Background
Every year in the United Kingdom, 7000 patients with end-stage chronic kidney disease (CKD stage 5) start a renal replacement therapy (RRT) for the first time [
1]. There are five main treatment options open to these patients: transplantation; haemodialysis in a nurse-led unit/hospital; haemodialysis at home; peritoneal dialysis; and conservative care. Each option has different clinical advantages and disadvantages, and different impacts on patients’ lives. This makes the selection of RRT quite complex. In line with national policy, renal services promote patient choice of treatment, within a framework of clinically feasible options. Most patients therefore undertake pre-dialysis education (PDE) over a number of months prior to starting RRT, which is designed to help them make a treatment decision. Although practice varies, PDE usually includes one or more one-to-one sessions with a specialist nurse; a group meeting with talks from clinical staff and patients already on RRT; and written and audio-visual materials to take home.
Although the importance of PDE was highlighted in 2010 by the European Renal Best Practice Advisory Board [
2], research into its effectiveness is still in its infancy. Studies consistently report that one-third or more of patients do not recall receiving information about treatment options [
3‐
5]. Patient dissatisfaction with various aspects of PDE was found in two recent large studies, one in the US [
6] and the second in 36 European countries [
4]: some patients felt not all treatment options were presented equally [
4,
6]; others could not recall being told about options other than their current treatment [
4]. Satisfaction with education about transplantation and in-centre haemodialysis is often higher than for PD and home haemodialysis [
4,
6], although a more recent Australian study found no significant differences in knowledge between patients on different types of treatment [
7].
Smaller studies suggest that PDE is sub-optimal because: patients lack information or feel choices are limited [
8]; education may be provided too late, when patients are too ill to make decisions [
8]; individual healthcare professionals have a bias towards/against certain treatments [
7,
9]; patient information is too complex or hard to understand [
8,
10,
11]; information may not stress that patients have choices [
11] or may not consider sufficiently patients’ preferences and lifestyles [
12]; and patients may not be as involved in treatment decision-making as they would prefer [
13,
14].
In the absence of a high-quality evidence base, national guidelines have been developed using consensus-building techniques. In 2014, UK renal experts published three patient education standards covering: the importance of education in supporting patient choice; the need to tailor education to individual needs; and the continuation of education into the RRT treatment phase [
15]. In 2015, European experts published quality standards, making recommendations about the content, timing, delivery and evaluation of PDE [
16]. To our knowledge, there have been no trials of enhanced PDE designed to address these shortcomings, although there have been two recent trials of RRT decision-aids [
7,
17].
In 2011–12, we undertook a 4-site mixed methods study looking at the barriers and success factors for home dialysis treatment and the influence of a target on uptake rates [
18]. Since this study found that PDE was one of three main barriers to increasing the uptake of home dialysis, we subsequently decided to report the findings about PDE in more detail. Given that the original study set out to explore home dialysis, it is possible that this could have skewed the data and findings. However, we consider that the data we present are highly likely to be relevant to all dialysis patients because: patients were asked about their treatment pathways and how choices had been made
in general, rather than specifically related to home dialysis; and it was only at the very end of the patient interviews, after talking about PDE, that views about home dialysis were explored. In this article, we report a complete analysis of data related to PDE from staff and patients from the main study, exploring the following question: how effective is PDE from the perspective of patients and staff?
Methods
The main study used mixed methods to look at quantitative changes in home dialysis uptake rates and qualitative case studies to explore barriers and success factors for home dialysis. The setting was four hospital renal units, selected from seven West Midlands units to achieve a demographic and rural/urban mix. Semi-structured one-to-one interviews were undertaken with dialysis patients and clinical and managerial staff. An intellectual framework for the design and analysis of qualitative interviews, which has been reported in detail elsewhere [
18], was derived by mapping systematic review evidence of potential success factors onto an established theoretical model for health system change, and cross-checking this for relevance against renal service guidance. The interview topic guides consisted of a small number of semi-structured open-ended questions designed to prompt the sharing of experiences and views. For patients, the topic guide covered: how patients came to be on dialysis; experiences of pre-dialysis and dialysis pathways; and suggestions for improvement. For staff, the topic guide covered: current practice, using the last 2–3 patients as exemplars; how well the pre-dialysis and dialysis pathways work; how the team had been working to increase the uptake of home dialysis; and suggestions for improvement. No direct questions about PDE were asked in either staff or patient interviews. If patients/staff did not spontaneously talk about the pre-dialysis period, they were prompted with an open-ended question about how treatment decisions were made.
The patient population was dialysis patients aged 18+ starting their current treatment within 12 months, excluding patients scheduled for surgery within 3 months as they were unlikely to be available or unfit to be interviewed. Purposive sampling by age, sex, ethnic group and treatment type was used to achieve maximum diversity. Potential patient participants were approached by phone by renal secretaries, who sent out study information to interested patients who were subsequently contacted by the research team. Staff participants were encouraged to take part and provided with study information via e-mail from the renal clinical lead, with renal secretaries then scheduling interviews. Semi-structured qualitative telephone interviews were undertaken with 20–25 patients per site (November 2011–March 2012) until saturation was achieved. The staff population was clinical staff working with CKD stage 5 patients and managerial staff. Semi-structured qualitative face-to-face interviews were undertaken on-site with 20–30 staff per site (Table
1) (September 2011–April 2012) until saturation was achieved. Interviews lasted for 30–60 min and were undertaken in private with only the interviewer and interviewee present. Brief field notes were made, as appropriate, after each interview. The interviews were shared equally between GC, KA and KS who were all experienced qualitative health service researchers, employed by the University of Birmingham. KS is a specialist in qualitative methods. This information was provided to participants via the Participant Information sheet. GC and KA are female and have Ph.Ds. KS is male and has an M.Sc. None of the research team: were clinically qualified/experienced; had any prior or current relationships with the four renal teams or NHS Trusts taking part in the research; had not undertaken previous research with end-stage renal patients/staff; and did not have personal experience or a particular personal interest in the research topic.
Table 1
Roles of staff interviewed
Renal consultant lead | 1 | 1 | 1 | 1 | 4 | |
Renal consultant | 8 | 6 | 3 | 2 | 19 |
Clinical specialist | – | – | – | 1 | 1 |
Specialist registrar | 2 | 2 | 1 | – | 5 |
Sub-total doctors | 11 | 9 | 5 | 4 | 29 | 30% |
Acute ward nurse manager | 2 | 1 | 1 | 1 | 5 | |
Dialysis unit nurse manager | 3 | 3 | 4 | 3 | 13 |
Lead renal nurse/renal matron | 1 | – | – | 1 | 2 |
Pre-dialysis nurse/sister | 1 | 1 | 3 | 1 | 6 |
PD nurse/sister | 2 | – | – | 2 | 4 |
Home therapy nurse | – | 4 | 3 | – | 7 |
Home haemodialysis nurse/sister | 2 | – | – | 2 | 4 |
Sub-total nurses | 11 | 9 | 11 | 10 | 41 | 43% |
Home therapy support worker | – | 1 | – | – | 1 | |
Renal technician | 1 | 1 | 1 | 1 | 4 |
Psychologist | – | – | – | – | 0 |
Dietitian | 1 | 1 | – | 1 | 3 |
Consultant vascular surgeon | – | 1 | 1 | – | 2 |
Renal social worker/assistant | 1 | – | – | 1 | 2 |
Renal business manager | 1 | – | 1 | 1 | 3 |
Sub-total other renal staff | 4 | 4 | 3 | 4 | 15 | 16% |
Hospital general managers | 2 | 1 | – | 1 | 4 | |
Hospital clinical/medical director | 1 | 2 | 1 | 1 | 5 |
Hospital finance manager | 1 | – | – | 1 | 2 |
Sub-total hospital managers | 4 | 3 | 1 | 3 | 11 | 11% |
TOTAL | 30 | 25 | 20 | 21 | 96 | |
Kidney Patients Association chair | 1 | – | – | 1 | 2 | |
No. interviews declined | 3 | 0 | 7 | 0 | 10 | |
Tables
2 and
3 summarise the characteristics of eligible and interviewed patients. The eligibility criteria were amended during fieldwork in site 1 to include patients starting treatment within the last 24 months, rather than 12 months, as there were few eligible patients in some sampling categories. No effects were observed from this change, particularly on patients’ abilities to recall their treatment experiences. Of the 618 patients who had started their current dialysis treatment within the last 24 months, 101 patients (16%) were invited to interview, 8 refused and 93 were interviewed (21–25 per site). Of the 106 staff invited to interview, 10 refused and 96 were interviewed (20–30 per site). Table
1 details the roles of staff interviewed. There were no withdrawals of patients or staff from the study. All interviews were audio-recorded and were transcribed verbatim by a specialist transcription team. Transcripts were checked by researchers but not participants. The written and audio-visual PDE materials used in each site were also reviewed.
Eligible | 205 | 152 | 129 | 132 | 618 |
Refusals | – | 5 | 3 | 0 | 8 |
Interviewed | 23 | 25 | 21 | 24 | 93 |
% eligible patients interviewed | 11% | 16% | 16% | 18% | 15% |
Table 3
Patient characteristics
Treatment type |
PD | 10 | 11 | 11 | 8 | 40 | 43 | 181 | 22% |
Home haemodialysis | 4 | 7 | 1 | 6 | 18 | 19 | 28 | 64% |
In-centre haemodialysis | 9 | 7 | 9 | 10 | 35 | 38 | 409 | 9% |
Sexa
|
Male | 14 | 18 | 12 | 11 | 55 | 59 | 359 | 15% |
Female | 9 | 7 | 9 | 13 | 38 | 41 | 230 | 17% |
Age group |
18–39 | 5 | 5 | 3 | 5 | 18 | 19 | 67 | 27% |
40–64 | 13 | 8 | 8 | 9 | 38 | 41 | 223 | 17% |
65+ | 5 | 12 | 10 | 10 | 37 | 40 | 328 | 11% |
Ethnic groupa
|
White | 13 | 25 | 15 | 23 | 76 | 82 | 509 | 15% |
Indian | 6 | 0 | 2 | 1 | 9 | 10 | 52 | 17% |
Pakistani | 2 | 0 | 0 | 0 | 2 | 2 | 23 | 9% |
African Caribbean | 2 | 0 | 4 | 0 | 6 | 6 | 33 | 18% |
Analysis
Data were analysed using a form of thematic analysis [
19], the framework method [
20], which has been shown to be useful in conducting healthcare research with a multi-disciplinary team of researchers. This allowed the development of themes to be derived entirely from the raw data to provide rich descriptions of how patients experienced PDE and what might need to improve. Researchers familiarized themselves with the audio-recordings and transcripts, and analysed a small number of entire transcripts line by line to generate initial codes, which were then compared, refined and agreed on as a team. An analytic framework was developed from the initial group of transcripts and then refined as the full set of transcripts was coded onto a spreadsheet using a matrix of codes and cases. Coding was shared equally between GC, KA and KS with 10% of transcripts coded by two researchers and discrepancies resolved at team meetings. The resulting themes were refined through team discussion. Separate analysis of staff and patient transcripts at each site were then triangulated. Discussion of findings with clinical staff at site-specific feedback meetings led to further refinement, followed by triangulation and synthesis across sites to identify overall study findings. Research team meetings provided the forum for discussing reflexivity and considering how to minimise the influence of individual researchers on the research.
For the analysis presented in this article, transcripts were subsequently re-read, checking that a complete data set on PDE had been extracted: to include all direct mentions of PDE and treatment decision-making, and more general comments about the pre-dialysis period; and to exclude any data linked to or arising from prompts about home dialysis. No data were identified for exclusion as a result of this checking. The themes identified for PDE were not specified in advance, but were derived entirely from the data.
Discussion
Although the study found that patients’ and staffs’ views about PDE were largely favourable, a number of suggestions for improvement and optimisation emerged. The literature supports the findings that some patients thought teaching materials and the way they were used could be biased [
4,
7,
9,
12,
14,
19,
21], and that patients wanted a wider range of teaching methods to be used, particularly active learning methods [
7,
22,
23] and seeing dialysis treatments in action [
16]. The diversity in patients’ preferences for different teaching methods suggests it would be appropriate for a patient’s preferred learning style to be assessed ahead of starting PDE in line with the principles of adult learning [
24].
As in other studies [
25], patients were provided with lots of information, and some complained of information overload. They wanted less detailed factual information with more time spent on helping patients to apply information to their own lives, which suggests that PDE may need to be re-balanced away from a reliance on information-giving. Recent initiatives to develop and trial decision support tools [
7,
17,
26] may go some way to helping with this. Likewise, opportunities for patients to talk to other patients already on RRT, could help them to envisage what life on dialysis is really like, as noted in previous studies [
8,
27], and help to counter the perception that staff may be biased or overly positive about treatments. However, this would need to be implemented with care, given evidence that patients’ stories can bias other patients’ treatment choices, irrespective of clinical advice [
28]. Whilst some of these improvements to PDE could be relatively easy to implement, the study identified two additional themes which potentially have more fundamental implications for PDE: differences in perspective between staff and patients; and the influence of patient experience.
Several important differences in perspective emerged from the data. Our study suggests that staff and patients may not conceptualise PDE in the same way, with staff focussing on formal PDE sessions and discussions during out-patient appointments, whilst patients appear to place additional value on more informal education, arising from conversations with staff and other patients. However, for this to contribute positively to patients’ treatment decision-making, staff who are not PDE specialists, from across the spectrum of renal services, would need to be informed enough to chat with patients about the full range of treatment options. This was not the case in this study. The small amount of relevant literature suggests this may be hard to achieve, as one study has found that renal nurses’ attitudes to RRT options are strongly associated with their own area of expertise and experience [
9], whilst a second study has recommended that all staff who come into contact with patients need experience of all treatment types in order to talk confidently with patients [
29].
The second notable difference in perspective between staff and patients was how treatment decision-making was conceptualised. Whilst staff thought patients should or do make decisions using a rational fact-based approach, patients mostly described a process of thinking about the possible impact of dialysis on everyday life and giving one highly individual reason for choosing their treatment. Although some previous studies have stressed the importance of renal patients using information to weigh options [
7], many other studies suggest that RRT treatment decision-making is not as simple as this, and that patients make decisions which accord with the context of their lives, values and identity [
25,
27,
29‐
31]. The choice of RRT is a complex and time-pressured serious decision for patients. Studies have found that when faced with these kinds of decisions, as in our study, patients tend to use heuristic or intuitive decision-making strategies, rather than more systematic strategies where information is used to weigh benefits and risks [
32].
We also found that many patients characterised treatment decision-making as very difficult or impossible. This could be explained by previous studies that found that patients may feel too ill in the pre-dialysis period to make a decision [
8], possibly reflecting reduced cognitive functioning associated with reducing kidney function [
14,
27]. Our patients’ reports of distress or trauma in the transition to RRT, whilst not new and reported in previous studies [
27,
30,
33], may also help to explain these reported difficulties with decision-making. Cancer studies have found that emotional distress can impede patients’ understanding of information [
34,
35], whilst the process of PDE itself may also contribute by adding emotional distress [
7]. In addition to this aspect of patient experience, our finding that patients valued opportunities to talk to other patients about their treatment experiences and did this informally, is in line with recent studies [
25].
Taken together, these findings suggest that PDE undertaken in the pre-dialysis period may not be effective for some patients, and the timing of PDE may need to extend beyond the pre-dialysis period. This may be appropriate for patients who are highly distressed in the pre-dialysis period, or patients who become open to other treatments only once they have themselves started treatment. Although the continuation of education beyond the pre-dialysis period is also supported by systematic review evidence [
21] and clinical guidelines [
15,
16], this would be a significant change in practice, as none of the study sites were providing on-going education or undertook formal treatment reviews as part of the RRT pathway.
Conclusions
Our findings have highlighted a number of important issues for PDE. The finding that patients want improvements to teaching methods and materials is not new, and demonstrates that PDE may still have some way to go in meeting patients’ expectations, despite these issues having been highlighted for 10 years or more. This would involve specialist staff having access to a more diverse range of educational materials and using teaching methods which suit each patient’s learning style. Whilst these improvements would be relatively easy to implement, we also conclude that the approach to PDE needs to change. A much more individualised approach is required which takes account of the wide variation in patients’ motivation and interest in making treatment choices. Staff would need to help patients apply information to their own lives, taking account of living circumstances, values and priorities, and consider how psychosocial barriers to preferred treatments might be overcome. This is more akin to counselling than education and would demand a higher level of skill and training for specialist PDE staff. In addition to these improvements to formal PDE, we also conclude that renal units need to recognise that informal education takes place through casual conversations between staff and patients. We therefore recommend that all renal staff should be trained about all treatment options, irrespective of their role in PDE, so that they are more in tune with the complexities and difficulties patients face when considering treatment options. All staff would then also be to handle patients’ informal queries in an informed and unbiased way.
Even if the above improvements are made to PDE, we conclude that significant proportions of patients will still not benefit from it. If in the pre-dialysis period, significant numbers of patients find treatment information too complex to process, find decision-making difficult, feel too ill or too distressed to make decisions, and if some patients become more open to some treatment options only once they are on RRT, then education must continue into the RRT treatment phase as a routine part of the pathway. We also suggest that decisions made in the pre-dialysis period may not be optimal for significant numbers of patients and should therefore be considered temporary, with reviews built into the pathway so that there are structured opportunities for patients to revisit their treatment choices. We conclude that the phrase ‘PDE’ is a misnomer and argue instead for referring to on-going RRT education which starts in the pre-dialysis period and continues through into dialysis treatment.
Finally, we argue for the provision of emotional support both pre-dialysis and in the first year, once RRT has begun. This could be incorporated into education, which would also need to take account of psychosocial barriers to treatment and coping strategies. This could help patients to make decisions that are best for them in the medium-term rather than in response to the very real distress they may experience as they approach the transition to RRT.
Strengths and limitations
The inclusion of four study sites, which varied in geographical location and patient demography, was a strength. The relatively large interview sample sizes lend weight to the findings, alongside the purposive patient sampling, which captured diverse patient experiences. The main limitation is that we did not set out to study PDE as a stand-alone topic. Had we done so, a mixed methods study would have been preferable, so that we could explore findings qualitatively and quantitatively. Another limitation is that sites may not be typical because they were working towards a target for home dialysis uptake. This had led to scrutiny of all aspects of the pathway, including PDE, and it might therefore be expected that PDE was more advanced in these sites compared with the rest of the country. However, the finding that improvements to PDE were still required suggests that there are enduring issues which are likely to be relevant to renal units elsewhere.
Acknowledgements
Professor Richard Lilford, Warwick University, contributed to the design and analysis of results of the main study (reported elsewhere).