Nephrol Dial Transplant (2011) 0: 16

doi: 10.1093/ndt/gfr055
Original Article
Patient attitudes towards the arteriovenous fistula: a qualitative study
on vascular access decision making
Wang Xi
1
, Lori Harwood
1
, Michael J. Diamant
1
, Judith Belle Brown
2
, Kerri Gallo
1
,
Jessica M. Sontrop
3
, Jennifer J. MacNab
3
and Louise M. Moist
1
1
Division of Nephrology, Department of Medicine, London Health Sciences Center and the University of Western Ontario, London,
Canada,
2
Centre for Studies in Family Medicine, Department of Family Medicine, University of Western Ontario, London, Canada and
3
Department of Epidemiology and Biostatistics, University of Western Ontario, London, Canada
Correspondence and offprint requests to: Louise M. Moist; E-mail: louise.moist@lhsc.on.ca
Abstract
Background. The use of arteriovenous stulas (AVFs)
among hemodialysis (HD) patients has been consistently
associated with lower rates of morbidity and mortality;
however, up to 30% of eligible patients refuse the creation
or cannulation of an AVF. We aimed to understand the
attitudes, beliefs, preferences and values of patients who
refused creation or use of an AVF.
Methods. With qualitative methodology, we conducted
semi-structured interviews with 13 HD patients (Canada,
2009), who previously refused creation or use of an AVF.
Three independent analysts reviewed interview transcripts.
Results. We discovered three main themes that impacted
the decision to refuse a stula: (i) poor previous personal or
vicarious experiences with the stula, including cannula-
tion, bleeding, time commitment and appearance; (ii)
knowledge transfer and informed decision making. Patients
identied information from other patients to be as impor-
tant as information from health care workers, that informa-
tion on vascular access (VA) was presented but not
understood and that timing of information was crucial with
information overload at the start of dialysis and (iii) main-
tenance of status quo and outlook on life. Some patients
stated they live day-to-day without being inuenced by the
mortality risks with a catheter.
Conclusions. AVF refusal is multifactorial and depends
on individual patients. Although nephrologists consider
the stula to be the optimal VA, patients do not think in
the same terms of reducing infection rates but focus on the
practical day-to-day use of their VA and its inuence on
their quality of life and future outlook.
Keywords: hemodialysis; vascular access
Introduction
As of 2007, ~50% of Canadian hemodialysis (HD) patients
and 47% of American HD patients had an arteriovenous
stula (AVF) for vascular access (VA) [1]. In comparison
with arteriovenous grafts and central venous catheters
(CVCs), the use of AVFs are consistently associated with
lower rates of morbidity and mortality [27]. However,
recent studies demonstrate a marked decline in the preva-
lence of AVFs and an increase in CVCs within Canada,
Australia and countries throughout Europe [1, 8, 9]. The
decline in use of AVFs can be attributed to patient, facility
and health care system factors [10]. In our recent study,
80% of the nephrologists indicated that patient refusal is a
major barrier to creating a mature AVF [11].
The research on decision making among patients with
end-stage renal disease (ESRD) focuses on patient refusal
for dialysis, withdrawal from dialysis or choice of dialysis
modality [1214]. To our knowledge, there are no studies
on the patients decision-making process in choosing a
form of VA.
Informed decision making is an important pillar in pa-
tient care. Patients who show greater understanding of
chronic kidney disease from educational classes are more
likely to choose dialysis with a stula [15]. Patient factors
can also inuence decision making, as patients >65 years
old with stulas are more likely to be bothered by pain,
bleeding, bruising, swelling and appearance of their stula
[16].
To explore the decision-making process, we conducted a
series of 13 in-depth interviews with HD patients who had
previously refused an AVF. We sought to understand how
their attitudes, beliefs, preferences and values inuenced
their choice of VA.
Materials and methods
We used a qualitative methodology with a phenomenological approach to
explore patient attitudes, preferences, beliefs and values when deciding on
VA choices for patients on chronic conventional HD.
Patient recruitment
We recruited patients from a tertiary care HD unit in London, Canada,
between June and August of 2009. Patients dialyzing with a catheter, who
were deemed eligible for an AVF by their nephrologist, but refused cre-
ation or cannulation of the AVF were eligible for the study. We excluded
The Author 2011. Published by Oxford University Press on behalf of ERA-EDTA. All rights reserved.
For Permissions, please e-mail: journals.permissions@oup.com
NDT Advance Access published March 15, 2011

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patients who did not have the capacity to provide informed consent, could
not speak English well enough for an open-ended interview or were on the
waiting list for a kidney transplant.
From eligible patients, a purposeful selection was carried out to sample
for maximum variation with respect to age, gender, length of dialysis,
previous failed AVFs, cause of renal failure and previous use of peritoneal
dialysis. Our sampling strategy was chosen to maximize the diversity of
patient experiences [17].
Data collection
We created an interview guide based on a literature review of VA. The
guiding questions and potential probes kept the interview focused on
patient experiences, preferences and beliefs. The guide was modied as
interviews and data analysis progressed to include new questions and
themes derived from initial interviews.
An independent interviewer (W.X.), not involved in direct patient care,
conducted all the interviews using the iterative approach. Semi-structured
interviews were tape-recorded and transcribed verbatim. Field notes were
taken on patient appearance, behavior, speech and mood, as well as any
nonverbal behavior and interviewer reections. Interviews lasted between
15 and 45 min.
Analysis
Transcripts were analyzed independently by three reviewers (L.M.M.,
L.H. and W.X.) through line-by-line coding. A series of common themes
were determined after three interviews. This was reviewed again with
realignment of the themes after 10 interviews. Saturation was reached
when no new themes were identied after a total of 13 interviews. Exem-
plar quotes were extracted based on the thematic analysis with ller words
deleted when they have been agreed upon to have no impact on the
statement.
Trustworthiness and credibility
We purposefully sampled patients of different ages, genders, previous
stula use, time on dialysis, cause of renal disease and previous use of
alternative dialysis modalities to enhance the spectrum patient experien-
ces. Sample size estimation was arrived at by rst by consulting other
qualitative studies of similar design, which provided an initial range,
and secondly, using the principle of theoretical saturation, whereby data
are collected until no new information is obtained from subsequent data
collection [18]. While a larger sample would add to the depth of the results,
substantive topics and strong patterns of similarity within those topics
were evident after interviews with 13 participants, thus indicating a suf-
cient level of saturation.
An independent analyst familiar with the experience of renal patients
and renal disease determined that the themes were credible in the perspec-
tive of these patients. Our purposeful sample improves transferablility to a
generalized patient population assuming that the patients are in centers
with similar incidence and prevalence of different VA use and have similar
educational programs. Using an iterative approach, we conrmed various
overarching themes elicited during initial interviews in the latter ones,
supporting a reliable thematic analysis. This study was approved by the
Health Sciences Research Ethics Board at The University of Western
Ontario.
Results
The sample was selected from a population comprised of
147 patients receiving chronic HD using a catheter, of
which 48 (33%) patients were eligible for a stula. Of those
identied, 32 (68%) patients refused creation of a new
stula or cannulation of an existing stula. We interviewed
13 patients, 7 males and 6 females (Table 1). Six patients
had a previous AVF.
We observed three major themes surrounding the deci-
sion to refuse a stula: negative personal or vicarious ex-
periences with the stula, knowledge transfer and informed
decision making and acceptance of status quo (Table 2).
Impact of previous personal or vicarious experiences
with a stula
Six of thirteen patients in our study had at least one pre-
vious stula. Other patients learned about the stula
through talking with or seeing other patients with a stula.
We identied four common experiences that inuenced the
participants decision to reject a stula: failure to mature,
difculty with cannulation and pain, bleeding from the
stula after needle withdrawal and consequent time com-
mitment and appearance of the stula (Table 2).
Patients mentioned that previous experiences of failure
to mature were major deterrents to obtaining another
stula.
I was hoping that [my stula] would develop to the
point where it would be more successful but that didnt
happen. And I followed all the rules. I did all the exer-
cises, but that wasnt enough.
Cannulation pain and discomfort due to needles was
common.
Thats a pretty big needle and its uncomfortable. And
then, when youre lying here, you cant move, at all,
because it used to interfere with it. I tried to put the cream
on to desensitize. That really didnt do very much.
The rate of successful cannulation was another patient
concern given the low prevalence of stula use in this unit,
though none of the participants refused cannulation
permanently.
[Nurses] dont have experience with stula. They have
experience with the line . . . its maybe a good idea that if
you have stula you get the same person to poke your
arm . . . maybe just teach the patient how to do it.
Persistent bleeding and consequent time commitment
was an issue.
After dialysis, sometimes I have to stay longer, you
know? Because the bleeding didnt stop. And sometimes
I just come back because of bleeding. Its a different
story every time.
Body image was also important to a few patients, as one
patient stated about her vicarious experiences,
she had [the stula] in all her life and she had big welts,
big bumps, all in her arm. And then at that time, they
were going to change it to the other arm. She had a lot of
problems. Her arm was just swelled up.
Knowledge transfer and informed decision making
We explored how patients obtained and processed informa-
tion and how this inuenced their decision on type of VA.
Patients reported obtaining information from health care
professionals, other dialysis patients and the Internet.
Meanwhile, some patients perceived a lack of information
(Table 2).
Patients with ESRD within the London Health Sciences
Centre system receive information in many forms: meeting
2 W. Xi et al.

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with a nephrologist, receiving written material, attending
instructional courses, receiving teaching from the VA nurse
and planned and impromptu interactions with other health
care professionals. The information provided greatly inu-
enced patients decision either for or against the stula.
The paperwork that the [VA nurse] gave me was very
well done . . . . I sat down and looked at it a few times and
decided to [go for the stula].
Interactions with health care professionals were
important.
I was told that [the stula] was the best way to go. And
that dialysis would work better if I had a stula. So that
basically made up my mind . . . and if I ever do have to
go on dialysis, its already there and waiting.
In deciding to forego another stula after a failed one,
health care professionals were also a key inuence.
[The doctor] only gave me a thirty percent chance that it
would work again. And thats when I decided well Im
not going to go through all that again if Ive only got a
thirty percent chance. So I use the catheter . . . I think if
Table 1. Participant characteristics (N 13)
a
Characteristics n (%)
b
Mean age, years (SD) 69 (12)
Gender
Male 7 (54)
Female 6 (46)
Mean time on dialysis, months (SD) 47 (28)
Previous use of PD 1 (8)
Previous transplant 1 (8)
Previous AVF use 6 (46)
Previous AVG use 2 (15)
Previous CVC use 6 (46)
a
Participants diagnosis causing renal disease included diabetes, hypertension, IgA nephropathy,
vasculitis, malignancy, renovascular disease and familial disease. AVG, arteriovenous graft; PD,
peritoneal dialysis; SD, standard deviation.
b
Unless otherwise indicated.
Table 2. Themes surrounding VA decision making
Theme Comment
I. Impact of previous personal or vicarious experiences
Failure to mature Ive seen that they dont work and they cant get them to work and
I just wasnt interested in [the stula].
Cannulation I dont want somebody poking at my arm every time I come here . . .
Ive seen one nurse will take forever to try and the next thing
you know shes got somebody else there trying so theyre poking
at your arm.
Bleeding . . . by the time I got home the coat I had on was loaded with blood.
Body image Her arm was just swelled up. And after that I seen another who had
an awful arm and they had to go back to [a catheter].
II. Knowledge transfer and informed decision making
Healthcare professionals I was told that [the stula] was the best way to go. And that dialysis
would work better if I had a stula. So that basically made up my mind.
Yeah OK. Ill get the stula. And if I ever do have to go on dialysis,
its already there and waiting.
Dialysis-patient peers They said theyve had more than one [stula]. Theyve had several.
And theyve had problems with it so theyve had to get new ones.
And it all takes time . . .
Perceived lack of knowledge My doctor actually sent me to the hospital but he didnt tell me why
or anything. While I was in there, they put the [catheter] access in
and started me on dialysis. I didnt know anything about it.
III. Patient acceptance of status quo
Lifestyle limitations Ive been in a pool a few times, I just cover [the catheter] all up with
plastic and tape it over.
Lack of actual complications or concern for complications Ive had this [catheter] for two years and I was running with two
catheters and as long as you pay attention and clean yourself
properly and watch for infection, you wont get any.
Complications of stula creation Most of the people that have been here have passed on because
they keep fooling around with . . . putting [the stula] in your arm,
then they take it out.
Focus on the present, day-to-day living . . . nobody can predict what your health is going to be in the future
I dont think. I feel pretty good right now, but you live from day to day.
Patient decision making on AVF 3

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hed given me a fty-fty chance, I probably would have
had it again.
Patient-to-patient knowledge transfer also played an im-
portant role. One patient with a positive perception of the
stula stated
most of the information came by word of mouth. To me,
Im one of these guys, I want to see before I do. Two or
three people I associate with, they all had [the stula].
They didnt seem to be complaining about it.
However, most patients used other patients experiences
as a deterrent to having a stula.
Two or three guys that had [the stula], they really had a
lot of problems with their entire arm and all over . . . two
that I know that went back to up here [pointing to cath-
eter site] have had it for quite a while. The arm thing just
didnt seem to work.
Several patients perceived they did not have enough in-
formation about different VAs to make an informed choice.
My doctor actually sent me to the hospital but he didnt
tell me why or anything. While I was in there, they put
the access in and started me on dialysis. I didnt know
anything about it.
Some patients had gaps in their knowledge about the
stula.
I misunderstood what a stula really does. I thought it
was something that they stuck in your arm and then there
was an access to that where they just plugged it in or
something. I didnt realize that they stuck needles in your
arm.
Patient acceptance of status quo
Patients identied the following as justication for use of
the catheter: acceptance of catheter limitations on lifestyle,
lack of actual catheter complications, lack of concern for
potential catheter complication, fear of potential complica-
tions with stula creation and attitudes about longevity and
preference to focus on the present including living for today
(Table 2).
Patients emphasized overall satisfaction with their cur-
rent catheter despite awareness of the lifestyle limitations of
their catheter.
it would make my quality of life a little better using a
stula rather than the catheter . . . . Id be able to shower
and be able to go swimming, but Ive pretty much re-
signed myself that the catheter is the only way for me to
go so I dont shower. I take a bath.
Patients minimized chances and occurrences of compli-
cations. One patient mentioned that they are using the cath-
eter because the catheter has been successful and has done
the job. Another patient mentioned that I havent had an
infection in this one yet There appeared to be a mentality
that despite a previous infection, the current one has been
functional and uncomplicated, with several patients using
similar phrases to ever since then its been all right, refer-
ring to their newly placed catheter.
Patients were aware that [the stula] was considered to
be a little safer, a little less chance of getting an infection.
Despite the awareness, infectious complications were
minimized.
Ive seen two or three that had a bad infection. From
what the doctor told me, as long as you keep [your
catheter] good and clean you wouldnt have an infection
. . . .The rst time I ever had [an infection], I didnt know
what might happen. [The doctor] said dont worry about
it, well just pull that one out and put another one in and
give you some antibiotics and it should be okay.
Patients also did not want the hassle and complications
of undergoing stula placement. One patient commented
on her preference not to have a surgery, Ive had 37 oper-
ations. I dont want any more. Another patient believed
other patients death was related to a lack of success of the
stula, stating
most of the people that have been here have passed on
because they keep fooling around with . . . putting [the
stula] in your arm, then they take it out.
Patients future outlook was important.
its a big step [to get a stula] . . . . I look at it from a
different perspective than most people. Im 69-years of
age in December of this year and Ive got to keep asking
myself how much does my body take, because every
time I change something my body reacts accordingly and
I dont know how much it will take.
Another patient who had considered stopping dialysis
altogether was strongly against the stula stating that if
they wanted to move [my catheter] from this spot to my
arm, I wouldnt take dialysis. Patients also reected on
hopes for alternatives to dialysis. Despite being ineligible
for a transplant, one patient stated Im hoping theyll put
me on the [transplant] list again. Im young.
In contrast, and to reinforce the importance of outlook on
life, one patient who actually decided to obtain a stula
through the course of the study mentioned the long-term
benets of the stula.
over time the stula will outlast and outwork your cath-
eter because the catheter eventually has to be cleaned
out, repositioned. If the stula is working properly,
you wont have that problem. Itll last for years . . . in
the long run that supercedes anything else . . . . I would
rather look at the green grass, than the roots of the grass.
. . .You have to keep your attitude up. If you lose your
attitude, you will just go down and down. So, its another
day and another way of living.
Many patients, despite their preferences for dialysis with
a catheter, claimed that they would tell other patients that
they had to make up their own mind regarding choosing
an access for dialysis. Patients also recommended that you
4 W. Xi et al.

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have to have a reason and do a lot of research. One patient
who had a previously failed stula stated I guess I would
tell them to try the stula.
Discussion
Our study explored patients decision-making process with
regard to refusal of a stula. We elicited three major
themes: (i) previous personal or vicarious experiences with
a stula, (ii) knowledge transfer and informed decision
making and (iii) patient acceptance of the status quo.
Our ndings support dialysis patients preferences for a
shared decision-making process between the health care
team and patient, one of the major pillars in the patient-
centered health care model [19]. While a stula may be
recommended, a patient can turn down a stula for several
reasons, and a study recently published by our group
showed that 80% of nephrologists consider patient refusal
to be a major barrier for stula creation [11]. In our study,
the patients we interviewed were experiencing a wide spec-
trum of symptoms and altered quality of life from their
dialysis and comorbidities. Frustration with their disease
and value of current health can impact decision making
and health outcomes [20, 21]. For example, two patients
who perceived their doctors reassurance of a guarantee of
a successful procedure ended up with complications. These
patients may be less inclined for further interaction within
the health care system.
Patients made decisions using their own or vicarious
experiences with the stula. The spectrum varied from pa-
tients who would consider a stula again if chances of
success were higher to patients who would stop dialysis
if they had to obtain a stula. Many patients reported poor
overall outcome, including failure to mature and inability to
cannulate, as a major deterrent to having a rst or repeat
stula. Studies report a failure to mature rate of up to 65%,
likely due to creating stulas in patients who are less likely
to have successful maturation [22]. By establishing eligi-
bility criteria for stula creation, we can seek to decrease
the failure to mature rate and expose fewer patients to
negative vicarious experiences with the stula. Our study
also found that patients were concerned with the lack of
experience nurses had with cannulating a stula. At our
center, the high prevalence of catheter use and nursing staff
logistics reduces the experience of successful cannulation.
Although there were no patients who refused cannulation
permanently, poor experience with previous cannulations
or lack of knowledge of what cannulation involved were
cited as potential reasons against a patient consenting to
cannulation. Patients in our study also reported pain as a
result of needles, appearance, bleeding and increased time
commitment as dissatisfactions, which is consistent with
previous literature [16].
Knowledge transfer and informed decision making was
an important theme. Inuence from peers was important,
consistent with literature regarding patient decision making
in ESRD [12, 13]. For patients in our study, peer inuence
was often as important as inuence by health care profes-
sionals. Patients expressed camaraderie such as the three
musketeers with other dialysis patients. Family members
of patients did not appear to be inuential in decision mak-
ing, contrasting studies of dialysis withdrawal where bur-
den to family was a theme [14]. Information from health
care professionals is provided at our center through paper-
based and verbal teaching, either within groups or individ-
ually. Patients gravitated towards one or more forms of
information, and no patients were discouraged from any
particular form of teaching. During seminar teaching, pa-
tients see examples of stulas, grafts and catheters in pa-
tients who have been on dialysis for a while. At our center,
we emphasize the stula as the optimal VA. Nurse and
physician preference within a specic center has been
shown to inuence the prevalence of VA modalities in
centers that prefer grafts [23].
Timing of information is important for patients [12, 24].
Several patients in our study had sudden starts to their
dialysis. Patients may forget or misunderstand information
about VA if given at a time when they are overwhelmed
with information regarding their health or by their personal
reactions to disease. Even given at a good time, some in-
formation may prove to be difcult to absorb [25]. Misun-
derstanding of information played an important role in
some patients, including one patient who was unaware
needles were involved with the stula. Patients who show
a greater understanding about CKD have increased use of a
stula [15, 26].
Previous literature suggests that many patients perceive a
lack of choice in dialysis modality because of medical con-
traindication or health care professional preference [12,
27]. Given eligibility for a stula, a patient is always given
a choice between the stula and catheter. This availability
of choice may inuence individuals to make a choice in-
dependently without physician inuence compared to dial-
ysis modality choice that which may be more dictated by
the physician. However, nephrologists should emphasize to
stula-eligible patients that the catheter is only a temporary
solution until a stula is established [28].
Once patients begin dialyzing with an access that appears
to work, consideration of other options becomes less likely.
This is especially true when lack of complications couple
with good patient adaptations to catheter restrictions, in-
cluding inability to shower or swim. Previous literature
suggests that once a treatment plan is established, altera-
tions tend to be resisted by the patient [12, 29, 30]. These
ndings reinforce the importance of starting dialysis with a
stula, but also early referral and frequent nephrologist vis-
its, which are associated with increased stula use at the
start of dialysis [3134]. Physicians should be cognizant
that recommending a stula may be interpreted by a patient
as a change in the status quo and a sign of disease progres-
sion, which a patient may not be willing to accept [13].
Though taken seriously by health care professionals, in-
fection of catheters was downplayed by patients. If a cath-
eter was to be infected, patients also believed it would be
easy although painful to be provided another one. In pre-
vious studies, only 3% of patients believed infection was a
major concern [16].
Our study had some limitations. This dialysis unit had a
high prevalence of catheter use, and patient attitudes in this
unit may not be reective as those from a unit with a lower
rate of catheter use. There are no major nancial barriers to
Patient decision making on AVF 5

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stula creation in Canada because hospital-related costs do
not require out-of-pocket payment from the patient. How-
ever, patients often have to travel long distances (>200 km)
to come for an access procedure or creation, and this cost is
born by the patient and the family. Patients recollection of
education regarding VA may omit forgotten knowledge
used during their actual period of decision making.
Our study elicited the reasoning process patients use to
make an informed decision regarding a stula versus a
catheter. A health care professional must build a trusting
relationship explaining all different options of care with the
help of multiple educational resources that should not only
be received but understood by the patient. Fistula eligibility
criteria should be studied to reduce the failure to mature
rate and decrease negative vicarious experiences with the
stula. Although nephrologists consider the stula to be the
optimal VA, patients do not think in the same terms of
reducing infection rates, but rather place greater emphasis
on the practical day-to-day use of their VA and its inuence
on their quality of life and future outlook.
Acknowledgements. We would like to thank the patients who participated
in the study for sharing their time and experiences. W.X. was funded by
the Schulich School of Medicine and Dentistry Summer Research Oppor-
tunity Program.
Conict of interest statement. None declared.
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Received for publication: 15.11.10; Accepted in revised form: 18.1.11
6 W. Xi et al.

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