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

Abstract

SUMMARY Background Written information supplements nurse‐led education about treatment options. It is unclear if this information enhances patients’ reasoning about conservative management (CM) and renal replacement therapy decisions. Aim This study describes a critical review of resources U.K. renal staff use when providing CM options to people with Established Kidney Disease (EKD) during usual pre‐dialysis education. Design A survey using mixed methods identified and critically analysed leaflets about CM. Participants & measurements All 72 renal units in the United Kingdom received an 11‐item questionnaire to elicit how CM education is delivered, satisfaction and/or needs with patient resources and staff training. Copies of leaflets were requested. A coding frame was utilised to produce a quality score for each leaflet. Results Fifty‐four (75%) units participated. Patients discuss CM with a nephrologist (98%) or nurse (100%). Eighteen leaflets were reviewed, mean scores were 8.44 out of 12 (range 5–12, SD = 2.49) for information presentation; 3.50 out of 6 (range 0–6, SD = 1.58) for inclusion of information known to support shared decision‐making and 2.28 out of 6 (range 1–4, SD = 0.96) for presenting non‐biased information. Conclusions Nurses preferred communicating via face‐to‐face contact with patients and/or families because of the emotional consequences and complexity of planning treatment for the next stage of a person's worsening kidney disease. Conversations were supplemented with written information; 66% of which were produced locally. Staff perceived a need for using leaflets, and spend time and resources developing them to support their services. However, no leaflets included the components needed to help people reason about conservative care and renal replacement therapy options during EKD education consultations.

Do Personal Stories Make Patient Decision Aids More Effective? An Update from the International Patient Decision Aids Standards

“…It may be useful for researchers to broaden their focus from patient stories to a set of stories enabling people to make connections with decision maker perspectives along the healthcare pathway (i.e., a narrative thread). The research undertaken when developing patient decision aid intervention should seek to capture the complexity of the decision within the healthcare system through investigation of health professional and delivery of care narratives (73)(74)(75). The findings do not need to be represented as a story or anecdote but can be threaded through patient decision aids using components such as engagement prompts, value clarification tasks, decision guidance statements or facts about the health and decision context.…”

“…For example, researchers have recently designed decision maps from their development research to provide a visual representation or overview of the decision problem in the context of managing health and illness for use in patient decision aids (73)(74)(75).…”

Kidney disease pathways, options and decisions: an environmental scan of international patient decision aids

“…These PtDAs had at least a standard level of readability (an ~14-year-old readability level) [ 40 ] and included components encouraging people to think proactively about what mattered to them about their choices and share their reasoning with health professionals; perhaps explaining why using these PtDAs within kidney services enhances people’s experience of making shared decisions (ptDAs 1, 4–7). However, not all resources were designed to support the conservative management–dialysis decision problem explicitly [ 47 ], and there was variation in how conservative management was labelled and positioned within these PtDAs, how dialysis options were described and how changes to kidney disease stages were summarized. Of the 17 PtDAs identified, none included the components needed to proactively support people in making the decision between conservative management and dialysis across the trajectory from kidney failure to EoL care.…”

“…The conservative management and renal replacement therapy decision is complex and can be seen as a hierarchy of nested decisions (see Figure 1 , adapted from Winterbottom et al 2020 [ 6 ]) rather than a choice between discrete options [ 7 ]. Decision-making takes place in the context of managing a long-term condition, with patients and professionals deliberating about treatment changes over months and years as kidney function stabilizes or continues to decline [ 8 ].…”

Patient information about living donor kidney transplantation across UK renal units: A critical review

“…TPatient information leaflets did not meet acceptable levels for readability, present treatment information in a balanced way, and they were not written in ways known to support decision-making (Winterbottom et al, 2007(Winterbottom et al, , 2020a. It is not known if the information provided by kidney services about LDKT is able to support people with AKD to choose between renal replacement options or help people discuss living kidney donation with their family and friends.…”