The Impact of COVID-19 on Patient, Family Member, and Stakeholder Research Engagement: Insights from the PREPARE NOW Study.

BACKGROUND: Little is known about the impact of COVID-19 on patient, family member, and stakeholder patient-centered outcomes research engagement. OBJECTIVE: To answer the research questions: (1) What is the impact of COVID-19 on the lives of patients with kidney disease and their families? (2) What is the impact of COVID-19 on research engagement for patient and family member research team members who are themselves at very high risk for poor COVID-19 outcomes? and (3) How can we help patients, family members, and stakeholder team members engage in research during COVID-19? DESIGN: We conducted virtual semi-structured interviews with patient and family member co-investigators and kidney disease stakeholders from the PREPARE NOW study during November 2020. The interview guide included questions about participants' experiences with the impact of COVID-19 on research engagement. PARTICIPANTS: Seven patient and family member co-investigators and eight kidney disease stakeholders involved in a kidney disease patient-centered outcomes research project participated in the interviews, data analysis, and writing this manuscript. APPROACH: We used a content analysis approach and identified the main themes using an inductive process. KEY RESULTS: Respondents reported three main ways that COVID-19 has impacted their lives: emotional impact, changing behaviors, and changes in health care delivery. The majority of respondents reported no negative impact of COVID-19 on their ability to engage in this research project. Suggestions for patient-centered outcomes research during COVID-19 and other emergencies include virtual research activities; active engagement; and promoting trust, honesty, transparency, and authenticity. CONCLUSIONS: COVID-19 has had a significant negative impact on patient, family member, and stakeholder research team members; however, this has not resulted in less research engagement. TRIAL REGISTRATION: Clinicaltrials.gov NCT02722382.

Techniques for Self-Cannulation.

Abstract.

A Paradigm Shift in Options, Education, and an Online Decision Aid: 'My Life, My Dialysis Choice'.

Dialysis options education in the United States for patients tends to focus on clinical aspects of ESRD treatment and on how each option is done. The non-profit Medical Education Institute (MEI) has developed an online, patient-centered dialysis decision aid that maps six dialysis options (peritoneal dialysis, standard incenter hemodialysis, conventional home hemodialysis, short daily hemodialysis, and nocturnal hemodialysis--incenter or at home) in four categories onto 24 different lifestyle and health values. This new free, non-commercial tool allows education to start with why an individual might want to choose a particular option, rather than how, a paradigm shift that may enable more effective options education.

Web-based kidney education: supporting patient self-management.

Connecting patients to appropriate information-and to each other for social support-can help them self-manage chronic kidney disease (CKD) more effectively. For CKD patients, the Internet offers a wealth of resources to meet many educational needs. Understanding the types of Internet sources CKD patients use today can help renal professionals point patients in the right direction. This article will briefly review the state of CKD patient education and social support in the United States, then outline types of Internet-based patient education, and review the value of each type for both education and social support.

Kidney Failure Patients' Perceptions and Definitions of Health: A Qualitative Study.

Rationale & Objective: Patients with kidney failure who have used multiple treatment modalities are a unique source of information for how different options may best fit their values. We aimed to understand how people interpret their health and kidney failure treatment experience to inform providers who facilitate shared decision-making conversations. Study Design: This qualitative, interpretive phenomenological study explores how patients with kidney failure interpret health throughout their treatment trajectory. Setting & Participants: We recruited a purposive sample of patients who had used 3 or more kidney failure treatment options, including transplant and dialysis from transplant clinics and online support groups, for semi-structured interviews. Eligible participants were over 18 and spoke English for a total of 7 current transplant, 10 current home dialysis, and 1 current in-center patient. Analytical Approach: A 6-step iterative process of data analysis occurred concurrently with data collection. Results: Half of the 18 participants were Black; 67% were women. Three interrelated themes emerged from interviews: ability to engage in meaningful activities; working for balance; and living in context. Participants evaluated health according to their ability to engage in meaningful activities while balancing their emotional and physical needs with their life goals. When their social and treatment environments supported their autonomy, participants also considered themselves healthy. Limitations: The inclusion of only English-speaking patients limits the transferability of findings. A longitudinal design, repeated interviews, observation, and dyadic interviews would increase the health care providers' understanding and interpretation of health. Conclusions: The themes demonstrated patients evaluated health based on ability to engage in meaningful activities while maintaining balance. The treatment context, particularly how health care providers responded to patients' physiological experience, autonomy, and power, influenced interpretation of patient treatment experiences. Integrating patient interpretations of health with quantitative measures of treatment effectiveness can help health care providers better partner with patients to provide effective care for kidney failure.

Shared Decision-Making for a Dialysis Modality.

The prevalence of kidney failure continues to rise globally. Dialysis is a treatment option for individuals with kidney failure; after the decision to initiate dialysis has been made, it is critical to involve individuals in the decision on which dialysis modality to choose. This review, based on evidence arising from the literature, examines the role of shared decision-making (SDM) in helping those with kidney failure to select a dialysis modality. SDM was found to lead to more people with kidney failure feeling satisfied with their choice of dialysis modality. Individuals with kidney failure must be cognizant that SDM is an active and iterative process, and their participation is essential for success in empowering them to make decisions on dialysis modality. The educational components of SDM must be easy to understand, high quality, unbiased, up to date, and targeted to the linguistic, educational, and cultural needs of the individual. All individuals with kidney failure should be encouraged to participate in SDM and should be involved in the design and implementation of SDM approaches.

Integrated Digital Health System Tools to Support Decision Making and Treatment Preparation in CKD: The PREPARE NOW Study.

RATIONALE & OBJECTIVE: Digital health system tools to support shared decision making and preparation for kidney replacement treatments for patients with chronic kidney disease (CKD) are needed. STUDY DESIGN: Descriptive study of the implementation of digital infrastructure to support a patient-centered health system intervention. SETTING & PARTICIPANTS: 4 CKD clinics within a large integrated health system. EXPOSURE: We developed an integrated suite of digital engagement tools to support patients' shared decision making and preparation for kidney failure treatments. Tools included an automated CKD patient registry and risk prediction algorithm within the electronic health record (EHR) to identify and prioritize patients in need of nurse case management to facilitate shared decision making and preparation for kidney replacement treatments, an electronic patient-facing values clarification tool, a tracking application to document patients' preparation for treatments, and an EHR work flow to broadcast patients' treatment preferences to all health care providers. OUTCOMES: Uptake and acceptability. ANALYTIC APPROACH: Mixed methods. RESULTS: From July 1, 2017, through June 30, 2018, the CKD registry identified 1,032 patients in 4 nephrology clinics, of whom 243 (24%) were identified as high risk for progressing to kidney failure within 2 years. Kidney Transitions Specialists enrolled 117 (48%) high-risk patients by the end of year 1. The values tool was completed by 30/33 (91%) patients who attended kidney modality education. Nurse case managers used the tracking application for 100% of patients to document 287 planning steps for kidney replacement therapy. Most (87%) high-risk patients had their preferred kidney replacement modality documented and displayed in the EHR. Nurse case managers reported that the tools facilitated their identification of patients needing support and their navigation activities. LIMITATIONS: Single institution, short duration. CONCLUSIONS: Digital health system tools facilitated rapid identification of patients needing shared and informed decision making and their preparation for kidney replacement treatments. FUNDING: This work was supported through a Patient-Centered Outcomes Research Institute (PCORI) Project Program Award (IHS-1409-20967). TRIAL REGISTRATION: ClinicalTrials.gov NCT02722382.

The new Medicare PPS and home dialysis.

Overall, we believe that bundling of payments to dialysis facilities is positive for home dialysis. The incentive for higher utilization of home therapies comes down to the fact that, with treatments for all modalities being paid at the same rate, providers will see that home modalities cost less than facility-based treatments. The adjustment for home training treatments is certainly helpful, but it is not incentive enough on its own. From our perspective, one of the biggest financial incentives for home dialysis and more frequent dialysis therapies is that these patients are statistically known to spend less time in the hospital, over time costing taxpayers and the ESRD Program less money. We will continue to encourage CMS to consider the overall cost implications of more frequent dialysis. We are hopeful that when hospitalization costs are accounted for, CMS will do even more to encourage the use of these modalities.

Changes in employment status prior to initiation of maintenance hemodialysis in the USA from 2006 to 2015.

BACKGROUND: Hemodialysis (HD) patients have high unemployment rates associated with higher mortality and poor quality of life. Changes in employment status prior to dialysis initiation may predict subsequent patient outcomes. We sought to examine US national trends in employment status prior to and at HD initiation, risk factors for job loss and their association with transplantation and mortality. METHODS: Employment was defined as working full-time or part-time for 496 989 patients initiating maintenance HD from 2006 to 2015. Associations between patient and dialysis facility characteristics and employment change were analyzed using multivariable logistic regression. Cox regression was used to assess job loss with mortality and transplantation. RESULTS: About 26% (n = 129 622) of patients were employed 6 months prior compared with 15% (n = 75 719) at HD initiation. Employment rates 6 months prior to HD initiation decreased from 29% in 2006 to 23% in 2014. Employed patients who maintained employment increased from 57% in 2006 to 64% in 2015. Patients who were older, female, Hispanic, Black, with more comorbidities or living in low-income zip codes were less likely to maintain employment. Facility characteristics associated with employment maintenance included nonprofit status, more stations, dialysis availability after 5 p.m. and home dialysis training. Patients maintaining employment during the 6 months prior to HD had lower mortality and higher transplantation rates than patients who became unemployed. CONCLUSIONS: Employment rates among HD patients are low and employment changes common during the 6 months prior to HD. Maintaining employment status was associated with key patient and facility characteristics, kidney transplantation and survival.

A qualitative analysis of patient-reported symptoms of anemia.

The objective of this study was to understand how patients with chronic kidney disease (CKD) who are on dialysis experience anemia. Methods included the re-analysis of interviews with patients with CKD on dialysis who became anemic. Transcripts were coded for symptoms or the impact of symptoms using ATLAS ti software. Patients indicated anemia was associated with decreased "energy" (79%), "tired" (76%), "shortness of breath" (72%), and "loss of strength"/"weakness" (66%). It was found that patients with CKD on dialysis indicated that anemia is associated with a symptom cluster indicating loss of energy. Anemia assessments should incorporate these words and concepts. This article provides an overview of the results of this study.

Intensive dialysis and pregnancy.

Pregnancy in women with end stage renal disease on renal replacement therapy is uncommon due to the physiologic changes associated with renal failure as well as the complexities and risk involved in managing these patients. As most of these women had long periods of illness with chronic kidney disease, the effects of their chronic illness together with the current societal trends to delay child bearing to a more advanced maternal age can hamper fertility. For those able to conceive, intensified hemodialysis (HD), through longer and/or more frequent dialysis sessions, offers improved maternal and neonatal outcomes. Intensified HD is most conveniently offered in the patient's home, where possible. This review expands the scope of the Implementing Hemodialysis in the Home website and associated supplement published previously in Hemodialysis International and includes information tailored to women of reproductive age. We describe the necessary counseling that women should receive before conception and before intensification of HD, and provide a detailed management strategy that includes nephrologic and obstetric care, should pregnancy occur.

Self-management in patients with end stage renal disease: exploring domains and dimensions.

The management and appropriate treatment of chronic disease are ongoing challenges in health care. As the population ages, the prevalence of chronic disease can be expected to increase. Since by definition there is no cure for chronic disease, controlling, minimizing, or managing its negative effects becomes a primary goal. In the self-management perspective, it is neither clinicians nor health care systems who must accomplish the bulk of chronic disease management but rather the patients themselves. Moreover, self-management has been shown to be associated with improved outcomes. Self-management is comprised of two domains: self-management of health care and self management of everyday life. Self-management of health care includes self-care activity, partnership in care, communication, self-care self-efficacy, and adherence. Self-management of everyday life entails achieving/maintaining "normality" in everyday roles and functioning. End stage renal disease (ESRD) is a chronic disease for which self-management is particularly relevant. Understanding the components of self-management may help patients and clinicians to embrace this approach, to enter the mutual relationship it requires, and to maximize positive outcomes for patients with ESRD.

Psychosocial aspects in home hemodialysis: a review.

Psychosocial aspects related to home hemodialysis (HD) play an important role in the success of home HD programs. Once patients commence HD at home, unique psychosocial issues related to patient and care partner burden can emerge. Proactive professional support, peer support, respite care, travel support, and financial support from the home HD health care team must be a priority for patient care. If the psychosocial aspects are not proactively addressed, patients receiving HD at home may return to in-center HD and the program may struggle as a result. This review provides a psychosocial guide for new start-up home HD programs.

Home hemodialysis needs you!

This special supplement of Hemodialysis International focuses on home hemodialysis (HD). It has been compiled by a group of international experts in home HD who were brought together throughout 2013-2014 to construct a home HD "manual." Drawing upon both the literature and their own extensive expertise, these experts have helped develop this supplement that now stands as an A-to-Z guide for any who may be unfamiliar or uncertain about how to establish and maintain a successful home HD program.