Dialysis decision-making process by Chinese American patients at an urban, academic medical center: a retrospective chart review.

BACKGROUND: Clinical practice guidelines emphasize shared decision-making for kidney replacement treatment, yet little is known about the influence of cultural differences on that process. We undertook a retrospective chart review to explore the process and timing of dialysis decision making and initiation in Chinese American patients to provide quality kidney care for this population. DESIGN: Participants received outpatient care at Tufts Medical Center and dialysis at Dialysis Clinic, Inc. Boston or Somerville, MA from 2001-2021. Clinic chart review sourced demographic, clinical, and end-of-life care information from 180 participants (82 Chinese American, 98 other) from stage 4 chronic kidney disease (CKD) and dialysis initiation. RESULTS: Chinese American participants were older (mean 70 vs. 59, p < 0.0001), less likely to speak English (12% vs. 87%, p < 0.0001), and used interpreter services more (80% vs. 11%, p < 0.0001). Chinese American participants had more visits (median 14 vs. 10, p = 0.005); were more often accompanied by family members (75% vs. 40%, p < 0.001); and had significantly lower rates of healthcare proxy documentation (35% vs. 55%, p = 0.006). There was no statistical difference in months between first CKD 4 visit and first dialysis. Both groups started dialysis at the same average eGFR and with similar rates of permanent dialysis access. Chinese American participants had significantly lower serum albumin at dialysis initiation (mean 3.3 g/dL vs 3.7 g/dL, p = 0.0003). Documentation reflected a low number of conversations about non-dialytic care, end-of-life planning, or palliative care in both groups across all visits. CONCLUSION: The time between CKD 4 and dialysis initiation was the same in both groups, suggesting a similar overall outcome of care. Chart documentation suggests that Chinese American participants had a significantly higher number of visits with nephrologists where discussion about dialysis was noted and were more likely to have a family member present at the visit. Fewer Chinese American participants completed healthcare proxies. Among all study participants, healthcare proxy, code status, and palliative care discussions were reported less frequently than expected. These findings highlight opportunities for collaboration between palliative care clinicians and nephrologists.

Seroresponse to Inactivated and Recombinant Influenza Vaccines Among Maintenance Hemodialysis Patients.

RATIONALE & OBJECTIVE: High-dose influenza vaccine provides better protection against influenza infection in older adults than standard-dose vaccine. We compared vaccine seroresponse among hemodialysis patients over a period of 4 months after administration of high-dose trivalent inactivated (HD-IIV3), standard-dose quadrivalent inactivated (SD-IIV4), or quadrivalent recombinant quadrivalent (RIV4) influenza vaccine. STUDY DESIGN: Prospective observational study. SETTING & PARTICIPANTS: Patients at 4 hemodialysis clinics who received influenza vaccine. EXPOSURE: Type of influenza vaccine. OUTCOME: Hemagglutination inhibition (HI) titers were measured at baseline and at 1, 2, 3, and 4 months after vaccination. The primary outcome was seroprotection rates at HI titers of at least 1:40 and at least 1:160 (antibody levels providing protection from infection in approximately 50% and 95% of immunocompetent individuals, respectively) at 1, 2, 3, and 4 months after vaccination. ANALYTICAL APPROACH: We calculated geometric mean titer as well as seroprotection and seroconversion rates. Adjusted generalized linear models with additional trend analyses were performed to evaluate the association between vaccine type and outcomes. RESULTS: 254 hemodialysis patients were vaccinated against influenza with HD-IIV3 (n = 141), SD-IIV4 (n = 36), or RIV4 (n = 77). A robust initial seroresponse to influenza A strains was observed after all 3 vaccines. Geometric mean titer and seroprotection (HI titer ≥1:160) rates against influenza A strains were higher and more sustained with HD-IIV3 than SD-IIV4 or RIV4. More than 80% of patients vaccinated with HD-IIV3 were seroprotected (HI titer ≥1:160) at month 4 (P < 0.001), whereas, among patients vaccinated with SD-IIV4 or RIV4, seroprotection rates were similar to those at baseline. Seroprotection rates were lower against B strains for all vaccines. LIMITATIONS: Because of the use of observational data, bias from unmeasured confounders may exist. Some age subgroups were small in number. Clinical outcome data were not available. CONCLUSIONS: Hemodialysis patients exhibited high seroprotection rates after all 3 influenza vaccines. The seroresponse waned more slowly with HD-IIV3 compared with SD-IIV4 and RIV4 vaccines.

Randomized Controlled Trials 3: Measurement and Analysis of Patient-Reported Outcomes.

The study of patient-reported outcomes, now common in clinical research, had its origins in social and scientific developments during the latter twentieth century. Patient-reported outcomes comprise functional and health status, health-related quality of life, and quality of life. The terms overlap and are used inconsistently, and these terms should be distinguished from expressions of preference regarding health states. Regulatory standards from the USA and European Union provide some guidance regarding reporting of patient-reported outcomes. Determining that patient-reported outcomes measurement is important depends in part on the balance between subjective and objective outcomes of the health problem under study. Instrument selection depends to a large extent on practical considerations. A number of instruments can be identified that are frequently used in particular clinical situations. The domain coverage of commonly used generic short forms varies substantially. Individualized measurement of quality of life is possible, but resource intensive. Focus groups are useful, not only for scale development but also to confirm the appropriateness of existing instruments.Under classical test theory, validity and reliability are the critical characteristics of tests. Under item response theory, validity remains central, but the focus moves from the reliability of scales to the relative levels of traits in individuals and items' relative difficulty. Plans for clinical studies should include an explicit model of the relationship of patient-reported outcomes to other parameters, as well as define the magnitude of difference in patient-reported outcomes that will be considered important. It is particularly important to minimize missing patient-reported outcome data; to a limited extent, a variety of statistical techniques can mitigate the consequences of missing data.

Long-term Clinical Outcomes Among Responders and Nonresponders to the In-Center Hemodialysis Consumer Assessment of Healthcare Providers and Systems (ICH CAHPS) Survey.

RATIONALE & OBJECTIVE: The In-Center Hemodialysis Consumer Assessment of Healthcare Providers and Systems (ICH CAHPS) survey, introduced into the End-Stage Renal Disease Quality Incentive Program, is the only patient-reported outcome currently used for value-based reimbursement in dialysis. Current response rates are ∼30% and differences in long-term clinical outcomes between survey responders and nonresponders are unknown. STUDY DESIGN: Retrospective cohort study. SETTING & PARTICIPANTS: Patients from all Dialysis Clinic Incorporated facilities from across the United States who met survey eligibility (aged ≥18 years and had been treated at their facility for at least 3 months). EXPOSURES: Patient-level demographic, clinical, and treatment-related characteristics. OUTCOMES: Mortality, all-cause hospitalization, and kidney transplantation. ANALYTICAL APPROACH: Time-to-event analyses using competing-risks models. Sensitivity analyses performed after multiple imputation for missing covariate data. RESULTS: Among 10,395 eligible patients, 3,794 (36%) responded to the survey. During a median follow-up of 33 months, 4,588 patients died, 7,638 patients were hospitalized at least once, and 789 patients received a transplant. In multivariable models, survey response was associated with lower mortality (subdistribution hazard ratio [sHR], 0.80; 95% CI, 0.75-0.86) and hospitalization (sHR, 0.94; 95% CI, 0.89-0.99) and higher likelihood for a kidney transplant (sHR, 1.27; 95% CI, 1.10-1.46). Results were consistent across sensitivity analyses after multiple imputation for missing covariates. LIMITATIONS: Small amount of missing covariate data, baseline covariate data assigned at the first month of the 3-month survey administration period, reasons for nonresponse unknown. CONCLUSIONS: Response to the ICH CAHPS survey is associated with lower risk for mortality and hospitalization and higher likelihood for kidney transplantation. These findings suggest that survey responders are healthier than nonresponders, emphasizing the need for caution when interpreting facility-level survey results to inform quality improvement and public policy efforts and the critical need to better capture patient-reported outcomes from more vulnerable patients.

Transfers to Hemodialysis Among US Patients Initiating Renal Replacement Therapy With Peritoneal Dialysis.

RATIONALE & OBJECTIVE: Identifying patients who are likely to transfer from peritoneal dialysis (PD) to hemodialysis (HD) before transition could improve their subsequent care. This study developed a prediction tool for transition from PD to HD. STUDY DESIGN: Retrospective cohort study. SETTING & PARTICIPANTS: Adults initiating PD between January 2008 and December 2011, followed up through June 2015, for whom data were available in the US Renal Data System (USRDS). PREDICTORS: Clinical characteristics at PD initiation and peritonitis claims. OUTCOMES: Transfer to HD, with the competing outcomes of death and kidney transplantation. ANALYTICAL APPROACH: Outcomes were ascertained from USRDS treatment history files. Subdistribution hazards (competing-risk) models were fit using clinical characteristics at PD initiation. A nomogram was developed to classify patient risk at 1, 2, 3, and 4 years. These data were used to generate quartiles of HD transfer risk; this quartile score was incorporated into a cause-specific hazards model that additionally included a time-dependent variable for peritonitis. RESULTS: 29,573 incident PD patients were followed up for a median of 21.6 (interquartile range, 9.0-42.3) months, during which 41.2% transferred to HD, 25.9% died, 17.1% underwent kidney transplantation, and the rest were followed up to the study end in June 2015. Claims for peritonitis were present in 11,733 (40.2%) patients. The proportion of patients still receiving PD decreased to <50% at 22.6 months and 14.2% at 5 years. Peritonitis was associated with a higher rate of HD transfer (HR, 1.82; 95% CI, 1.76-1.89; P < 0.001), as were higher quartile scores of HD transfer risk (HRs of 1.31 [95% CI, 1.25-1.37), 1.51 [95% CI, 1.45-1.58], and 1.78 [95% CI, 1.71-1.86] for quartiles 2, 3, and 4 compared to quartile 1 [P < 0.001 for all]). LIMITATIONS: Observational data, reliant on the Medical Evidence Report and Medicare claims. CONCLUSIONS: A large majority of the patients who initiated renal replacement therapy with PD discontinued this modality within 5 years. Transfer to HD was the most common outcome. Patient characteristics and comorbid diseases influenced the probability of HD transfer, death, and transplantation, as did episodes of peritonitis.

Improving CKD-Specific Patient-Reported Measures of Health-Related Quality of Life.

BACKGROUND: Patient-reported outcome measures that are more practical and clinically useful are needed for patients with CKD. We compared a new CKD-specific quality-of-life impact scale (CKD-QOL) with currently used measures. METHODS: Patients (n=485) in different treatment groups (nondialysis stages 3-5, on dialysis, or post-transplant) completed the kidney-specific CKD-QOL and Kidney Disease Quality of Life-36 (KDQOL-36) forms and the generic SF-12 Health Survey at baseline and 3 months. New items summarizing quality of life (QOL) impact attributed to CKD across six QOL domains yielded single impact scores from a six-item static (fixed-length) form and from computerized adaptive tests (CATs) with three to six items. Validity tests compared the CKD-QOL, KDQOL-36 (Burden, Effects, and Symptoms/Problems subscales), and generic SF-12 measures across groups in four tests of clinical status and clinician assessment of change (CKD-specific tests), and number of comorbidities. ANOVA was used to test for group mean differences, variances in each measure explained by groups, and relative validity (RV) in comparison with the referent KDQOL-36 Burden subscale. RESULTS: KDQOL-36 and CKD-QOL measures generally discriminated better than generic SF-12v2 measures. The pattern of variances across CKD-specific tests comparing validity favored CKD-QOL two-fold over KDQOL-36. Two RV test results confirmed CKD-QOL improvements over the referent KDQOL scale. Results for static and CAT CKD-QOL forms were similar. SF-12 Physical and KDQOL-36 Symptoms scores worsened with increasing comorbid condition counts. CONCLUSIONS: Overall, compared with the KDQOL-36, the new approach to summarizing CKD-specific QOL impact performed better across multiple tests of validity. CAT surveys were more efficient than static surveys.

Leading Integrated Kidney Care Entities of the Future.

The leaders of 20th century kidney failure treatment took chances; 21st century leaders of integrated kidney care must do the same. Some risks are clinical, some are organizational, and some are financial. Decent and constructive leadership entails humility. A working practitioner is a better leader. Effective leaders empower their employees and collaborators to lead and encourage them to work together. Integrated kidney care leadership supports exchange of ideas within and among organizations, uninhibited by competitive considerations. ESRD Seamless Care Organizations lead us toward the kidney care of the future; they will be strengthened by expansion to include patients who have advanced kidney disease not yet requiring renal replacement therapy and patients treated by transplant. Adjustment of reimbursement policy to realign incentives will be essential to the long-term success of care coordination. Population health management, with downside risk for participating organizations, is the future of integrated kidney care. Critical goals for integrated kidney care are to delay or avoid dialysis; increase use of home dialysis, transplantation, nondialytic care, and hospice; and to improve end of life care. It's about the patients, stupid.

Hemodialysis patient characteristics associated with better experience as measured by the In-center Hemodialysis Consumer Assessment of Healthcare Providers and Systems (ICH CAHPS) survey.

BACKGROUND: Patient experience in hemodialysis (HD) is measured twice yearly in all in-center HD patients in the United States using the In-Center Hemodialysis Consumer Assessment of Healthcare Providers and Systems (ICH CAHPS) survey. Survey scores are publically available and incorporated into the dialysis payment system. Despite its importance, little is known about factors associated with better experience scores. We studied the association between patient-level characteristics and experience scores in a large real-world cohort of HD patients. METHODS: This is a cross-sectional analysis of ICH CAHPS administration in 2012. All in-center HD patients in Dialysis Clinic, Incorporated facilities nationally over 18 years old and receiving HD at their facility for at least 3 months were eligible. Predictors include patient demographic, clinical, and treatment-related characteristics. Outcomes include high global rating scores across three domains (Nephrologist, Dialysis Staff, Dialysis Center) and high composite scores across three domains (Nephrologists' Communication and Caring, Quality of Dialysis Center Care and Operations, and Providing Information to Patients). RESULTS: Among 3369 respondents, older age and telephone (vs. mail) administration of the survey were associated with higher global ratings, while shortened HD treatments were associated with lower global ratings. Lower education and telephone administration were associated with higher composite scores, while older age, and shortened HD treatments were associated with lower composite scores. CONCLUSIONS: Several patient characteristics and mode of survey administration are associated with higher experience scores. Future research should assess HD facility characteristics associated with higher scores and interventions that might improve experience accounting for these associations.

Evaluation of non-response to the In-Center Hemodialysis Consumer Assessment of Healthcare Providers and Systems (ICH CAHPS) survey.

BACKGROUND: The In-Center Hemodialysis Consumer Assessment of Healthcare Providers and Systems (ICH CAHPS) Survey is the first patient reported outcome measure included in the U.S. Medicare End Stage Renal Disease Quality Incentive Program. Administered twice yearly, it assesses in-center dialysis experience and survey responses are tied to dialysis facility payments. Low response rates, currently approximately 35%, raise concern for possible underrepresentation of patient groups. METHODS: Cross-sectional analysis of survey administration in 2012 to all in-center hemodialysis patients in Dialysis Clinic, Inc. (DCI) facilities nationally over 18 years old who received hemodialysis at their facility for at least 3 months. Patient-level covariates included demographic, clinical, laboratory, and functional characteristics. Random effects multivariable logistic regression was used to assess survey non-response. RESULTS: Among 11,055 eligible patients 6541 (59%) were non-responders. Of the remaining 4514 responders, 549 (14%) surveys were not usable due to presence of proxy help or incomplete responses. Non-responders were more likely to be men, non-white, younger, single, dual Medicare/Medicaid eligible, less educated, non-English speaking, and not active on the transplant list; non-responders had longer ESRD vintage, lower body mass index, lower serum albumin, worse functional status, and more hospitalizations, missed treatments, and shortened treatments. Similar associations were found using more parsimonious multivariable analyses and after imputing missing data. CONCLUSIONS: Non-responders to the ICH CAHPS significantly differed from responders, broadly spanning individuals with fewer socioeconomic advantages and greater illness burden, raising limitations in interpreting facility survey results. Future research should assess reasons for non-response to improve ICH CAHPS generalizability and utility.

High-Dose Seasonal Influenza Vaccine in Patients Undergoing Dialysis.

BACKGROUND AND OBJECTIVES: High-dose influenza vaccine, which contains fourfold more antigen than standard dose, is associated with fewer cases of influenza and less influenza-related morbidity in the elderly general population. Whether the high-dose influenza vaccine benefits patients on dialysis, whose immune response to vaccination is less robust than that of healthy patients, is uncertain. DESIGN, SETTING, PARTICIPANTS, & MEASUREMENTS: We compared hospitalizations and deaths during the 2015-2016 and 2016-2017 influenza seasons by vaccine type (standard trivalent, standard quadrivalent, and high-dose trivalent influenza vaccine) administered within a national dialysis organization. The association of vaccine type with outcomes was estimated using Cox proportional hazards regression with adjustment for patient factors and "center effect." Analyses were stratified by age and dialysis modality. RESULTS: Between September 1 and December 31, 2015, standard dose trivalent, standard dose quadrivalent, and high-dose trivalent influenza vaccines were administered to 3057 (31%), 5981 (61%), and 805 (8%) patients, respectively. The adjusted rates of first hospitalizations by vaccine type during the influenza season were 8.43, 7.88, and 7.99 per 100 patient-months, respectively, and the adjusted rates of death were 1.00, 0.97, and 1.04, respectively. These differences were not significant. In 2016, 3614 (39%) received quadrivalent vaccine, and 5700 (61%) received high-dose trivalent vaccine. The adjusted rates of first hospitalization by vaccine type were 8.71 and 8.04 per 100 patient-months, respectively, and the adjusted rates of death were 0.98 and 1.02, respectively. Receipt of high dose was associated with a significant reduction in hospitalization (hazard ratio, 0.93; 95% confidence interval, 0.86 to 1.00; P=0.04); there was no significant association with death. There was no significant heterogeneity of either association by age group or dialysis modality. CONCLUSIONS: Receipt of high-dose compared with standard dose influenza vaccine in 2016-2017 was associated with lower rates of hospitalization in patients on dialysis, although that was not seen in 2015-2016.

Characterizing Approaches to Dialysis Decision Making with Older Adults: A Qualitative Study of Nephrologists.

BACKGROUND AND OBJECTIVES: Despite guidelines recommending shared decision making, nephrologists vary significantly in their approaches to discussing conservative management for kidney replacement therapy with older patients. Many older patients do not perceive dialysis initiation as a choice or receive sufficient information about conservative management for reasons incompletely understood. We examined how nephrologists' perceptions of key outcomes and successful versus failed treatment discussions shape their approach and characterized different models of decision making, patient engagement, and conservative management discussion. DESIGN, SETTING, PARTICIPANTS, & MEASUREMENTS: Our qualitative study used semistructured interviews with a sample of purposively sampled nephrologists. Interviews were conducted from June 2016 to May 2017 and continued until thematic saturation. Data were analyzed using typological and thematic analyses. RESULTS: Among 35 nephrologists from 18 practices, 20% were women, 66% had at least 10 years of nephrology experience, and 80% were from academic medical centers. Four distinct approaches to decision making emerged: paternalist, informative (patient led), interpretive (navigator), and institutionalist. Five themes characterized differences between these approaches, including patient autonomy, engagement and deliberation (disclosing all options, presenting options neutrally, eliciting patient values, and offering explicit treatment recommendation), influence of institutional norms, importance of clinical outcomes (e.g., survival and dialysis initiation), and physician role (educating patients, making decisions, pursuing active therapies, and managing symptoms). Paternalists and institutionalists viewed initiation of dialysis as a measure of success, whereas interpretive and informative nephrologists focused on patient engagement, quality of life, and aligning patient values with treatment. In this sample, only one third of providers presented conservative management to patients, all of whom followed either informative or interpretive approaches. The interpretive model best achieved shared decision making. CONCLUSIONS: Differences in nephrologists' perceptions of their role, patient autonomy, and successful versus unsuccessful encounters contribute to variation in decision making for patients with kidney disease.

Discussing Conservative Management With Older Patients With CKD: An Interview Study of Nephrologists.

BACKGROUND: Although dialysis may not provide a large survival benefit for older patients with kidney failure, few are informed about conservative management. Barriers and facilitators to discussions about conservative management and nephrologists' decisions to present the option of conservative management may vary within the nephrology provider community. STUDY DESIGN: Interview study of nephrologists. SETTING & PARTICIPANTS: National sample of US nephrologists sampled based on sex, years in practice, practice type, and region. METHODOLOGY: Qualitative semistructured interviews continued until thematic saturation. ANALYTICAL APPROACH: Thematic and narrative analysis of recorded and transcribed interviews. RESULTS: Among 35 semistructured interviews with nephrologists from 18 practices, 37% described routinely discussing conservative management ("early adopters"). 5 themes and related subthemes reflected issues that influence nephrologists' decisions to discuss conservative management and their approaches to these discussions: struggling to define nephrologists' roles (determining treatment, instilling hope, and improving patient symptoms), circumventing end-of-life conversations (contending with prognostic uncertainty, fearing emotional backlash, jeopardizing relationships, and tailoring information), confronting institutional barriers (time constraints, care coordination, incentives for dialysis, and discomfort with varied conservative management approaches), conservative management as "no care," and moral distress. Nephrologists' approaches to conservative management discussions were shaped by perceptions of their roles and by a common view of conservative management as no care. Their willingness to pursue conservative management was influenced by provider- and institutional-level barriers and experiences with older patients who regretted or had been harmed by dialysis (moral distress). Early adopters routinely discussed conservative management as a way of relieving moral distress, whereas others who were more selective in discussing conservative management experienced greater distress. LIMITATIONS: Participants' views are likely most transferable to large academic medical centers, due to oversampling of academic clinicians. CONCLUSIONS: Our findings clarify how moral distress serves as a catalyst for conservative management discussion and highlight points of intervention and mechanisms potentially underlying low conservative management use in the United States.

A Peer-to-Peer Mentoring Program for In-Center Hemodialysis: A Patient-Centered Quality Improvement Program.

A patient-centered quality improvement program implemented in one Virginia hemodialysis facility sought to determine if peer-to-peer (P2P) programs can assist patients on in-center hemodialysis with self-management and improve outcomes. Using a single-arm, repeatedmeasurement, quasi-experimental design, 46 patients participated in a four-month P2P intervention. Outcomes include knowledge, self-management behaviors, and psychosocial health indicators: self-efficacy, perceived social support, hemodialysis social support, and healthrelated quality of life (HRQoL). Physiological health indicators included missed and shortened treatments, arteriovenous fistula placement, interdialytic weight gain, serum phosphorus, and hospitalizations. Mentees demonstrated increased knowledge, self-efficacy, perceived social support, hemodialysis social support, and HRQoL. Missed treatments decreased. Mentors experienced increases in knowledge, self-management, and social support. A P2P mentoring program for in-center hemodialysis can benefit both mentees and mentors.