Improving Primary Care Delivery for Patients Receiving Maintenance Hemodialysis.

The beneficial impact of primary care, focused on all aspects of a patient's health (rather than a disease-specific focus) is well established. Recognized benefits include greater receipt of preventive care and counseling, lower use of emergency care and hospitalization for ambulatory care-sensitive conditions, and decreased early mortality. Although the importance of primary care and care coordination at the primary care/specialty interface is well recognized, the role of primary care within traditional and emerging care models for patients receiving in-center maintenance hemodialysis remains ill-defined. In this perspective article, we will describe: (1) the role of primary care for patients receiving maintenance hemodialysis and the current evidence regarding the receipt of primary care among these patients; (2) the key challenges to delivery of primary care in these complex cases, including suboptimal care coordination between nephrology and primary care providers, the intensity of dialysis care, and the limited capacity of nephrologists and primary care providers to meet the broad health needs of hemodialysis patients; (3) potential strategies for improving the delivery of primary care for patients receiving hemodialysis; and (4) future research requirements to improve primary care delivery for this high-risk population.

Hypoglycemia Communication in Primary Care Visits for Patients with Diabetes.

BACKGROUND: Hypoglycemia is a common and serious adverse effect of diabetes treatment, especially for patients using insulin or insulin secretagogues. Guidelines recommend that these patients be assessed for interval hypoglycemic events at each clinical encounter and be provided anticipatory guidance for hypoglycemia prevention. OBJECTIVE: To determine the frequency and content of hypoglycemia communication in primary care visits. DESIGN: Qualitative study PARTICIPANTS: We examined 83 primary care visits from one urban health practice representing 8 clinicians and 33 patients using insulin or insulin secretagogues. APPROACH: Using a directed content analysis approach, we analyzed audio-recorded primary care visits collected as part of the Achieving Blood Pressure Control Together study, a randomized trial of behavioral interventions for hypertension. The coding framework included communication about interval hypoglycemia, defined as discussion of hypoglycemic events or symptoms; the components of hypoglycemia anticipatory guidance in diabetes guidelines; and hypoglycemia unawareness. Hypoglycemia documentation in visit notes was compared to visit transcripts. KEY RESULTS: Communication about interval hypoglycemia occurred in 24% of visits, and hypoglycemic events were reported in 16%. Despite patients voicing fear of hypoglycemia, clinicians rarely assessed hypoglycemia frequency, severity, or its impact on quality of life. Hypoglycemia anticipatory guidance was provided in 21% of visits which focused on diet and behavior change; clinicians rarely counseled on hypoglycemia treatment or avoidance of driving. Limited discussions of hypoglycemia unawareness occurred in 8% of visits. Documentation in visit notes had low sensitivity but high specificity for ascertaining interval hypoglycemia communication or hypoglycemic events, compared to visit transcripts. CONCLUSIONS: In this high hypoglycemia risk population, communication about interval hypoglycemia and counseling for hypoglycemia prevention occurred in a minority of visits. There is a need to support clinicians to more regularly assess their patients' hypoglycemia burden and enhance counseling practices in order to optimize hypoglycemia prevention in primary care.

Impact of pre-dialysis nephrology care engagement and decision-making on provider and patient action toward permanent vascular access.

BACKGROUND: While catheters are often thought the result of emergency hemodialysis (HD) initiation among patients with little or no pre-dialysis nephrology care, the role of patient level of engagement in care and modality decision-making have not been fully explored. METHODS: This is a retrospective medical record review of adults (age 18-89 years) who received care in academically affiliated private practice, public hospital, or Veterans Administration settings prior to initiating HD with a catheter between 10/1/2011 and 9/30/2012. Primary predictors were level of patient engagement in nephrology care within 6 months of HD initiation and timing of modality decision-making. Primary outcomes were provider action (referral) and any patient action (evaluation by a vascular surgeon, vein mapping or vascular surgery) toward [arteriovenous fistula or graft, (AVF/AVG)] creation. RESULTS: Among 92 incident HD patients, 66% (n = 61) initiated HD via catheter, of whom 34% (n = 21) had ideal engagement in care but 42% (n = 25) had no documented decision. Providers referred 48% (n = 29) of patients for AVF/AVG, of whom 72% (n = 21) took any action. Ideal engagement in care predicted provider action (adjusted OR 13.7 [95% CI 1.08, 175.1], p = 0.04), but no level of engagement in care predicted patient action (p > 0.3). Compared to patients with no documented decision, those with documented decisions within 3, 3-12, or more than 12 months before initiating dialysis were more likely to have provider action toward AVF/AVG (adjusted OR [95% CI]: 9.0 [1.4,55.6], p = 0.2, 37.6 [3.3423.4] p = 0.003, and 4.8 [0.8, 30.6], p = 0.1, respectively); and patient action (adjusted OR [95% CI]: 18.7 [2.3, 149.0], p = 0.006, 20.4 [2.6, 160.0], p = 0.004, and 6.2 [0.9, 44.0], p = 0.07, respectively). CONCLUSIONS: Timing of patient modality decision-making, but not level of engagement in pre-dialysis nephrology care, was predictive of patient and provider action toward AVF/AVG Interventions addressing patients' psychological preparation for dialysis are needed.

Awareness and Discussions About Chronic Kidney Disease Among African-Americans with Chronic Kidney Disease and Hypertension: a Mixed Methods Study.

BACKGROUND: Routine primary care visits provide an educational opportunity for African-Americans with chronic kidney disease (CKD) and CKD risk factors such as hypertension. The nature of patient-physician discussions about CKD and their impact on CKD awareness in this population have not been well explored. OBJECTIVE: To characterize patient CKD awareness and discussions about CKD between patients and primary care physicians (PCPs). DESIGN: Mixed methods study. PATIENTS: African-American patients with uncontrolled hypertension (≥ 140/90 mmHg) and CKD (albuminuria or eGFR < 60 ml/min/1.73 m2) recruited from an urban primary care clinic. MAIN MEASURES: We assessed patient CKD awareness with questionnaires and audio-recorded patients-PCP discussions during a routine visit. We characterized discussions and used multivariate regression analysis to identify independent patient and visit predictors of CKD awareness or CKD discussions. RESULTS: Among 48 African-American patients with uncontrolled hypertension and CKD, 29% were aware of their CKD. After adjustment, CKD awareness was associated with moderate-severe CKD (stages 3-4) (vs. mild CKD [stages 1-2]) (prevalence ratio [PR] 2.82; 95% CI 1.18-6.78) and inversely associated with diabetes (vs. without diabetes) (PR 0.28; 95% CI 0.10-0.75). CKD discussions occurred in 30 (63%) visits; most focused on laboratory assessment (n = 23, 77%) or risk factor management to delay CKD progression (n = 19, 63%). CKD discussions were associated with moderate-severe CKD (vs. mild CKD) (PR 1.57; 95% CI 1.04-2.36) and diabetes (vs. without diabetes) (PR 1.42; 95% CI 1.09-1.85), and inversely associated with uncontrolled hypertension (vs. controlled) (PR 0.58; 95% CI 0.92-0.89). In subgroup analysis, follow-up CKD awareness did not change by presence or absence of CKD discussion (10.5% vs. 7.7%, p = 0.8). CONCLUSIONS: In patients at risk of CKD progression, few were aware of CKD, and CKD discussions were not associated with CKD awareness. More resources may be needed to enhance the clarity of clinical messages regarding CKD and its significance for patients' health. TRIAL REGISTRATION: ClinicalTrials.gov Identifier: NCT01902719.

Hypertension Self-management in Socially Disadvantaged African Americans: the Achieving Blood Pressure Control Together (ACT) Randomized Comparative Effectiveness Trial.

BACKGROUND: Effective hypertension self-management interventions are needed for socially disadvantaged African Americans, who have poorer blood pressure (BP) control compared to others. OBJECTIVE: We studied the incremental effectiveness of contextually adapted hypertension self-management interventions among socially disadvantaged African Americans. DESIGN: Randomized comparative effectiveness trial. PARTICIPANTS: One hundred fifty-nine African Americans at an urban primary care clinic. INTERVENTIONS: Participants were randomly assigned to receive (1) a community health worker ("CHW") intervention, including the provision of a home BP monitor; (2) the CHW plus additional training in shared decision-making skills ("DoMyPART"); or (3) the CHW plus additional training in self-management problem-solving ("Problem Solving"). MAIN MEASURES: We assessed group differences in BP control (systolic BP (SBP) < 140 mm Hg and diastolic BP (DBP) < 90 mmHg), over 12 months using generalized linear mixed models. We also assessed changes in SBP and DBP and participants' BP self-monitoring frequency, clinic visit patient-centeredness (i.e., extent of patient-physician discussions focused on patient emotional and psychosocial concerns), hypertension self-management behaviors, and self-efficacy. KEY RESULTS: BP control improved in all groups from baseline (36%) to 12 months (52%) with significant declines in SBP (estimated mean [95% CI] - 9.1 [- 15.1, - 3.1], - 7.4 [- 13.4, - 1.4], and - 11.3 [- 17.2, - 5.3] mmHg) and DBP (- 4.8 [- 8.3, - 1.3], - 4.0 [- 7.5, - 0.5], and - 5.4 [- 8.8, - 1.9] mmHg) for CHW, DoMyPART, and Problem Solving, respectively). There were no group differences in BP outcomes, BP self-monitor use, or clinic visit patient-centeredness. The Problem Solving group had higher odds of high hypertension self-care behaviors (OR [95% CI] 18.7 [4.0, 87.3]) and self-efficacy scores (OR [95% CI] 4.7 [1.5, 14.9]) at 12 months compared to baseline, while other groups did not. Compared to DoMyPART, the Problem Solving group had higher odds of high hypertension self-care behaviors (OR [95% CI] 5.7 [1.3, 25.5]) at 12 months. CONCLUSION: A context-adapted CHW intervention was correlated with improvements in BP control among socially disadvantaged African Americans. However, it is not clear whether improvements were the result of this intervention. Neither the addition of shared decision-making nor problem-solving self-management training to the CHW intervention further improved BP control. TRIAL REGISTRY: ClinicalTrials.gov Identifier: NCT01902719.

National Survey of Primary Care Physicians' Knowledge, Practices, and Perceptions of Prediabetes.

BACKGROUND: Despite strong evidence and national policy supporting type 2 diabetes prevention, little is known about type 2 diabetes prevention in the primary care setting. OBJECTIVE: Our objective was to assess primary care physicians' knowledge and practice regarding perceived barriers and potential interventions to improving management of prediabetes. DESIGN: Cross-sectional mailed survey. PARTICIPANTS: Nationally representative random sample of US primary care physicians (PCPs) identified from the American Medical Association Physician Masterfile. MAIN MEASURES: We assessed PCP knowledge, practice behaviors, and perceptions related to prediabetes. We performed chi-square and Fisher's exact tests to evaluate the association between PCP characteristics and the main survey outcomes. KEY RESULTS: In total, 298 (33%) eligible participants returned the survey. PCPs had limited knowledge of risk factors for prediabetes screening, laboratory diagnostic criteria for prediabetes, and management recommendations for patients with prediabetes. Only 36% of PCPs refer patients to a diabetes prevention lifestyle change program as their initial management approach, while 43% discuss starting metformin for prediabetes. PCPs believed that barriers to type 2 diabetes prevention are both at the individual level (e.g., patients' lack of motivation) and at the system level (e.g., lack of weight loss resources). PCPs reported that increased access to and insurance coverage of type 2 diabetes prevention programs and coordination of referral of patients to these resources would facilitate type 2 diabetes preventive efforts. CONCLUSIONS: Addressing gaps in PCP knowledge may improve the identification and management of people with prediabetes, but system-level changes are necessary to support type 2 diabetes prevention in the primary care setting.

Primary Care Physicians' Perceived Barriers to Nephrology Referral and Co-management of Patients with CKD: a Qualitative Study.

BACKGROUND: Effective co-management of patients with chronic kidney disease (CKD) between primary care physicians (PCPs) and nephrologists is increasingly recognized as a key strategy to ensure the delivery of efficient and high-quality CKD care. However, the co-management of patients with CKD remains suboptimal. OBJECTIVE: We aimed to identify PCPs' perceptions of key barriers and facilitators to effective co-management of patients with CKD at the PCP-nephrology interface. STUDY DESIGN: Qualitative study SETTING AND PARTICIPANTS: Community-based PCPs in four US cities: Baltimore, MD; St. Louis, MO; Raleigh, NC; and San Francisco, CA APPROACH: We conducted four focus groups of PCPs. Two members of the research team coded transcribed audio-recorded interviews and identified major themes. KEY RESULTS: Most of the 32 PCPs (59% internists and 41% family physicians) had been in practice for > 10 years (97%), spent ≥ 80% of their time in clinical care (94%), and practiced in private (69%) or multispecialty group practice (16%) settings. PCPs most commonly identified barriers to effective co-management of patients with CKD focused on difficulty developing working partnerships with nephrologists, including (1) lack of timely adequate information exchange (e.g., consult note not received or CKD care plan unclear); (2) unclear roles and responsibilities between PCPs and nephrologists; and (3) limited access to nephrologists (e.g., unable to obtain timely consultations or easily contact nephrologists with concerns). PCPs expressed a desire for "better communication tools" (e.g., shared electronic medical record) and clear CKD care plans to facilitate improved PCP-nephrology collaboration. CONCLUSIONS: Interventions facilitating timely adequate information exchange, clear delineation of roles and responsibilities between PCPs and nephrologists, and greater access to specialist advice may improve the co-management of patients with CKD.

Sociodemographic and Kidney Disease Correlates of Nutrient Intakes Among Urban African Americans With Uncontrolled Hypertension.

OBJECTIVE: The objective of this study was to determine the association between sociodemographic factors and intakes of 4 nutrients and associations between intakes and markers of kidney disease to identify opportunities to improve outcomes among clinically high-risk African Americans. DESIGN AND METHODS: We conducted a cross-sectional study of baseline data from the Achieving Blood Pressure Control Together study, a randomized controlled trial of 159 African Americans (117 females) with uncontrolled hypertension in Baltimore MD. To determine the association between sociodemographic factors and nutrient intakes, we constructed linear and logistic regression models. Using logistic regression, we determined the association between below-median nutrient intakes and kidney disease. Our outcomes of interest were daily intakes of vitamin C, magnesium, dietary fiber, and potassium as estimated by the Block Fruit-Vegetable-Fiber Screener and kidney disease defined as estimated glomerular filtration rate <60 mL/min per 1.73 m2 or urinary albumin-to-creatinine ratio >=30 mg/g. SETTING AND SUBJECTS: Baseline data from the Achieving Blood Pressure Control Together study, a randomized controlled trial of 159 African Americans (117 females) with uncontrolled hypertension, were obtained. METHODS: To determine the association between sociodemographic factors and nutrient intakes, we constructed linear and logistic regression models. Using logistic regression, we determined the association between below-median nutrient intakes and kidney disease. MAIN OUTCOME MEASURES: Our outcomes of interest were daily intakes of vitamin C, magnesium, dietary fiber, and potassium as estimated by the Block Fruit-Vegetable-Fiber Screener and kidney disease defined as estimated glomerular filtration rate <60 mL/min per 1.73 m2 or urinary albumin-to-creatinine ratio ≥30 mg/g. RESULTS: Overall, compared to Institute of Medicine recommendations, participants had lower intakes of magnesium, fiber, and potassium but higher vitamin C intakes. For females, sociodemographic factors that significantly associated with lower intake of the 4 nutrients were older age, obesity, lower health numeracy, and lesser educational attainment. For males, none of the sociodemographic factors were significantly associated with nutrient intakes. Below-median intake was significantly associated with albumin-to-creatinine ratio ≥30 (adjusted odds ratio [95% confidence interval]: 3.4 [1.5, 7.8] for vitamin C; 3.6 [1.6, 8.4] for magnesium; 2.9 [1.3, 6.5] for fiber; 3.6 [1.6, 8.4] for potassium), but not with estimated glomerular filtration rate <60. CONCLUSION: African Americans with uncontrolled hypertension may have low intakes of important nutrients, which could increase their risk of chronic kidney disease. Tailored dietary interventions for African Americans at high risk for chronic kidney disease may be warranted.

Effectiveness of informational decision aids and a live donor financial assistance program on pursuit of live kidney transplants in African American hemodialysis patients.

BACKGROUND: African Americans have persistently poor access to living donor kidney transplants (LDKT). We conducted a small randomized trial to provide preliminary evidence of the effect of informational decision support and donor financial assistance interventions on African American hemodialysis patients' pursuit of LDKT. METHODS: Study participants were randomly assigned to receive (1) Usual Care; (2) the Providing Resources to Enhance African American Patients' Readiness to Make Decisions about Kidney Disease (PREPARED); or (3) PREPARED plus a living kidney donor financial assistance program. Our primary outcome was patients' actions to pursue LDKT (discussions with family, friends, or doctor; initiation or completion of the recipient LDKT medical evaluation; or identification of a donor). We also measured participants' attitudes, concerns, and perceptions of interventions' usefulness. RESULTS: Of 329 screened, 92 patients were eligible and randomized to Usual Care (n = 31), PREPARED (n = 30), or PREPARED plus financial assistance (n = 31). Most participants reported interventions helped their decision making about renal replacement treatments (62%). However there were no statistically significant improvements in LDKT actions among groups over 6 months. Further, no participants utilized the living donor financial assistance benefit. CONCLUSIONS: Findings suggest these interventions may need to be paired with personal support or navigation services to overcome key communication, logistical, and financial barriers to LDKT. TRIAL REGISTRATION: ClinicalTrials.gov [ NCT01439516 ] [August 31, 2011].

Survey of primary care providers' knowledge of screening for, diagnosing and managing prediabetes.

BACKGROUND: Prediabetes affects 86 million US adults, but primary care providers' (PCPs') knowledge, practices, attitudes and beliefs toward prediabetes are unclear. OBJECTIVE: Assess PCPs' (1) knowledge of risk factors that should prompt prediabetes screening, laboratory criteria for diagnosing prediabetes and guidelines for management of prediabetes; (2) management practices around prediabetes; (3) attitudes and beliefs about prediabetes. DESIGN: Self-administered written survey of PCPs. PARTICIPANTS: One hundred forty of 155 PCPs (90%) attending an annual provider retreat for academically affiliated multispecialty practices in the mid-Atlantic region. MAIN MEASURES: Descriptive analyses of survey questions on knowledge, management, and attitudes and beliefs related to prediabetes. Multivariate logistic regression was used to determine the association between provider characteristics (gender, race/ethnicity, years since training, specialty and provider type) and knowledge, management, and attitudes and beliefs about prediabetes. KEY RESULTS: Six percent of PCPs correctly identified all of the risk factors that should prompt prediabetes screening. Only 17% of PCPs correctly identified the laboratory parameters for diagnosing prediabetes based on both fasting glucose and hemoglobin A1c. Nearly 90% of PCPs reported close follow-up (within 6 months) of patients with prediabetes. Few PCPs (11%) selected referral to a behavioral weight loss program as the recommended initial management approach to prediabetes. PCPs agreed that patient-related factors are important barriers to lifestyle change and metformin use. Provider characteristics were generally not associated with knowledge, management, attitudes and beliefs about prediabetes in multivariate analyses. CONCLUSIONS: Addressing gaps in knowledge and the underutilization of behavioral weight loss programs in prediabetes are two essential areas where PCPs could take a lead in curbing the diabetes epidemic.

Minding the gap and overlap: a literature review of fragmentation of primary care for chronic dialysis patients.

BACKGROUND: Care coordination is a challenge for patients with kidney disease, who often see multiple providers to manage their associated complex chronic conditions. Much of the focus has been on primary care physician (PCP) and nephrologist collaboration in the early stages of chronic kidney disease, but less is known about the co-management of the patients in the end-stage of renal disease. We conducted a systematic review and synthesis of empirical studies on primary care services for dialysis patients. METHODS: Systematic literature search of MEDLINE/PubMED, CINAHL, and EmBase databases for studies, published until August 2015. Inclusion criteria included publications in English, empirical studies involving human subjects (e.g., patients, physicians), conducted in US and Canadian study settings that evaluated primary care services in the dialysis patient population. RESULTS: Fourteen articles examined three major themes of primary care services for dialysis patients: perceived roles of providers, estimated time in providing primary care, and the extent of dialysis patients' use of primary care services. There was general agreement among providers that PCPs should be involved but time, appropriate roles, and miscommunication are potential barriers to good primary care for dialysis patients. Although many dialysis patients report having a PCP, the majority rely on primary care from their nephrologists. Studies using administrative data found lower rates of preventive care services than found in studies relying on provider or patient self-report. DISCUSSION: The extant literature revealed gaps and opportunities to optimize primary care services for dialysis patients, foreshadowing the challenges and promise of Accountable Care / End-Stage Seamless Care Organizations and care coordination programs currently underway in the United States to improve clinical and logistical complexities of care for this commonly overlooked population. Studies linking the relationship between providers and patients' receipt of primary care to outcomes will serve as important comparisons to the nascent care models for ESRD patients, whose value is yet to be determined.

Hospital discharge communications during care transitions for patients with acute kidney injury: a cross-sectional study.

BACKGROUND: High quality hospital discharge communications about acute kidney injury (AKI) could facilitate continuity of care after hospital transitions and reduce patients' post-hospitalization health risks. METHODS: We characterized the presence and quality (10 elements) of written hospital discharge communications (physician discharge summaries and patient instructions) for patients hospitalized with AKI at a single institution in 2012 through medical record review. RESULTS: In 75 randomly selected hospitalized patients with AKI, fewer than half of physician discharge summaries and patient instructions documented the presence (n = 33, 44 % and n = 10, 13 %, respectively), cause (n = 32, 43 % and n = 1, 1 %, respectively), or course of AKI (n = 23, 31 %, discharge summary only) during hospitalization. Few provided recommendations for treatment and/or observation specific to AKI (n = 11, 15 and 6, 8 % respectively). In multivariable analyses, discharge communications containing information about AKI were most prevalent among patients with AKI Stage 3, followed by patients with Stage 2 and Stage 1 (adjusted percentages (AP) [95 % CI]: 84 % [39-98 %], 43 % [11-82 %], and 24 % [reference], respectively; p trend = 0.008). AKI discharge communications were also more prevalent among patients with known chronic kidney disease (CKD) versus those without (AP [95 % CI]: 92 % [51-99 %] versus 39 % [reference], respectively, p = 0.02) and among patients discharged from medical versus surgical services (AP [95 % CI]: 73 % [33-93 %] versus 23 % [reference], respectively, p = 0.01). Communications featured 4 median quality elements. Quality elements were greater in communications for patients with more severe AKI (Stage 3 (number of additional quality elements (ß) [95 % CI]: 2.29 [0.87-3.72]), Stage 2 (ß [95 % CI]: 0.62 [-0.65-1.90]) and Stage 1 (reference); p for trend = 0.002). CONCLUSIONS: Few hospital discharge communications in AKI patients described AKI or provided recommendations for AKI care. Improvements in the quality of hospital discharge communications to improve care transitions of patients with AKI are needed.

Specialist and primary care physicians' views on barriers to adequate preparation of patients for renal replacement therapy: a qualitative study.

BACKGROUND: Early preparation for renal replacement therapy (RRT) is recommended for patients with advanced chronic kidney disease (CKD), yet many patients initiate RRT urgently and/or are inadequately prepared. METHODS: We conducted audio-recorded, qualitative, directed telephone interviews of nephrology health care providers (n = 10, nephrologists, physician assistants, and nurses) and primary care physicians (PCPs, n = 4) to identify modifiable challenges to optimal RRT preparation to inform future interventions. We recruited providers from public safety-net hospital-based and community-based nephrology and primary care practices. We asked providers open-ended questions to assess their perceived challenges and their views on the role of PCPs and nephrologist-PCP collaboration in patients' RRT preparation. Two independent and trained abstractors coded transcribed audio-recorded interviews and identified major themes. RESULTS: Nephrology providers identified several factors contributing to patients' suboptimal RRT preparation, including health system resources (e.g., limited time for preparation, referral process delays, and poorly integrated nephrology and primary care), provider skills (e.g., their difficulty explaining CKD to patients), and patient attitudes and cultural differences (e.g., their poor understanding and acceptance of their CKD and its treatment options, their low perceived urgency for RRT preparation; their negative perceptions about RRT, lack of trust, or language differences). PCPs desired more involvement in preparation to ensure RRT transitions could be as "smooth as possible", including providing patients with emotional support, helping patients weigh RRT options, and affirming nephrologist recommendations. Both nephrology providers and PCPs desired improved collaboration, including better information exchange and delineation of roles during the RRT preparation process. CONCLUSIONS: Nephrology and primary care providers identified health system resources, provider skills, and patient attitudes and cultural differences as challenges to patients' optimal RRT preparation. Interventions to improve these factors may improve patients' preparation and initiation of optimal RRTs.

Primary care physicians' familiarity, beliefs, and perceived barriers to practice guidelines in non-diabetic CKD: a survey study.

BACKGROUND: Most non-dialysis dependent chronic kidney disease (CKD) patients are cared for by their primary care physicians (PCPs). Studies suggest many CKD patients receive suboptimal care. Recently, CKD clinical practice guidelines were updated with additional emphasis on albuminuria. METHODS: We performed an internet-based, cross-sectional survey of active PCPs in the United States using the American Medical Association Physician Masterfile. We explored CKD guideline familiarity, self-reported practice behaviors, and attitudinal and external barriers to implementing guideline recommendations, including albuminuria testing. RESULTS: Of 12,034 PCPs targeted, 848 opened a study email, 165 (19.5%) responded. Most respondents (88%) spent ≥50% of their time in clinical care. Respondents were generally in private practice (46%). Most PCPs (96%) felt that eGFR values were helpful. Approximately, 75% and 91% of PCPs reported testing for albuminuria in non-diabetic hypertensive patients with an eGFR > 60 ml/min/1.73 m2 and < 60 ml/min/1.73 m2, respectively. Barriers to albuminuria testing included a lack of effect on management, limited time, and the perceived absence of guidelines recommending testing. While PCPs expressed high levels of agreement with the definition of CKD, 30% were concerned with overdiagnosis in older adults with an eGFR in the CKD stage 3a range. Most PCPs felt that angiotensin converting enzyme inhibitor (ACEi)/ angiotensin II receptor blockers (ARBs) improved outcomes in CKD, though agreement was lower with severe vs. moderate albuminuria (78% vs. 85%, respectively, p = 0.03). Many PCPs (51%) reported being unfamiliar with CKD guidelines, but were receptive to systematic interventions to improve their CKD care. CONCLUSIONS: PCPs generally agree with CKD clinical practice guidelines regarding CKD definition and albuminuria testing. However, future interventions are necessary to improve PCPs' familiarity with CKD guidelines, overcome barriers to albuminuria testing and, assist PCPs in targeting ACEi/ARBs to the patients most likely to benefit.

Selecting renal replacement therapies: what do African American and non-African American patients and their families think others should know? A mixed methods study.

BACKGROUND: Little is known regarding the types of information African American and non-African American patients with chronic kidney disease (CKD) and their families need to inform renal replacement therapy (RRT) decisions. METHODS: In 20 structured group interviews, we elicited views of African American and non-African American patients with CKD and their families about factors that should be addressed in educational materials informing patients' RRT selection decisions. We asked participants to select factors from a list and obtained their open-ended feedback. RESULTS: Ten groups of patients (5 African American, 5 non-African American; total 68 individuals) and ten groups of family members (5 African American, 5 non-African American; total 62 individuals) participated. Patients and families had a range (none to extensive) of experiences with various RRTs. Patients identified morbidity or mortality, autonomy, treatment delivery, and symptoms as important factors to address. Family members identified similar factors but also cited the effects of RRT decisions on patients' psychological well-being and finances. Views of African American and non-African American participants were largely similar. CONCLUSIONS: Educational resources addressing the influence of RRT selection on patients' morbidity and mortality, autonomy, treatment delivery, and symptoms could help patients and their families select RRT options closely aligned with their values. Including information about the influence of RRT selection on patients' personal relationships and finances could enhance resources' cultural relevance for African Americans.

The providing resources to enhance African American patients' readiness to make decisions about kidney disease (PREPARED) study: protocol of a randomized controlled trial.

BACKGROUND: Living related kidney transplantation (LRT) is underutilized, particularly among African Americans. The effectiveness of informational and financial interventions to enhance informed decision-making among African Americans with end stage renal disease (ESRD) and improve rates of LRT is unknown. METHODS/DESIGN: We report the protocol of the Providing Resources to Enhance African American Patients' Readiness to Make Decisions about Kidney Disease (PREPARED) Study, a two-phase study utilizing qualitative and quantitative research methods to design and test the effectiveness of informational (focused on shared decision-making) and financial interventions to overcome barriers to pursuit of LRT among African American patients and their families. Study Phase I involved the evidence-based development of informational materials as well as a financial intervention to enhance African American patients' and families' proficiency in shared decision-making regarding LRT. In Study Phase 2, we are currently conducting a randomized controlled trial in which patients with new-onset ESRD receive 1) usual dialysis care by their nephrologists, 2) the informational intervention (educational video and handbook), or 3) the informational intervention in addition to the option of participating in a live kidney donor financial assistance program. The primary outcome of the randomized controlled trial will include patients' self-reported rates of consideration of LRT (including family discussions of LRT, patient-physician discussions of LRT, and identification of a LRT donor). DISCUSSION: Results from the PREPARED study will provide needed evidence on ways to enhance the decision to pursue LRT among African American patients with ESRD.

Setting an agenda for comparative effectiveness systematic reviews in CKD care.

Systematic reviews comparing the effectiveness of strategies to prevent, detect, and treat chronic kidney disease are needed to inform patient care. We engaged stakeholders in the chronic kidney disease community to prioritize topics for future comparative effectiveness research systematic reviews. We developed a preliminary list of suggested topics and stakeholders refined and ranked topics based on their importance. Among 46 topics identified, stakeholders nominated 18 as 'high' priority. Most pertained to strategies to slow disease progression, including: (a) treat proteinuria, (b) improve access to care, (c) treat hypertension, (d) use health information technology, and (e) implement dietary strategies. Most (15 of 18) topics had been previously studied with two or more randomized controlled trials, indicating feasibility of rigorous systematic reviews. Chronic kidney disease topics rated by stakeholders as 'high priority' are varied in scope and may lead to quality systematic reviews impacting practice and policy.

Development of a decision aid to inform patients' and families' renal replacement therapy selection decisions.

BACKGROUND: Few educational resources have been developed to inform patients' renal replacement therapy (RRT) selection decisions. Patients progressing toward end stage renal disease (ESRD) must decide among multiple treatment options with varying characteristics. Complex information about treatments must be adequately conveyed to patients with different educational backgrounds and informational needs. Decisions about treatment options also require family input, as families often participate in patients' treatment and support patients' decisions. We describe the development, design, and preliminary evaluation of an informational, evidence-based, and patient-and family-centered decision aid for patients with ESRD and varying levels of health literacy, health numeracy, and cognitive function. METHODS: We designed a decision aid comprising a complementary video and informational handbook. We based our development process on data previously obtained from qualitative focus groups and systematic literature reviews. We simultaneously developed the video and handbook in "stages." For the video, stages included (1) directed interviews with culturally appropriate patients and families and preliminary script development, (2) video production, and (3) screening the video with patients and their families. For the handbook, stages comprised (1) preliminary content design, (2) a mixed-methods pilot study among diverse patients to assess comprehension of handbook material, and (3) screening the handbook with patients and their families. RESULTS: The video and handbook both addressed potential benefits and trade-offs of treatment selections. The 50-minute video consisted of demographically diverse patients and their families describing their positive and negative experiences with selecting a treatment option. The video also incorporated health professionals' testimonials regarding various considerations that might influence patients' and families' treatment selections. The handbook was comprised of written words, pictures of patients and health care providers, and diagrams describing the findings and quality of scientific studies comparing treatments. The handbook text was written at a 4th to 6th grade reading level. Pilot study results demonstrated that a majority of patients could understand information presented in the handbook. Patient and families screening the nearly completed video and handbook reviewed the materials favorably. CONCLUSIONS: This rigorously designed decision aid may help patients and families make informed decisions about their treatment options for RRT that are well aligned with their values.

African American and non-African American patients' and families' decision making about renal replacement therapies.

We conducted focus group meetings of African American and non-African American patients with end-stage renal disease (six groups) and their family members (six groups), stratified by race/ethnicity and treatment. We elicited differences in participants' experiences with shared decision making about initiating renal replacement therapy (RRT; that is, hemodialysis, peritoneal dialysis, or a kidney transplant). Patients were often very sick when initiating RRT, and had little, if any, time to make a decision about what type of RRT to initiate. They also lacked sufficient information about alternative treatment options prior to initiation. Family members played supportive roles and shared in decision making when possible. Reports were similar for African American and non-African American participants. Our findings suggest that a greater emphasis on the improved engagement of patients and their families in shared decision making about RRT initiation is needed for both ethnic/racial minorities and nonminorities.