Seminars in nephrology最新文献

Patient experience is considered a pillar of high-quality care, integral to patient-centered care, but despite significant policy focus on patient-reported experience measures (PREMs), little is published regarding their development, use, or impact on clinical practice. In nephrology, PREMs are increasingly used in research to capture and quantify patients' perceptions of their experiences with health care services. It has been shown that a negative patient experience impacts patients' physical and psychological health, and a small but significant proportion of patients across a selection of settings report their experiences of health care as poor or suboptimal. Evidence of whether PREMs improve quality of care or support person-centered care in the clinical setting remains largely theoretical. Extensive effort has been invested to develop various PREMs for kidney services. Although little evidence linking PREM collection to meaningful change in delivery of care currently exists, work is underway. Early indications are that with the right facilitators, implementing PREMs in routine practice can help providers recognize where change is needed and galvanize transformation. The journey toward understanding the connection between PREM data and modifiable provider characteristics to target and enable change has started, but further evidence is needed. This article outlines the history of PREMs in nephrology and details their current use alongside implementation challenges. The use and benefits of PREMs are discussed before considering the evidence base for their impact on renal health care. Possible next steps for PREMs are suggested and best practices highlighted.

Incorporating the patient's perspective into the entire product life cycle of medical device development is paramount for ensuring patient-centric evaluation. By prioritizing patient-centric evaluation, medical device developers can better address patient needs and enhance the quality and effectiveness of health care solutions. Patient-reported outcomes (PROs), patient preference information (PPI), and qualitative inquiry are methodologies to incorporate and amplify the patient's voice. In nephrology, unlike in other clinical domains, the utilization of PROs, PPI, and qualitative inquiry in medical device development has been notably sparse. Consequently, a glaring absence of patient involvement in the development of devices leaves the impact of these devices on patient well-being and functionality largely unexplored. Many forward-thinking programs as well as Food and Drug Administration guidance on the use of PROs and PPI are effectively bringing PROs into nephrology device development. Many resources exist to help researchers select high-quality PROs. There are unique considerations for using PROs and PPI to support regulatory decision-making, including fit-for-purpose, concepts of interest, context of use, and least burdensome selection. The rapid evolution of patient-centric initiatives in nephrology will serve to ensure that medical devices meet the needs of people with kidney disease and improve the quality of care.

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.

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.

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. Semin Nephrol 36:x-xx © 20XX Elsevier Inc. All rights reserved.

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.

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. Semin Nephrol 36:x-xx © 20XX Elsevier Inc. All rights reserved.

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.