Article

Patient-Stated Preferences Regarding Volume-Related

Risk Mitigation Strategies for Hemodialysis
Jennifer E. Flythe,* Thomas W. Mangione, Steven M. Brunelli,* and Gary C. Curhan*|

Abstract
Background and objectives Larger weight gain and higher ultraltration rates have been associated with poorer
outcomes among patients on dialysis. Dietary restrictions reduce uid-related risk; however, adherence is
challenging. Alternative uid mitigation strategies include treatment time extension, more frequent dialysis,
adjunct peritoneal dialysis, and wearable ultraltration devices. No data regarding patient preferences for uid
management exist. A survey was designed, tested, and administered to assess patient-stated preferences
regarding uid mitigation.
Design, setting, participants, & measurements A written survey concerning uid-related symptoms, patient and
treatment characteristics, and uid management preferences was developed. The cross-sectional survey was
completed by 600 patients on hemodialysis at 18 geographically diverse ambulatory facilities. Comparisons of
patient willingness to engage in volume mitigation strategies across uid symptom burden, dietary restriction
experience, and patient characteristics were performed.
Results Final analyses included 588 surveys. Overall, if allowed to liberalize uid intake, 44.6% of patients were
willing to extend treatment time by 15 minutes. Willingness to extend treatment time was incrementally less for
longer treatment extensions; 12.2% of patients were willing to add a fourth weekly treatment session, and 13.5%
of patients were willing to participate in nocturnal dialysis three nights per week. Patients more bothered by their
uid restrictions (versus less bothered) were more willing to engage in uid mitigation strategies. Demographic
characteristics and symptoms, such as cramping and dyspnea, were not consistently associated with willingness
to engage in the proposed strategies. More than 25% of patients were unsure of their dry weights and typical
interdialytic weight gains.
Conclusions Patients were generally averse to treatment time extension.15 minutes. Patients more bothered
(versus less bothered) by their prescribed uid restrictions were more willing to engage in volume mitigation
strategies. Additional study of patient-stated preferences in hemodialysis treatment practices is needed to guide
patient care and identify deciencies in patient treatment and disease-related knowledge.
Clin J Am Soc Nephrol 9: 14181425, 2014. doi: 10.2215/CJN.03280314

Introduction
Patients on hemodialysis (HD) have mortality
rates.6-fold the rates of the general population (1).
An expanding evidence base suggests that volumerelated metrics, including greater interdialytic weight
gain (IDWG) and more rapid uid removal during
HD, may contribute to poor outcomes (26).
Higher IDWG necessitates more rapid ultraltration
(UF) rates during dialysis, and inadequate uid removal
results in chronic volume expansion. Higher IDWG and
UF rates have been linked to greater morbidity and
mortality (26). Currently, uid and salt restrictions are
the principle means used to minimize IDWG and
thereby, rapid UF rates, but research and clinical experience show that adherence to these otherwise physiologically sound interventions is difcult (7,8). As a
result, as many as 25%50% of patients on HD are
chronically volume-expanded, and many patients are
routinely exposed to high UF rates (9). To mitigate risk
1418

Copyright 2014 by the American Society of Nephrology

*Renal Division and

|
Channing Division of
Network Medicine,
Department of
Medicine, Brigham
and Womens
Hospital, Boston,
Massachusetts;

Harvard Medical
School, Boston,
Massachusetts;

Health Services
Division, John Snow,
Inc., Boston,
Massachusetts; and

DaVita Clinical
Research,
Minneapolis,
Minnesota
Correspondence:
Dr. Jennifer E. Flythe,
University of North
Carolina Kidney
Center, 7024 BurnettWomack CB #7155,
Chapel Hill, NC
27599-7155. Email:
jflythe@med.unc.edu

from hypervolemia and uid removal practices, novel

approaches to uid management are needed. Potential
strategies to reduce IDWG include additional weekly
HD sessions to shorten the inter-HD interval as well as
the time for uid accumulation, adjuvant peritoneal dialysis (PD), and interdialytic UF through wearable devices. Strategies to obviate the need for more rapid UF
rates include IDWG reduction and treatment time (TT)
extension.
Patient willingness to adopt potential interventions
is a necessary prerequisite for treatment success. Selecting therapies that align with patient preferences engenders greater potential for adherence and, thus, greater
potential for realization of any derivative therapeutic
benet. To date, there has been no broad assessment of
patient-stated preferences regarding potential novel
therapies for uid management. We developed and
tested a uid management written survey instrument
and administered the survey to 600 chronic ambulatory
www.cjasn.org Vol 9 August, 2014

Clin J Am Soc Nephrol 9: 14181425, August, 2014

HD patients to assess patient willingness to extend TT, add a

fourth weekly HD session, perform nocturnal HD three times
per week, adopt adjunct PD, and use wearable UF devices as
IDWG and UF rate mitigation strategies in lieu of dietary
restrictions. We sought to determine if patient characteristics,
such as HD treatment properties, uid symptom burden,
experience with dietary restrictions, and demographic features, were associated with patient-stated preferences in uid
management strategies. We hypothesized that patients with
larger IDWG and greater uid-related symptom burdens
would be more willing to adopt the proposed uid mitigation strategies.

Materials and Methods

Overview
The written survey instrument was developed in three
steps: (1) domain and item identication through literature
review and patient input, (2) item selection through the development of a preliminary questionnaire with survey research and dialysis professional reviews, and (3) pretesting
through patient comprehension testing and a eld pilot administration test (Supplemental Figure 1). The nal written
survey instrument was administered to patients during a
routine ambulatory HD session at 18 Dialysis Clinic Incorporated (DCI) dialysis facilities between September and November of 2013. Survey instrument development phases and
nal survey administration were approved by the Partners
HealthCare Institutional Review Board.
Survey Development: Domain and Item Identification and
Item Selection
MEDLINE searches to identify symptom burden scales
validated in patients on HD and volume-related items
validated in patients with heart failure and kidney disease
were conducted (Supplemental Table 1). A small group
discussion was held with three volunteer patients on HD
to elucidate patient experiences with HD and uid overload, as well as patient knowledge about different volume
mitigation strategies.
A written survey instrument designed for self-administration
in ,20 minutes was developed. Five domains (volume
overload symptom burden, uid management strategy
preferences, HD treatment characteristics, physical function, and demographics) were selected for inclusion. Individual items were taken from existing validated scales
and questionnaires when possible, and additional items
were generated to reect themes not encompassed by existing surveys. HD treatment and demographic variables
were selected to capture characteristics that might inuence volume management preferences. Volume mitigation
strategies were selected to reect both presently available
treatment options and experimental strategies. The draft
instrument was reviewed by three survey research professionals and three dialysis experts to assess scales, content
validity, and interpretability.
Survey Development: Pretesting
Patient survey comprehension testing was then conducted
through a convenience sample of 10 patients on chronic HD
who were acutely hospitalized at Brigham and Womens
Hospital in Boston, Massachusetts. Patients identied

Patient Preferences in Fluid Management, Flythe et al.

1419

unclear items and commented on survey length; the instrument was modied to incorporate feedback. Field pilot testing of the modied instrument was performed in 50 patients
on HD during a routine outpatient HD session and repeated
2 weeks later in 48 of the 50 patients. Pilot study results were
analyzed for item response distribution and frequency, construct validity, reliability, and testretest reliability. The instrument was modied on the basis of patient feedback and
psychometric results. (Supplemental Table 2 displays characteristics of patients participating in instrument pretesting.)
Survey Administration and Data Collection
The nal survey instrument was distributed to patients at
18 DCI outpatient dialysis units. Patients on in-center HD
aged$18 years old who were able to read and complete an
English language written survey without assistance were
eligible. Exclusion criteria included patients on PD and
home HD. HD treatment and demographic data were selfreported; facility staff did not assist with survey completion.
Written survey completion represented implied consent to
participate in research; patients received no remuneration. In
total, 1163 surveys were mailed to HD units, and 600 surveys were returned. Surveys with ,50% question responses
(n=5) or missing age (n=3) or sex (n=4) were excluded, leaving 588 surveys for analysis.
Statistical Analyses
Pilot survey results were evaluated for response category
frequency and distribution by counts and histograms.
Psychometric analyses included assessment of reliability,
construct validity, and testretest reliability. Cronbach a (a
threshold of 0.70 is regarded as good reliability among test
items) was used to assess internal consistency and reliability within constructs. Testretest reliability was assessed
with the k-statistic (proportion of chance-corrected agreement or a measure of agreement) (10) between responses to
the volume mitigation strategy willingness questions from
the two pilot survey administrations.
Unit response rates were calculated by dividing the
number of returned surveys by the number of mailed
surveys on a facility-to-facility basis. Mailed survey numbers
were on the basis of rough estimates of eligible patients by
clinic administrators and medical directors. Data regarding
the actual number of patients approached who declined to
complete surveys are not available. Reported response rates
are likely underestimations, because most units reported
receiving more surveys than they had eligible patients.
Demographic and HD treatment data were reported as
counts and proportions for categorical variables and means
and SDs for continuous variables. Bivariable comparisons
across categories of uid restriction burden, residual urine
output, lower extremity swelling, IDWG, dyspnea, and HDassociated cramping were made using chi-squared tests. All
analyses were performed using STATA 12.1MP (College
Station, TX).

Results
Survey Instrument Pilot and Psychometric Testing
The survey pilot test was completed by 50 patients on
HD (76% participation rate) during a routinely scheduled
ambulatory HD session at a Boston, Massachusetts, dialysis

1420

Clinical Journal of the American Society of Nephrology

clinic; 48 patients completed retesting 2 weeks later. The

median survey completion time was 16 minutes (range=10
28 minutes). No individual item response was omitted by
more than two patients. Response category counts and histograms revealed adequate distribution and frequency
across response categories for all multiple choice questions.
Dry weight, TT, and IDWG free response questions had
high completion rates (88%96%).
Psychometric testing revealed high internal consistency
across four tested constructs: uid-related symptom severity (Cronbach a=0.72) and mild (Cronbach a=0.83), moderate (Cronbach a=0.88), and severe physical limitation
(Cronbach a=0.91). Testretest reliability of responses to
willingness to participate in UF mitigation strategies
across two survey administrations (2-week span) was
strong, with k-coefcients ranging from 0.53 to 0.88 (Supplemental Table 3). The nal survey instrument is available in the Supplemental Material.
Surveyed Patient Characteristics
The mean survey response rate was 55.6%630.2% and
ranged from 0% to 98.3% (median=60.4%) across centers.
Excluding the center with zero of 100 responses, the mean
response rate was 67.9%621.6%. The participating dialysis
units represented diverse geographic regions across the
United States (Table 1) and included academic center
and community-based units as well as rural and urban
units. Respondent demographic and HD treatment characteristics are displayed in Tables 2 and 3. Overall, respondents were similar to the broader United States HD
population in terms of age and sex (1). Black patients
were over-represented as 47.6% of respondents. The
mean IDWG was 2.861.1 kg, and the mean TT was
229.7645.6 minutes; 2.8% of patients dialyzed nocturnally.
Prescribed uid restrictions were reported by 74.2% of patients. Of 436 patients on uid restrictions, 42.7% reported
adherence to their restriction ,1 day per week. Of surveyed patients, 30.6% of patients were unsure of their dry

Table 1. Geographic locations of survey respondents

Location
Northeast
Maine (1)
Massachusetts (2)
New York (1)
Pennsylvania (2)
Midwest
Indiana (1)
Missouri (2)
Southeast
Alabama (3)
Florida (3)
West
Montana (1)
New Mexico (2)
Total patients
State are listed with the number of participating units in
parentheses.

n
13
58
53
65
91
23
70
110
63
54
600

weights, 26.2% of patients were unsure of typical IDWGs,

and 5.9% of patients were unsure of TTs.
Willingness to Participate in Different Volume
Mitigation Strategies
When patients were asked if they would participate in
different volume mitigation strategies if it meant that you
could drink as much as you want, 44.6% of patients reported willingness to extend TT by 15 minutes, 21.3% of
patients reported willingness to extend TT by 30 minutes,
and 9.7% of patients reported willingness to extend TT by
45 minutes; 12.2% of patients were willing to add a fourth
weekly HD session, 13.5% of patients were willing to participate in nocturnal 8-hour HD three nights per week,
10.2% of patients were willing to perform PD on nonHD days, and 19.9% of patients were willing to use a
wearable UF device on non-HD days.
Patients who reported being moderately, very much, or
extremely bothered by their prescribed uid restriction
(versus not at all or somewhat bothered) were more likely
to be willing to increase TT by 15, 30, and 45 minutes, add a
fourth weekly HD session, and use a wearable UF device
(all P values ,0.001) (Figure 1). There was a doseresponse
relationship between the degree to which patients were
bothered by their uid restriction and willingness to participate in volume mitigation strategies (Table 4). Willingness
to participate in different volume mitigation strategies did
not differ signicantly by the prescribed uid restriction
amount or self-reported adherence to a prescribed uid restriction (Supplemental Table 4).
We hypothesized that patients more bothered by uidrelated symptoms or with higher IDWG would be more
willing to participate in different volume mitigation strategies, but results were mixed. Shortness of breath at rest,
dyspnea-related activity limitation, cramping, and peridialytic dizziness were not signicantly associated with
willingness to participate in the proposed volume mitigation strategies. Patients bothered by lower extremity
swelling (moderately, very much, or extremely bothered
versus not at all or somewhat bothered) were more likely to
be willing to increase TT by 30 minutes (29.7% versus
19.7%; P=0.03) and use a wearable UF device on non-HD
days (28.3% versus 19.1%; P=0.04), but associations with
other strategies were nonsignicant. Patients with higher
weight gain ($3 versus #2.9 kg) were more likely to be
willing to increase TT by 30 minutes (33.7% versus 19.3%;
P=0.002), use non-HD day PD (19.6% versus 9.2%;
P=0.005), and use a wearable UF device (32.7% versus
21.3%; P=0.02); associations between IDWG and other volume mitigation strategies were nonsignicant. Patients
with none or a little residual urine output (versus some
or a lot of urine output) were more likely to be willing to
increase TT by 15 (49.3% versus 40.0%; P=0.02) or 30 minutes (26.3% versus 16.4%; P=0.004) and use a wearable
UF device (25.4% versus 15.7%; P=0.004) (Supplemental
Table 4).
Finally, patients who reported being moderately, very
much, or extremely bothered by fatigue after dialysis
(versus not at all or somewhat bothered) were more likely
to be willing to try nocturnal HD three times per week
(18.3% versus 11.0%; P=0.01); associations between fatigue
and other strategies were nonsignicant.

Clin J Am Soc Nephrol 9: 14181425, August, 2014

Patient Preferences in Fluid Management, Flythe et al.

1421

Table 2. Demographic characteristics of surveyed patients by volume-related risk mitigation strategy willingness

Characteristic
Age (yr)
#39
4059
6069
$70
Sex
Men
Women
Race
White
Black
Othera
Missing
Education
No HS graduation
HS graduate/GED
Some college or more
Missing
Employment statusb
Collecting disability
Retired, homemaker
Unemployed, looking
Part-time work
Full-time work
Missing
Heart failure
Yes
No
Missing
Location
Northeast
Southeast
Midwest
West

Total (n=588)

(+) TT by
15 min (n=262)

(2) TT by
15 min (n=321)

(+) Add Fourth

Weekly
HD (n=72)

(2) Add Fourth

Weekly
HD (n=509)

60 (10.2%)
235 (40.0%)
135 (23.0%)
158 (26.8%)

27 (10.3%)
99 (37.8%)
66 (25.2%)
70 (26.7%)

32 (10.0%)
136 (42.3%)
68 (21.2%)
85 (26.5%)

11 (15.3%)
32 (44.4%)
13 (18.1%)
16 (22.2%)

48 (9.4%)
201 (39.5%)
121 (23.8%)
139 (27.3%)

339 (57.6%)
249 (42.4%)

143 (54.6%)
119 (45.4%)

194 (60.4%)
127 (39.6%)

37 (51.4%)
35 (48.6%)

299 (58.7%)
210 (41.3%)

202 (34.3%)
280 (47.6%)
105 (17.9%)
1 (0.2%)

98 (37.4%)
125 (47.7%)
39 (14.9%)
0

103 (32.1%)
154 (48.0%)
63 (19.6%)
1 (0.3%)

20 (27.8%)
43 (59.7%)
9 (12.5%)
0

180 (35.3%)
236 (46.4%)
92 (18.1%)
1 (0.2%)

105 (17.8%)
227 (38.6%)
255 (43.4%)
1 (0.2%)

48 (18.3%)
92 (35.1%)
122 (46.6%)
0

54 (16.8%)
133 (41.4%)
133 (41.4%)
1 (0.3%)

17 (23.6%)
27 (37.5%)
27 (37.5%)
1 (1.4%)

85 (16.7%)
198 (38.9%)
226 (44.4%)
0

202 (34.4%)
289 (49.1%)
25 (4.2%)
36 (6.1%)
35 (6.0%)
1 (0.2%)

82 (31.3%)
139 (53.1%)
11 (4.2%)
14 (5.3%)
15 (5.7%)
1 (0.4%)

118 (36.8%)
147 (45.8%)
14 (4.4%)
22 (6.8%)
20 (6.2%)
0

27 (37.5%)
36 (50.0%)
1 (1.4%)
2 (2.8%)
6 (8.3%)
0

172 (33.8%)
249 (48.9%)
24 (4.7%)
34 (6.7%)
29 (5.7%)
1 (0.2%)

219 (37.2%)
365 (62.1%)
4 (0.7%)

93 (35.5%)
168 (64.1%)
1 (0.4%)

125 (38.9%)
194 (60.5%)
2 (0.6%)

22 (30.6%)
50 (69.4%)
0

196 (38.5%)
310 (60.9%)
3 (0.6%)

186 (31.6%)
172 (29.3%)
114 (19.4%)
116 (19.7%)

83 (31.7%)
74 (28.2%)
52 (19.9%)
53 (20.2%)

102 (31.8%)
96 (29.9%)
62 (19.3%)
61 (19.0%)

22 (30.5%)
11 (15.3%)
26 (36.1%)
13 (18.1%)

163 (32.0%)
158 (31.0%)
88 (17.3%)
100 (19.7%)

All characteristics (with the exception of geographic region) were patient reported. Five patients omitted the 15-minute increase
question, and seven patients omitted the fourth weekly session question; these patients were excluded from table comparisons. HS,
high school; GED, general equivalency diploma; TT, treatment time; HD, hemodialysis.
a
Includes American Indian, Alaskan, Hawaiian, Pacic Islander, and Hispanic/Latino.
b
Selection of more than one response category was allowed.

Discussion
Patients on HD experience signicant morbidity and
mortality from volume overload and rapid uid removal;
however, no data regarding patient-stated preferences for
treatment approaches to uid management exist. Our
survey revealed that, if patients were allowed to drink as
much uid as they desired, .40% would be willing to
extend their TT by 15 minutes, but willingness to extend
TT decreased incrementally with greater TT extension. Patients who were more bothered by uid restrictions were
more likely to be willing to engage in different volume/UF
mitigation strategies. Demographic characteristics and
symptoms, such as cramping, dizziness, and dyspnea,
were not consistently associated with willingness to engage in the volume/UF mitigation strategies. Finally, our
results revealed that .25% of patients were unsure of their
dry weights and typical IDWGs, and .40% of patients

adhered to their prescribed daily uid restrictions ,1

day per week.
Dietary restrictions are the cornerstone of volume
management; however, adherence to either salt or uid
restriction is difcult, and adherence to both, a necessity
for successful volume reduction, is even more challenging (7,8). In a small focus groupbased study on uid
management, Smith et al. (11) identied inadequate
knowledge and lack of motivation as the primary barriers to uid restriction adherence; the study did not explore perceptions of nondietary-based interventions.
Similar roadblocks to dietary restrictions are present
among patients with heart failure (12,13). Despite the
challenges associated with dietary restrictions, improved
adherence has been shown with targeted educational
programs, cognitive behavioral therapy, and dietary
self-efcacy (1416).

1422

Clinical Journal of the American Society of Nephrology

Table 3. Self-reported dialysis characteristics of surveyed patients by volume-related risk mitigation strategy willingness

Characteristic
Dry weight
(quartiles; kg)
#67
6880
8197
$98
Not sure
Missing
IDWG (tertiles; kg)
#2
2.13
$3.1
Not sure
Missing
TT (min)
#239
$240
Not sure
Prescribed a uid
restriction
Yes
No
Missing
Fluid restriction
amount (L)
#1
1.11.9
$2
Missing
Frequency of meeting
uid restriction
Less than one time
per week
One to three times
per week
Daily
Missing
Vintage (yr)
#0.9
15
$5.1
Missing
Residual urine output
None
A little
Some
A lot
Missing

Total (n=588)

(+) TT by
15 min (n=262)

(2) TT by
15 min (n=321)

(+) Add Fourth

Weekly
HD (n=72)

(2) Add Fourth

Weekly
HD (n=509)

112 (19.1%)
93 (15.8%)
100 (17.0%)
96 (16.3%)
180 (30.6%)
7 (1.2%)

51 (19.5%)
43 (16.4%)
45 (17.2%)
47 (17.9%)
73 (27.9%)
3 (1.1%)

60 (18.7%)
49 (15.3%)
55 (17.1%)
48 (14.9%)
105 (32.7%)
4 (1.3%)

13 (18.0%)
11 (15.3%)
16 (22.2%)
12 (16.7%)
20 (27.8%)
0

98 (19.3%)
81 (15.9%)
84 (16.5%)
82 (16.1%)
157 (30.8%)
7 (1.4%)

165 (28.1%)
159 (27.0%)
104 (17.7%)
154 (26.2%)
6 (1.0%)

55 (21.0%)
86 (32.8%)
53 (20.2%)
65 (24.8%)
3 (1.2%)

107 (33.3%)
73 (22.8%)
51 (15.9%)
87 (27.1%)
3 (0.9%)

18 (25.0%)
26 (36.1%)
19 (26.4%)
9 (12.5%)
0

143 (28.1%)
133 (26.1%)
84 (16.5%)
143 (28.1%)
6 (1.2%)

255 (43.4%)
298 (50.7%)
35 (5.9%)

106 (40.5%)
141 (53.8%)
15 (5.7%)

145 (45.2%)
157 (48.9%)
19 (5.9%)

29 (40.3%)
39 (54.2%)
4 (5.6%)

221 (43.4%)
258 (50.7%)
30 (5.9%)

436 (74.2%)
150 (25.5%)
2 (0.3%)

209 (79.8%)
53 (20.2%)
0

224 (69.8%)
96 (29.9%)
1 (0.3%)

55 (76.4%)
17 (23.6%)
0

376 (73.9%)
132 (25.9%)
1 (0.2%)

299 (68.6%)
38 (8.7%)
43 (9.9%)
56 (12.8%)

138 (66.0%)
25 (12.0%)
21 (10.0%)
25 (12.0%)

160 (71.4%)
12 (5.4%)
22 (9.8%)
30 (13.4%)

41 (74.5%)
4 (7.3%)
6 (10.9%)
4 (7.3%)

256 (68.1%)
32 (8.5%)
37 (9.8%)
51 (13.6%)

186 (42.7%)

79 (37.8%)

106 (47.3%)

25 (45.4%)

159 (42.3%)

151 (34.6%)

74 (35.4%)

75 (33.5%)

19 (34.6%)

129 (34.3%)

89 (20.4%)
10 (2.3%)

51 (24.4%)
5 (2.4%)

38 (17.0%)
5 (2.2%)

10 (18.2%)
1 (1.8%)

79 (21.0%)
9 (2.4%)

155 (26.3%)
272 (46.3%)
153 (26.0%)
8 (1.4%)

61 (23.3%)
127 (48.5%)
71 (27.1%)
3 (1.1%)

93 (29.0%)
142 (44.2%)
81 (25.2%)
5 (1.6%)

17 (23.6%)
25 (34.7%)
29 (40.3%)
1 (1.4%)

137 (26.9%)
242 (47.5%)
123 (24.2%)
7 (1.4%)

129 (21.9%)
175 (29.8%)
206 (35.0%)
73 (12.4%)
5 (0.9%)

63 (24.0%)
87 (33.2%)
87 (33.2%)
23 (8.8%)
2 (0.8%)

66 (20.6%)
88 (27.4%)
115 (35.8%)
50 (15.6%)
2 (0.6%)

21 (29.2%)
23 (31.9%)
22 (30.6%)
6 (8.3%)
0

108 (21.2%)
151 (29.6%)
179 (35.2%)
67 (13.2%)
4 (0.8%)

All dialysis characteristics were patient reported. Five patients omitted the 15-minute increase question, and seven patients omitted the
fourth weekly session question; these patients were excluded from table comparisons. IDWG, interdialytic weight gain.

Although dietary restriction remains a viable volume mitigation strategy with intensive patient support and education,
it is imperative that we develop alternative interventions.
This need is underscored by our nding that .40% of patients self-reported daily uid restriction adherence ,1 day
per week. To mitigate IDWG-related harm, non-HD day
therapies, such as adjunct PD and wearable UF devices,

may be benecial. PD in patients with refractory heart failure has been shown to decrease hospitalizations and improve functional status (17). In a 13-patient study of 4-weeks
duration, Jones et al. (18) showed lower pre-HD BP and
IDWG among patients treated with near daily UF (4 days
of UF and 2 days of UF and HD). Wearable UF and articial kidney devices could provide a similar benet (19) and

Clin J Am Soc Nephrol 9: 14181425, August, 2014

Patient Preferences in Fluid Management, Flythe et al.

1423

Figure 1. | Fluid restriction bother defined as moderately, very much, or extremely bothered by their prescribed fluid restriction (versus not
at all or somewhat bothered). P values reflect bivariable comparisons across two categories of fluid restriction burden. HD, hemodialysis; TT,
treatment time; UF, ultrafiltration. aPatients on active nocturnal dialysis (n=12) were excluded from analysis.

Table 4. Willingness to participate in volume mitigation strategies by incrementally greater perceived fluid restriction bother

Strategy
Increase TT by 15 min
Increase TT by 30 min
Increase TT by 45 min
Add fourth HD per week
Nocturnal HD three
times per weekb
PD on non-HD days
Wearable UF device

Not Bothered
(n=270)

Somewhat
Bothered (n=129)

Moderately
Bothered (n=96)

Very Much
or Extremely
Bothered (n=89)

P for
Trenda

89 (33.2%)
37 (13.8%)
20 (7.5%)
24 (9.0%)
29 (11.0%)

61 (48.0%)
24 (18.9%)
6 (4.7%)
12 (9.5%)
22 (17.6%)

53 (55.2%)
27 (28.1%)
13 (13.5%)
16 (16.8%)
12 (12.8%)

57 (64.0%)
35 (39.3%)
18 (20.2%)
20 (22.5%)
14 (16.7%)

,0.001
,0.001
0.002
0.001
0.16

29 (10.3%)
37 (14.1%)

14 (11.5%)
26 (21.3%)

8 (8.9%)
23 (25.3%)

11 (12.4%)
31 (35.2%)

0.77
,0.001

Five patients omitted the 15- and 30-minute increase questions, and seven patients omitted the fourth weekly session question; these
patients were excluded from table comparisons. PD, peritoneal dialysis; UF, ultraltration.
a
Nonparametric test for trend across ordered groups by an extension of Wilcoxon rank sum testing.
b
Active nocturnal dialysis patients (n=12) were excluded from analysis.

have recently been approved for randomized study.

Such strategies offer the promise of both IDWG and UF
rate reduction. UF rate reduction (without IDWG reduction) can be achieved by TT extension. Historically, TT has
been a relatively xed prescription parameter, primarily
determined by urea clearance metrics. However, sessionto-session TT titration in response to observed IDWG is a
potential strategy to reduce UF rates. Such a strategy
would not only cap UF rates but might also deter IDWG
as patients curb uid intake to avoid longer TTs.
Our nding that uid restriction bother was most strongly
associated with willingness to participate in different volume/UF rate mitigation strategies is not surprising. Fluid

restriction, particularly in the presence of reduced cardiac

output, leads to increased neurohormonal system activation
and hypothalamic thirst stimulation (20). Patients on HD
may be particularly vulnerable to such triggers because of
thirst augmentation from wide serumdialysate sodium gradients (21). In fact, increased thirst among patients on HD is
associated with increased IDWG and reduced quality of life
(22).
Interestingly, symptoms that might improve with UF
rate reduction (e.g., cramping and dizziness) or IDWG reduction (e.g., dyspnea and edema) were not consistently
associated with willingness to participate in the mitigation
strategies. Such incongruity suggests inadequate patient

1424

Clinical Journal of the American Society of Nephrology

understanding of HD-related symptom physiology. Although our survey did not directly assess health literacy
and HD-related knowledge, our results revealed that
30.6% of patients did not know their dry weights, 26.2%
of patients did not know their typical IDWGs, and 5.9% of
patients did not know their TTs. These ndings expose
important knowledge gaps and highlight the need for educational programs focused on disease-specic health literacy and motivational programs designed to engage
patients in treatment plans.
Additionally, we found that .40% of patients would be
willing to extend TT by 15 minutes if they could increase
uid intake; however, this willingness fell to ,10% with
45 minutes of TT extension. Such resistance to TT extension is consistent with clinical experience. However, we
were surprised that more patients were willing to add an
extra weekly HD session than were willing to extend sessions by 45 minutes three times per week, suggesting that
longer HD duration carries greater aversion than greater
HD frequency (despite the greater cumulative TT associated with the latter). In contrast, more patients were willing to try 8-hour nocturnal dialysis than extend sessions by
45 minutes. This nding could be attributed to increased
patient awareness of associations between nocturnal dialysis and improved quality of life (23) and is supported by
our nding that patients more bothered by fatigue were
more likely to be willing to participate in nocturnal HD.
Finally, our results revealed general aversion to adoption
of most of the proposed uid mitigation strategies. Such
ndings underscore the need for research focused on identifying alternative strategies for uid management and the
need for consideration of patient opinion in such research.
Incorporation of patient opinion in the early stages of research may provide important data regarding potential for
trial enrollment success and more importantly, the likelihood
of ultimate therapeutic adoption.
To our knowledge, this study is the rst effort to broadly
assess patient preferences regarding uid management. Its
strengths include a large, geographically diverse sample size
with demographic and treatment characteristics similar to the
broader United States HD population and the use of a survey
instrument developed with patient input and attention to
patient-reported outcome standards (24).
Our study does have important limitations. First, convenience samples for instrument development were used, and
participants may not have been representative of the broader
HD population. Second, unit survey response rates varied
widely; nonresponse bias may have affected results. Although
it is reassuring that survey responders were similar to the
broader United States HD population in terms of age, sex, TT,
IDWG, and dialytic vintage, survey responders may have
been differentially likely to engage in or may have differential
experience with various volume mitigation strategies. Response rates might have been improved by allowing dialysis
facility staff to aid in survey completion; however, it would
have impaired our assessment of patient treatment knowledge. Third, HD and demographic data were self-reported;
incorrect reporting may have introduced misclassication
bias. Fourth, black patients were disproportionately represented in our survey responders; however, responses to
strategy questions did not differ signicantly between black
and nonblack respondents. Additionally, we excluded pa-

tients on HD and home therapy and patients unable to

complete a written English language survey; our results cannot
be extrapolated to these populations. Also, the k-statistic for
testretest reliability of the willingness to engage in PD item in
instrument pilot testing was low and may suggest that patients
had poor understanding of this question; PD-willingness
question results should be interpreted with caution. Fifth,
survey uid mitigation strategies were selected parsimoniously to minimize respondent burden. Additional uid
mitigation strategies exist (e.g., diuretics), and patient preferences for other therapies should be examined.
In summary, this study showed that, even in the setting
of relaxed uid restrictions, patients were generally
averse to TT extension by .15 minutes. Patients more
bothered (versus less bothered) by their prescribed uid
restrictions were more willing to engage in volume mitigation strategies. Additionally, many patients did not
know their dry weights and typical IDWGs. Finally,
volume-related and UF raterelated symptoms did not
correlate with willingness to participate in different volume mitigation strategies, suggesting a need for greater
patient education. Additional study of patient-stated
preferences in HD treatment practices is needed to guide
patient care, identify educational opportunities, and inform future research.
Acknowledgments
We thank Dialysis Clinic Incorporated (DCI), its clinical research
director Karen Majchrzak, and its participating medical directors
and dialysis unit staff for facilitating survey administration. We
thank Fresenius Medical Care North America for facilitating focus
group conduction. We also thank the research assistants at John
Snow, Inc. for assistance with survey formatting and scanning. Finally, we thank the dialysis patients for taking part in all phases of
this study.
This work was supported by National Institute of Diabetes and
Digestive and Kidney Diseases of the National Institutes of Health
Grant DK093159-02 (to J.E.F.) and National Institutes of Health
Grant 1KL2-TR001100-01 (to J.E.F.), a KL2 Medical Research Investigator Training award (an appointed KL2 award) from Harvard
Catalyst/The Harvard Clinical and Translational Science Center
National Center for Research Resources and the National Center for
Advancing Translational Sciences. This work was also supported by
National Institute of Diabetes and Digestive and Kidney Diseases of
the National Institutes of Health Grant DK91417 (to G.C.C.).
Neither DCI nor Fresenius Medical Care North America had any
role in the design or analysis of this study. The content is solely the
responsibility of the authors and does not necessarily represent the
ofcial views of Harvard Catalyst, Harvard University, and its afliated academic health care centers or the National Institutes of
Health.
Disclosures
J.E.F. has received speaking honoraria from Dialysis Clinic Incorporated. T.W.M. is an employee of John Snow, Inc., a public
health management consulting and research organization. S.M.B. is
an employee of DaVita Clinical Research, has received speaking
honoraria from Fresenius Medical Care North America, and served
on advisory boards for Amgen, C. B. Fleet, Keryx, and Otsuka; his
spouse is employed by AstraZeneca. G.C.C. has served as a
consultant to Allena Pharmaceuticals, AstraZeneca, and Exponent,

Clin J Am Soc Nephrol 9: 14181425, August, 2014

is an author and section editor for UpToDate and the Editor-in-Chief

of CJASN.
References
1. USRDS: 2013 Annual Data Report: Atlas of Chronic Kidney
Disease and End-Stage Renal Disease in the United States, Bethesda, MD, National Institutes of Health National Institute of
Diabetes and Digestive and Kidney Diseases, 2013
2. Kimmel PL, Varela MP, Peterson RA, Weihs KL, Simmens SJ,
Alleyne S, Amarashinge A, Mishkin GJ, Cruz I, Veis JH: Interdialytic weight gain and survival in hemodialysis patients: Effects
of duration of ESRD and diabetes mellitus. Kidney Int 57: 1141
1151, 2000
3. Kalantar-Zadeh K, Regidor DL, Kovesdy CP, Van Wyck D,
Bunnapradist S, Horwich TB, Fonarow GC: Fluid retention is
associated with cardiovascular mortality in patients undergoing
long-term hemodialysis. Circulation 119: 671679, 2009
4. Movilli E, Gaggia P, Zubani R, Camerini C, Vizzardi V, Parrinello G,
Savoldi S, Fischer MS, Londrino F, Cancarini G: Association between high ultrafiltration rates and mortality in uraemic patients on
regular haemodialysis. A 5-year prospective observational multicentre study. Nephrol Dial Transplant 22: 35473552, 2007
5. Saran R, Bragg-Gresham JL, Levin NW, Twardowski ZJ,
Wizemann V, Saito A, Kimata N, Gillespie BW, Combe C,
Bommer J, Akiba T, Mapes DL, Young EW, Port FK: Longer
treatment time and slower ultrafiltration in hemodialysis: Associations with reduced mortality in the DOPPS. Kidney Int 69:
12221228, 2006
6. Flythe JE, Kimmel SE, Brunelli SM: Rapid fluid removal during
dialysis is associated with cardiovascular morbidity and mortality. Kidney Int 79: 250257, 2011
7. Kammerer J, Garry G, Hartigan M, Carter B, Erlich L: Adherence
in patients on dialysis: Strategies for success. Nephrol Nurs J 34:
479486, 2007
8. Bame SI, Petersen N, Wray NP: Variation in hemodialysis patient
compliance according to demographic characteristics. Soc Sci
Med 37: 10351043, 1993
9. Passauer J, Petrov H, Schleser A, Leicht J, Pucalka K: Evaluation of
clinical dry weight assessment in haemodialysis patients using
bioimpedance spectroscopy: A cross-sectional study. Nephrol
Dial Transplant 25: 545551, 2010
10. Cappelleri J, Zou K, Bushmakin A, Alvir J, Alemayehu D,
Symonds T: Patient-Reported Outcomes: Measurement, Implementation, and Interpretation, Boca Raton, FL, Taylor &
Francis Group, 2014
11. Smith K, Coston M, Glock K, Elasy TA, Wallston KA, Ikizler TA,
Cavanaugh KL: Patient perspectives on fluid management in
chronic hemodialysis. J Ren Nutr 20: 334341, 2010
12. Luyster FS, Hughes JW, Gunstad J: Depression and anxiety
symptoms are associated with reduced dietary adherence in
heart failure patients treated with an implantable cardioverter
defibrillator. J Cardiovasc Nurs 24: 1017, 2009
13. Lennie TA, Chung ML, Moser DK: What should we tell patients
with heart failure about sodium restriction and how should we
counsel them? Curr Heart Fail Rep 10: 219226, 2013

Patient Preferences in Fluid Management, Flythe et al.

1425

14. Sharp J, Wild MR, Gumley AI, Deighan CJ: A cognitive behavioral group approach to enhance adherence to hemodialysis fluid
restrictions: A randomized controlled trial. Am J Kidney Dis 45:
10461057, 2005
15. Sharp J, Wild MR, Gumley AI: A systematic review of psychological interventions for the treatment of nonadherence to fluidintake restrictions in people receiving hemodialysis. Am J Kidney
Dis 45: 1527, 2005
16. Zrinyi M, Juhasz M, Balla J, Katona E, Ben T, Kakuk G, Pall D:
Dietary self-efficacy: Seterminant of compliance behaviours and
biochemical outcomes in haemodialysis patients. Nephrol Dial
Transplant 18: 18691873, 2003
17. Sanchez JE, Ortega T, Rodrguez C, Daz-Molina B, Martn M,
Garcia-Cueto C, Vidau P, Gago E, Ortega F: Efficacy of peritoneal
ultrafiltration in the treatment of refractory congestive heart
failure. Nephrol Dial Transplant 25: 605610, 2010
18. Jones JP, Leonard EF, Sandhu G, Winkel G, Levin NW, Cortell S:
Daily ultrafiltration results in improved blood pressure control
and more efficient removal of small molecules during hemodialysis. Blood Purif 34: 325331, 2012
19. Gura V, Macy AS, Beizai M, Ezon C, Golper TA: Technical
breakthroughs in the wearable artificial kidney (WAK). Clin J Am
Soc Nephrol 4: 14411448, 2009
20. Holst M, Stromberg A, Lindholm M, Willenheimer R: Liberal
versus restricted fluid prescription in stabilised patients with
chronic heart failure: Result of a randomised cross-over study
of the effects on health-related quality of life, physical capacity,
thirst and morbidity. Scand Cardiovasc J 42: 316322, 2008
21. Oliver A, Wright M, Matson A, Woodrow G, King N, Dye L: Low
sodium haemodialysis reduces interdialytic fluid consumption
but paradoxically increases post-dialysis thirst. Nephrol Dial
Transplant 19: 28832885, 2004
22. Fan WF, Zhang Q, Luo LH, Niu JY, Gu Y: Study on the clinical
significance and related factors of thirst and xerostomia in
maintenance hemodialysis patients. Kidney Blood Press Res 37:
464474, 2013
23. McFarlane PA, Bayoumi AM, Pierratos A, Redelmeier DA: The
quality of life and cost utility of home nocturnal and conventional
in-center hemodialysis. Kidney Int 64: 10041011, 2003
24. Reeve BB, Wyrwich KW, Wu AW, Velikova G, Terwee CB, Snyder
CF, Schwartz C, Revicki DA, Moinpour CM, McLeod LD, Lyons
JC, Lenderking WR, Hinds PS, Hays RD, Greenhalgh J, Gershon
R, Feeny D, Fayers PM, Cella D, Brundage M, Ahmed S, Aaronson
NK, Butt Z: ISOQOL recommends minimum standards for
patient-reported outcome measures used in patient-centered
outcomes and comparative effectiveness research. Qual Life Res
22: 18891905, 2013
Received: March 31, 2014 Accepted: May 7, 2014
Published online ahead of print. Publication date available at www.
cjasn.org.
This article contains supplemental material online at http://cjasn.
asnjournals.org/lookup/suppl/doi:10.2215/CJN.03280314/-/
DCSupplemental.