Measuring and explaining racial and ethnic differences in willingness to donate live kidneys in the United States.

BACKGROUND: Reasons for US racial-ethnic minority ESRD patients' reported difficulties identifying live kidney donors are poorly understood. METHODS: We conducted a national study to develop scales measuring willingness to donate live kidneys among US adults (scores ranged from 0 [not willing] to 10 [extremely willing]), and we tested whether racial-ethnic differences exist in willingness to donate. We also examined whether clinical, sociodemographic, and attitudinal factors mediated potential racial-ethnic differences in willingness. RESULTS: Among 845 participants, the majority were extremely willing to donate to relatives (77%) while fewer than half were extremely willing to donate to non-relatives (18%). In multivariable linear regression analyses, willingness to donate varied by race-ethnicity and recipient relationship to the donor. African Americans were less willing to donate to relatives than whites (ß: -0.48; 95% CI [Confidence Interval]: -0.94 to -0.17; p = 0.04), but these differences were eliminated after accounting for socioeconomic factors, medical trust, and concerns about burial after death. There were no differences in willingness to donate between Hispanics and whites. CONCLUSIONS: African Americans' burial concerns, medical trust, and socioeconomic factors explained differences in their willingness to donate to relatives, suggesting efforts to address these barriers may enhance rates of live kidney donation in this group.

Willingness of the United States general public to participate in kidney paired donation.

BACKGROUND: Availability of kidney paired donation (KPD) is increasing in the United States, and a national system through UNOS is forthcoming. However, little is known about attitudes toward KPD among the general public, from which donors (particularly non-directed) are drawn. METHODS: In a national study, we assessed the public's attitudes regarding participation in KPD. RESULTS: Among 845 randomly selected participants, 85.2% of respondents were either "extremely willing" or "very willing" to participate in KPD. Experiences with the medical or organ transplant systems, such as undergoing surgery, having a primary medical provider, a living will, a friend who donated or received an organ, and considering donation after death, were associated with increased willingness. However, increased age, male sex, African American race, Hispanic ethnicity, distrust of the medical system, and not understanding organ allocation were associated with less willingness. CONCLUSIONS: We identify strong support for KPD but some important potential barriers to participation which should be considered as KPD programs are implemented.

Identifying and addressing barriers to African American and non-African American families' discussions about preemptive living related kidney transplantation.

CONTEXT: Ethnic/racial minority and nonminority families' perceived barriers to discussing preemptive living related kidney transplantation (LRKT) and their views on the potential value of health care professionals trained to address barriers are unknown. OBJECTIVE, SETTING, AND PARTICIPANTS: To collect pilot data for evaluating perceived barriers to preemptive LRKT and to inform the development of a culturally sensitive intervention to improve families' consideration of LRKT. In 4 structured group interviews of African American and non-African American patients (2 groups) with progressing chronic kidney disease and their family members (2 groups), participants' perceived barriers to initiating LRKT discussions and their views regarding the value of social workers to support discussions were explored. RESULTS: Patients' barriers included concerns about their (1) ability to initiate discussions, (2) discussions being misinterpreted as donation requests, (3) potential burdening of family members, (4) uncertainty about when to initiate discussions, and (5) inducing guilt or coercing family members. Family members' barriers included (1) feeling overwhelmed by patients' illness, (2) patients' denial about their illness, (3) caregiver stress, and (4) uncertainty about their own health or the health of other family members who might donate or need a kidney in the future. Participants reported that social workers could facilitate difficult or awkward discussions and help families understand the LRKT process, address financial concerns, and cope emotionally. Themes were similar between African Americans and non-African Americans. CONCLUSIONS: Families identified several barriers to discussing preemptive LRKT that could be addressed by social workers. Further research must be done to determine whether social workers need to tailor interventions to address families' cultural differences.

Protocol of a randomized controlled trial of culturally sensitive interventions to improve African Americans' and non-African Americans' early, shared, and informed consideration of live kidney transplantation: the Talking About Live Kidney Donation (TALK) Study.

BACKGROUND: Live kidney transplantation (LKT) is underutilized, particularly among ethnic/racial minorities. The effectiveness of culturally sensitive educational and behavioral interventions to encourage patients' early, shared (with family and health care providers) and informed consideration of LKT and ameliorate disparities in consideration of LKT is unknown. METHODS/DESIGN: We report the protocol of the Talking About Live Kidney Donation (TALK) Study, a two-phase study utilizing qualitative and quantitative research methods to design and test culturally sensitive interventions to improve patients' shared and informed consideration of LKT. Study Phase 1 involved the evidence-based development of culturally sensitive written and audiovisual educational materials as well as a social worker intervention to encourage patients' engagement in shared and informed consideration of LKT. In Study Phase 2, we are currently conducting a randomized controlled trial in which participants with progressing chronic kidney disease receive: 1) usual care by their nephrologists, 2) usual care plus the educational materials, or 3) usual care plus the educational materials and the social worker intervention. The primary outcome of the randomized controlled trial will include patients' self-reported rates of consideration of LKT (including family discussions of LKT, patient-physician discussions of LKT, and identification of an LKT donor). We will also assess differences in rates of consideration of LKT among African Americans and non-African Americans. DISCUSSION: The TALK Study rigorously developed and is currently testing the effectiveness of culturally sensitive interventions to improve patients' and families' consideration of LKT. Results from TALK will provide needed evidence on ways to enhance consideration of this optimal treatment for patients with end stage renal disease. TRIAL REGISTRATION: ClinicalTrials.gov number, NCT00932334.

Donor designation: racial and ethnic differences in US nondesignators' preferred methods for disclosing intent to donate organs.

Little is known about racial/ethnic differences in preferred methods of disclosing deceased organ donation intentions among persons not previously designating their organ donation preferences publicly or the association of medical mistrust with preferences. We surveyed 307 United States (US) adults who had not yet designated their donation intentions via drivers' licenses or organ donor cards (nondesignators) to identify their preferred disclosure methods (personal discussions with family, physicians, or religious representatives or public registration via mail/telephone/computer, workplace, place of religious worship, or grocery store/bank/post office) and to assess the association of mistrust with preferences. In multivariable models, we assessed racial/ethnic differences in preferences and the influence of medical mistrust on preferences. Nondesignators most preferred discussions with physicians (65%) or family members (63%). After adjustment, African Americans (AAs) were more likely than Whites to prefer discussion with religious representatives. In contrast, AAs and Hispanics were less likely than Whites to prefer registration at a workplace or through mail/telephone/computer. Medical mistrust was common and associated with less willingness to disclose via several methods. Encouraging donation intention disclosure via discussions with physicians, family, and religious representatives and addressing medical mistrust could enhance strategies to improve nondesignators' donation rates.

Primary care-specialist collaboration in the care of patients with chronic kidney disease.

BACKGROUND AND OBJECTIVES: Collaboration between primary care physicians (PCPs) and nephrologists in the care of patients with chronic kidney disease (CKD) is widely advocated, but physician preferences regarding collaboration are unknown. Physicians' desires to collaborate in the care of a hypothetical patient with CKD, their preferred content of collaboration, and their perceived barriers to collaboration were assessed. DESIGN, SETTING, PARTICIPANTS, & MEASUREMENTS: A questionnaire describing the care of a hypothetical patient with progressive CKD was administered to a national sample of U.S. PCPs and nephrologists. Physician characteristics and attitudes associated with desires to collaborate were identified. RESULTS: Among 124 PCPs and 120 nephrologists, most physicians (85% PCPs versus 94% nephrologists) desired collaboration. Nephrologists were more likely than PCPs to prefer collaboration focus on predialysis/renal replacement therapy preparation and electrolyte management (73% versus 52% and 81% versus 46%, respectively). PCPs were more likely to desire collaboration if the hypothetical patient had diabetes and hypertension (versus hypertension alone), if they believed the care they provide helps slow CKD disease progression, and if they did not perceive health insurance as a barrier to nephrology referral (adjusted percentages [95% confidence interval]: 94% [80 to 98] versus 75% [reference]), 92% [75 to 98] versus 75% [reference], 42% [9 to 85] versus 88% [reference], respectively). CONCLUSIONS: Most PCPs and nephrologists favored collaborative care for a patient with progressive CKD, but their preferred content of collaboration differed. Collaborative models that explicitly include PCPs in the care of patients with CKD may help improve patients' clinical outcomes.

Effect of primary care physicians' use of estimated glomerular filtration rate on the timing of their subspecialty referral decisions.

BACKGROUND: Primary care providers' suboptimal recognition of the severity of chronic kidney disease (CKD) may contribute to untimely referrals of patients with CKD to subspecialty care. It is unknown whether U.S. primary care physicians' use of estimated glomerular filtration rate (eGFR) rather than serum creatinine to estimate CKD severity could improve the timeliness of their subspecialty referral decisions. METHODS: We conducted a cross-sectional study of 154 United States primary care physicians to assess the effect of use of eGFR (versus creatinine) on the timing of their subspecialty referrals. Primary care physicians completed a questionnaire featuring questions regarding a hypothetical White or African American patient with progressing CKD. We asked primary care physicians to identify the serum creatinine and eGFR levels at which they would recommend patients like the hypothetical patient be referred for subspecialty evaluation. We assessed significant improvement in the timing [from eGFR < 30 to ≥ 30 mL/min/1.73m(2)) of their recommended referrals based on their use of creatinine versus eGFR. RESULTS: Primary care physicians recommended subspecialty referrals later (CKD more advanced) when using creatinine versus eGFR to assess kidney function [median eGFR 32 versus 55 mL/min/1.73m(2), p < 0.001]. Forty percent of primary care physicians significantly improved the timing of their referrals when basing their recommendations on eGFR. Improved timing occurred more frequently among primary care physicians practicing in academic (versus non-academic) practices or presented with White (versus African American) hypothetical patients [adjusted percentage(95% CI): 70% (45-87) versus 37% (reference) and 57% (39-73) versus 25% (reference), respectively, both p ≤ 0.01). CONCLUSIONS: Primary care physicians recommended subspecialty referrals earlier when using eGFR (versus creatinine) to assess kidney function. Enhanced use of eGFR by primary care physicians' could lead to more timely subspecialty care and improved clinical outcomes for patients with CKD.

Perceived susceptibility to chronic kidney disease among high-risk patients seen in primary care practices.

BACKGROUND: Patients' views of their risk for the development or progression of chronic kidney disease (CKD) are poorly characterized. OBJECTIVE: To assess perceived risk and concern regarding CKD development or progression among high-risk patients seen in primary care, identify predictors of perceptions, and correlate perceptions with adherence to high blood pressure management. DESIGN AND PARTICIPANTS: Cross-sectional study of 195 patients enrolled in a randomized controlled trial on hypertension management in 40 Maryland primary care practices. MEASUREMENTS: We assessed independent predictors (sociodemographics, health literacy, clinical presence of CKD, co-morbid conditions, and health behaviors) of perceived susceptibility (assessed via questionnaire) and adherence (assessed via Hill-Bone blood pressure adherence scale) in multivariable analyses. MAIN RESULTS: In this hypertensive majority African American (63%) population, many participants had uncontrolled blood pressure (44%) or diabetes (42%). Few (20%) felt "very likely" to develop CKD and one third (33%) were "very concerned" about developing CKD. Participants who were female and had low health literacy had lower perceived susceptibility to CKD compared to males and those with higher health literacy. Race and diabetes were also associated with perceived susceptibility. Greater perceived susceptibility was associated with poorer blood pressure management adherence scores. CONCLUSIONS: Many high-risk patients have low perceived susceptibility to CKD. Poor blood pressure therapy adherence scores among those with greatest perceived susceptibility suggest fatalistic attitudes about CKD. If our findings are confirmed in larger studies, interventions targeting patient perceptions of CKD risk and other attitudes associated with these perceptions could impact adherence to therapies and health outcomes.

Clinical testing patterns and cost implications of variation in the evaluation of CKD among US physicians.

BACKGROUND: Clinical practice guidelines were established to improve the diagnosis and management of chronic kidney disease (CKD), but the extent, determinants, and cost implications of guideline adherence and variation in adherence have not been evaluated. STUDY DESIGN: Cross-sectional survey. SETTINGS & PARTICIPANTS: The questionnaire was sent (on paper or through the internet) to a nationally representative sample of 1,200 US primary care physicians and nephrologists. PREDICTOR: Provider and patient characteristics. OUTCOMES & MEASUREMENTS: Guideline adherence was assessed as present if physicians recommended at least 5 of 6 clinical tests prescribed by the National Kidney Foundation's Kidney Disease Outcomes and Quality Initiative guidelines for a hypothetical patient with newly identified CKD. We also assessed patterns and costs of additional nonrecommended tests for the initial clinical evaluation of CKD. RESULTS: Of the 301 (86 family medicine, 89 internal medicine, and 126 nephrology) eligible physicians who responded to the survey (response rate, 32%), most practiced longer than 10 years (54%), were in nonacademic practices (76%), spent greater than 80% of their time performing clinical duties (77%), and correctly estimated kidney function (73%). Overall, 35% of participants were guideline adherent. Compared with nephrologists, internal medicine and family physicians had lower odds of adherence for all recommended testing (odds ratio, 0.6; 95% confidence interval, 0.3 to 1.1; and odds ratio, 0.3; 95% confidence interval, 0.1 to 0.6, respectively). Participants practicing longer than 10 years had lower odds of ordering all recommended testing compared with participants practicing fewer than 10 years (odds ratio, 0.5; 95% confidence interval, 0.3 to 0.9). Eighty-five percent of participants recommended additional tests, which resulted in a 23% increased total per-patient cost of the clinical evaluation. LIMITATIONS: Recommendations for a hypothetical case scenario may differ from those of actual patients. CONCLUSIONS: Adherence to recommended clinical testing for the diagnosis and management of CKD was poor, and additional testing was associated with substantially increased cost of the clinical evaluation. Improved clarity, dissemination, and uptake of existing guidelines are needed to improve quality and decrease costs of care for patients with CKD.

Identification and referral of patients with progressive CKD: a national study.

BACKGROUND: It is unclear whether primary care physicians (PCPs) and nephrologists differ in their recognition of progressive chronic kidney disease (CKD), agree on diagnostic and referral strategies, and identify similar barriers to caring for patients. METHODS: We conducted a national study of PCPs and nephrologists in the United States through a questionnaire describing a PCP caring for a patient with progressing CKD and questions to assess recognition of kidney dysfunction and approaches to diagnostic evaluation and referral. We identified participant and patient characteristics independently associated with CKD recognition and referral. RESULTS: We randomly identified a national sample of 304 physicians (126 nephrologists [39% response rate], 89 family physicians [28% response rate], and 89 general internists [28% response rate]). PCPs recognized CKD less (adjusted percentage, 59%; 95% confidence interval [CI], 47 to 69, family physicians; adjusted percentage, 78%; 95% CI, 67 to 86, general internists; adjusted percentage, 97%; 95% CI, 93 to 99, nephrologists; P < 0.01), differed from nephrologists in their recommendations for diagnostic testing, and recommended referral less (adjusted percentage, 76%; 95% CI, 65 to 84, family physicians; adjusted percentage, 81%; 95% CI, 70 to 89, general internists; adjusted percentage, 99%; 95% CI, 95 to 100, nephrologists; P < 0.01). PCPs differed from nephrologists in their expected intensity of specialists' involvement in care (16%, family physicians; 20%, general internists; 6%, nephrologists recommending nephrologist input monthly to every 6 months; P = 0.01). Lack of awareness of clinical practice guidelines and lack of clinical and administrative resources were identified as important barriers to care. CONCLUSION: PCPs recognize and recommend specialist care for progressive CKD less than nephrologists and differ in their clinical evaluations and expectations for referral. Improved dissemination of existing guidelines and targeted education in conjunction with efforts to build consensus among PCPs and nephrologists regarding their roles in the care of patients with CKD, including the collaborative development of clinical practice guidelines, could enhance patient care.

Attitudes, psychology, and risk taking of potential live kidney donors: strangers, relatives, and the general public.

It is unclear whether potential living kidney donors and the general public differ in attitudes and psychological characteristics. We performed a case-control study to explore differences in these groups using a standardized questionnaire (analyzed using conditional logistic regression). Strangers (N = 42) were more willing than controls (N = 126) to incur risks: 64% strangers versus 35% controls accepting >50% medical complications (MC) risk; 90% strangers versus 61% controls accepting >8 days hospitalization; 71% strangers versus 43% controls accepting >3 months unpaid; 55% strangers versus 16% controls accepting 100% kidney failure (KF) risk; 70% strangers versus 34% controls accepting < or =10% likelihood of successful transplant (all p < 0.01). Relatives (N = 251) were also more willing than controls (N = 251) to incur risks. Strangers were most willing to incur MC, KF and transplant failure. Groups did not differ in attitudes, depression or anxiety. Potential stranger and related donors are willing to undergo greater risks with donation than the general public, but do not differ in other attitudes, depression or anxiety. This should help reassure transplant centers and the public that both forms of live donation do not necessarily involve increased ethical risks of donor coercion or irrational thought processes. Still, careful attention to communication of all risks of donation is warranted.