Dominic Taylor

A Systematic Review of the Prevalence and Associations of Limited Health Literacy in CKD

BACKGROUND AND OBJECTIVES The self-management and decision-making skills required to manage CKD successfully may be diminished in those with low health literacy. A 2012 review identified five papers reporting the prevalence of limited health literacy in CKD, largely from United States dialysis populations. The literature has expanded considerably since. DESIGN, SETTING, PARTICIPANTS, & MEASUREMENTS We used systematic review, pooled prevalence analysis, metaregression, and exploration of heterogeneity in studies of patients with CKD (all stages). RESULTS From 433 studies, 15 new studies met the inclusion criteria and were analyzed together with five studies from the 2012 review. These included 13 cross-sectional surveys, five cohort studies (using baseline data), and two using baseline clinical trial data. Most (19 of 20) were from the United States. In total, 12,324 patients were studied (3529 nondialysis CKD, 5289 dialysis, 2560 transplant, and 946 with unspecified CKD; median =198.5; IQR, 128.5-260 per study). Median prevalence of limited health literacy within studies was 23% (IQR, 16%-33%), and pooled prevalence was 25% (95% confidence interval, 20% to 30%) with significant between-study heterogeneity (I2=97%). Pooled prevalence of limited health literacy was 25% (95% confidence interval, 16% to 33%; I2=97%) among patients with CKD not on dialysis, 27% (95% confidence interval, 19% to 35%; I2=96%) among patients on dialysis, and 14% (95% confidence interval, 7% to 21%; I2=97%) among patients with transplants. A higher proportion of nonwhite participants was associated with increased limited health literacy prevalence (P=0.04), but participant age was not (P=0.40). Within studies, nonwhite ethnicity and low socioeconomic status were consistently and independently associated with limited health literacy. Studies were of low or moderate quality. Within-study participant selection criteria had potential to introduce bias. CONCLUSIONS Limited health literacy is common in CKD, especially among individuals with low socioeconomic status and nonwhite ethnicity. This has implications for the design of self-management and decision-making initiatives to promote equity of care and improve quality. Lower prevalence among patients with transplants may reflect selection of patients with higher health literacy for transplantation either because of less comorbidity in this group or as a direct effect of health literacy on access to transplantation.

Limited health literacy in advanced kidney disease

Limited health literacy may reduce the ability of patients with advanced kidney disease to understand their disease and treatment and take part in shared decision making. In dialysis and transplant patients, limited health literacy has been associated with low socioeconomic status, comorbidity, and mortality. Here, we investigated the prevalence and associations of limited health literacy using data from the United Kingdom-wide Access to Transplantation and Transplant Outcome Measures (ATTOM) program. Incident dialysis, incident transplant, and transplant wait-listed patients ages 18 to 75 were recruited from 2011 to 2013 and data were collected from patient questionnaires and case notes. A score >2 in the Single-Item Literacy Screener was used to define limited health literacy. Univariate and multivariate analyses were performed to identify patient factors associated with limited health literacy. We studied 6842 patients, 2621 were incident dialysis, 1959 were wait-listed, and 2262 were incident transplant. Limited health literacy prevalence was 20%, 15%, and 12% in each group, respectively. Limited health literacy was independently associated with low socioeconomic status, poor English fluency, and comorbidity. However, transplant wait-listing, preemptive transplantation, and live-donor transplantation were associated with increasing health literacy.

Education, health literacy, and inequity in access to transplantation: findings from the ATTOM cohort study

Abstract Background The optimal treatment for most people with kidney failure is kidney transplantation, but donor organs are limited. The pathway to living-donor or deceased-donor kidney transplantation entails multiple clinician–patient interactions, likely to require adequate health literacy. The Access to Transplant and Transplant Outcome Measures (ATTOM) study identified inequity in access to transplantation by educational level. We tested the hypothesis that low health literacy promotes inequity by acting as a mediator between reduced education and transplantation. Methods The ATTOM cohort study recruited incident dialysis patients aged 18–75 years, who were able to provide informed consent, from all 72 kidney units in the UK from Dec 1, 2011, to Sept 30, 2013]. This mediation analysis concerned the exposure (no educational qualifications vs any), prospective outcomes (time to being added to the deceased-donor transplant waiting list and time to living-donor transplantation, censored at 2 years), the mediator (health literacy as judged by Single Item Literacy Screener, a validated, self-reported health literacy screening measure) and covariates (age, ethnicity, and comorbidity by Charlson index). Effect sizes were calculated for education on health literacy, health literacy on being added to the transplant waiting list and living-donor transplantation, and for education on being added to the waiting list and living-donor transplantation, all adjusted for the covariates. These effect sizes were used to calculate the total effect of education on being added to the transplant list and transplantation and the indirect effect mediated by health literacy. Weibull Accelerated Failure Time models were used. Ethics approval was given by Cambridge Research Ethics Committee. Findings 2463 patients were included. The total effect of low educational level was to increase the time to being added to the transplant waiting list by 22% (time to event ratio 1·22, 95% CI 1·02–1·48) and time to living donor transplant by 47% (1·47, 1·04–2·08). The indirect effect mediated by health literacy accounted for 35% and 30%, respectively. Interpretation Our findings show that health literacy mediates a substantial proportion of the effect of low educational level on reduced access to the deceased-donor transplant waiting list and to living donor transplantation. Interventions to improve equity of transplantation should account for the health literacy skills needed for patients to take part in shared decision making. Funding ATTOM was funded under National Institute for Health Research Programme Grants for Applied Research (RP-PG-0109-10116).

UK Renal Registry 19th Annual Report: Chapter 11 Centre Variation in Access to Kidney Transplantation (2010-2015)

. Patients treated at non-transplanting renal centres were less likely to be wait listed for transplantation compared to patients treated at transplanting renal centres (OR 0.78, 95% CI 0.72–0.85). . Patients treated at non-transplanting renal centres were less likely to receive a transplant from a donor after cardiac death or living kidney donor compared to patients treated at a transplanting renal centre (OR 0.79, 95% CI 0.71–0.89).

Chapter 9 Centre Variation in Access to Kidney Transplantation (2011–2013 incident cohort)

. Patients of non-White ethnicity had an equal chance of transplant wait-listing within two years of starting renal replacement therapy (OR 1.03, 95% CI 0.93– 1.14). This represents an improvement in equity of access to the kidney transplant waiting list compared to findings from 2008–2010. Once on the transplant waiting list, non-White patients had a 60% lower chance of receiving a kidney transplant of any type within two years (OR 0.40, 95% CI 0.35–0.45). . Compared to men, women had a 17% lower chance of being activated on the kidney transplant waiting list within two years of starting renal replacement therapy (OR 0.83, 95% CI 0.76–0.90). Once on the transplant waiting list, women had a 15% lower chance of receiving a kidney transplant of any type within two years (OR 0.85, 95% CI 0.76–0.96).

UK Renal Registry 19th Annual Report: Appendix I Acronyms and Abbreviations used in the Annual Report

AAB Academic Affairs Board (Renal Association) ACE (inhibitor) Angiotensin converting enzyme (inhibitor) AKI Acute kidney injury ANZDATA Australia and New Zealand Dialysis and Transplant Registry APD Automated peritoneal dialysis ADPKD Autosomal dominant polycystic kidney disease APKD Adult polycystic kidney disease ATTOM Access to transplant and transplant outcome measures ATTOMic Access to transplant and transplant outcome measures in children AV Arteriovenous AVF Arteriovenous fistula AVG Arteriovenous graft BAPN British Association of Paediatric Nephrology BCG Bromocresol green BCP Bromocresol purple Bicarb Bicarbonate BMD Bone mineral disease BMI Body mass index BP Blood pressure BSI Blood stream infection BTS British Transplant Society Ca Calcium CAB Clinical Affairs Board (Renal Association) CABG Coronary artery bypass grafting CAPD Continuous ambulatory peritoneal dialysis CCG Clinical Commissioning Group CCL Clinical Computing Limited CCPD Cycling peritoneal dialysis CDI Clostridium difficile infection Chol Cholesterol CHr Target reticulocyte Hb content CI Confidence interval CICR Cumulative incidence competing risk CIF Cumulative incidence function CK Creatine kinase CKD Chronic kidney disease CKD-EPI Chronic kidney disease epidemiology collaboration CK-MB Creatine kinase isoenzyme MB CKD-MBD Chronic kidney diseasemineral bone disorder COPD Chronic obstructive pulmonary disease