The experiences of people starting haemodialysis: A qualitative study.

BACKGROUND AND OBJECTIVE: Starting dialysis is a life-changing transition for people living with kidney disease. People feel overwhelmed with diet changes, medications and surgical interventions, and often experience high levels of anxiety, depression and hospital admissions. The objective of this study was to explore and describe the experiences and perspectives of people starting dialysis. STUDY DESIGN: Observational qualitative study using audio-recorded, individual, semi-structured interviews. PARTICIPANTS: We conducted 20 semi-structured interviews with English-speaking adults who were within 90 days of starting in-centre haemodialysis at centres of a nonprofit dialysis provider in Northern California. APPROACH: Trained qualitative researchers conducted interviews that were deidentified and transcribed verbatim before being inductively coded into codes, categories, and themes. RESULTS: Three overarching themes emerged from the interviews. Being overwhelmed when starting dialysis, realises the emotional unpreparedness of patients starting dialysis and how the centre's environment (waiting and treatment areas) and staff behaviour impact the dialysis start experience. Making sense of it all, covers how the patient's symptoms, behaviour, and dialysis-related experiences impact the dialysis start. Moving forward, describes how education informed optimal decision-making, and can provide hope for a longer and better life. LIMITATIONS: Predominantly college-educated participants were recruited from a single dialysis organisation which may limit the transferability of results. CONCLUSION: Understanding the life-changing experiences that patients encounter when starting dialysis assist dialysis clinicians to help patients adjust and develop long-term coping strategies.

Evaluation and Measurement Properties of a Patient-Reported Experience Measure for Home Dialysis.

BACKGROUND: No previously validated patient-reported experience measures exist for use among patients undergoing home dialysis. We tested the Home Dialysis Care Experience survey, a newly developed 26-item experience measure, among patients from 30 dialysis facilities in the United States. METHODS: Using mail and telephone survey modalities, we approached 1372 patients treated with peritoneal dialysis or home hemodialysis for participation. Using the results from completed surveys, we evaluated item calibration by assessing item floor and ceiling effects. We tested three sets of composite scores and used factor analysis to assess model fit for each. We evaluated associations of composite scores with global ratings and separately with patient and dialysis facility characteristics. Finally, we measured test-retest reliability in patients who completed the survey at two separate time points. RESULTS: Overall, 495 eligible patients completed at least one survey (response rate 36%). Of these, 49 completed the survey in Spanish and 61 completed a second survey within 30 days. We did not detect significant floor or ceiling effects, except for one item that demonstrated >90% responses at the top response option. Analyses supported one 12-item composite scale with high internal consistency reliability: Quality of Home Dialysis Care and Operations (Cronbach alpha=0.85). This scale strongly correlated with overall staff rating ( r =0.73) and overall center rating ( r =0.70). Patient demographic and dialysis facility characteristics were not consistently associated with composite scale scores or overall staff or center ratings. Intraclass correlation coefficients in the test-retest population were 0.74 for the Quality scale, 0.88 for overall staff rating, and 0.90 for overall center rating. CONCLUSIONS: The Home Dialysis Care Experience survey is a 26-item measure that includes one composite scale and two global rating scores and is an informative tool to evaluate patient experience of care for home dialysis.

Predicting transfer to haemodialysis using the peritoneal dialysis surprise question.

BACKGROUND: People on peritoneal dialysis (PD) at risk of transfer to haemodialysis (HD) need support to remain on PD or ensure a safe transition to HD. Simple point-of-care risk stratification tools are needed to direct limited dialysis centre resources. In this study, we evaluated the utility of collecting clinicians' identification of patients at high risk of transfer to HD using a single point of care question. METHODS: In this prospective observational study, we included 1275 patients undergoing PD in 35 home dialysis programmes. We modified the palliative care 'surprise question' (SQ) by asking the registered nurse and treating nephrologist: 'Would you be surprised if this patient transferred to HD in the next six months?' A 'yes' or 'no' answer indicated low and high risk, respectively. We subsequently followed patient outcomes for 6 months. Cox regression model estimated the hazard ratio (HR) of transfer to HD. RESULTS: Patients' mean age was 59 ± 16 years, 41% were female and the median PD vintage was 20 months (interquartile range: 9-40). Responses were received from nurses for 1123 patients, indicating 169 (15%) as high risk and 954 (85%) as low risk. Over the next 6 months, transfer to HD occurred in 18 (11%) versus 29 (3%) of the high and low-risk groups, respectively (HR: 3.92, 95% confidence interval (CI): 2.17-7.05). Nephrologist responses were obtained for 692 patients, with 118 (17%) and 574 (83%) identified as high and low risk, respectively. Transfer to HD was observed in 14 (12%) of the high-risk group and 14 (2%) of the low-risk group (HR: 5.56, 95% CI: 2.65-11.67). Patients in the high-risk group experienced higher rates of death and hospitalisation than low-risk patients, with peritonitis events being similar between the two groups. CONCLUSIONS: The PDSQ is a simple point of care tool that can help identify patients at high risk of transfer to HD and other poor clinical outcomes.

Patient Activation Among Prevalent Hemodialysis Patients: An Observational Cross-Sectional Study.

Patient activation is the product of knowledge, skills, and confidence that enables a person to manage their own healthcare. It is associated with healthy behaviors and improved patient outcomes. We surveyed prevalent hemodialysis (HD) patients at 10 centers using the Patient Activation Measure 13-item instrument (PAM-13). Activation was reported as scores (0-100) and corresponding levels (1-4). Of 1149 eligible patients, surveys were completed by 925 patients (92% response rate). Mean age was 62 ± 14 years, 40% were female, median vintage was 41 (IQR 19-77) months, and 66% had diabetes. Mean PAM score was 56 ± 13, with 14%, 50%, 25%, and 10% in levels 1 to 4, respectively. In adjusted analysis, older age and having diabetes were associated with lower activation, whereas higher educational levels and female gender were associated with higher scores. Significant variation in activation was observed among participants from different centers even after adjustment for other variables. In conclusion, low activation is common among prevalent HD patients.

The Implementation of a Virtual Home Dialysis Mentoring Program for Nephrologists.

Virtual home dialysis physician mentorship is feasible.In total, 53% of participants perceived the program would change the perspective of participants on prescribing home dialysis.More research is needed to ascertain the effect of virtual mentorship on home dialysis incidence and attrition rates in a wider audience.

Changes in patient activation in people starting dialysis: A prospective longitudinal, observational study.

INTRODUCTION: Increased patient activation is associated with improved health outcomes; however, little is known about patient activation in people with end-stage kidney disease at the start of their dialysis journey. This study aimed to measure activation status changes over the first 4 months of dialysis. METHODS: Prospective, longitudinal, and observational study. Incident patients initiating dialysis at 25 in-center hemodialysis and 17 home dialysis programs across three US states managed by the same dialysis provider completed the 13-item Patient Activation Measure (PAM-13) survey at baseline (month 1 after commencement of dialysis) and follow-up (month 4). The survey yields a score (0-100) that corresponds to four levels (1-4), with higher scores or levels indicating higher activation. FINDINGS: One hundred eighty-two participants (139 center, 43 home) completed both baseline and follow-up surveys. Mean age was 60 ± 15 years, 40% female. Mean PAM-13 scores were 65.1 ± 16.8 and 64.8 ± 17.8 at baseline and follow-up, respectively; mean intraindividual change: -0.3 ± 17.3. The proportions of patients at levels 1-4 at baseline were 11%, 23%, 35%, and 31% respectively. At follow-up, 50%, 64%, 52%, and 37% of participants at levels 1-4, respectively, changed to a different PAM level (Spearman correlation = 0.47; p < 0.001). Home dialysis was associated with higher PAM scores when compared to in-center hemodialysis in multivariable analyses, adjusted for sociodemographic variables, comorbidities, and predialysis nephrology care (ß = 5.74, 95% confidence intervals [CI]: 0.11-11.37 and 9.02, 95% CI: 3.03-15.02, at baseline and follow-up, respectively). DISCUSSION: Although aggregated group scores and levels remained stable, intra-individual patient activation changed significantly during the first 4 months of dialysis. This novel finding is foundational to future projects aiming to design interventions to improve patient activation.

Integrating Patient Activation Into Dialysis Care.

Patient activation, the measure of patients' readiness and willingness to manage their own health care, is low among people receiving in-center hemodialysis, which is exacerbated because such centers are commonly set up for patients to passively receive care. In our pursuit of person-centered care and value-based medicine, enabling patients to take a more active role in their care can lead to healthy behaviors, with subsequent reductions in individual burden and costs to the health care system. To improve patient activation, we need to embrace a patient-first approach and combine it with ways to equip patients to thrive with self-management. This requires changes in the training of the health care team as well as changes in care delivery models, promoting interventions such as health coaching and peer mentoring, while leveraging technology to enable self-access to records, self-monitoring, and communication with providers. We also need health care policies that encourage a focus on patient-identified goals, including more attention to patient-reported outcomes. In this article, we review the current status of patient activation in dialysis patients, outline some of the available interventions, and propose steps to change the dynamics of the current system to move toward a more active role for patients in their care.

Innovations to Increase Home Hemodialysis Utilization: The Transitional Care Unit.

A large proportion of patients undergoing incident dialysis start in-center hemodialysis with suboptimal preparation and predialysis education. Transitional care units deliver a structured program by dedicated staff, with less patient-to-staff ratios than in regular in-center dialysis care, with the goals of supporting the emotional and physical well-being of patients while providing them with education and equipping them with the right tools to start their journey on dialysis. Key components of these programs include an emphasis on patient activation and self-management, educating and supporting patients to make informed modality choices, timely coordination of care, and an integrated approach to formation and use of the dialysis access. While data are still limited on best practices and on outcomes of these programs at a large scale, endorsing the model of transitional care units is a step in the right direction to fill the gap in our current care system.

COVID19 vaccine type and humoral immune response in patients receiving dialysis.

Background: Patients on dialysis vaccinated with the attenuated adenovirus SARS-CoV-2 vaccine might mount an impaired response to vaccination. Methods: We evaluated the humoral vaccination response among 2,099 fully vaccinated patients receiving dialysis. We used commercially available assays (Siemens) to assess prevalence of no response or diminished response to COVID-19 vaccination by vaccine type. We defined "no seroconversion" as lack of change from negative to positive in total RBD Ig antibody, no detectable response on semiquantitative RBD IgG antibody (index value <1) as "no RBD IgG response", and a semiquantitative RBD IgG index value <10 as "diminished RBD IgG response". Results: Of the 2,099 fully vaccinated patients on dialysis, the proportion receiving the mRNA1273, BNT162b2, and Ad26.COV2.S were 62% (n=1316), 20% (n=416) and 18% (n=367), respectively. A third (33.3%) of patients receiving the attenuated adenovirus Ad26.COV2.S vaccine failed to seroconvert and an additional 36% had no detectable or diminished IgG response even 28-60 days post vaccination. Conclusion: One in three fully vaccinated patients receiving dialysis had evidence of an impaired immune response to the attenuated adenovirus Ad26.COV2.S vaccine.

The use of virtual physician mentoring to enhance home dialysis knowledge and uptake.

Home dialysis therapies are flexible kidney replacement strategies with documented clinical benefits. While the incidence of end-stage kidney disease continues to increase globally, the use of home dialysis remains low in most developed countries. Multiple barriers to providing home dialysis have been noted in the published literature. Among known challenges, gaps in clinician knowledge are potentially addressable with a focused education strategy. Recent national surveys in the United States and Australia have highlighted the need for enhanced home dialysis knowledge especially among nephrologists who have recently completed training. Traditional in-person continuing professional educational programmes have had modest success in promoting home dialysis and are limited by scale and the present global COVID-19 pandemic. We hypothesize that the use of a 'Hub and Spoke' model of virtual home dialysis mentorship for nephrologists based on project ECHO would support home dialysis growth. We review the home dialysis literature, known educational gaps and plausible educational interventions to address current limitations in physician education.

Use of a gentamicin-citrate lock leads to lower catheter-related bloodstream infection rates and reduced cost of care in hemodialysis patients.

INTRODUCTION: Central venous catheters (CVC) are a major contributor to infections in hemodialysis (HD) patients, leading to high morbidity and mortality. Gentamicin-citrate (GC) lock is used as standard of care at centers belonging to a mid-size dialysis organization. Four outpatient HD centers acquired by the organization continued to use heparin for catheter locks for a period of time before converting to the provider's standard of using GC lock. METHODS: In this retrospective observational study, we included patients receiving HD by CVC at these four centers. We report rates of CVC-related bloodstream infections (CVC-BSI) during the heparin lock and the GC lock periods; crude rate ratios and adjusted rate ratios using Cox survival analyses adjusting for potential confounders; microbiology patterns; safety signals (gentamicin resistance, hospitalizations and deaths); and financial impact on payer. FINDINGS: A total of 220 and 281 patients used tunneled CVCs, accounting for 25,245 and 44,550 catheter days in the heparin and the GC lock periods, respectively. CVC-BSI event rates were 66% lower in the GC lock period (CVC-BSI event rate: 0.20 per 1000 catheter-days) than the heparin lock period (rate: 0.59 per 1000 catheter days); rate ratio 0.34 (95% confidence interval (CI) 0.15-0.78, P = 0.01). In the fully adjusted multivariable Cox model, use of GC lock was associated with 70% reduction in CVC-BSI events (HR 0.30, 95% CI 0.12-0.72, P = 0.01). No increased risk of gentamicin resistance, hospitalizations, or death associated with use of GC lock were observed. Use of GC lock was associated with an estimated saving of $1533 (95% CI: $259-$4882) per patient per year. DISCUSSION: Use of GC lock led to significant reductions in CVC-BSIs with no signal for harm, and is associated with significant cost savings in dialysis care.

Outcomes Among Patients With Left Ventricular Assist Devices Receiving Maintenance Outpatient Hemodialysis: A Case Series.

RATIONALE & OBJECTIVE: The incidence of left ventricular assist device (LVAD) implantation as destination therapy for heart failure is increasing and kidney failure requiring maintenance hemodialysis is a common complication. Because little is known about the safety or efficacy of outpatient hemodialysis among patients with LVADs, this study sought to describe their clinical course. STUDY DESIGN: Case series of patients with an LVAD undergoing maintenance outpatient hemodialysis whose clinical data were obtained from an electronic medical record. SETTING & PARTICIPANTS: Adults who received an LVAD, survived to hospital discharge, and were subsequently treated with maintenance hemodialysis by a not-for-profit dialysis provider between 2011 and 2019. RESULTS: 11 patients were included. 6 had a known history of chronic kidney disease. Patients underwent outpatient hemodialysis for a mean duration of 165.2 (range, 31-542) days, during which they were treated with 544 total dialysis sessions. 6 of these sessions were stopped early due to dialysis-related adverse events (1.1%). More than 80% of follow-up time was spent out of the hospital; however, 55% of patients were rehospitalized within 1 month of starting outpatient hemodialysis. The most common reason for hospitalization was infection (32%), followed by hypervolemia (14%), and cerebrovascular accident or transient ischemic attack (11%). 4 patients recovered kidney function, 1 underwent combined heart and kidney transplantation, 2 continued treatment, 2 died, and 2 were lost to follow-up. LIMITATIONS: Retrospective design, small number of cases, and lack of complete follow-up data. CONCLUSIONS: Approximately half the patients with complete follow-up either recovered kidney function or underwent combined heart and kidney transplantation. This case series demonstrates that outpatient hemodialysis centers, in partnership with LVAD treatment teams, can successfully provide hemodialysis to patients on LVAD support.

The Mobile Health Readiness of People Receiving In-Center Hemodialysis and Home Dialysis.

BACKGROUND AND OBJECTIVES: Mobile health is the health care use of mobile devices, such as smartphones. Mobile health readiness is a prerequisite to successful implementation of mobile health programs. The aim of this study was to examine the status and correlates of mobile health readiness among individuals on dialysis. DESIGN, SETTING, PARTICIPANTS, & MEASUREMENTS: A cross-sectional 30-item questionnaire guided by the Khatun mobile health readiness conceptual model was distributed to individuals on dialysis from 21 in-center hemodialysis facilities and 14 home dialysis centers. The survey assessed the availability of devices and the internet, proficiency, and interest in using mobile health. RESULTS: In total, 949 patients (632 hemodialysis and 317 home dialysis) completed the survey. Of those, 81% owned smartphones or other internet-capable devices, and 72% reported using the internet. The majority (70%) reported intermediate or advanced mobile health proficiency. The main reasons for using mobile health were appointments (56%), communication with health care personnel (56%), and laboratory results (55%). The main reported concerns with mobile health were privacy and security (18%). Mobile health proficiency was lower in older patients: compared with the 45- to 60-years group, respondents in age groups <45, 61-70, and >70 years had adjusted odds ratios of 5.04 (95% confidence interval, 2.23 to 11.38), 0.39 (95% confidence interval, 0.24 to 0.62), and 0.22 (95% confidence interval, 0.14 to 0.35), respectively. Proficiency was lower in participants with Hispanic/Latinx ethnicity (adjusted odds ratio, 0.49; 95% confidence interval, 0.31 to 0.75) and with less than college education (adjusted odds ratio for "below high school," 0.09; 95% confidence interval, 0.05 to 0.16 and adjusted odds ratio for "high school only," 0.26; 95% confidence interval, 0.18 to 0.39). Employment was associated with higher proficiency (adjusted odds ratio, 2.26; 95% confidence interval, 1.18 to 4.32). Although home dialysis was associated with higher proficiency in the unadjusted analyses, we did not observe this association after adjustment for other factors. CONCLUSIONS: The majority of patients on dialysis surveyed were ready for, and proficient in, mobile health. CLINICAL TRIAL REGISTRY NAME AND REGISTRATION NUMBER DIALYSIS MHEALTH SURVEY,: NCT04177277.