确定，IgA 肾病患者的肾脏作为 "无辜的旁观者 "受到了肾炎原 IgA1 免疫复合物的伤害。临床、生化、免疫学和遗传学研究结果表明，IgA 肾病的发病机制有多个步骤。在易感基因携带者中，由于 IgG/IgA 自身抗体与 O-糖基化不完全的聚合 IgA1 分子结合，形成循环免疫复合物。随后，其他蛋白质（如补体 C3）也会加入，从而形成致肾炎免疫复合物。这些复合物不能有效地从血液循环中清除，其中一些通过肾小球内皮细胞的栅栏进入系膜空间，激活系膜细胞。有人认为，这一过程是由可溶性免疫复合物启动的，它们的积累会形成免疫沉积物，进一步扩大肾小球损伤。在此，我们总结了目前对 IgA 肾病发病机制的理解，并讨论了可为开发新的治疗策略和靶点提供信息的实验模型系统。
{"title":"Emerging Biochemical and Immunologic Mechanisms in the Pathogenesis of IgA Nephropathy","authors":"Jan Novak MSc, PhD , Colin Reily PhD , Nicholas J. Steers PhD , Tillie Schumann , Dana V. Rizk MD , Bruce A. Julian MD , Krzysztof Kiryluk MD, PhD , Ali G. Gharavi MD, PhD , Todd J. Green PhD","doi":"10.1016/j.semnephrol.2025.151565","DOIUrl":"10.1016/j.semnephrol.2025.151565","url":null,"abstract":"<div><div>IgA nephropathy is a mesangioproliferative glomerular disease with significant morbidity and mortality. Most patients with IgA nephropathy develop kidney failure in their lifetime, reducing their life expectancy by a decade. Since its first description in 1968, it has been established that kidneys of IgA nephropathy patients are injured as “innocent bystanders” by nephritogenic IgA1-containing immune complexes. Results from clinical, biochemical, immunologic, and genetic studies suggest a multistep pathogenetic mechanism. In genetically predisposed individuals, this process results in formation of circulating immune complexes due to the binding of IgG/IgA autoantibodies to the polymeric IgA1 molecules with incomplete <em>O</em>-glycosylation. This event is followed by the addition of other proteins, such as complement C3, resulting in the formation of nephritogenic immune complexes. These complexes are not effectively removed from the circulation, and some of them pass through the fenestration of glomerular endothelial cells to enter the mesangial space and activate mesangial cells. It is thought that the process is initiated by soluble immune complexes and that their accumulation results in the formation of immunodeposits that further amplify glomerular injury. Here we summarize current understanding of the pathogenesis of IgA nephropathy and discuss experimental model systems that can inform development of new therapeutic strategies and targets.</div></div>","PeriodicalId":21756,"journal":{"name":"Seminars in nephrology","volume":"44 5","pages":"Article 151565"},"PeriodicalIF":3.5,"publicationDate":"2024-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143630912","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-09-01DOI: 10.1016/j.semnephrol.2025.151572
Fahmeedah Kamal MD , Jackson Kim MD , Richard Lafayette MD
IgA nephropathy (IgAN) is the most prevalent primary glomerular disease and has been recognized to carry a poor prognosis. It is therefore critical to identify the patients that will progress to ESKD and start treatments early. The current gold standard for diagnosis remains kidney biopsy. Histopathologic findings along with proteinuria, glomerular filtration rate, and hypertension remain the best-validated biomarkers for prognosis but do not provide enough granularity to guide treatment decisions. The current understanding of the pathophysiology of IgAN with the four-hit hypothesis has helped identify potential additional biomarkers that could become available in the foreseeable future. In this review we detail the existing data for the most promising biomarkers including galactose-deficient IgA1 and its corresponding autoantibody, markers of complement activation, as well as more nascent assays such as MicroRNAs, genomic, and microbiome biomarkers.
IgA 肾病（IgAN）是最常见的原发性肾小球疾病，预后较差。因此，识别将发展为 ESKD 的患者并尽早开始治疗至关重要。目前诊断的金标准仍然是肾活检。组织病理学检查结果以及蛋白尿、肾小球滤过率和高血压仍是预后的最佳生物标志物，但其精细程度不足以指导治疗决策。目前对 IgAN 病理生理学的理解和四击假说有助于确定在可预见的将来可能出现的其他生物标志物。在这篇综述中，我们详细介绍了最有前景的生物标志物的现有数据，包括半乳糖缺乏的 IgA1 及其相应的自身抗体、补体激活标志物，以及 MicroRNA、基因组和微生物组生物标志物等新兴检测方法。
{"title":"Current Biomarkers of IgA Nephropathy","authors":"Fahmeedah Kamal MD , Jackson Kim MD , Richard Lafayette MD","doi":"10.1016/j.semnephrol.2025.151572","DOIUrl":"10.1016/j.semnephrol.2025.151572","url":null,"abstract":"<div><div><span><span><span>IgA nephropathy (IgAN) is the most prevalent primary </span>glomerular disease<span><span> and has been recognized to carry a poor prognosis. It is therefore critical to identify the patients that will progress to ESKD and start treatments early. The current gold standard for diagnosis remains </span>kidney biopsy. Histopathologic findings along with </span></span>proteinuria<span>, glomerular filtration rate, and hypertension remain the best-validated biomarkers for prognosis but do not provide enough granularity to guide treatment decisions. The current understanding of the </span></span>pathophysiology<span><span> of IgAN with the four-hit hypothesis has helped identify potential additional biomarkers that could become available in the foreseeable future. In this review we detail the existing data for the most promising biomarkers including galactose-deficient IgA1 and its corresponding autoantibody, markers of complement activation<span>, as well as more nascent assays such as MicroRNAs, genomic, and </span></span>microbiome biomarkers.</span></div></div>","PeriodicalId":21756,"journal":{"name":"Seminars in nephrology","volume":"44 5","pages":"Article 151572"},"PeriodicalIF":3.5,"publicationDate":"2024-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143630896","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-05-01DOI: 10.1016/j.semnephrol.2024.151547
Amanda Sluiter MRMed , Anita van Zwieten PhD , Jenny I. Shen MD , Karine Manera PhD
Social functioning is a key aspect of daily life and is important to patients living with chronic kidney disease (CKD) and their caregivers. Many patients with CKD experience debilitating symptoms and treatment burden that can diminish their social functioning and thereby overall social health, which is the aspect of a person's well-being relating to their interactions and connections with others. In patients with CKD, symptoms (e.g., fatigue and pain), burden of ongoing treatments (including kidney replacement therapies), and medication side effects can impair social functioning. Having to manage responsibilities of self-management, which can include time-consuming and invasive treatments such as dialysis, can severely limit social functioning in patients with CKD. This can lead to poor social connections at many levels, including with family, friends, peers, and colleagues, and can hinder the development of new relationships. Patients with CKD with poorer social functioning have been reported to have worse quality of life and impaired mental health. Many patients with CKD rely on an informal caregiver—usually a family member or friend—to assist with management of their disease. This can place strain on the caregiver, further limiting opportunities for social connections for both the patient and caregiver. Although social functioning is critical for the overall well-being of patients with CKD, it remains underaddressed clinically, and patient-reported outcome measures (PROMs) to assess social functioning are limited. The objective of this article is to define social functioning, discuss the impacts of social functioning in patients with CKD and their caregivers, outline PROMs that have included assessment of social functioning, and discuss considerations in developing an appropriate PROM to measure social functioning in patients with CKD. This may help to inform the evaluation of interventions and care regarding social functioning within the CKD population.
{"title":"Measuring Social Functioning in Chronic Kidney Disease","authors":"Amanda Sluiter MRMed , Anita van Zwieten PhD , Jenny I. Shen MD , Karine Manera PhD","doi":"10.1016/j.semnephrol.2024.151547","DOIUrl":"10.1016/j.semnephrol.2024.151547","url":null,"abstract":"<div><div>Social functioning is a key aspect of daily life and is important to patients living with chronic kidney disease (CKD) and their caregivers. Many patients with CKD experience debilitating symptoms and treatment burden that can diminish their social functioning and thereby overall social health, which is the aspect of a person's well-being relating to their interactions and connections with others. In patients with CKD, symptoms (e.g., fatigue and pain), burden of ongoing treatments (including kidney replacement therapies), and medication side effects can impair social functioning. Having to manage responsibilities of self-management, which can include time-consuming and invasive treatments such as dialysis, can severely limit social functioning in patients with CKD. This can lead to poor social connections at many levels, including with family, friends, peers, and colleagues, and can hinder the development of new relationships. Patients with CKD with poorer social functioning have been reported to have worse quality of life and impaired mental health. Many patients with CKD rely on an informal caregiver—usually a family member or friend—to assist with management of their disease. This can place strain on the caregiver, further limiting opportunities for social connections for both the patient and caregiver. Although social functioning is critical for the overall well-being of patients with CKD, it remains underaddressed clinically, and patient-reported outcome measures (PROMs) to assess social functioning are limited. The objective of this article is to define social functioning, discuss the impacts of social functioning in patients with CKD and their caregivers, outline PROMs that have included assessment of social functioning, and discuss considerations in developing an appropriate PROM to measure social functioning in patients with CKD. This may help to inform the evaluation of interventions and care regarding social functioning within the CKD population.</div></div>","PeriodicalId":21756,"journal":{"name":"Seminars in nephrology","volume":"44 3","pages":"Article 151547"},"PeriodicalIF":2.8,"publicationDate":"2024-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142111919","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
The outcomes reported in trials across all stages of chronic kidney disease (CKD) are highly variable and often do not include outcomes that are directly relevant to patients and caregivers. Frequently, the outcomes reported in trials are often unvalidated surrogate biochemical end points. The omission of outcomes that are meaningful and important to patients can diminish the value of trials in supporting treatment decisions. In response, there have been increasing efforts across many health and medical disciplines to develop core outcome sets, defined as the minimum set of outcomes to be reported in all trials in a specific health area to improve the relevance and consistency of reporting trial outcomes. The international Standardized Outcomes in Nephrology (SONG) initiative was established in 2014 and has since developed seven core outcome sets for different diagnosis and treatment stages of CKD. The core outcomes were based on consensus among patients, caregivers, and health professionals. Each core outcome set includes at least one patient-reported outcome, including fatigue (hemodialysis), life participation (kidney transplantation, peritoneal dialysis, early CKD not yet requiring kidney replacement therapy, children and adolescents, and glomerular disease), and pain (polycystic kidney disease). This article outlines how patient-reported outcomes are currently reported in trials, discusses core patient-reported outcomes that have been established for trials in kidney disease, and outlines strategies for implementing core patient-reported outcomes in trials.
{"title":"Core Patient-Reported Outcomes for Trials in Nephrology","authors":"Anastasia Hughes BPH , Nicole Scholes-Robertson PhD , Angela Ju PhD , Allison Jauré PhD","doi":"10.1016/j.semnephrol.2024.151549","DOIUrl":"10.1016/j.semnephrol.2024.151549","url":null,"abstract":"<div><div>The outcomes reported in trials across all stages of chronic kidney disease (CKD) are highly variable and often do not include outcomes that are directly relevant to patients and caregivers. Frequently, the outcomes reported in trials are often unvalidated surrogate biochemical end points. The omission of outcomes that are meaningful and important to patients can diminish the value of trials in supporting treatment decisions. In response, there have been increasing efforts across many health and medical disciplines to develop core outcome sets, defined as the minimum set of outcomes to be reported in all trials in a specific health area to improve the relevance and consistency of reporting trial outcomes. The international Standardized Outcomes in Nephrology (SONG) initiative was established in 2014 and has since developed seven core outcome sets for different diagnosis and treatment stages of CKD. The core outcomes were based on consensus among patients, caregivers, and health professionals. Each core outcome set includes at least one patient-reported outcome, including fatigue (hemodialysis), life participation (kidney transplantation, peritoneal dialysis, early CKD not yet requiring kidney replacement therapy, children and adolescents, and glomerular disease), and pain (polycystic kidney disease). This article outlines how patient-reported outcomes are currently reported in trials, discusses core patient-reported outcomes that have been established for trials in kidney disease, and outlines strategies for implementing core patient-reported outcomes in trials.</div></div>","PeriodicalId":21756,"journal":{"name":"Seminars in nephrology","volume":"44 3","pages":"Article 151549"},"PeriodicalIF":2.8,"publicationDate":"2024-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142294950","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-05-01DOI: 10.1016/j.semnephrol.2024.151546
Sara N. Davison MD , Michelle M. Richardson PharmD , Glenda V. Roberts BSc
Many people across the spectrum of chronic kidney disease (CKD) experience a large symptom burden. Measuring symptoms can be a way of responding to the concerns of patients and their priorities of care and may help to improve overall outcomes, including health-related quality of life. The objective of this article is to discuss approaches to measuring symptoms across the spectrum of CKD and to highlight strategies to facilitate the incorporation of routine symptom assessment into kidney care. Specifically, we discuss the use of validated patient-reported outcome measures in CKD as they relate to measuring symptoms, including their benefits and limitations, and describe commonly used patient-reported outcome measures. We discuss potential barriers that should be considered when contemplating the development of a program to routinely measure and address symptoms. Finally, we outline a systematic, stepwise approach to measuring symptoms with implementation strategies to address the common barriers. Although the principles outlined in this article can be applied to research and audit, the principal focus is on symptom measurement aimed at informing clinical practice and directly improving patient outcomes.
{"title":"Measuring Symptoms Across the Spectrum of Chronic Kidney Disease: Strategies for Incorporation Into Kidney Care","authors":"Sara N. Davison MD , Michelle M. Richardson PharmD , Glenda V. Roberts BSc","doi":"10.1016/j.semnephrol.2024.151546","DOIUrl":"10.1016/j.semnephrol.2024.151546","url":null,"abstract":"<div><div>Many people across the spectrum of chronic kidney disease (CKD) experience a large symptom burden. Measuring symptoms can be a way of responding to the concerns of patients and their priorities of care and may help to improve overall outcomes, including health-related quality of life. The objective of this article is to discuss approaches to measuring symptoms across the spectrum of CKD and to highlight strategies to facilitate the incorporation of routine symptom assessment into kidney care. Specifically, we discuss the use of validated patient-reported outcome measures in CKD as they relate to measuring symptoms, including their benefits and limitations, and describe commonly used patient-reported outcome measures. We discuss potential barriers that should be considered when contemplating the development of a program to routinely measure and address symptoms. Finally, we outline a systematic, stepwise approach to measuring symptoms with implementation strategies to address the common barriers. Although the principles outlined in this article can be applied to research and audit, the principal focus is on symptom measurement aimed at informing clinical practice and directly improving patient outcomes.</div></div>","PeriodicalId":21756,"journal":{"name":"Seminars in nephrology","volume":"44 3","pages":"Article 151546"},"PeriodicalIF":2.8,"publicationDate":"2024-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142111920","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-05-01DOI: 10.1016/j.semnephrol.2024.151554
Chandana Guha MA , Colm O'Reilly MSc Epi , Javier Recabarren Silva PhD , Martin Howell PhD
The increasing burden of chronic kidney disease (CKD) on the health care system highlights the need to prioritize services and manage the use of resources efficiently. Amid these financial constraints, key decision makers must weigh the impact of an intervention or program on health care expenditure when determining the allocation of limited resources. Patient-reported outcome measures (PROMs) are relevant in health economic decision-making within nephrology. Health-related quality of life, a patient-reported outcome, can provide data that inform economic evaluations of treatments for patients with CKD. PROMs help determine the value of different therapies by assessing their impact on patients’ daily lives beyond clinical outcomes and can help policymakers make decisions about funding and reimbursement that consider the priorities and preferences of patients. Economic evaluations often employ cost-utility analyses, which use quality-adjusted life years as a key metric. Quality-adjusted life years combine both the quality and quantity of life lived, allowing for comparison of the effectiveness of different interventions in a standardized manner. By integrating utilities derived from PROMs, these analyses quantify the benefits of CKD treatments in terms of how patients feel and function. Furthermore, PROMs contribute to quality improvement initiatives by identifying areas where patient care can be enhanced, guiding the implementation of programs that improve health-related quality of life while maintaining cost-effectiveness. In value-based financing environments, the integration of PROMs ensures that patient-centered outcomes are prioritized, leading to more effective and equitable health care delivery. In this article, we discuss the role of PROMs in economic evaluations in CKD and provide an overview of approaches for using PROMs in economic evaluations to inform decision-making in nephrology.
{"title":"Navigating Choices in Nephrology: The Role of Patient-Reported Outcomes and Preferences in Economic Evaluations and Decisions in Health Care","authors":"Chandana Guha MA , Colm O'Reilly MSc Epi , Javier Recabarren Silva PhD , Martin Howell PhD","doi":"10.1016/j.semnephrol.2024.151554","DOIUrl":"10.1016/j.semnephrol.2024.151554","url":null,"abstract":"<div><div>The increasing burden of chronic kidney disease (CKD) on the health care system highlights the need to prioritize services and manage the use of resources efficiently. Amid these financial constraints, key decision makers must weigh the impact of an intervention or program on health care expenditure when determining the allocation of limited resources. Patient-reported outcome measures (PROMs) are relevant in health economic decision-making within nephrology. Health-related quality of life, a patient-reported outcome, can provide data that inform economic evaluations of treatments for patients with CKD. PROMs help determine the value of different therapies by assessing their impact on patients’ daily lives beyond clinical outcomes and can help policymakers make decisions about funding and reimbursement that consider the priorities and preferences of patients. Economic evaluations often employ cost-utility analyses, which use quality-adjusted life years as a key metric. Quality-adjusted life years combine both the quality and quantity of life lived, allowing for comparison of the effectiveness of different interventions in a standardized manner. By integrating utilities derived from PROMs, these analyses quantify the benefits of CKD treatments in terms of how patients feel and function. Furthermore, PROMs contribute to quality improvement initiatives by identifying areas where patient care can be enhanced, guiding the implementation of programs that improve health-related quality of life while maintaining cost-effectiveness. In value-based financing environments, the integration of PROMs ensures that patient-centered outcomes are prioritized, leading to more effective and equitable health care delivery. In this article, we discuss the role of PROMs in economic evaluations in CKD and provide an overview of approaches for using PROMs in economic evaluations to inform decision-making in nephrology.</div></div>","PeriodicalId":21756,"journal":{"name":"Seminars in nephrology","volume":"44 3","pages":"Article 151554"},"PeriodicalIF":2.8,"publicationDate":"2024-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142126626","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-05-01DOI: 10.1016/j.semnephrol.2024.151552
Sabine N. van der Veer PhD , Nicola E. Anderson PhD , Rob Finnigan MSc , Derek Kyte PhD
Kidney services worldwide are increasingly using digital health technologies to deliver care. This includes kidney electronic patient-reported outcome (ePRO) systems: ambulatory digital technologies that enable the capture of PRO data electronically from people with kidney disease remotely and in real time to be shared with their kidney care team. Current kidney ePRO systems commonly aim to support the monitoring and management of symptoms in patients with kidney disease. The majority have thus far only been implemented in research settings and are not yet routinely used in clinical practice, leaving their readiness for real-world implementation largely unknown. Compared with paper-based PRO collection, ePRO systems have certain advantages, which we categorize as efficiency benefits (e.g., lower administrative burden), direct patient care benefits (e.g., automated PRO-based patient education), and health system and research benefits (e.g., collecting ePRO data once for multiple purposes). At the same time, kidney ePRO systems come with drawbacks, such as their potential to exacerbate existing inequities in care and outcomes and to negatively affect staff burden and patients’ experience of kidney care. Areas that hold promise for expediting the development and uptake of kidney ePRO systems at the local, organizational, and national level include harnessing national kidney registries as enabling infrastructures; using novel data-driven technologies (e.g., computerized adaptive test systems, configurable dashboards); applying implementation science and action research approaches to enhance translation of ePRO research findings into clinical practice; and engaging stakeholders, including patients and carers, health care professionals, policymakers, payers, ePRO experts, technology providers, and organizations that monitor and improve the quality of kidney services.
全球肾脏服务机构正越来越多地使用数字医疗技术来提供医疗服务。其中包括肾脏电子患者报告结果（ePRO）系统：这是一种非住院的数字技术，能以电子方式远程实时采集肾病患者的PRO数据，并与肾脏护理团队共享。目前的肾病 ePRO 系统通常旨在支持对肾病患者症状的监测和管理。迄今为止，大多数系统仅在研究环境中实施，尚未在临床实践中常规使用，因此其是否能在现实世界中实施在很大程度上还是个未知数。与基于纸张的 PRO 收集相比，ePRO 系统具有一定的优势，我们将其归类为效率优势（如降低管理负担）、直接患者护理优势（如基于 PRO 的自动化患者教育）以及卫生系统和研究优势（如一次收集多种用途的 ePRO 数据）。与此同时，肾脏 ePRO 系统也存在一些缺点，例如可能会加剧现有的护理和治疗效果不平等现象，并对工作人员的负担和患者的肾脏护理体验产生负面影响。有希望在地方、组织和国家层面加快开发和采用肾脏 ePRO 系统的领域包括：利用国家肾脏登记处作为有利的基础设施；使用新颖的数据驱动技术（如计算机化自适应测试系统、可配置肾脏 ePRO 系统）、应用实施科学和行动研究方法，加强 ePRO 研究成果在临床实践中的转化；让利益相关者参与进来，包括患者和护理者、医疗保健专业人员、决策者、支付者、ePRO 专家、技术提供者以及监督和改善肾脏服务质量的组织。
{"title":"Electronic Collection of Patient-Reported Outcomes to Improve Kidney Care: Benefits, Drawbacks, and Next Steps","authors":"Sabine N. van der Veer PhD , Nicola E. Anderson PhD , Rob Finnigan MSc , Derek Kyte PhD","doi":"10.1016/j.semnephrol.2024.151552","DOIUrl":"10.1016/j.semnephrol.2024.151552","url":null,"abstract":"<div><div>Kidney services worldwide are increasingly using digital health technologies to deliver care. This includes kidney electronic patient-reported outcome (ePRO) systems: ambulatory digital technologies that enable the capture of PRO data electronically from people with kidney disease remotely and in real time to be shared with their kidney care team. Current kidney ePRO systems commonly aim to support the monitoring and management of symptoms in patients with kidney disease. The majority have thus far only been implemented in research settings and are not yet routinely used in clinical practice, leaving their readiness for real-world implementation largely unknown. Compared with paper-based PRO collection, ePRO systems have certain advantages, which we categorize as efficiency benefits (e.g., lower administrative burden), direct patient care benefits (e.g., automated PRO-based patient education), and health system and research benefits (e.g., collecting ePRO data once for multiple purposes). At the same time, kidney ePRO systems come with drawbacks, such as their potential to exacerbate existing inequities in care and outcomes and to negatively affect staff burden and patients’ experience of kidney care. Areas that hold promise for expediting the development and uptake of kidney ePRO systems at the local, organizational, and national level include harnessing national kidney registries as enabling infrastructures; using novel data-driven technologies (e.g., computerized adaptive test systems, configurable dashboards); applying implementation science and action research approaches to enhance translation of ePRO research findings into clinical practice; and engaging stakeholders, including patients and carers, health care professionals, policymakers, payers, ePRO experts, technology providers, and organizations that monitor and improve the quality of kidney services.</div></div>","PeriodicalId":21756,"journal":{"name":"Seminars in nephrology","volume":"44 3","pages":"Article 151552"},"PeriodicalIF":2.8,"publicationDate":"2024-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142009401","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-05-01DOI: 10.1016/j.semnephrol.2024.151548
Claire T. Lo MD , Anoop Sheshadri MD, MAS , Larry Edmonson , Devika Nair MD, MSCI
Person-centered care is a system of care delivery that supports effective patient-clinician communication and empowers patients to partner with their clinical providers to develop goal-concordant treatment plans. Models of person-centered care often involve the implementation of patient-reported outcomes (PROs) to measure patients’ symptoms and quality of life as they navigate complex chronic health conditions. Models of person-centered care have been particularly effective in improving the quality of care delivery for older adults as well as younger adults with aging-associated conditions such as physical function decline. Though PROs have been developed and validated in kidney disease, they are not routinely implemented in clinical practice. Most individuals with kidney disease are 65 and older, but many younger individuals with kidney disease also experience aging-associated conditions earlier than in the general population. Thus, PROs represent an important tool for achieving person-centered care in groups with kidney disease who are the most vulnerable to adverse health outcomes and excess health care utilization. In this article, we aim to move toward more routine implementation of PROs in kidney care for aging adults. To identify the most clinically relevant PROs for this group and understand the ideal mode and context in which to implement PROs, we will (1) provide an evidence-based summary of PROs with the greatest prognostic significance in the general population and in kidney disease, including those specific to older adults; (2) describe barriers to the implementation of PROs in kidney care with a special focus on the needs of older adults and younger adults with aging-associated conditions; and (3) conclude with our evidence-based recommendations for the content, time, and context in which PROs should be implemented to achieve person-centered kidney care for aging adults.
{"title":"Patient-Reported Outcomes to Achieve Person-Centered Care for Aging People With Kidney Disease","authors":"Claire T. Lo MD , Anoop Sheshadri MD, MAS , Larry Edmonson , Devika Nair MD, MSCI","doi":"10.1016/j.semnephrol.2024.151548","DOIUrl":"10.1016/j.semnephrol.2024.151548","url":null,"abstract":"<div><div>Person-centered care is a system of care delivery that supports effective patient-clinician communication and empowers patients to partner with their clinical providers to develop goal-concordant treatment plans. Models of person-centered care often involve the implementation of patient-reported outcomes (PROs) to measure patients’ symptoms and quality of life as they navigate complex chronic health conditions. Models of person-centered care have been particularly effective in improving the quality of care delivery for older adults as well as younger adults with aging-associated conditions such as physical function decline. Though PROs have been developed and validated in kidney disease, they are not routinely implemented in clinical practice. Most individuals with kidney disease are 65 and older, but many younger individuals with kidney disease also experience aging-associated conditions earlier than in the general population. Thus, PROs represent an important tool for achieving person-centered care in groups with kidney disease who are the most vulnerable to adverse health outcomes and excess health care utilization. In this article, we aim to move toward more routine implementation of PROs in kidney care for aging adults. To identify the most clinically relevant PROs for this group and understand the ideal mode and context in which to implement PROs, we will (1) provide an evidence-based summary of PROs with the greatest prognostic significance in the general population and in kidney disease, including those specific to older adults; (2) describe barriers to the implementation of PROs in kidney care with a special focus on the needs of older adults and younger adults with aging-associated conditions; and (3) conclude with our evidence-based recommendations for the content, time, and context in which PROs should be implemented to achieve person-centered kidney care for aging adults.</div></div>","PeriodicalId":21756,"journal":{"name":"Seminars in nephrology","volume":"44 3","pages":"Article 151548"},"PeriodicalIF":2.8,"publicationDate":"2024-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11456389/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142056468","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Risk, prevalence, management, and outcomes in chronic kidney disease (CKD) are influenced by social and broader determinants of health. Consequently, there are wide-ranging kidney health inequities. As patients are key stakeholders, their perspectives on the care they receive and on health status are central in guiding health system improvement, particularly to reduce the impact of disadvantage. Patient-reported experience measures (PREMs) and patient-reported outcome measures (PROMs) are important self-report tools in quality improvement, acting to guide initatives aimed at enhancing access to timely and relevant support. However, the extent to which PREMs and PROMs address the reduction of kidney health inequities is unclear. The aim of this review is to summarize how PREMs and PROMs are designed and implemented, highlighting key dimensions that are integral to health equity-oriented quality improvement in kidney care. There are several problems yet to be overcome so that such tools do not unintentionally reproduce kidney health gaps. Inclusive generation of the scope of tools, transparent reporting on attributes of patients who engage, and embedding PREMs and PROMs within a framework of value-based quality improvement is fundamental to their impact as part of equitable health system transformation.
{"title":"The Role of Patient-Reported Experience and Outcome Measures in Kidney Health Equity-Oriented Quality Improvement","authors":"Shivani Sharma BSc, PhD, CPsychol , Emily Beadle BSc, MSc, PhD , Emma Caton BSc, MSc , Ken Farrington BSc, MD, FRCP , Zoe Radnor BSc, MSc, PhD, FAcSS, FBAM","doi":"10.1016/j.semnephrol.2024.151553","DOIUrl":"10.1016/j.semnephrol.2024.151553","url":null,"abstract":"<div><div>Risk, prevalence, management, and outcomes in chronic kidney disease (CKD) are influenced by social and broader determinants of health. Consequently, there are wide-ranging kidney health inequities. As patients are key stakeholders, their perspectives on the care they receive and on health status are central in guiding health system improvement, particularly to reduce the impact of disadvantage. Patient-reported experience measures (PREMs) and patient-reported outcome measures (PROMs) are important self-report tools in quality improvement, acting to guide initatives aimed at enhancing access to timely and relevant support. However, the extent to which PREMs and PROMs address the reduction of kidney health inequities is unclear. The aim of this review is to summarize how PREMs and PROMs are designed and implemented, highlighting key dimensions that are integral to health equity-oriented quality improvement in kidney care. There are several problems yet to be overcome so that such tools do not unintentionally reproduce kidney health gaps. Inclusive generation of the scope of tools, transparent reporting on attributes of patients who engage, and embedding PREMs and PROMs within a framework of value-based quality improvement is fundamental to their impact as part of equitable health system transformation.</div></div>","PeriodicalId":21756,"journal":{"name":"Seminars in nephrology","volume":"44 3","pages":"Article 151553"},"PeriodicalIF":2.8,"publicationDate":"2024-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142111921","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
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