Overcoming Low Health Literacy to Strengthen Modality Choices Requires Individualized Responses

Effective management of chronic kidney disease (CKD) requires considerable commitment on the part of patients and their caregivers to navigate complex interventions, including dietary modifications, medication schedules, and shared decision-making in modality selection, not to mention the supported self-management skills required to perform home dialysis. Individual self-management skills and confidence are impacted by self-efficacy (1) and health literacy—subjects that are receiving increasing attention since they are potentially modifiable risk factors to both improve outcome and reduce demand on stretched health services. Low health literacy is common among CKD populations, is associated with non-white ethnicity and low socioeconomic status (2), and is presumably one of the explanations why these factors impact on the uptake of home therapies. Evidence of unequal access to home therapies comes from the latest UK Renal Registry report (3): 17% of dialysis therapy is delivered as a home therapy (13% peritoneal dialysis [PD], 4% home hemodialysis [HHD]) with wide variation between centers. Twenty-eight percent of in-center HD patients are from minority ethnic groups, whereas this figure is 22% for PD and 13% for HHD. The impact of deprivation on treatment modality is marked—PD was commenced in 22.1% of the least deprived quintile and 16.67% of the most deprived. This trend extends to pre-emptive transplantation, which, in the least deprived quintile, was 12.9%, compared with 7.0% in the most deprived. In the US, a similar discrepancy in access to home therapies was noted in African American and Hispanic patients (4). Overcoming inequalities in access to high-quality therapies is a major challenge that we frequently return to in Peritoneal Dialysis International. Part of the problem relates to the way information is given to support decision-making for home dialysis and the confidence that patients have in making that choice, which is impacted by cultural, language, educational, and economic issues. These factors have been explored in linked studies from New Zealand. An exploration of patient and caregiver values, beliefs, and experiences when considering home dialysis identified such themes as difficulty with decision-making due to the complex nature of the information presented, lack of exposure to home dialysis, feelings of disempowerment, and pressure to make a choice. Impacting on decision-making was the extent of family and community support, social isolation, and confidence in clinical teams. Despite the presence of a pre-dialysis service, patients commonly reported sub-optimal preparation for dialysis and inadequate support (5). An interview study of Maori CKD patients found that delayed diagnosis, fear of dialysis, and a lack of awareness of cultural issues among clinical staff contributed to marginalization (6). Economic considerations are a reality, particularly to those on lower incomes (7). To ensure their relevance to these complex issues, educational programs should be co-designed with users, giving the best opportunity to support self-management skills and decision-making, particularly among groups that have greater difficulty accessing healthcare. Indeed, both PD and HHD teams have extensive experience of the design of educational programs that take into account variations in learning approaches and barriers such as impaired vision or cognition. That experience needs to be applied more extensively across the CKD pathway so that both pre-dialysis education, and training programs for in-center HD patients are able to address health literacy and focus on cultural and social values to reduce fear and build confidence around decisions to undertake home dialysis. Peer educators who have firsthand experience of kidney failure and its treatment, can help to improve the quality of information given, through their presence in clinics and home visits. Such a program has been established in the English West Midlands, where Black, Asian, and minority ethnic patients make up 40% of the population. A variety of languages are spoken by the educators, including Urdu, Mirpuri, Punjabi, and Bengali, allowing greater engagement, education, and support (8). In this issue of Peritoneal Dialysis International, a commentary by Nikhil Shah and colleagues, from Alberta, Canada, discusses whether the growth of one home dialysis modality necessarily impacts on the other. Do they compete for the same pool of patients or are these groups different? Of course, in addition to the interaction between dialysis home therapy modalities, rates of transplantation also influence the dynamic. The authors conclude that where the use of home dialysis is relatively low, there is scope for both to grow without negatively impacting on each other. More importantly than competing against each other, home therapies compete together with the complex challenges of low health literacy, socio-economic deprivation, social isolation, late presentation, and poor preparation for renal replacement therapy. To overcome these, educational programs need to be prioritized, ensuring that they are responsive to individual requirements and supported where necessary by health coaching, greater involvement of peer support workers, and approaches to provide assistance to allow people to dialyze in the community.