How does pre-dialysis education need to change? Findings from a qualitative study with staff and patients

Abstract

BackgroundPre-dialysis education (PDE) is provided to thousands of patients every year, helping them decide which renal replacement therapy (RRT) to choose. However, its effectiveness is largely unknown, with relatively little previous research into patients’ views about PDE, and no research into staff views. This study reports findings relevant to PDE from a larger mixed methods study, providing insights into what staff and patients think needs to improve.MethodsSemi-structured interviews in four hospitals with 96 clinical and managerial staff and 93 dialysis patients, exploring experiences of and views about PDE, and analysed using thematic framework analysis.ResultsMost patients found PDE helpful and staff valued its role in supporting patient decision-making. However, patients wanted to see teaching methods and materials improve and biases eliminated. Staff were less aware than patients of how informal staff-patient conversations can influence patients’ treatment decision-making. Many staff felt ill equipped to talk about all treatment options in a balanced and unbiased way. Patient decision-making was found to be complex and patients’ abilities to make treatment decisions were adversely affected in the pre-dialysis period by emotional distress.ConclusionsSuggested improvements to teaching methods and educational materials are in line with previous studies and current clinical guidelines. All staff, irrespective of their role, need to be trained about all treatment options so that informal conversations with patients are not biased. The study argues for a more individualised approach to PDE which is more like counselling than education and would demand a higher level of skill and training for specialist PDE staff. The study concludes that even if these improvements are made to PDE, not all patients will benefit, because some find decision-making in the pre-dialysis period too complex or are unable to engage with education due to illness or emotional distress. It is therefore recommended that pre-dialysis treatment decisions are temporary, and that PDE is replaced with on-going RRT education which provides opportunities for personalised education and on-going review of patients’ treatment choices. Emotional support to help overcome the distress of the transition to end-stage renal disease will also be essential to ensure all patients can benefit from RRT education.

Critical review of leaflets about conservative management used in uk renal services

“…1999; Joseph‐Williams et al . 2014; Combes et al 2017) and written patient information guidance (Flesch 1946; Ley 1988; Duman 2013). The coding frame was piloted on two leaflets (AEW/HLB), and the final version applied to each of the leaflets by (AEW), eliciting: (1) leaflet purpose, description of CKD and CKD symptoms; (2) description CM, purpose of CM treatment, other treatment options; (3) CM attributes, e.g.…”

Systematic Evaluation of a Provincial Initiative to Improve Transition to Home Dialysis Therapies

“…This has been shown in previous studies on predialysis education. 13 One of the suggestions that recurred was the preference of receiving information earlier, particularly at pilot sites, consistent with suggestions for optimal dialysis transition in the 2012 review by Saggi et al 15 Thus, this should be kept in mind when selecting the optimal timing for distributing the Guide. Due to the nature of this quality improvement project, we did not have a large number of interviewees and responses were not formally analyzed through qualitative methodology.…”

Recommendations for Systematizing Transplant Education Within a Care Delivery System for Patients With Chronic Kidney Disease Stages 3 to 5

“…Previous studies and recommendations support this, finding that patients prefer more time to learn about the transplant, find a living donor, and complete evaluation to be wait-listed. 17 –19 Late referral may force patients to begin dialysis without a preemptive transplant option. 14,20,21 Recommendations on incorporating transplant education more effectively and earlier include providing general CKD education, an early introduction to transplant, specific information about how to get wait-listed and LDKT, and opportunities to hear firsthand stories from living donors and kidney recipients, which is also supported by previous research.…”

“…14,20,21 Recommendations on incorporating transplant education more effectively and earlier include providing general CKD education, an early introduction to transplant, specific information about how to get wait-listed and LDKT, and opportunities to hear firsthand stories from living donors and kidney recipients, which is also supported by previous research. 17,22 The respondents wanted LDKT classes and online resources for both patients with CKD and potential donors with flexible scheduling options as well as referrals to resources outside the class, such as DVDs, online videos, and print materials.…”