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Patients’ Perceptions of Information and Education for
Renal Replacement Therapy: An Independent Survey by
the European Kidney Patients’ Federation on
Information and Support on Renal Replacement Therapy
Wim Van Biesen
1
*, Sabine N. van der Veer
2
, Mark Murphey
3
, Olga Loblova
4,5
, Simon Davies
6
1Renal Division, Ghent University Hospital, Ghent, Belgium, 2Department of Medical Informatics, Academic Medical Center, Amsterdam, The Netherlands, 3Irish Kidney
Association, Dublin, Ireland, 4A&R Edelman, London, United Kingdom, 5Department of Public Policy, Central European University, Budapest, Hungary, 6Department of
Nephrology, University Hospital of North Staffordshire, Stoke on Trent, United Kingdom
Abstract
Background:
Selection of an appropriate renal replacement modality is of utmost importance for patients with end stage
renal disease. Previous studies showed provision of information to and free modality choice by patients to be suboptimal.
Therefore, the European Kidney Patients’ Federation (CEAPIR) explored European patients’ perceptions regarding
information, education and involvement on the modality selection process.
Methods:
CEAPIR developed a survey, which was disseminated by the national kidney patient organisations in Europe.
Results:
In total, 3867 patients from 36 countries completed the survey. Respondents were either on in-centre
haemodialysis (53%) or had a functioning graft (38%) at the time of survey. The majority (78%) evaluated the general
information about kidney disease and treatment as helpful, but 39% did not recall being told about alternative treatment
options than their current one. Respondents were more often satisfied with information provided on in-centre
haemodialysis (90%) and transplantation (87%) than with information provided on peritoneal dialysis (79%) or home
haemodialysis (61%), and were more satisfied with information from health care professionals vs other sources such as
social media. Most (75%) felt they had been involved in treatment selection, 29% perceived they had no free choice.
Involvement in modality selection was associated with enhanced satisfaction with treatment (OR 3.13; 95% CI 2.72–3.60).
Many respondents (64%) could not remember receiving education on how to manage their kidney disease in daily life.
Perceptions on information seem to differ between countries.
Conclusions:
Kidney patients reported to be overall satisfied with the information they received on their disease and
treatment, although information seemed mostly to have been focused on one modality. Patients involved in modality
selection were more satisfied with their treatment. However, in the perception of the patients, the freedom to choose an
alternative modality showed room for improvement.
Citation: Van Biesen W, van der Veer SN, Murphey M, Loblova O, Davies S (2014) Patients’ Perceptions of Information and Education for Renal Replacement
Therapy: An Independent Survey by the European Kidney Patients’ Federation on Information and Support on Renal Replacement Therapy. PLoS ONE 9(7):
e103914. doi:10.1371/journal.pone.0103914
Editor: Giuseppe Remuzzi, Mario Negri Institute for Pharmacological Research and Azienda Ospedaliera Ospedali Riuniti di Bergamo, Italy
Received May 7, 2014; Accepted July 3, 2014; Published July 31, 2014
Copyright: ß2014 Van Biesen et al. This is an open-access article distributed under the terms of the Creative Commons Attribution License, which permits
unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.
Data Availability: The authors confirm that all data underlying the findings are fully available without restriction. All relevant data are within the paper and its
Supporting Information files.
Funding: Baxter Healthcare provided logistical and financial support for this initiative through an unrestricted scientific grant to CEAPIR. The funders hadnorole
in study design, data collection and analysis, decision to publish, or preparation of the manuscript.
Competing Interests: Wim Van Biesen has received travel fees on different occasions from Baxter, Fresenius and Gambro, and serves as a steering committee
member of a Fresenius sponsored study (IPOD-PD). Olga Lo
¨blova
´has been employed by A&R Edelman and has received consultancy fees from A&R Edelman and
Baxter. Simon Davies has received research funding and honoraria for lecturing and advisory board participation from Baxter and Fresenius. This does not alter the
authors’ adherence to all PLOS ONE policies on sharing data and materials.
* Email: wim.vanbiesen@ugent.be
Introduction
Clinical practice guidance for treatment of kidney disease
worldwide advocate the provision of information and education to
patients, as well as patient involvement in the process of selecting a
treatment modality [1–3]. Timely and adequately informing and
educating kidney patients may result in a more balanced modality
selection [4–6], promote independence and encourage self-
management [7], and may be linked to a better prepared start
of dialysis [8].
Previous studies suggested that the majority of patients wants to
be given information on different treatment options, and that they
want to participate in treatment selection [9,10]. Still, the quality,
comprehensibility and completeness of information and education
provided to kidney patients seem to be suboptimal at best [11–14].
This may partly explain why some patients have little knowledge
PLOS ONE | www.plosone.org 1 July 2014 | Volume 9 | Issue 7 | e103914
of their disease as well as a limited awareness of their different
treatment options [15,16]. Also, it has been reported that many
kidney patients perceive a lack of choice in whether to start renal
replacement therapy (RRT), or in which modality to select
[12,17]. Study results like these raised concerns among the
members of the executive committee of the European Kidney
Patients’ Federation (CEAPIR).
CEAPIR was founded in 1981 and is a non-profit umbrella
organization for 23 national kidney patients’ associations in
European countries ranging from Norway to Portugal, and from
the United Kingdom to Latvia. CEAPIR’s main aims are to
promote the prevention of kidney disease, establish access to
treatment for all European kidney patients, and set a European
quality standard for treatment of kidney disease. This quality
standard states –among other things– that clear information for
and education of patients is necessary to fully inform patients’
choices and decisions (www.ceapir.org).
To inform and support a plan of action to improve attainment
of this standard across Europe, CEAPIR wanted to explore the
current perception of information provision and education
amongst patients in Europe, as the scarce available evidence is
largely USA based [12,13,18].
Therefore, CEAPIR initiated a European project with the aim
to explore patients’ perceptions and satisfaction with regard to
information and education in general and on different modalities,
and their involvement in the modality selection process.
Methods
Survey development and dissemination
The executive committee of CEAPIR – consisting of kidney
patients and carers– initiated the survey. They framed and selected
the preliminary questions in English based on consensus during a
face-to face meeting, followed-up by several discussions via e-mail.
They started from CEAPIR’s minimal requirement regarding the
necessity of ‘‘clear and precise information and education of
patients at every stage of the treatment cycle to fully inform
patients on their choices and decisions on all available treatment
options’’ (www.ceapir.org). The preliminary questions were then
circulated to the national patient societies with a request for
feedback. This formed the basis for a draft English, electronic
survey that was pilot tested among members of the Irish Kidney
Association, and revised accordingly.
For dissemination, CEAPIR asked the national patient societies
to translate the survey in their local language, and subsequently
distribute it among their members. Societies were encouraged to
choose a dissemination strategy that matched their organisation’s
infrastructure and ongoing activities. Examples of strategies
included a paper version of the survey in the society’s periodical
magazine (Germany and Poland), sending it via e-mail while
combining it with another survey that was already planned on a
related topic (United Kingdom), or launching it on a society’s
website.
Data collection and analyses
A professional data management company collected the data
from November 2010 to November 2011; they also arranged data
entry and storage. Our primary data analysis consisted of
descriptive statistics, for which we presented results as valid
percentages. In order to investigate the association between
treatment decision making (being somewhat or very involved
yes/no; having a treatment choice yes/no) and overall satisfaction
with received kidney care (being very satisfied yes/no) we
calculated odds ratios (OR) and 95% confidence intervals (CI).
We explored the influence of recall bias (i.e., a systematic error
due to differences in accuracy or completeness of remembering
past experiences) on respondents’ recollection of receiving
information or education at the start of RRT we performed a x
2
test comparing responses of respondents who had been on their
current modality 2 years or less versus more than 2 years. P-values
below.05 were considered to indicate a statistically significant
difference between these groups.
To address large differences between countries regarding the
number of respondents, we performed a separate analysis for
countries with more than 20% of respondents (i.e. Poland and
Germany) vs other countries using x
2
test, with reporting of Odds
ratios and 95% confidence intervals.
All statistical analyses were performed using IBM SPSS
Statistics 22 by OL, WVB and SVDV.
The protocol and accompanying information for patients of this
retrospective study were evaluated by the ethical committee of the
Amsterdam Medical Centre (W14_126#14.17.0160), which
waived the need for ethical approval. Patient identification data
were anonymized for data storage by CEAPIR and data were de-
identified before data analysis. The fact that patients completed
and send back the questionnaire, after being informed on the
purpose and scope of the survey, was considered equivalent to
informed consent.
Results
In total, 3867 patients from 36 different countries responded to
the survey. Table 1 displays their characteristics. Germany and
Poland each contributed more than 20% of the respondents. The
majority of completed questionnaires were received by postal mail
through the national societies (58.6%), whereas 17.7, 15.6 and
8.1% were received via e-mail, the CEAPIR website and other
(social) media, respectively.
Information on kidney disease and treatment modalities
The majority of respondents (73.8%) reported to have been
provided with information on reduced kidney function in the year
prior to starting RRT, while 44.9% recalled receiving diet-related
information. More than one third (39.3%) did not remember
anyone speaking to them about alternative treatment options than
their current one or the possibility of changing treatments
(Germany = 34.6%, OR 1.03 (95% CI 0.88–1.20) and Po-
land =45.9%, 0R 1.65 (95% CI 1.40–1.99) versus other countries).
This did not differ between respondents who had been on their
current modality #2 versus .2 years (x
2
= 0.059, p = 0.8).
In general, respondents evaluated the information they got
about kidney disease or treatment options as very (46.1%) or
somewhat (32.3%) helpful; 11% answered they did not receive or
could not remember receiving any information (very useful:
Germany = 32.5%, OR 0.43 (95% CI 0.37–0.50) and Po-
land = 40.9%, OR 0.60 (95% CI 0.52–0.73) versus respondents
from other nationalities). For those who said to have received
information, the appreciation differed between sources and
modalities: Figure 1 shows that health care professionals were
more frequently scored as a helpful information source than
patient organisations, websites or social media. Furthermore,
respondents were more often satisfied with information provided
on in-centre haemodialysis and transplantation compared to
information on home-based therapies, with which approximately
a third of respondents reported to be (very) unsatisfied (Figure 2).
Patient Perception on Dialysis Information
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Table 1. Respondents’ characteristics (total n = 3867).
Characteristics Respondents
a)
Age (years)
18 to 29 245 (6.7)
30 to 49 990 (27.2)
50 to 69 1828 (50.2)
70 or older 579 (15.9)
Gender
Male 1944 (53.9)
Country of residence
b)
Germany 1063 (29.9)
Poland 772 (21.7)
Ireland 269 (7.6)
Hungary 187 (5.3)
Portugal 186 (5.2)
Austria 183 (5.1)
Lithuania 136 (3.8)
Finland 120 (3.4)
United Kingdom 114 (3.2)
Italy 93 (2.6)
Current employment status
Employed 1340 (37.6)
Not employed 992 (27.8)
Retired 1145 (32.1)
Other 91 (2.6)
Time between kidney disease diagnosis and start of first treatment
Less than 3 months 973 (26.6)
3 to 12 months 548 (15.0)
More than 12 months 2137 (58.4)
Treatment modality at the time of survey completion
In-centre haemodialysis 1988 (52.6)
Home haemodialysis 91 (2.4)
Peritoneal dialysis (APD, CAPD) 276 (7.3)
Transplanted 1427 (37.7)
Being prepared for dialysis 257 (6.8)
Time on current modality
Less than 1 year 151 (25.9)
1 or 2 years 190 (32.5)
3 to 5 years 122 (20.9)
More than 5 years 121 (20.7)
Currently listed on transplant waiting pool
Yes 871 (35.2)
No 1498 (60.6)
Don’t know 101 (4.1)
Abbreviations: APD, automated peritoneal dialysis; CAPD, continuous ambulatory peritoneal dialysis; RRT, renal replacement therapy.
a) Numbers in this column refer to number of respondents (valid %).
b) Top 10 countries with most respondents, together holding 87.8% of all respondents. Other countries were Azerbaijan, Belarus, Belgium, Bosnia and Herzegovina,
Bulgaria, Croatia, Cyprus, Denmark, Estonia, France, Georgia, Greece, Iceland, Latvia, Norway, Romania, Russia, San Marino, Slovakia, Slovenia, Spain, Sweden,
Switzerland, The Netherlands, Turkey, Ukraine.
doi:10.1371/journal.pone.0103914.t001
Patient Perception on Dialysis Information
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Treatment decision making
Almost half of respondents indicated that they had been very
much (46.7%) involved in the process of selecting a RRT modality
(Germany = 46.9%, OR 1.12 (95% CI: 0.96–1.30) and Po-
land = 31.6%, OR 0.58 (95% CI 0.49–0.70) vs other countries)
or somewhat (28.2%) involved. A little more than half (51.2%)
perceived they could choose their treatment method (Germany:
57.9%, OR: 1.31; 95% CI 1.12–1.52 and Poland 44.8%, OR
0.77; 95% CI: 0.65–0.91 versus other countries), whereas 48.8%
explicitly stated they could not or did not know. Examples of
reasons for not having a choice, which respondents provided as
free text comments, were that not all modalities were provided in
their centre (mostly for home-based therapies), or presence of
medical contra-indications. Almost one fourth (22.8%) remem-
bered the medical team suggesting at some time that their social
circumstances (e.g., living conditions, work) were a contra-
indication for a certain RRT modality (Germany = 24.8%, OR
1.14 (95% CI 0.96–1.35) and Poland = 16.7%, OR 0.69 (95% CI
0.56–0.86) versus other countries).
Almost all respondents were somewhat (31%) or very (63.2%)
satisfied with the overall level of their kidney care (very satisfied:
Germany = 77.8%, OR 2.51 (95% CI 2.12 to 2.97) and Po-
land = 42.1%, OR 0.52 (95% CI 0.44 to 0.61) versus other
countries). It appeared that participants who felt they had been
involved in the modality selection process were more likely to be
very satisfied than those who had not been involved (OR 3.13
(95% CI 2.72–3.60); Germany: OR 2.43 (95% CI 1.78–3.31) and
Poland: OR 3.30 (95% CI 2.72–3.60). We found a similar
association between perceptions of having a choice of treatment
and overall satisfaction with care (OR 2.25 (95% CI 1.97–2.56;
Germany: OR 1.79 (95% CI 1.34–2.40) and Poland: OR 2.10
(95% CI 1.57–2.81). Time since start dialysis being ,2or.2
years did not influence any of these results.
Education and support
More than half of the respondents (64.2%) did not receive or
could not remember receiving education on how to manage
kidney disease in their daily life (Germany = 84.8%, OR 2.50
(95% CI: 2.00–3.00) and Poland = 36.4%, OR 0.25 (95% CI
0.21–0.30) versus other countries). We found no difference
between participants who had been on their current modality #
2 versus .2 years (x
2
= 3.3, p = 0.07).
Regarding respondents’ employment status at the time they first
started RRT, 27.8% were retired and 3% unemployed. Of the
remaining respondents, 22.1% indicated that starting RRT did
not affect their employment status. However, 48.4% stopped
Figure 1. Respondents’ scores on how helpful different information sources on kidney disease have been. Abbreviations: HD,
haemodialysis, PD, peritoneal dialysis.
doi:10.1371/journal.pone.0103914.g001
Patient Perception on Dialysis Information
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working, 20.7% reduced their working hours, and 8.7% changed
their job. Of respondents who stopped working or changed their
job due to their kidney disease, only 22.8% received a training or
education to support them with finding a new job.
When asked how satisfied they were with the level of access to a
dietician, most participants appeared to be somewhat (34.9%) or
very (36.7%) satisfied, while for 9.6% support from a dietician was
completely not available (very satisfied: Germany = 60.4%, OR
1.09 (95% CI 0.94–1.27) and Poland = 63.3%, OR 1.24 (95% CI
1.04–1.47) versus other countries). For social workers these
percentages were comparable (34.3%, 32.3%, and 12.2%)(very
satisfied: Germany = 35.7%, OR 0.56 (95% CI 0.48–0.65) and
Poland = 70.1%, OR 2.36 (95% CI 1.98–2.82) versus other
countries).
Up to 40.2% of participants did not know whom to address a
complaint to, should they ever be dissatisfied with their treatment.
Overall, 20.0% indicated that financial cost was a barrier for
optimal treatment for them (Germany = 11.9%, OR 0.78 (95%
CI: 0.62–0.98) and Poland = 23.4% (95% CI 1.44–2.17), versus
other countries). Patients reporting a financial barrier tended to be
less satisfied with their overall care (all respondents OR 0.42 (95%
CI 0.35–0.50); Germany: OR 0.30 (95% CI 0.20–0.44) and
Poland OR 0.65 (95% CI 0.46–0.92)).
Discussion
This paper reports the results of a CEAPIR initiated survey that
succeeded in involving nearly 4,000 kidney patients from 36
European countries. In general, survey participants reported to be
satisfied with the information they received on their disease and
treatment, and felt they had been involved in selecting their
treatment modality. Moreover, we found being involved to be
positively related to overall treatment satisfaction. Nevertheless,
more than half of respondents perceived they could not freely
choose their modality, and information to facilitate selection of
alternative modalities seemed suboptimal, with half of respondents
not remembering being presented another modality than their
current one. Also education to support the management of kidney
disease in patients’ daily and professional lives was perceived
suboptimal.
Modality selection: a free and informed choice?
A substantial part of our respondents did not recall that they
were provided with information on alternative modalities. This
confirms previous research reporting similar percentages of
patients who felt that different therapies were not presented
equally for selecting a modality [12,18]; a systematic review of
qualitative studies [13] found that patients did not have the
information they wanted on treatment options. Our finding that
Figure 2. Respondents’ satisfaction with information they had on treatment options.
doi:10.1371/journal.pone.0103914.g002
Patient Perception on Dialysis Information
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participants were more satisfied with information on in-centre HD
than with home-based therapies is also in line with other studies
[5,12,18], as was the proportion of respondents perceiving a lack
of choice when selecting a modality [12].
There are several potential explanations for the process of
modality selection being suboptimal with regard to information
and freedom of choice. First, not all potential modalities may be
available in a centre, which was also brought forward as a reason
by some of our respondents. Morton et al. [13] found that
resources often formed the basis of treatment decisions, and that
limited access to centre-based dialysis was a consistent reason for
choosing home-based therapies. A Danish study suggested that a
genuine offer of out-of-centre dialysis would be needed to
encourage greater use of modalities other than in-centre haemo-
dialysis [10]. These findings, together with our study results, may
warrant future research to investigate to what extent different
modalities are actually being offered to kidney patients in
European countries. This would inform health policy makers on
if and how to stimulate centres to offer all modalities to their
patients. It does not necessarily imply that all modalities should be
provided in each centre because this may hamper building of
experience. Instead, it may be better to, for example, create
collaborative structures in which patients can be referred for
training on home-based therapies to one central location, and
organisational (and financial) barriers to such referrals are
addressed.
Secondly, also late referral may jeopardise a free choice of
treatment modality. Late referral has been suggested to negatively
influence the selection of home based modalities [19], and to
contribute to an unbalanced modality mix [20]. More than half of
our survey participants recalled the time between the diagnosis of
their kidney disease and the start of RRT to be less than three
months. Even if we assume that part of these respondents
underestimated this time period [12], still for many of them the
time would be considered too short for optimal preparation of the
patient, e.g., to create an arterio-venous fistula. However, several
authors have demonstrated that in centres with dedicated
programmes, free modality choice can be offered despite late
referral [21–23]. Future research may explore the availability of
such programmes across Europe.
Thirdly, some health care professionals may refrain from
providing information on a particular modality due to their
perception of the presence of contra-indications [24], most of
which are not absolute [3] and often based on psycho-social
concerns [13,25]. Also in our survey we found medical as well as
social contra-indications as perceived reasons for not being offered
a certain treatment option. Yet, several studies demonstrated that
health care professionals’ perceptions may vary widely, depending
upon their experience, background, training and personal beliefs
[26,27]. Consequently, part of the kidney patients may be denied a
fully free choice based on the presumptions of their healthcare
workers. Application of a tool guaranteeing presentation of all
available treatment options in a systematic way to patients rather
than a tool asking (dichotomous) questions, or the opinion of the
educator on what might be of interest to the patient, might help to
assure optimal and unprejudiced provision of information.
Patient involvement in modality selection
We found that a large majority of kidney patients participating
in our survey felt that they had been involved in the process of
selecting a treatment modality, which appeared to be associated
with higher levels of satisfaction with current treatment. Based on
their qualitative study, Lee et al. [10] suggested that patients want
to participate in choice of modality, but that especially for those on
in-centre haemodialysis, selection of alternative modalities was
often not facilitated. In general, patients seem increasingly willing
to, and asking for, being involved in clinical decisions [28]. At the
same time, the model proposed by Flyn et al. [9] made a
distinction between patients’ preferences regarding receiving
information, deliberating that information, and making the final
treatment decision. From that study it appeared that all patients
want to be informed, but that their preferences for being involved
in the deliberation and decision process may vary. Additionally,
there is debate on to what extent it is ethical to leave treatment
decisions entirely to patients [29]. Nevertheless, health policy
makers increasingly advocate patient involvement in decision
making, which asks for ways to further optimise this in clinical
practice.
One way may be to provide patients with information on
experience from other patients, which may strongly influence their
decision making [13]. In line with this, Winterbottom et al. [30].
concluded based on a study among students that information
provided by patients was considered more influential than when
obtained from healthcare professionals. Participants in the
CEAPIR survey gave most value to physicians and nurses as a
source of information on kidney disease, but unfortunately it was
not specifically asked to value information coming from other
patients.
Another potential field of focus is the development of tools to
engage kidney patients in the decision-making process with their
care providers [31,32]. For renal replacement modality selection,
such decision aids should at least mention and explain all available
options, taking into account that therapies might be valued
differently by different patients for different reasons [33].
Furthermore, the format of clinical practice guidelines should be
constructed in a way that stimulates an equal conversation
between patient and healthcare worker, rather than just providing
a unidirectional flow of information from the clinical perspective
[34].
Information on impact of aspects of disease and
treatment on daily living
More than half of the patients in our survey did not remember
receiving advise or information on how to manage their kidney
disease in their daily life. In the systematic review by Morton et al.
[13], the majority of studies indicated that patients and family
members were concerned about how to handle practicalities of
treatment in their daily life. In most of the included studies,
patients judged that provided information was too little focused on
minimising impact on daily activities such as working, hobbies,
care for children and grandchildren, and too much on length of
survival. So, although about 2 out of 3 patients in our survey
indicated they satisfied with the availibility of a dietician or a social
worker, it is unclear in how far the advice provided by these
professionals was really helpful to solve the problems of daily living
of attributable to the disease. It is remarkable for example that
only one out of four patients in need for a new job indicated they
had received assistance for this important aspect of their care.
Strengths and weaknesses of the study
To our knowledge, this survey is the first to explore the topic of
information and education among such a large number of kidney
patients. Furthermore, no previous study managed to involve so
many different countries, making this survey the first project to
explore this topic on a broad international level.
Despite being a relatively small sample from all kidney patients
in Europe, our respondents appeared to be representative with
regard to treatment modality. For countries participating in the
Patient Perception on Dialysis Information
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ERA-EDTA registry the percentages of prevalent patients
receiving HD in 2011 ranged from 23.8 to 83.6%, 3.7 to 11.3%
were treated with PD, and 6.6 to 71.9% had a functioning graft
[35]. In our survey, these percentages were 55%, 7.3% and 37.7%
for the respective treatment modalities. With regard to the age
distribution, our cohort might have been slightly overrepresented
in the middle age class (50–69 years) and underrepresented in the
age category of 70 years and older. It is unclear from the current
survey whether the use of paper survey vs electronic survey only
has resulted in more patient participation. However, it is clear that
countries were the survey was also available as a paper version are
overrepresented in this survey.
We were not able to further investigate the representativeness of
our survey participants due to the unsolicited and sometimes
indirect nature of the national dissemination strategies, an aspect
that might induce selection bias. This prevented us from
determining the size and characteristics of the original study
population. Apart from impeding calculation of the survey’s
response rate, it also hampered a precise comparison between
responders and non-responders. In general, younger patients with
higher education levels and better health status are more likely to
participate in a study like ours than their older, sicker and less
educated counterparts [18,36]. Previous studies suggested that
including healthier patients tend to report higher levels of
satisfaction with care, which may lead to a too positive picture
based on our results. At the same time younger, higher educated
participants may have the opposite effect. So, we assume that
ultimately the potential selection bias did not significantly
influence our results [36,37].
At the time of initiating the survey, CEAPIR did not intend it to
be a research project, but rather an exploration of perceptions
among the patients they represent. Although they made an effort
to incorporate feedback from national patient organisations and
pilot-tested the survey among Irish patients, a strict methodology
to ensure unambiguous interpretation of the questions was lacking.
On one hand, uniform interpretation may have been further
jeopardised by having the survey translated locally without
resources to apply a validated method [38]. On the other hand,
this most likely decreased selection bias, which in turn increased
the representativeness of the study. Also, the survey captured
patient perceptions rather than actual practices of information
provision and education across Europe. While our results may
provide valuable pointers for selecting areas for further research,
we cannot use them to determine whether information or
education was not provided, or whether it was provided and
patients did not recognise it as such or did not remember it. Even
though our analyses suggested no effect of recall bias on our
findings, these limitations warrant caution when drawing conclu-
sions based on our study results.
Future research
Based on our study findings, we suggest that it is worthwhile to
further investigate the extent to which dialysis centres in Europe
offer all modalities to their patients. Additionally, future research
may explore the availability of dedicated vascular access
programmes in European countries, as well as their effect on the
freedom of modality choice for European kidney patients.
CEAPIR delegated the translation and dissemination of the
survey to national patient organisations. We assume that having
the survey translated in patients’ own language greatly increased
the number of respondents. However, future initiatives should try
to formalise translation by allocating resources to facilitate the use
of accepted methods. This will contribute to the methodological
rigour of survey-based studies, and improve interpretation of the
results. Interestingly, countries that choose to distribute the survey
on paper managed to involve a large number of patients. Although
we cannot calculate actual response rates, we hypothesize that
using paper-based questionnaires may be a way of increasing
response and decreasing selection bias in patient populations that
are relatively old and with a high disease burden. Further research
on this topic is of high relevance. Similar future initiatives should
therefore consider to provide surveys on paper in addition to
electronic formats.
An analysis of the data separate for Germany and Poland (the
two largest contributors) versus other nationalities, demonstrated
that for some topics, perceptions seem to be country-specific,
however without substantial change in the general interpretation
of the data. It would be interesting to further explore which
characteristics (of patients, culture, the health care system, etc.)
contribute to these differences across Europe.
Lastly, many of our survey participants provided additional
information and explanations as free comments. In the view of the
richness and magnitude of these data, we are considering to
summarize these individual comments in a representative by
means of a future qualitative, thematic analysis.
Conclusions
This study suggests that part of the gap between desired and
observed modality mix of renal replacement therapies in Europa
may be due to suboptimal information provision to patients, as
well as to patients not being offered the full range of treatment
options in an equal and unbiased manner. There was an
association between involvement in modality selection and patient
satisfaction. Health care providers, researchers and guideline
developers should focus on developing and applying tools to
facilitate the engagement of patients in modality selection.
Acknowledgments
The authors and CEAPIR want to thank all those who contributed to this
project, first of all the patients who participated, but also all the volunteers
and nurses that facilitated the survey’s distribution.
Author Contributions
Conceived and designed the experiments: WVB SVDV MM OL.
Performed the experiments: MM OL. Analyzed the data: WVB SVDV
OL. Contributed reagents/materials/analysis tools: OL MM. Contributed
to the writing of the manuscript: WVB SVDV OL SD.
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