Charles R V Tomson

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

BACKGROUND AND OBJECTIVESnThe 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.nnnDESIGN, SETTING, PARTICIPANTS, & MEASUREMENTSnWe used systematic review, pooled prevalence analysis, metaregression, and exploration of heterogeneity in studies of patients with CKD (all stages).nnnRESULTSnFrom 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.nnnCONCLUSIONSnLimited 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.

Better the donor you know? A qualitative study of renal patients' views on 'altruistic' live-donor kidney transplantation.

BACKGROUNDnIn the UK there is a short-fall between individuals requiring a renal transplant and kidneys available for transplantation. Non-directed altruistic living kidney donation has emerged as a strategy for bridging this gap between supply and demand, with the number increasing each year.nnnOBJECTIVEnThis study aimed to explore the views of potential recipients towards non-directed altruistic live-donor kidney transplantation.nnnMETHODSnSemi-structured interviews with 32 UK deceased-donor kidney transplant recipients were performed. Interviews explored willingness to consider directed and non-directed live-donor kidney transplants (LDKTs). Interviews were recorded, transcribed verbatim and transcripts were analysed using the constant comparison method described in Grounded Theory.nnnRESULTSnFor those not willing to accept a non-directed altruistic LDKT, the following themes were identified: i) Prioritising other recipients above self; ii) Fear of acquiring an unknown donors characteristics, and iii) Concern for the donor - unnecessary risk. For those willing to accept a non-directed altruistic LDKT the following themes were identified: iv) Prioritising known above unknown persons, v) Belief that they are as deserving as other potential recipients, and vi) Advantages of a LDKT.nnnCONCLUSIONSnDrawing on gift exchange theory, this study contributes to our understanding of the experience of the intended recipient of a gift. The anonymity of the donor-recipient appears to be seen as a benefit of non-directed altruistic live-donor transplants, freeing recipients from the obligations of the gift. However, those who feel unworthy of the gifted transplant are concerned about the donor and by the lack of opportunity for direct reciprocity. Highlighting the reciprocal benefits reported by donors may allow individuals whose preference is a live-donor transplant to accept one if offered. These insights provide the transplant community with targets for intervention, through which the concerns of potential recipients might be addressed.

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.

Socioeconomic deprivation and barriers to live-donor kidney transplantation: a qualitative study of deceased-donor kidney transplant recipients

Objectives Socioeconomically deprived individuals with renal disease are less likely to receive a live-donor kidney transplant than less-deprived individuals. This qualitative study aimed to identify reasons for the observed socioeconomic disparity in live-donor kidney transplantation. Design A qualitative study using face-to-face in-depth semistructured interviews. Setting A UK tertiary renal referral hospital and transplant centre. Participants Purposive sampling was used to select deceased-donor transplant recipients from areas of high socioeconomic deprivation (SED) (19 participants), followed by a low SED comparison group (13 participants), aiming for maximum diversity in terms of age, gender, ethnicity, primary renal disease and previous renal replacement therapy. Methods Participants were interviewed following their routine transplant clinic review. Interviews were digitally audio-recorded and transcribed verbatim. Transcripts were coded using NVivo software and analysed using the constant comparison method described in Grounded Theory. Results Themes common and distinct to each socioeconomic group emerged. 6 themes appeared to distinguish between individuals from areas of high and low SED. 4 themes were distinct to participants from areas of high SED: (1) Passivity, (2) Disempowerment, (3) Lack of social support and (4) Short-term focus. 2 themes were distinct to the low SED group: (1) Financial concerns and (2) Location of donor. Conclusions Several of the emerging themes from the high SED individuals relate to an individuals lack of confidence and skill in managing their health and healthcare; themes that are in keeping with low levels of patient activation. Inadequate empowerment of socioeconomically deprived individuals by healthcare practitioners was also described. Financial concerns did not emerge as a barrier from interviews with the high SED group. Interventions aiming to redress the observed socioeconomic inequity should be targeted at both patients and clinical teams to increase empowerment and ensure shared decision-making.

Access to Transplantation and Transplant Outcome Measures (ATTOM): study protocol of a UK wide, in-depth, prospective cohort analysis

Introduction There is significant intercentre variability in access to renal transplantation in the UK due to poorly understood factors. The overarching aims of this study are to improve equity of access to kidney and kidney–pancreas transplantation across the UK and to optimise organ allocation to maximise the benefit and cost-effectiveness of transplantation. Methods and analysis 6844 patients aged 18–75u2005years starting dialysis and/or receiving a transplant together with matched patients active on the transplant list from all 72 UK renal units were recruited between November 2011 and March 2013 and will be followed for at least 3u2005years. The outcomes of interest include patient survival, access to the transplant list, receipt of a transplant, patient-reported outcome measures (PROMs) including quality of life, treatment satisfaction, well-being and health status on different forms of renal replacement therapy. Sociodemographic and clinical data were prospectively collected from case notes and from interviews with patients and local clinical teams. Qualitative process exploration with clinical staff will help identify unit-specific factors that influence access to renal transplantation. A health economic analysis will explore costs and outcomes associated with alternative approaches to organ allocation. The study will deliver: (1) an understanding of patient and unit-specific factors influencing access to renal transplantation in the UK, informing potential changes to practices and policies to optimise outcomes and reduce intercentre variability; (2) a patient-survival probability model to standardise access to the renal transplant list and (3) an understanding of PROMs and health economic impact of kidney and kidney–pancreas transplantation to inform the development of a more sophisticated and fairer organ allocation algorithm. Ethics and dissemination The protocol has been independently peer reviewed by National Institute for Health Research (NIHR) and approved by the East of England Research Ethics Committee. The results will be published in peer-reviewed journals and presented at conferences.

Barriers to living donor kidney transplantation in the United Kingdom: A national observational study

ABSTRACT Background. Living donor kidney transplantation (LDKT) provides more timely access to transplantation and better clinical outcomes than deceased donor kidney transplantation (DDKT). This study investigated disparities in the utilization of LDKT in the UK. Methods. A total of 2055 adults undergoing kidney transplantation between November 2011 and March 2013 were prospectively recruited from all 23 UK transplant centres as part of the Access to Transplantation and Transplant Outcome Measures (ATTOM) study. Recipient variables independently associated with receipt of LDKT versus DDKT were identified. Results. Of the 2055 patients, 807 (39.3%) received LDKT and 1248 (60.7%) received DDKT. Multivariable modelling demonstrated a significant reduction in the likelihood of LDKT for older age {odds ratio [OR] 0.11 [95% confidence interval (CI) 0.08–0.17], Pu2009<u20090.0001 for 65–75 years versus 18–34 years}; Asian ethnicity [OR 0.55 (95% CI 0.39–0.77), Pu2009=u20090.0006 versus White]; Black ethnicity [OR 0.64 (95% CI 0.42–0.99), Pu2009=u20090.047 versus White]; divorced, separated or widowed [OR 0.63 (95% CI 0.46–0.88), Pu2009=u20090.030 versus married]; no qualifications [OR 0.55 (95% CI 0.42–0.74), Pu2009<u20090.0001 versus higher education qualifications]; no car ownership [OR 0.51 (95% CI 0.37–0.72), Pu2009=u20090.0001] and no home ownership [OR 0.65 (95% CI 0.85–0.79), Pu2009=u20090.002]. The odds of LDKT varied significantly between countries in the UK. Conclusions. Among patients undergoing kidney transplantation in the UK, there are significant age, ethnic, socio-economic and geographic disparities in the utilization of LDKT. Further work is needed to explore the potential for targeted interventions to improve equity in living donor transplantation.

A multicenter cohort study of potential living kidney donors provides predictors of living kidney donation and non-donation

This multicenter prospective potential living kidney donor cohort study investigated which sociodemographic and other factors predict progression to living kidney donation or donor withdrawal as little is known on this topic. Therefore, we examined data on individuals undergoing living donor assessment at seven hospitals in the United Kingdom. Multivariable logistic regression was used to explore the relationships between donor and recipient characteristics and likelihood of kidney donation. A total of 805 individuals presented for directed donation to 498 intended recipients, of which 112 received a transplant from a living donor. Potential donors were less likely to donate if their intended recipient was female rather than male with an odds ratio of 0.60, a friend rather than relative 0.18, or had renal failure due to a systemic disease rather than another cause 0.41. The most socioeconomically deprived quintile was less likely to donate than the least 0.49, but the trend with deprivation was consistent with chance. Higher body mass index was associated with a lower likelihood of donation (odds ratio per each kg/m2 increase, 0.92). Younger potential donors (odds ratio per each year increase 0.97), those of nonwhite ethnicity 2.98, and friend donors 2.43 were more likely to withdraw from work-up. This is the first study in the United Kingdom of potential living kidney donors to describe predictors of non-donation. Qualitative work with individuals who withdraw might identify possible ways of supporting those who wish to donate but experience difficulties doing so.

Can we routinely measure patient involvement in treatment decision-making in chronic kidney care? A service evaluation in 27 renal units in the UK

Abstract Background Shared decision making is considered an important aspect of chronic disease management. We explored the feasibility of routinely measuring kidney patients involvement in making decisions about renal replacement therapy (RRT) in National Health Service settings. Methods We disseminated a 17-item paper questionnaire on involvement in decision-making among adult patients with established kidney failure who made a decision about RRT in the previous 90 days (Phase 1) and patients who had been receiving RRT for 90–180 days (Phase 2). Recruitment rates were calculated as the ratio between the number of included and expected eligible patients (I : E ratio). We assessed our samples representativeness by comparing demographics between participants and incident patients in the UK Renal Registry. Results Three hundred and five (Phase 1) and 187 (Phase 2) patients were included. For Phase 1, the I : E ratio was 0.44 (range, 0.08–2.80) compared with 0.27 (range, 0.04–1.05) in Phase 2. Study participants were more likely to be white compared with incident RRT patients (88 versus 77%; P < 0.0001). We found no difference in age, gender or social deprivation. In Phases 1 and 2, the majority reported a collaborative decision-making style (73 and 69%), and had no decisional conflict (85 and 76%); the median score for shared decision-making experience was 12.5 (Phase 1) and 10 (Phase 2) out of 20. Conclusion Our study shows the importance of assessing the feasibility of data collection in a chronic disease context prior to implementation in routine practice. Routine measurement of patient involvement in established kidney disease treatment decisions is feasible, but there are challenges in selecting the measure needed to capture experience of involvement, reducing variation in response rate by service and identifying when to capture experience in a service managing peoples chronic disease over time.

Patient preferences, knowledge and beliefs about kidney allocation: qualitative findings from the UK-wide ATTOM programme

Objective To explore how patients who are wait-listed for or who have received a kidney transplant understand the current UK kidney allocation system, and their views on ways to allocate kidneys in the future. Design Qualitative study using semistructured interviews and thematic analysis based on a pragmatic approach. Participants 10 deceased-donor kidney transplant recipients, 10 live-donor kidney transplant recipients, 12 participants currently wait-listed for a kidney transplant and 4 participants whose kidney transplant failed. Setting Semistructured telephone interviews conducted with participants in their own homes across the UK. Results Three main themes were identified: uncertainty of knowledge of the allocation scheme; evaluation of the system and participant suggestions for future allocation schemes. Most participants identified human leucocyte anitgen matching as a factor in determining kidney allocation, but were often uncertain of the accuracy of their knowledge. In the absence of information that would allow a full assessment, the majority of participants consider that the current system is effective. A minority of participants were concerned about the perceived lack of transparency of the general decision-making processes within the scheme. Most participants felt that people who are younger and those better matched to the donor kidney should be prioritised for kidney allocation, but in contrast to the current scheme, less priority was considered appropriate for longer waiting patients. Some non-medical themes were also discussed, such as whether parents of dependent children should be prioritised for allocation, and whether patients with substance abuse problems be deprioritised. Conclusions Our participants held differing views about the most important factors for kidney allocation, some of which were in contrast to the current scheme. Patient participation in reviewing future allocation policies will provide insight as to what is considered acceptable to patients and inform healthcare staff of the kinds of information patients would find most useful.

Development of guidance on the timeliness in response to acute kidney injury warning stage test results for adults in primary care: an appropriateness ratings evaluation

Objectives Tackling the harm associated with acute kidney injury (AKI) is a global priority. In England, a national computerised AKI algorithm is being introduced across the National Health Service (NHS) to drive this change. The study sought to maximise its clinical utility and minimise the potential for burden on clinicians and patients in primary care. Design An appropriateness ratings evaluation using the RAND/UCLA Appropriateness Method. Setting Clinical scenarios were developed to test the timeliness in (1) communication of AKI warning stage test results from clinical pathology services to primary care, and (2) primary care clinician response to an AKI warning stage test result. Participants A 10-person panel was purposively sampled with representation from clinical biochemistry, acute and emergency medicine and general practice. General practitioners (GPs) represented typical practice in relation to rural and urban practice, out of hours care, GP commissioning and those interested in reducing the impact of medicalisation and ‘overdiagnosis’. Results There was agreement that delivery of AKI warning stage test results through interruptive methods of communication (ie, telephone) from laboratories to primary care was the appropriate next step for patients with an AKI warning stage 3 test result. In the context of acute illness, waiting up to 72u2005hours to respond to an AKI warning stage test result was deemed an inappropriate action in 62 out of the 65 (94.5%) cases. There was agreement that a clinician response was required within 6u2005hours, or less, in 39 out of 40 (97.5%) clinical cases relating AKI warning stage test results in the presence of moderate hyperkalaemia. Conclusions The study has informed national guidance to support a timely and calibrated response to AKI warning stage test results for adults in primary care. Further research is needed to support effective implementation, with a view to examine the effect on health outcomes and costs.