Limited english proficiency and concordance of CKD awareness among primary care providers and patients.

BACKGROUND: Patient awareness of CKD and primary care provider (PCP) recognition of CKD are lower than for other chronic conditions. Understanding how patients may become aware of CKD is critical to their participation in healthy behaviors to slow CKD progression. We examined factors associated with the concordance of CKD awareness among patients and providers and hypothesized that concordance of CKD awareness would be influenced by social and demographic factors that impact communication, such as limited English proficiency (LEP) and health literacy. METHODS: Between July 2011 to July 2014, patients with CKD from three primary care clinics in a public healthcare delivery system were surveyed with questions regarding their health, including awareness of their CKD status. Chart review was performed to identify PCP recognition of CKD, defined as CKD listed anywhere in the problem list within nine months before patient enrollment into the study. We used logistic regression to determine the association between provider recognition and patient awareness of kidney disease among those patients with CKD, adjusting for patient demographics, co-morbidities, and provider training. RESULTS: The study population (n = 152) had a mean age of 57.4 (SD 13), was 48.7% male and was racially/ethnically and linguistically diverse: 89.5% self-identified as Black, Hispanic, or Asian and 32.2% had LEP. Most patients had hypertension (89.5%) and diabetes (77.6%); mean eGFR was 66.1 ml/min/1.73m2 (SD 32.8). Positive concordance of CKD awareness was 42% (n = 64). Odds of positive concordance with their providers were much higher among patients with LEP compared to English speaking patients (adjusted odds ratio = 11.07, 95%CI 1.60-76.39). CONCLUSIONS: Concordance of CKD awareness among PCPs and their patients with CKD in one public delivery system was higher among patients with LEP. While speculative, this may be due to greater caution in provider communication about CKD with LEP patients.

Albuminuria Testing by Race and Ethnicity among Patients with Hypertension with and without Diabetes.

BACKGROUND: Detection of chronic kidney disease (CKD) with urine albumin-to-creatinine ratio (UACR) among patients with hypertension (HTN) provides an opportunity for early treatment, potentially mitigating risk of CKD progression and cardiovascular complications. Differences in UACR testing patterns among racial/ethnic populations at risk for CKD could contribute to known disparities in CKD complications. METHODS: We examined the prevalence of UACR testing among low-income adult primary care patients with HTN, defined by a new administrative code for HTN or 2 clinic blood pressures >140/90 mm Hg between January 1, 2014, and January 1, 2017, in one public health-care delivery system with a high prevalence of end-stage kidney disease among race/ethnic minorities. Logistic regression was used to identify odds of UACR testing within 1 year of a HTN diagnosis, overall, and by racial/ethnic subgroup, adjusted for demographic factors, estimated glomerular filtration rate, and HTN severity. Models were also stratified by diabetes status. RESULTS: The cohort (n = 16,414) was racially/ethnically diverse (16% White, 21% Black, 34% Asian, 19% Hispanic, and 10% other) and 51% female. Only 35% of patients had UACR testing within 1 year of a HTN diagnosis. Among individuals without diabetes, odds of UACR testing were higher among Asians, Blacks, and Other subgroups compared to Whites (adjusted OR [aOR] 1.19; 95% CI 1.00-1.42 for Blacks; aOR 1.33; 1.13-1.56 for Asians; aOR 1.30; 1.04-1.60 for Other) but were not significantly different between Hispanics and Whites (aOR 1.17; 0.97-1.39). Among individuals with diabetes, only Asians had higher odds of UACR testing compared to Whites (aOR 1.35; 1.12-1.63). CONCLUSIONS: Prevalence of UACR testing among low-income patients with HTN is low in one public health-care delivery system, with higher odds of UACR testing among racial/ethnic minority subgroups compared to Whites without diabetes and similar odds among those with diabetes. If generalizable, less albuminuria testing may not explain higher prevalence of kidney failure in racial/ethnic minorities.

CKD Awareness in the General Population: Performance of CKD-Specific Questions.

RATIONALE & OBJECTIVE: Data from patients in one delivery system have suggested that the prevalence of chronic kidney disease (CKD) awareness differs by how the question is asked. We examined the sensitivity and specificity of different CKD awareness questions among diverse community-dwelling adults who were not necessarily engaged in primary care to determine the generalizability of prior results. STUDY DESIGN: Cross-sectional study. SETTING & PARTICIPANTS: Participants in the Healthy Aging in Neighborhoods of Diversity Across the Life Span (HANDLS) Study. PREDICTOR: CKD awareness, ascertained using 5 different questions. OUTCOME: Sensitivity and specificity of each awareness question, using laboratory results as the gold standard. ANALYTIC APPROACH: Logistic regression was used to compare sensitivities of different awareness questions. RESULTS: Among 2,046 participants, mean (SD) age was 56.5 (9.1) years, 41.5% were men, and 61.3% were African American. More than 40% were poor, 35% reported not having health insurance, and 16.9% had low health literacy. More than 20% (n = 424) had CKD. Sensitivities of single CKD awareness questions ranged from 2.2% for "kidney damage" to 5.2% for "kidney problem." Sensitivity of the compound question asking about "weak kidneys, failing kidneys, or kidney disease" was 19.5%. Sensitivity of this compound CKD awareness question was higher among study participants with more advanced CKD and low health literacy, and those who lived below the poverty level. LIMITATIONS: Single measures of estimated glomerular filtration rate and albuminuria; study participants may have been more engaged in their health care than the average US adult, potentially limiting the generalizability of results. CONCLUSIONS: CKD awareness is low among community-dwelling adults with kidney disease, though data using a sensitive compound question ascertaining awareness suggest that we have met the Healthy People 2020 goal related to CKD awareness of 13.4%. Understanding the phrases about kidney disease that are most understandable to patients with and at risk for CKD is important to further increase CKD awareness.

Interventions to Improve Blood Pressure Control Among Socioeconomically Disadvantaged Patients With CKD: Kidney Awareness Registry and Education Pilot Randomized Controlled Trial.

RATIONALE & OBJECTIVE: Sustainable interventions that enhance chronic kidney disease (CKD) management are not often studied in safety-net primary care, in which populations bear a disproportionate burden of disease and experience translational gaps between research and practice. We tested the feasibility of implementing and the impact of 2 technology-enhanced interventions designed to enhance CKD care delivery. STUDY DESIGN: A 2×2 randomized controlled pilot trial. SETTING & PARTICIPANTS: Primary care provider teams (n = 6) and 137 patients with CKD aged 18 to 75 years from 2 safety-net primary care clinics, 2013 to 2015. INTERVENTIONS: Primary care provider teams were randomly assigned to access a CKD registry with point-of-care notifications and quarterly feedback or a usual-care registry for 12 months. Patients within provider teams were randomly assigned to participate in a CKD self-management support program or usual care for 12 months. OUTCOMES: We examined recruitment, randomization, and participation in each intervention. We also examined the impact of each intervention and their combination on change in systolic blood pressure (SBP), albuminuria, and patient self-reported behavioral measures after 12 months. RESULTS: Among potentially eligible patients identified using the electronic health record, 24% were eligible for study participation, of whom 35% (n = 137) were enrolled. Mean age was 55 years, 41% were non-English speaking, and 93% were of racial/ethnic minority. Mean baseline estimated glomerular filtration rate was 70.5 (SD = 30.3) mL/min/1.73 m2; mean baseline SBP was 131 (SD = 21.8) mm Hg. Nearly 90% of clinicians reported that the CKD registry influenced their CKD management. More than 95% of patients randomly assigned to CKD self-management support engaged regularly with the intervention. Estimated changes in SBP over 1 year were nonstatistically different in each of the 3 intervention groups compared with usual care: (usual care: 0.5 [95% CI, -5.2 to 6.3] mm Hg; CKD registry only: -5.4 [95% CI, -12.2 to 1.4] mm Hg; CKD self-management support only: -6.4 [95% CI, -13.7 to 1.0] mm Hg; and CKD registry plus CKD self-management support: -0.5 [-5.5 to 4.5] mm Hg), though differences were larger among those with baseline SBPs > 140/90 mm Hg. Decreases in albuminuria were similarly nonstatistically different in each of the intervention groups compared with usual care. No differences were observed in patient self-reported behaviors. LIMITATIONS: Single health system. CONCLUSIONS: Patient and provider interventions to improve CKD care are feasible to implement in low-income settings with promising results among those with uncontrolled blood pressure. FUNDING: National Institute of Diabetes and Digestive and Kidney Diseases. TRIAL REGISTRATION: ClinicalTrials.gov, number: NCT01530958.

Association between health literacy and self-care behaviors among patients with chronic kidney disease.

BACKGROUND: We explored the association between health literacy and self-care behaviors among low-income patients with chronic kidney disease (CKD). METHODS: We used baseline data from the Kidney Awareness Registry and Education trial (n = 137 patients with CKD) and multivariable logistic regressions to cross-sectionally examine the association between health literacy, defined by a validated questionnaire, and healthy behaviors. RESULTS: Study participants had a mean age of 55 years, were racially diverse (6% White, 36% Hispanic, 43% Black, 15% Asian) and 26% had low health literacy. Over one-third (38%) had hypertension, 51% had diabetes, and 67% had CKD stage 3 or 4. Compared to individuals with adequate health literacy, those with low health literacy had non-statistically significant higher tobacco use (adjusted odds ratio [aOR] = 2.33; 95% CI 0.90-6.06) and lower consumption of sugary beverages (aOR = 0.50; 0.20-1.23) and statistically significant decreased fast food intake (aOR = 0.38; 0.16-0.93). Health literacy was not associated with differences in medication adherence (0.84; 0.38-1.89) or physical activity (aOR = 2.39; 0.54-10.53). CONCLUSIONS: Health literacy was not uniformly associated with all self-care behaviors important for CKD management. A more nuanced understanding of the association of health literacy and self-care may be necessary to promote participation in behaviors known to slow CKD progression.

Acceptability of a multilevel intervention to improve blood pressure control among patients with chronic kidney disease in a public health care delivery system.

BACKGROUND: The Kidney Awareness Registry and Education (KARE) trial examined the impact of a multilevel intervention on blood pressure control among patients with chronic kidney disease (CKD) in a public health care delivery system. KARE consisted of a clinic-based intervention (a primary care CKD registry with point-of-care provider notifications and quarterly feedback related to CKD management) and a patient-directed intervention [a CKD self-management support (CKD-SMS) program that included low literacy educational materials, automated telephone-administered self-management modules and telephone health coaching]. We explored the acceptability of these interventions among end users. METHODS: At trial conclusion, we surveyed 39 primary care providers (PCPs) to identify preferences about components of the clinic intervention, conducted two focus groups among non-PCP staff to elicit in-depth attitudes and experiences with operationalizing the team-based CKD registry, and conducted eight focus groups with English- and Spanish-speaking patients to hear about their experiences with the CKD-SMS program. Focus group transcripts were analyzed using thematic analysis. Self-reported participation and data from the automated telephone program were used to evaluate patient engagement. RESULTS: Most PCPs (94%) believed that the point-of-care notifications benefited clinic workflow and agreed that quarterly feedback enhanced their ability to identify (89.5%) and manage (73.7%) CKD. Staff confirmed usefulness of point-of-care notifications. Patients suggested the automated telephone system was impersonal, though easy to use; that frequent automated calls were helpful to reinforce self-management behaviors; and that telephone health coaching was convenient. Nearly 40% of patients completed >80% of automated phone calls, 95% participated in calls with their health coach and 77% created at least one action plan. CONCLUSIONS: A CKD registry is acceptable to primary care health care teams and has potential to enhance identification and management of CKD in primary care. Low-income patients appreciated and engaged with a telephone-based CKD-SMS program, demonstrating its potential for increasing awareness and health engagement among populations with CKD within a public health care delivery system.

Impact of a Primary Care CKD Registry in a US Public Safety-Net Health Care Delivery System: A Pragmatic Randomized Trial.

BACKGROUND: Many individuals with chronic kidney disease (CKD) do not receive guideline-concordant care. We examined the impact of a team-based primary care CKD registry on clinical measures and processes of care among patients with CKD cared for in a public safety-net health care delivery system. STUDY DESIGN: Pragmatic trial of a CKD registry versus a usual-care registry for 1 year. SETTING & PARTICIPANTS: Primary care providers (PCPs) and their patients with CKD in a safety-net primary care setting in San Francisco. INTERVENTION: The CKD registry identified at point of care all patients with CKD, those with blood pressure (BP)>140/90mmHg, those without angiotensin-converting enzyme (ACE) inhibitor/angiotensin receptor blocker (ARB) prescription, and those without albuminuria quantification in the past year. It also provided quarterly feedback pertinent to these metrics to promote "outreach" to patients with CKD. The usual-care registry provided point-of-care cancer screening and immunization data. OUTCOMES: Changes in systolic BP at 12 months (primary outcome), proportion of patients with BP control, prescription of ACE inhibitors/ARBs, quantification of albuminuria, severity of albuminuria, and estimated glomerular filtration rate. RESULTS: The patient population (n=746) had a mean age of 56.7±12.1 (standard deviation) years, was 53% women, and was diverse (8% non-Hispanic white, 35.7% black, 24.5% Hispanic, and 24.4% Asian). Randomization to the CKD registry (30 PCPs, 285 patients) versus the usual-care registry (49 PCPs, 461 patients) was associated with 2-fold greater odds of ACE inhibitor/ARB prescription (adjusted OR, 2.25; 95% CI, 1.45-3.49) and albuminuria quantification (adjusted OR, 2.44; 95% CI, 1.38-4.29) during the 1-year study period. Randomization to the CKD registry was not associated with changes in systolic BP, proportion of patients with uncontrolled BP, or degree of albuminuria or estimated glomerular filtration rate. LIMITATIONS: Potential misclassification of CKD; missing baseline medication data; limited to study of a public safety-net health care system. CONCLUSIONS: A team-based safety-net primary care CKD registry did not improve BP parameters, but led to greater albuminuria quantification and more ACE inhibitor/ARB prescriptions after 1 year. Adoption of team-based CKD registries may represent an important step in translating evidence into practice for CKD management.

Variation in Patients' Awareness of CKD according to How They Are Asked.

BACKGROUND AND OBJECTIVES: Awareness of CKD is necessary for patient engagement and adherence to medical regimens. Having an accurate tool to assess awareness is important. Use of the National Health and Nutrition Examination Survey (NHANES) CKD awareness question "Have you ever been told by a doctor or other health professional that you had weak or failing kidneys (excluding kidney stones, bladder infections, or incontinence)?" produces surprisingly low measures of CKD awareness. We sought to compare the sensitivity and specificity of different questions ascertaining awareness of CKD and other health conditions. DESIGN, SETTING, PARTICIPANTS, & MEASUREMENTS: Between August of 2011 and August of 2014, an in-person questionnaire was administered to 220 adults with CKD, diabetes, hypertension, or hyperlipidemia who received primary care in a public health care delivery system to ascertain awareness of each condition. CKD awareness was measured using the NHANES question, and other questions, asking if patients knew about their "kidney disease", "protein in the urine", "kidney problem", or "kidney damage." Demographic data were self-reported; health literacy was measured. The sensitivity and specificity of each question was calculated using the medical record as the gold standard. RESULTS: In this diverse population (9.6% white, 40.6% black, 36.5% Hispanic, 12.3% Asian), the mean age was 58 years, 30% had a non-English language preference, and 45% had low health literacy. Eighty percent of participants had CKD, with a mean eGFR of 47.2 ml/min per 1.73 m(2). The sensitivities of each CKD awareness question were: 26.4% for "kidney damage", 27.7% for "kidney disease", 33.2% for "weak or failing kidneys", 39.8% for "protein in the urine", and 40.1% for "kidney problem." Specificities ranged from 82.2% to 97.6%. The best two-question combination yielded a sensitivity of 53.1% and a specificity of 83.3%. This was lower than awareness of hypertension (90.1%) or diabetes (91.8%). CONCLUSIONS: CKD awareness is low compared with other chronic diseases regardless of how it is ascertained. Nevertheless, more sensitive questions to ascertain CKD awareness suggest current under-ascertainment.

The Kidney Awareness Registry and Education (KARE) study: protocol of a randomized controlled trial to enhance provider and patient engagement with chronic kidney disease.

BACKGROUND: Chronic kidney disease (CKD) is common and is associated with excess mortality and morbidity. Better management could slow progression of disease, prevent metabolic complications, and reduce cardiovascular outcomes. Low patient awareness of CKD and ineffective patient-provider communication can impede such efforts. We developed provider and patient-directed interventions that harness health information technology to enhance provider recognition of CKD and delivery of guideline concordant care and augment patient understanding and engagement in CKD care. METHODS/DESIGN: We report the design and protocol of the Kidney Awareness Registry and Education (KARE) Study, a 2x2 factorial randomized controlled trial that examines the impact of a multi-level intervention on health outcomes among low-income English, Spanish and Cantonese-speaking patients with CKD in a safety net system. The intervention includes: (1) implementation of a primary care electronic CKD registry that notifies practice teams of patients' CKD status and employs a patient profile and quarterly feedback to encourage provision of guideline-concordant care at point-of-care and via outreach; and (2) a language-concordant, culturally-sensitive self-management support program that consists of automated telephone modules, provision of low-literacy written patient-educational materials and telephone health coaching. The primary outcomes of the trial are changes in systolic blood pressure (BP) and the proportion of patients with BP control (≤ 140/90 mmHg) after one year. Secondary outcomes include patient understanding of CKD, participation in healthy behaviors, and practice team delivery of guideline-concordant CKD care. DISCUSSION: Results from the KARE study will provide data on the feasibility, effectiveness, and acceptability of technology-based interventions that support primary care efforts at improving health outcomes among vulnerable patients with CKD. TRIAL REGISTRATION: ClinicalTrials.gov, number: NCT01530958.

Assessment of printed patient-educational materials for chronic kidney disease.

BACKGROUND: Awareness of chronic kidney disease (CKD) is suboptimal among patients with CKD, perhaps due to poor readability of patient education materials (PEMs). We reviewed the suitability and readability of common PEMs that focused on 5 content areas: basics of CKD, risk factors for CKD development, risk factors for CKD progression, complications of CKD and self-management strategies to improve kidney health. METHODS: Three reviewers (nephrologist, primary care physician, patient) used the Suitability Assessment of Materials to rate PEMs on message content/stimulation of learning, typography, visuals and layout and determined literacy level. Mean ratings were calculated for each PEM by content area and overall (superior = 70-100; adequate = 40-69; inadequate = <40). Linear regression was used to determine the impact of literacy level on mean rating. RESULTS: We reviewed 69 PEMs from 19 organizations, divided into 113 content area sections. Most (79%) PEM sections were 'adequate' (mean rating, 58.3%). Inclusion of patient-centered content and opportunities for patient interaction were associated with 'superior' ratings. Mean ratings (SD) were similar across content areas: basics of CKD, 58.9% (9.1); risk factors for CKD development, 57.0% (12.3); risk factors for CKD progression, 58.5% (12.0); CKD complications, 62.3% (15.7), and self-management strategies, 62.2% (12.3). ≤6th grade literacy level (vs. >6th grade) was associated with an 11.7 point higher mean rating. CONCLUSION: Most PEMs for kidney disease were adequate. Outstanding PEMs shared characteristics of patient centeredness, a low literacy level, and patient interaction. Providers should be aware of strengths and limitations of PEMs when educating their patients about CKD.

Beyond familism: a case study of the ethics of care of a Latina caregiver of an elderly parent with dementia.

Caregiving for elderly relatives with dementia is described as a stressful and challenging obligation that disproportionately befalls women in families. Studies of Latina caregivers tend to focus on how the cultural value of familism shapes caregiving expectations and experiences. However, these studies tend not to distinguish between familism as ideology and familism as practice to evaluate how caregiving may or may not conform to prescribed cultural scripts nor to examine the ethics of care utilized by family caregivers. Through a case study of a second-generation daughter, we explore the nuances of an ethics of care that constitute her caregiving experiences and the tensions generated by efforts to respect divergent cultural mandates.

Making sense of behavioral disturbances in persons with dementia: Latino family caregiver attributions of neuropsychiatric inventory domains.

The purpose of this study was to describe the nature and frequency of Latino family caregiver attributions for dementia-related neuropsychiatric symptoms. This is a cross-sectional study conducted in the Sacramento, California area. Participants were 30 Latino family caregivers of community-dwelling Latino elderly meeting research criteria for dementia who were selected from an ongoing cohort study of older Latinos (Sacramento Area Latino Study on Aging). Open-ended probes were used to elicit caregiver attributions for each symptom domain of the Neuropsychiatric Inventory. Across the 30 caregivers, 121 explanations for neuropsychiatric domains were present. Content analysis of these explanations revealed 7 different attribution categories (ie, Alzheimer disease, interpersonal problems, other medical conditions, personality, mental, aging, and genetics). Overall, Alzheimer disease was the most frequent attribution category but accounted for less than 30% of the total attributions. In conclusion, this study found that Latino caregivers were more likely to attribute neuropsychiatric symptoms to causes other than Alzheimer disease or a related dementia.