ABSTRACT
Objective: Having end-stage renal failure and being commenced on hemodialysis is a factor that affects all aspect of life and inducing decreases quality of life in all aspects. The aim of this study is to assess the quality of life and to determine the factors affecting the quality of life in adult patients receiving regular hemodialysis
Method: A cross-sectional descriptive study was conducted in the hemodialysis unit of King Hussein Medical Center. Patients on hemodialysis for a minimum of three months who have no psychiatric sickness and being literate were included in the study during the period extending from February to October 2017. Their quality of life was assessed using Arabic translated "Short Form 36 Quality of Life Scale" (SF-36 Quality of life Scale).
Results: A total of 141 patients were included in the study, 131 had an end-stage failure on Hemodialysis and 10 patients had CKD in pre-dialysis status as a control. The patients’ quality of life scores was observed to be low. The means and standard deviations for the SF-36 Quality of life for physical functioning (34.92 + 26.28), social functioning (49.25 + 28.28), role-physical (23.47 + 33.22), role-emotional (41.51 + 38.53), emotional well-being (54.024+ 20.74), vitality (43.57 + 21.34), bodily pain (57.50 + 26.16) and general health (44.90 + 19.41). 78 patients (60%) were male. There was no difference in mean subscales score between male and female patients. Patients between 20 -30 had a higher mean in almost all subscales, Education level had no effect on the quality of life of the patients. Quality of life was significantly lower in patients with itching, anemia arthralgia, aches, and sleep problems
Conclusion: Quality of life is significantly low in patients on hemodialysis
Key words: Chronic kidney disease, Hemodialysis (HD), Quality of life (QOL), The Royal Medical Services of Jordan .
JRMS August 2019; 26(2):33-44/ DOI: 10.12816/0053289
Introduction
The World Health Organization defines health as not merely the absence of disease or infirmity, but a state of complete psychical, mental and social well-being.(1)
Quality of life has many definitions; one of them as per Hecht and Shiel which defines it as “the patient’s ability to enjoy normal life activities” since life quality is strongly related to wellbeing without suffering from sickness and treatment.(2)
Using quality of life measures in hemodialysis patient is helpful to ensure that treatment and evaluations focus on the patient rather than the disease, and useful in clinical encounter and in quality improvement.
Screening for hidden problems, facilitating shared clinical decision making and monitoring changes or responses to treatment and using these data to improve patients care.(3)
Having ESRF and being on hemodialysis is a condition with high morbidity and mortality and a situation that results in limitations in almost all domains of their daily lives.(4) In Jordan; all patients receive hemodialysis in specialized centers and need to visit it with a minimum of three visits weekly for a
minimum of four hours for each session, most of the HD patients have another comorbidities and depression due to disruption of social, sexual, career life; All these factors affect QoL negatively. We conducted this study to assess the quality of life and to determine the factors affecting the quality of life in adult patients receiving regular hemodialysis
Methodology
This cross-sectional descriptive study was performed in the Dialysis unit of King Hussein Medical Center/ The Royal Medical Services (RMS) of Jordan. The study was approved by RMS ethics committee. A total of 141 patients were included. 131 of them had ESRF and maintained on hemodialysis for a minimum of three months while 10 patients had chronic kidney disease (CKD) and still maintained on medical treatment as a control. The study was conducted over the period extending from February 01 to October 01, 2017.
The inclusions criteria include the patients who have been on hemodialysis (HD) for a minimum of three months with no psychiatric sickness and being literate. The data were collected utilizing Arabic translated "Short Form 36 Quality of Life Scale" (SF-36 Quality of life Scale), to assess their quality of life. The individual data form was outlined as a record of 15 inquiries including sociodemographic background and disease characteristics. The sociodemographic background includes four variables which are age, sex, working status, and education level while 11 domains were aimed at addressing disease factors including disease duration, itching, anemia and others. All the inquiries were multiple choices. The individual data form was made via looking through the literature. The attributes of chronic kidney disease were determined considering the literature (e.g. anemia, itching).
This scale was first created by Ware and Sherbourn(16); it assesses eight health concepts including limitations in physical activities because of health problems; limitations in social activities because of physical or emotional problems; limitations in usual role activities because of physical health problems); bodily pain; general mental health (psychological distress and well-being); limitations in usual role activities because of emotional problems; vitality (energy and fatigue); and general health perceptions
The scale was assessed taking the most recent 4 weeks into account. All items were evaluated on a Likert scale except for the third and the fourth items.
The scores assigned to each category ranged from 0 to 100, where 0 and 100 stood for the lowest and highest quality of life respectively.
The third and fourth Items were yes or no inquiries
A consent was obtained from the participating patients who were educated to the point and strategy for the study. They were additionally informed that they can pull back from the review at whatever time they need and that all individual data will be kept confidential.
The statistical analysis of the data was performed utilizing SPSS23.0 for Windows. The mean, standard deviation, median, percentage distribution of the sample was calculated. The Shapiro-Wilk test was utilized as a part of the request to assess the normal distribution of parameters. The distribution of the SF-36 Quality of life Scale scores was assessed with the Shapiro-Wilk test, which showed that vitality, emotional well-being, and pain subscales scores presented normal distribution. The Student t-test of the difference between the two mean scores was used in the statistical evaluation of the vitality, emotional well-being, and pain subscales scores with the two-category classification; analysis of variance was used in the evaluation with more than two categories. For the statistical analysis of the physical functioning, role limitations due to physical health, role limitations due to emotional health, social functioning, and general health subscales scores, which do not present normal statistical distribution, the Mann-Whitney U test used for measuring two-category classifications and the Kruskal-Wallis test utilized for those with more than two categories. The significance level was chosen as .05 for all tests.
Results
Sociodemographic characteristics and quality of life scores
The number of male and female participants was 78, 53 respectively. There was no difference in mean subscales score between male and female (Table I). Of all the taking part patients 74% were 42 or older. Patients between 20 and 30 years of age had a higher mean in almost all subscales p < .05; (Table I)
Of all the participating patients, 46% were secondary school graduates and 22% university graduates. Education level had no effect on the quality of life of the patients, (Table I). Among our patients 31% were housewives, while retired subclass were 41% of the total study group, with a significant difference in physical function, role physical, and social functioning subscales (Table I).
Table I: Sociodemographic characteristics and quality of life scores
Sociodemographic
Characteristics
|
N
|
%
|
SF-36 QoL
subscales M + SD
|
Physical
function
|
Role
physical
|
Role emotional
|
vitality
|
emotional well being
|
social functioning
|
pain
|
general health
|
Gender
|
Male
|
78
|
60
|
35.83 + 26.76
|
25.00 + 34.19
|
41.52 + 38.73
|
45.73 + 21.64
|
54.39 + 21.34
|
52.75 + 29.53
|
59.32 + 26.14
|
45.11 + 20.11
|
Female
|
53
|
40
|
33.58 + 25.75
|
21.23 + 31.92
|
41.50 + 38.62
|
40.39 + 20.67
|
53.48 + 20.00
|
44.10 + 25.76
|
54.81 + 26.21
|
44.59 + 18.51
|
P
|
|
|
0
.623
|
0.455
|
0.925
|
0.16
|
0.805
|
0.103
|
0.318
|
0.951
|
Age (year)
|
20_30
|
12
|
9
|
55.00 + 30.23
|
45.83 + 39.65
|
58.33 + 40.51
|
60.25 + 13.78
|
60.12 + 18.27
|
66.88 + 25.36
|
75.00 + 22.61
|
55.83 + 21.51
|
31_41
|
22
|
17
|
41.59 + 29.94
|
26.14 + 38.17
|
34.82 + 37.75
|
46.59 + 20.40
|
56.39 + 18.61
|
48.41 + 23.43
|
55.68 + 32.21
|
50.57 + 20.38
|
>42
|
97
|
74
|
30.93 + 23.61
|
20.10 + 30.33
|
40.95 + 38.28
|
40.83 + 21.43
|
52.73 + 21.46
|
47.26 + 29.09
|
55.74 + 24.48
|
42.26 + 18.35
|
P
|
|
|
.013
|
.045
|
.187
|
.008
|
.431
|
.054
|
.053
|
.050
|
Education
level
|
Primary school
|
42
|
32
|
29.88 + 23.07
|
22.62 + 33.50
|
48.41 + 39.78
|
40.72 + 21.00
|
53.77 + 22.73
|
48.04 + 28.21
|
55.66 + 26.03
|
43.45 + 20.11
|
Secondary
school
|
60
|
46
|
35.67 + 27.56
|
19.17 + 31.00
|
36.65 + 38.66
|
42.38 + 23.41
|
52.72 + 19.43
|
44.83 + 28.73
|
55.54 + 28.90
|
44.19 + 20.00
|
University
|
29
|
22
|
40.69 + 27.41
|
33.62 + 36.15
|
41.57 + 36.13
|
50.67 + 15.97
|
56.71 + 21.04
|
60.17 + 25.33
|
64.24 + 19.11
|
48.45 + 17.22
|
P
|
|
|
.275
|
.090
|
.236
|
.246
|
.764
|
.055
|
.283
|
.454
|
Working status
|
Housewife
|
41
|
31
|
32.68 + 26.00
|
15.24 + 27.32
|
41.45 + 38.57
|
40.95 + 20.70
|
52.90 + 20.26
|
39.27 + 24.30
|
53.48 + 24.39
|
41.90 + 16.70
|
Civil servant
|
8
|
6
|
63.13 + 25.77
|
37.50 + 51.76
|
41.66 + 46.29
|
47.81 + 19.20
|
55.44 + 23.30
|
52.19 + 30.07
|
57.81 + 32.00
|
46.25 + 15.06
|
Worker
|
5
|
4
|
55.00 + 16.20
|
15.00 +22.36
|
33.33 + 47.14
|
35.60 + 23.55
|
53.80 + 22.66
|
54.50 + 16.81
|
85.00 + 20.54
|
49.00 + 24.60
|
Retired
|
54
|
41
|
31.67 + 25.01
|
20.37 + 29.17
|
38.26 + 36.86
|
42.10 + 23.15
|
50.92 + 21.51
|
49.70 + 31.08
|
56.11 + 25.81
|
42.41 +18.22
|
Self-employed
|
13
|
10
|
40.77 + 29.78
|
50.00 + 36.80
|
46.60 + 41.50
|
54.78 + 15.87
|
64.25 + 14.29
|
67.50 + 17.17
|
55.58 + 26.68
|
53.65 + 23.15
|
Others
|
10
|
8
|
21.50 + 14.54
|
32.50 + 42.57
|
56.66 + 38.65
|
48.28 + 18.56
|
61.10 + 21.60
|
59.25 + 30.85
|
70.00 + 26.48
|
56.10 + 27.34
|
P
|
|
|
.013
|
.026
|
.695
|
.312
|
.340
|
.025
|
.099
|
.339
|
Patients' quality of life scores
The patients’ quality of life scores was observed to be low. The means and standard deviations for the SF-36 Quality of life subscales were computed and found to be as following; physical functioning (34.92 + 26.28), social functioning (49.25 + 28.28), role-physical (23.47 + 33.22), role-emotional (41.51 + 38.53), emotional well-being (54.024+ 20.74), vitality (43.57 + 21.34), bodily pain (57.50 + 26.16) and general health (44.90 + 19.41).
Disease characteristics and quality of life scores
Of all the participants, 35% had CKD V for one to three years; 85% of the patients had associated chronic illness (diabetes mellitus, hypertension, coronary artery disease, congestive heart failure and chronic obstructive pulmonary disease), and 81% had itching. Patients with itching were found to have lower mean Physical function, vitality, social function, and general health subscales score than the ones who had no itching (Table II). Those who had arthralgia and bone pain had lower mean in all subscales score than those who did not, with a significant difference in all subscales (p < .05) (Table II). Anemia defined as hemoglobin less than 10 gm/ dl among hem dialysis population)(5). Of all patients, 47% of patients had anemia. Patients with anemia had lower mean physical function, emotional well-being, and pain subscales score than those who had no anemia (p < .05) (Table II).
Table II: Disease characteristics and quality of life scores
Disease
characteristics
|
N
|
%
|
SF-36 QoL
subscales M + SD
|
Physical
function
|
Role
physical
|
Role emotional
|
vitality
|
Emotional well being
|
social functioning
|
pain
|
general health
|
Disease
duration
|
3_12 mo
|
27
|
21
|
41.11 + 27.50
|
28.70 + 35.15
|
45.68 + 41.50
|
44.46 + 21.69
|
53.13 + 21.34
|
50.46 + 30.96
|
60.93 + 27.11
|
44.82 + 17.01
|
1_3 yr
|
46
|
35
|
35.22 + 26.52
|
24.46 + 33.95
|
46.37 + 38.79
|
45.39 + 21.90
|
58.13 + 20.87
|
47.93 + 28.58
|
56.30 + 28.07
|
46.61 + 18.46
|
4_6 yr
|
29
|
22
|
30.00 + 25.36
|
13.79 + 22.74
|
28.72 + 34.18
|
41.29 + 22.27
|
50.08 + 21.02
|
54.74 + 24.21
|
55.17 + 26.63
|
42.33 + 22.16
|
> 7 yr
|
29
|
22
|
33.62 + 25.81
|
26.72 + 38.34
|
42.72 + 38.50
|
42.15 + 19.92
|
52.29 + 19.59
|
44.73 + 29.46
|
58.52 + 22.34
|
44.83 + 20.72
|
|
|
|
.479
|
.435
|
.200
|
.843
|
.379
|
.465
|
.877
|
.740
|
Chronic
illness
|
Yes
|
112
|
85
|
33.04 + 25.56
|
21.21 +
30.98
|
39.33 + 37.97
|
42.14 + 21.27
|
53.57 + 21.45
|
47.41 +
28.61
|
55.98 + 26.21
|
44.21 + 19.55
|
No
|
19
|
15
|
46.05 + 28.36
|
36.84 + 42.79
|
54.36 + 40.38
|
52.00 + 20.27
|
56.68 + 16.12
|
60.13 + 24.17
|
66.45 +
24.67
|
48.97 + 18.49
|
P
|
|
|
.069
|
.121
|
.148
|
.062
|
.547
|
.076
|
.121
|
.312
|
Itching
|
Yes
|
81
|
62
|
28.77 + 23.74
|
19.75 + 30.55
|
39.91 + 37.79
|
38.53 + 21.21
|
51.85 + 21.47
|
40.21 + 25.16
|
55.21 + 26.92
|
42.41 + 21.02
|
No
|
50
|
38
|
44.90 + 27.34
|
29.50 + 36.66
|
44.11 + 39.96
|
51.74 + 19.06
|
57.56 + 19.17
|
63.90 + 27.11
|
61.20 + 24.70
|
48.92 + 15.86
|
P
|
|
|
.001
|
.149
|
.548
|
.000
|
.126
|
.000
|
.319
|
.032
|
Anemia
|
Yes
|
61
|
47
|
29.92 + 25.86
|
20.08 + 31.56
|
37.15 + 38.05
|
42.78 + 23.50
|
49.65 + 21.78
|
44.95 + 29.75
|
52.62 + 26.87
|
42.81 + 19.99
|
No
|
70
|
53
|
39.29 + 26.03
|
26.43 + 34.55
|
45.31 + 38.82
|
44.26 + 19.41
|
57.84 + 19.13
|
53.00 + 26.59
|
61.75 + 24.94
|
46.71 + 18.84
|
P
|
|
|
.030
|
.206
|
.167
|
.693
|
.024
|
.094
|
.043
|
.183
|
Arthralgia and
bone pain
|
Yes
|
85
|
65
|
31.53 + 24.83
|
17.94 + 30.28
|
32.54 + 37.43
|
39.58 + 20.45
|
51.36 + 19.44
|
42.91 + 26.42
|
53.00 + 25.40
|
42.31 + 19.17
|
No
|
46
|
35
|
41.20 + 27.95
|
33.70 + 36.22
|
58.09 + 35.23
|
50.94 + 21.19
|
58.95 + 22.33
|
60.98 + 28.13
|
65.82 + 25.77
|
49.67 + 19.13
|
P
|
|
|
.052
|
.004
|
.000
|
.003
|
.045
|
.001
|
.008
|
.053
|
Characteristics of symptoms and quality of life scores
Of all patients, 69% expressed that they often had bodily pains due to issues related with the disease, and 66% stated that bodily pains affected their daily lives. Both who had bodily pains and had bodily pains affected their daily lives had lower mean in all eight subscales of the SF-36 scores than who did not (p < .01) (Table III).
Of all patients, 64% expressed that they often had sleep problems, and 60% stated that sleep problems affected their daily lives. Each who had sleep problems and had sleep problems affected their daily lives had lower mean in all eight subscales of the SF-36 scores than who did not (p < .01) (Table III).
Of the entire patients 73% stated that they experienced fatigue. Patients that suffered from fatigue had lower mean in all eight subscales of the SF-36 scores than those who did not (p < .05) (Table III); 70% of these patients stated that fatigue affected their daily lives. The patients who stated that fatigue affected their daily lives were found to have lower mean in all eight subscales of the SF-36 scores than who did not (p < .01) (Table III).
Table III. Characteristics of symptoms and quality of life scores
Characteristics of symptoms
|
N
|
%
|
SF-36 QoL
subscales M + SD
|
Physical
function
|
Role physical
|
Role emotional
|
energy/ fatigue
|
emotional well being
|
social functioning
|
pain
|
general health
|
Experiencing
pain
|
Yes
|
90
|
69
|
31.17 + 24.00
|
16.67 + 29.27
|
36.65 + 37.07
|
38.56 + 20.67
|
51.65 + 20.35
|
40.86 + 25.90
|
53.61 + 25.39
|
41.08 + 18.74
|
No
|
41
|
31
|
43.17 + 29.34
|
38.41 + 36.70
|
52.17 + 40.00
|
54.57 + 18.67
|
59.24 + 20.86
|
67.68 + 24.50
|
66.04 + 26.11
|
53.27 + 18.40
|
P
|
|
|
.026
|
.000
|
.033
|
.000
|
.051
|
.000
|
.009
|
.000
|
Bodily pains
affected daily living
|
Affected
|
87
|
66
|
28.45 +
22.69
|
13.51 +
26.36
|
36.39 +
35.81
|
37.65 + 20.41
|
51.44 + 21.25
|
38.62 +
23.29
|
52.15 +
24.52
|
41.01 + 18.23
|
No Affected
|
44
|
34
|
47.73 +
28.38
|
43.18 +
36.71
|
51.64 +
42.03
|
55.28 + 18.23
|
59.14 + 18.88
|
70.28 +
25.54
|
68.06 +
26.35
|
52.60 + 19.57
|
P
|
|
|
.000
|
.000
|
.043
|
.000
|
.044
|
.000
|
.000
|
.001
|
Experiencing _
sleep problems
|
Yes
|
84
|
64
|
28.10 +
22.48
|
13.99 +
23.72
|
38.08 +
37.00
|
38.14 + 20.32
|
51.60 + 20.81
|
41.54 +
25.32
|
54.40 +
26.29
|
40.99 + 17.91
|
No
|
47
|
36
|
47.13 +
28.32
|
40.43 +
40.56
|
47.64 +
40.83
|
53.28 + 19.79
|
58.35 + 20.09
|
63.03 +
28.30
|
63.03 +
25.27
|
51.87 + 20.20
|
P
|
|
|
.000
|
.000
|
.145
|
.000
|
.074
|
.000
|
.088
|
.002
|
Sleep problems
affected daily living
|
Affected
|
78
|
60
|
27.24 + 22.43
|
12.82 + 23.06
|
32.89 + 35.82
|
37.92 + 19.76
|
48.46 + 19.09
|
39.64 + 24.76
|
50.61 + 24.46
|
38.62 + 16.31
|
No Affected
|
53
|
40
|
46.23 + 27.61
|
39.15 + 39.38
|
54.20 + 39.20
|
51.90 + 21.02
|
62.22 + 20.51
|
63.40 +
27.37
|
67.64 + 25.47
|
54.13 + 20.05
|
P
|
|
|
.000
|
.000
|
.001
|
.000
|
.000
|
.000
|
.000
|
.000
|
Experiencing
fatigue
|
Yes
|
95
|
73
|
29.84 +
25.14
|
16.58 +
27.19
|
34.02 +
35.71
|
39.07 + 20.52
|
49.99 + 19.25
|
43.79 +
27.24
|
53.23 +
25.20
|
40.92 + 17.39
|
No
|
36
|
27
|
48.33 +
24.73
|
41.67 +
40.53
|
61.27 +
39.19
|
55.44 + 18.80
|
64.68 + 20.98
|
63.68 +
26.12
|
68.75 +
25.62
|
55.39 + 20.75
|
P
|
|
|
.000
|
.000
|
.000
|
.000
|
.000
|
.001
|
.002
|
.000
|
Fatigue
affected daily living
|
Affected
|
92
|
70
|
29.29 +
23.91
|
15.22 +
26.72
|
34.41 +
36.46
|
38.39 + 20.38
|
49.77 + 18.92
|
43.31 +
27.51
|
52.39 +
24.94
|
40.63 + 16.79
|
No Affected
|
39
|
30
|
48.21 +
27.11
|
42.95 +
38.88
|
58.26 +
38.56
|
55.79 + 18.56
|
64.06 + 21.59
|
63.27 +
25.24
|
69.55 +
25.29
|
54.97 + 21.56
|
P
|
|
|
.000
|
.000
|
.001
|
.000
|
.000
|
.000
|
.000
|
.000
|
Discussion
This study seems to be the first one in Jordan to assess the QOL in Hemodialysis patients; the results of the study provide support that hemodialysis comprises the quality of life in generic physical component and mental component.
End-stage renal disease patients must cope with many adversities, like physical symptoms, special diet schedules, changes in their body image.(6)
The results of the present study showed that the overall quality of life was low in all domains
Low quality of life is not affected by gender both male and female; it affects all domains of life
We divided the patients according to age into 3 groups 20-30, 31-41, and more than 42, the patients above the age of 42 have especially low quality in 4 domains as shown in (Table 1).
Low quality of life is not affected by the level of education, and by the working status.
Although findings from other studies concentrating on sociodemographic variables provide evidence that sociodemographic as being female, older, less educated and divorced/widowed, relate to a more compromised QoL(7) . The quality of life is low any time after starting hemodialysis.Itching is causing a low quality of life in all the domains and significantly affecting physical function and social function. Since chronic pruritus is usually not manageable to medications, it can result in a weakening course, including the development of symptoms of depression, global distress, and insomnia.(8) While having anemia as a complication of ESRF decreases QoL and affecting social function and emotional wellbeing status. Anemia has been shown to have an adverse impact on health-related quality of life (QOL). Fatigue is the principal symptom of anemia, but other associated symptoms (eg, headache, depression, cognitive impairment) adversely affect patients’ quality of life as well. Health-related quality of life is reduced through the weaken social interaction.(9)
Pain in general and fatigue affecting the daily activity, and arthralgia and bone pains specifically.Sleep disturbances affect significantly QOL which has been reported in another different study.(10) Poor sleep quality influences numerous hemodialysis patients and can conceivably anticipate their morbidity, mortality, quality of life and pattern of medication use. Assessment and management of sleep quality should be an important component of care-giving to these patients. Like the general population, increased stress, anxiety, depression and worry are related to poor sleep quality in dialysis patients.(11) Poor sleep is itself a predictor of mortality and QoL(12) improvements in sleep apnea occurs after starting nocturnal HD and hence improvement in QOL(13)
Conclusion
Quality of life is decreased in patients on hemodialysis both from the symptoms of ESRD itself and from the physical and mental burden of dialysis treatment, especially in patients whose ESRF is not optimally controlled in regard of anemia Itching and sleep disturbances.
Furthermore; the care of social aspect is very important and providing psychosocial counseling is mandatory and part of care for hemodialysis patient in addition to medical care
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