Dementia Care Among United States Dialysis Providers: A Mixed Methods Study Evaluating Clinician Comfort and Knowledge.

Rationale & Objective: Given the high burden of dementia in dialysis patients, the dialysis workforce needs to be prepared to provide high-quality, person-centered dementia care. We explored comfort with and knowledge of dementia among US dialysis care providers. Study Design: Web-based survey. Setting & Participants: Emails were sent to National Kidney Foundation and National Association of Nephrology Technicians/Technologists membership listservs (September 26, 2022-October 22, 2022). In total, 1,121 respondents had complete data for analysis (57%, 35-49 years; 62% female; 62%/22% White/African American) including 81 physicians, 61 advanced practice providers, 230 nurse managers, 260 nurses, 202 social workers, 195 dietitians, and 86 dialysis patient care technicians. Exposures: Provider role, age, tenure, self-reported gender, previous dementia training, and awareness of dementia guidance. Outcomes: Dementia Knowledge (assessed using Dementia Knowledge Assessment Scale [DKAS; score range, 0-25]). Analytic Approach: Characteristics of respondents, comfort with dementia care, and dementia knowledge were summarized and tabulated overall and by role. Robust regression was used to obtain coefficients confidence intervals for the associations between characteristics and DKAS scores, adjusting for role and tenure. Free-text responses to an open-ended question about treating patients with dementia or cognitive impairment were analyzed using thematic analysis. Results: Dementia knowledge among US dialysis providers may be limited (overall DKAS score = 17; range, 13-21 across roles), despite most reporting knowing when patients had dementia (97%) and receiving training in dementia care (62%). Further, training may be inadequate: those who reported receiving dementia training had lower DKAS scores than those who reported not receiving training (ß, -3.9; 95% CI, -4.4 to -3.4). Thematic analysis of open-ended responses suggested that the impact of dementia on dialysis care and management and treatment beyond dialysis care are challenging for providers. Limitations: Data were self-reported and limited information was gathered about quality, content, and timing of dementia training received. Conclusion: Many US dialysis care providers had suboptimal dementia knowledge, despite reporting being comfortable with providing dementia care and reporting they received prior training. Qualitative findings indicate complexity among providers regarding comfort with and knowledge of treating patients with cognitive impairment. Targeted training for the dialysis workforce in dementia knowledge and best practices for person-centered dementia care is warranted.

There is a high burden of mild cognitive impairment and dementia in the US in-center hemodialysis setting. Although the prevalence of dementia is increasing, little is known about the readiness for the interdisciplinary team to provide person-centered, dementia-friendly patient care. Examining data from a US web-based survey, we found that providers felt confident in knowing when a patient had cognitive impairment, but less than two-thirds reported receiving training about dementia. Further, those who received training about dementia or had awareness of dementia guidelines had lower scores for dementia knowledge. This information can be used to develop training and guidance for interdisciplinary team to reduce staff burden and improve quality of care for patients living with cognitive impairment.

Expanding the access to kidney transplantation: Strategies for kidney transplant programs.

Kidney transplantation is the most successful kidney replacement therapy available, resulting in improved recipient survival and societal cost savings. Yet, nearly 70 years after the first successful kidney transplant, there are still numerous barriers and untapped opportunities that constrain the access to transplant. The literature describing these barriers is extensive, but the practices and processes to solve them are less clear. Solutions must be multidisciplinary and be the product of strong partnerships among patients, their networks, health care providers, and transplant programs. Transparency in the referral, evaluation, and listing process as well as organ selection are paramount to build such partnerships. Providing early culturally congruent and patient-centered education as well as maximizing the use of local resources to facilitate the transplant work up should be prioritized. Every opportunity to facilitate pre-emptive kidney transplantation and living donation must be taken. Promoting the use of telemedicine and kidney paired donation as standards of care can positively impact the work up completion and maximize the chances of a living donor kidney transplant.

Patient Care Technician Staffing and Outcomes Among US Patients Receiving In-Center Hemodialysis.

Importance: Dialysis patient care technicians (PCTs) play a critical role in US in-center hemodialysis (HD) care, but little is known about the association of PCT staffing with patient outcomes at US HD facilities. Objective: To estimate the associations of in-center HD patient outcomes with facility-level PCT staffing. Design, Setting, and Participants: This was a retrospective cohort study, with data analysis performed from March 2023 to January 2024. Data on US patients with end-stage kidney disease and their treatment facilities were obtained from the US Renal Data System. Participants included patients (aged 18-100 years) initiating in-center HD between January 1, 2016, and December 31, 2018, who continued receiving in-center HD for 90 days or more and had data on PCT staffing at their initial treating HD facility. Exposure: Facility-level patient-to-PCT ratios (number of HD patients divided by the number of PCTs reported by the treating facility in the prior year), categorized into quartiles (highest quartile denotes the highest PCT burden). Main Outcomes and Measures: Patient-level outcomes included 1-year patient mortality, hospitalization, and transplantation. Associations of outcomes with quartile of patient-to-PCT ratio were estimated using incidence rate ratios (IRRs) from mixed-effects Poisson regression, with adjustment for patient demographics and clinical and facility factors. Results: A total of 236 126 patients (mean [SD] age, 63.1 [14.4] years; 135 952 [57.6%] male; 65 945 [27.9%] Black; 37 777 [16.0%] Hispanic; 153 637 [65.1%] White; 16 544 [7.0%] other race; 146 107 [61.9%] with diabetes) were included. After full adjustment, the highest vs lowest quartile of facility-level patient-to-PCT ratio was associated with a 7% higher rate of patient mortality (IRR, 1.07; 95% CI, 1.02-1.12), a 5% higher rate of hospitalization (IRR, 1.05; 95% CI, 1.02-1.08), an 8% lower rate of waitlisting (IRR, 0.92; 95% CI, 0.85-0.98), and a 20% lower rate of transplant (IRR, 0.80; 95% CI, 0.71-0.91). The highest vs lowest quartile of patient-to-PCT ratio was also associated with an 8% higher rate of sepsis-related hospitalization (IRR, 1.08; 95% CI, 1.03-1.14) and a 15% higher rate of vascular access-related hospitalization (IRR, 1.15; 95% CI, 1.03-1.28). Conclusions and Relevance: These findings suggest that initiation of treatment in facilities with the highest patient-to-PCT ratios may be associated with worse early mortality, hospitalization, and transplantation outcomes. These results support further investigation of the impact of US PCT staffing on patient safety and quality of US in-center HD care.

Patient Care Technician Staffing in US Hemodialysis Facilities: An Ecological Study.

Rationale & Objective: Technicians caring for patients receiving dialysis play a critical, frontline role in the care of patients receiving dialysis in the United States. We sought to provide a comprehensive description and identify correlates of US in-center hemodialysis facility patient care technician staffing patterns. Study Design: This was an ecological study. Setting & Participants: US facilities providing hemodialysis and reporting patient care technician staffing, identified using the US Renal Data System. Exposures: Geography, year, and facility characteristics, including aggregated patient characteristics. Outcomes: The study outcome was facility-reported patient-to-patient care technician ratio. Analytical Approach: We examined patient-to-patient care technician ratios by US state and over time and also estimated the differences in patient-to-patient care technician ratios associated with facility characteristics, using robust regression with adjustment for facility-level covariates. Results: The median patient-to-patient care technician ratio among 6,862 US facilities in 2019 was 9.9 (25th-75th percentiles, 8.2-12.0). Median 2019 patient-to-patient care technician ratios varied substantially by US state and region. There was an overall decline (from 10.6 to 9.9) in median patient-to-patient care technician ratios from 2004 to 2019, whereas the percentage of positions that were unfilled increased (from 2.8% to 3.5%). After adjustment, large dialysis organization status (ß, -0.42; 95% CI, -0.61 to -0.23) and larger facility size (ß, -0.51; 95% CI, -0.68 to -0.33) were associated with lower patient-to-patient care technician ratios. Higher patient-to-registered nurse (ß, 0.80; 95% CI, 0.65-0.94) and patient-to-social worker (ß, 0.53; 95% CI, 0.37-0.70) ratios, presence of licensed vocational nurses or licensed practical nurses at the clinic (ß, 0.83; 95% CI, 0.53-1.12), and location in a poverty area (ß, 0.29; 95% CI, 0.13-0.44) were all associated with higher patient-to-patient care technician ratios. Aggregated patient characteristics of patients treated at the facilities were generally not associated with patient-to-patient care technician ratio after adjustment. Limitations: Limited causal inference and potential shifts in staffing after 2019. Conclusions: US dialysis facilities vary considerably in their patient care technician staffing by geography, over time, and by various facility characteristics. Further investigation of US patient care technician staffing is warranted and could lead to better, more stable dialysis staffing, improved staff and patient satisfaction, and higher quality of care.

In the United States, patient care technicians play an important role in hemodialysis care. Although ongoing staffing shortages and turnover among other hemodialysis care providers have been described, little is known about US patient care technician staffing. Examining national data reported by dialysis facilities, we found variability in patient care technician staffing by geography, over time (with fewer patients per patient care technician in more recent years), and by various facility characteristics. This information can be used to target staff recruitment and retention interventions at facilities where patient care technician staffing may be more challenging.

Implementation of the ASCENT Trial to Improve Transplant Waitlisting Access.

Introduction: The Allocation System for changes in Equity in Kidney Transplantation (ASCENT) study was a hybrid type 1 trial of a multicomponent intervention among 655 US dialysis facilities with low kidney transplant waitlisting to educate staff and patients about kidney allocation system (KAS) changes and increase access to and reduce racial disparities in waitlisting. Intervention components included a staff webinar, patient and staff educational videos, and facility-specific feedback reports. Methods: Implementation outcomes were assessed using the Reach, Effectiveness, Adoption, Implementation, and Maintenance Framework. Postimplementation surveys were administered among intervention group facilities (n = 334); interviews were conducted with facility staff (n = 6). High implementation was defined as using 3 to 4 intervention components, low implementation as using 1 to 2 components, and nonimplementation as using no components. Results: A total of 331 (99%) facilities completed the survey; 57% were high implementers, 31% were low implementers, and 12% were nonimplementers. Waitlisting events were higher or similar among high versus low implementer facilities for incident and prevalent populations; for Black incident patients, the mean proportion waitlisted in low implementer facilities was 0.80% (95% confidence interval [CI]: 0.73-0.87) at baseline and 0.55% at 1-year (95% CI: 0.48-0.62) versus 0.83% (95% CI: 0.78-0.88) at baseline and 1.40% at 1-year (95% CI: 1.35-1.45) in high implementer facilities. Interviews revealed that the intervention helped facilities prioritize transplant education, but that intervention components were not uniformly shared. Conclusion: The findings provide important context to interpret ASCENT effectiveness results and identified key barriers and facilitators to consider for future modification and scale-up of multilevel, multicomponent interventions in dialysis settings.

Work Experiences of the Interdisciplinary Dialysis Workforce in the United States: A Cross-Sectional Survey.

INTRODUCTION: Suboptimal dialysis care may be in part due to staff issues such as job dissatisfaction, burnout, work overload, high staff turnover, and inconsistent training. Here, we leveraged data collected in a recent national survey to provide an initial, comprehensive description of current work experiences of US dialysis care providers. METHODS: We conducted a cross-sectional survey of 1,240 active US dialysis clinic staff members (physicians, advanced practice providers, nurse managers/clinic coordinators, nurses, social workers, dietitians, and patient care technicians), who were recruited via emails to society membership lists. Respondents were asked about a wide variety of work experiences, including job satisfaction, professional fulfillment, and burnout (Stanford Professional Fulfillment Index), work culture, experiences of hostility and violence, and self-reported medical errors. Responses were summarized overall and compared by clinic role. RESULTS: Most of the survey respondents, representing all 50 US states, were aged 35-49 years (58.3%) or ≥50 years (23.5%), female (60.7%), and white (59.8%; 23.1% black, and 10.0% Asian); 82.1% had been in their current role for at least 1 year. Most US dialysis staff responding to our survey reported being generally satisfied with their jobs (mean rating of 7.9 on 0-10 scale), but only 54.4% met criteria for professional fulfillment, and 32.8% met criteria for burnout, driven by high scores in the work exhaustion domain. Related issues, including high workloads, lack of respect (including experiences of violence and hostility), lack of autonomy, and suboptimal patient environments (in terms of both safety and patient centeredness), were commonly reported among dialysis care providers, although their prevalence often differed by provider type. CONCLUSION: Our results suggest that the dialysis workforce may be at a critical point. Preventing further staff burnout, which could lead to even greater staffing shortages and worse working conditions among those who continue to provide dialysis care, is essential.

Professional Fulfillment, Burnout, and Turnover Intention Among US Dialysis Patient Care Technicians: A National Survey.

RATIONALE & OBJECTIVE: High professional fulfillment and low burnout and staff turnover are necessary for a stable dialysis workforce. We explored professional fulfillment, burnout, and turnover intention among US dialysis patient care technicians (PCTs). STUDY DESIGN: Cross-sectional national survey. SETTING & PARTICIPANTS: National Association of Nephrology Technicians/Technologists (NANT) members in March-May 2022 (N=228; 42.6% aged 35-49 years, 83.9% female, 64.6% White, 85.3% non-Hispanic). EXPOSURE: Likert-scale items (range, 0-4) related to professional fulfillment and 2 domains of burnout (work exhaustion and interpersonal disengagement) and dichotomous items related to turnover intention. ANALYTICAL APPROACH: Summary statistics (percentages, means, medians) were calculated for individual items and average domain scores. Burnout was defined by combined work exhaustion and interpersonal disengagement scores of≥1.3 and professional fulfillment by a score≥3.0. RESULTS: Most respondents (72.8%) worked ≥40 hours per week. Overall scores for work exhaustion, interpersonal disengagement, and professional fulfillment (median [IQR]) were 2.3 (1.3-3.0), 1.0 (0.3-1.8), and 2.6 (2.0-3.2), respectively; 57.5% reported burnout, and 37.3% reported professional fulfillment. Important contributors to burnout and professional fulfillment included salary (66.5%), supervisor support (64.0%), respect from other dialysis staff (57.8%), sense of purpose about work (54.5%), and hours worked per week (52.9%). Only 52.6% reported that they plan to be working as a dialysis PCT in 3 years. Free text responses reinforced perceived excessive work burden and lack of respect. LIMITATIONS: Limited generalizability to all US dialysis PCTs. CONCLUSIONS: More than half of dialysis PCTs reported burnout, driven by work exhaustion; only about one-third reported professional fulfillment. Even among this relatively engaged group of dialysis PCTs, only half intended to continue working as PCTs. Because of the critical, frontline role of dialysis PCTs in the care of patient receiving in-center hemodialysis, strategies to improve morale and reduce turnover are imperative.

The ASCENT Intervention to Improve Access and Reduce Racial Inequalities in Kidney Waitlisting: A Randomized, Effectiveness-Implementation Trial.

BACKGROUND: The US kidney allocation system (KAS) changed in 2014, but dialysis facility staff (including nephrologists, social workers, nurse managers, and facility administrators) had low awareness of how this policy change could affect their patients' access to transplant. We assessed the effectiveness of a multicomponent and multilevel educational and outreach intervention targeting US dialysis facilities with low waitlisting, with a goal of increasing waitlisting and reducing Black versus White racial disparities in waitlisting. METHODS: The Allocation System Changes for Equity in Kidney Transplantation (ASCENT) study was a cluster-randomized, pragmatic, multilevel, effectiveness-implementation trial including 655 US dialysis facilities with low waitlisting, randomized to receive either the ASCENT intervention (a performance feedback report, a webinar, and staff and patient educational videos) or an educational brochure. Absolute and relative differences in coprimary outcomes (1-year waitlisting and racial differences in waitlisting) were reported among incident and prevalent patients. RESULTS: Among 56,332 prevalent patients, 1-year waitlisting decreased for patients in control facilities (2.72%-2.56%) and remained the same for patients in intervention facilities (2.68%-2.75%). However, the proportion of prevalent Black patients waitlisted in the ASCENT interventions increased from baseline to 1 year (2.52%-2.78%), whereas it remained the same for White patients in the ASCENT intervention facilities (2.66%-2.69%). Among incident patients in ASCENT facilities, 1-year waitlisting increased among Black patients (from 0.87% to 1.07%) but declined among White patients (from 1.54% to 1.27%). Significant racial disparities in waitlisting were observed at baseline, with incident Black patients in ASCENT facilities less likely to waitlist compared with White patients (adjusted odds ratio [aOR], 0.56; 95% confidence interval [CI], 0.35 to 0.92), but 1 year after the intervention, this racial disparity was attenuated (aOR, 0.84; 95% CI, 0.49 to 1.42). CONCLUSIONS: The ASCENT intervention may have a small effect on extending the reach of the new KAS policy by attenuating racial disparities in waitlisting among a population of US dialysis facilities with low waitlisting. CLINICAL TRIAL REGISTRY NAME AND REGISTRATION NUMBER: National Institutes of Health ( NCT02879812 ). PODCAST: This article contains a podcast at https://dts.podtrac.com/redirect.mp3/www.asn-online.org/media/podcast/CJASN/2023_03_08_CJN09760822.mp3.

Pain experiences among those living with hidradenitis suppurativa: a qualitative study.

BACKGROUND: Pain is rated by patients with hidradenitis suppurativa (HS) as the disease's most impactful symptom. HS therapies are often insufficient to control inflammatory disease activity and pain. A better understanding of patient experiences with pain may improve patient-provider relationships and help identify strategies for addressing HS pain. OBJECTIVES: This qualitative study sought to characterize lived pain experiences of those with HS. METHODS: English-speaking patients ≥ 18 years old with a dermatologist-confirmed diagnosis of HS and an average numerical rating scale pain score of ≥ 1 over the preceding week were recruited from a single academic medical centre in Atlanta, Georgia, USA. Semistructured interviews were conducted from November 2019 to March 2020 to explore participants' HS pain experiences and the subsequent impact on their lives. Thematic saturation was reached after interviewing 21 participants. Interviews were audio recorded, transcribed, and analysed using thematic analysis. RESULTS: Among 21 study participants, the median 7-day average pain score was 6 (interquartile range 3-7; scale ranges from 0 to 10, with 10 being most pain). Participants' descriptions of pain were consistent with nociceptive pain, neuropathic pain and itch. Pain impacted multiple life domains, including physical limitations (decreased mobility and impaired sleep), decreased psychological wellbeing (irritability, depression, loss of control, and difficulty communicating pain experiences) and impaired social relationships (social isolation, intimacy problems and difficulty fulfilling social responsibilities). Although participants reported chronic discomfort, acutely painful and unpredictable HS disease flares caused more distress and quality-of-life (QoL) burden. Participants frequently treated their pain without input from the medical team, sometimes with unsafe medication doses or combinations. Factors contributing to self-management of pain included difficulty accessing timely outpatient care during disease flares and fear of stigma from healthcare providers. CONCLUSIONS: When present, HS-related pain may impact not only physical wellbeing but also mental health and relationships. In addition to therapies that target the inflammatory disease burden, treating the symptom of pain may improve patients' QoL and wellbeing. Because patients with HS have difficulty explaining their pain, proactively asking them about pain may identify unmet needs, facilitate better pain control and improve QoL. Further, the influence of HS-related pain on numerous aspects of QoL suggests the need for multidisciplinary, patient-centred approaches to HS pain management.

Non-medical barriers in access to early steps of kidney transplantation in the United States - A scoping review.

BACKGROUND: In the United States (US), barriers in access to later steps in the kidney transplantation process (i.e. waitlisting) have been well documented. Barriers in access to earlier steps (i.e. referral and evaluation) are less well described due to the lack of national surveillance data. In this review, we summarize the available literature on non-medical barriers in access to kidney transplant referral and evaluation. METHODS: Following PRISMA guidelines, we conducted a scoping review of the literature through June 3, 2021. We included all studies (quantitative and qualitative) reporting on barriers to kidney transplant referral and evaluation in the US published from 1990 onwards in English and among adult end-stage kidney disease (ESKD) patients (PROSPERO registration number: CRD42014015027). We narratively synthesized results across studies. RESULTS: We retrieved information from 33 studies published from 1990 to 2021 (reporting data between 1990 and 2018). Most studies (n = 28, 85%) described barriers among patient populations, three (9%) among provider populations, and two (6%) included both patients and providers. Key barriers were identified across multiple levels and included patient- (e.g. demographic, socioeconomic, sociocultural, and knowledge), provider- (e.g. miscommunication, staff availability, provider perceptions and attitudes), and system- (e.g. geography, distance to care, healthcare logistics) level factors. CONCLUSIONS: A multi-pronged approach (e.g. targeted and systemwide interventions, and policy change) implemented at multiple levels of the healthcare system will be necessary to reduce identified barriers in access to early kidney transplant steps. Collection of national surveillance data on these early kidney transplant steps is also needed to enhance our understanding of barriers to referral and evaluation.

Donor Designation Among Mature Latinas and Lay Health Educators (Promotoras): A Mixed-Methods Study.

BACKGROUND: Despite positive public attitudes toward solid organ donation in the United States, some of the lowest rates of donor designation persist among older adults and Latinx populations. AIMS: To identify barriers and facilitators to organ donation and donor designation among lay health educators (promotoras) and mature Latina (50+ years). METHODS: An explanatory sequential mixed-method design was employed, with telephone surveys followed by focus group interviews, to assess and understand the nuances of organ donation and donor designation knowledge, attitudes, and practices among promotoras and mature Latinas in Chicago (IL), Philadelphia (PA), and San Antonio (TX). Descriptive statistics summarized quantitative survey data; thematic content analysis was performed on qualitative data. RESULTS: Twenty-nine promotoras and 45 mature Latina participated in both the surveys and focus groups (N = 74). Most participants (90%) had limited knowledge of organ donation but reported being "somewhat" or "strongly" in favor of donation (70%); 40.5% were registered donors. Participants lacked knowledge about the registration process and its legal standing and upheld concerns that registered donors would be vulnerable to organ traffickers or targets for murder. Themes emerging from the group interviews revealed additional barriers to designation including distrust of the medical establishment, perceptions of inequities in organ allocation, and family resistance to discussing death. DISCUSSION: Low donor designation rates are primarily driven by concerns about organ trafficking and the fairness of the allocation system, particularly for undocumented immigrants. CONCLUSIONS: The results informed development of a culturally targeted educational and communication skills intervention to increase donor designation in Latinx communities. TRIAL REGISTRATION: ClinicalTrials.gov NCT04007419.

Development of a decision support tool in pediatric Differences/Disorders of Sex Development.

Decisions about how best to clinically care for young children born with Disorders of Sex Development (DSD) can be challenging because some decisions are irreversible, have lasting physical and mental health effects, and are frequently made before the affected person is able to participate in decision-making. This multi-stage study involved (1) the development of a web-based decision support tool (DST) for parents of infants or young children and the clinicians caring for them; (2) the assessment of communications and decision making between DSD specialists and parents both before and after introduction of the DST; and (3) interviews with a broad range of stakeholders regarding optimizing the DST and integrating it into usual care. Experience over the course of the 3 stages of this research suggests the need for further refinement of the DST to increase acceptability to all stakeholder groups, the necessity to address misperceptions by providers that they are already accomplishing all aspects of SDM in regular care without a DST and misunderstandings by parents that decisions are unnecessary because only a single option is apparent, and to better incorporate the tool into regular clinic workflow.

Transplant Professionals' Perceptions of Long-Term Care Residents' Candidacy for Kidney Transplantation.

CONTEXT: Given the aging end-stage renal disease (ESRD) population, kidney transplant (KTx) centers may experience an increase in referrals of patients living in long-term care (LTC) settings (eg, skilled nursing facilities, assisted living facilities, group homes, and boarding homes). OBJECTIVE: To identify best practices among KTx professionals when considering individuals in LTC settings for transplantation. DESIGN AND SETTING: A cross-sectional survey administered online to US transplant professionals via e-mail LISTSERVs and other professional networks. PARTICIPANTS: One hundred twenty-six KTx professionals working in the United States. MAIN OUTCOME MEASURES: The survey was composed of demographic questions and 6 hypothetical scenarios. These scenarios asked participants to assess transplant candidacy of patients with ESRD living in LTC settings based on the information provided in the scenario. Each scenario presented a different variable that necessitated LTC placement, including lack of social support, moderate intellectual disability, stable neurological condition, mild dementia, a psychiatric condition controlled on medications, and limited mobility. RESULTS: The only scenario that elicited an overwhelmingly negative response was mild dementia with 73.9% of participants unwilling to consider such patients for KTx. By contrast, the proportion of KTx professionals reluctant to proceed with KTx in the remaining scenarios ranged between 40.0% and 50.6%. CONCLUSIONS: This survey of a large number of KTx professionals suggests that there is presently no best practice consensus regarding offering KTx to patients living in LTC settings. Further research should include a broader range of KTx professionals and should also include a study of outcomes with KTx in this particular patient population.