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Are sleep and life quality of family caregivers affected as much as those of hemodialysis patients?
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General Hospital Psychiatry 34 (2012) 518 – 524
Are sleep and life quality of family caregivers affected as much as those of hemodialysis patients? Gülperi Çelik, M.D. a,⁎, Bilge Burcak Annagur, M.D. b , Mümtaz Yılmaz, M.D. c , Tarık Demir, M.D. d , Fatih Kara, M.D. e a
Department of Internal Medicine, Division of Nephrology, Selçuklu Faculty of Medicine, Selcuk University, 42075 Konya, Turkey b Department of Psychiatry, Selçuklu Faculty of Medicine, Selcuk University, 42075 Konya, Turkey c Department of Internal Medicine, Division of Nephrology, Kütahya State Hospital, 43100 Kütahya, Turkey d Department of Internal Medicine, Selçuklu Faculty of Medicine, Selcuk University, 42075 Konya, Turkey e Department of Public Health, Selçuklu Faculty of Medicine, Selcuk University, 42075 Konya, Turkey Received 8 December 2011; accepted 19 January 2012
Abstract Objective: The purpose of this study was to determine and compare the quality of sleep, quality of life, and anxiety and depression symptoms reported by hemodialysis (HD) patients and family caregivers of HD patients. Methods: The study included 142 pairs of HD patients and their caregivers. To assess quality of sleep, quality of life, and anxiety and depressive symptoms, the 36-item Short Form, Pittsburgh Sleep Quality Index (PSQI), and Hospital Anxiety and Depression Scale, respectively, were used. Results: For the patients, 73.9% were poor sleepers. Low Physical Component Summary (PCS) and Mental Component Summary (MCS) scores were found in 89.1% and 76.3% of HD patients, respectively. For the caregivers, 88% were poor sleepers. Low PCS and MCS scores were found in 62% and 70.4% of the caregivers, respectively. Mean PSQI scores, subjective sleep quality scores, sleep latency, sleep efficiency, sleep disturbance, use of sleep medications, and daytime dysfunction scores of the caregivers were significantly higher than the scores of the HD patients (Pb.001). Conclusions: Caregivers of dialysis patients experience adverse effects on their quality of sleep and quality of life. Educational, social, and psychological support interventions should be considered to improve their ability to cope. © 2012 Elsevier Inc. All rights reserved. Keywords: Hemodialysis patients; Family caregivers; Quality of sleep; Quality of life
1. Introduction End-stage renal disease (ESRD) has been associated with detrimental effects on health, sleep disorders, lowering quality of life (QOL) and depression, which, in turn, further aggravates the patients' well-being. This may result from several factors, such as the need for changing diet and ⁎ Corresponding author. Division of Nephrology, Department of Internal Medicine, Selçuklu School of Medicine, Selçuk University, 42075 Konya, Turkey. Tel.: +903322415000; fax: +90 3322416065. E-mail addresses: [email protected] (G. Çelik), [email protected] (B.B. Annagur), [email protected] (M. Yılmaz), [email protected] (T. Demir), [email protected] (F. Kara). 0163-8343/$ – see front matter © 2012 Elsevier Inc. All rights reserved. doi:10.1016/j.genhosppsych.2012.01.013
habits, following a strict therapeutic regimen, coping with an incurable disease and depending on a machine. In addition, ESRD is known to have a negative effect on energy and vitality levels, sometimes reducing or limiting the social interactions and affecting mental health [1]. Both poor sleep and depression in hemodialysis (HD) patients have been associated with reduced QOL and increased mortality risk [2]. Sleep and sleep-related disorders are common in ESRD patients. It has been shown that sleep problems, as per the Pittsburgh Sleep Quality Index (PSQI), in HD patients are associated with diminished QOL [3]. Some clinical trials have investigated the relationship between disordered sleep and the QOL among HD and other chronically ill patients; they have described quality of sleep as an independent
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factor in QOL, showing that sleep-related disorders impair QOL in HD patients [4,5]. Numerous studies have demonstrated that HD patients had a lower QOL than that of a healthy population [1,6,7]. Patients with ESRD receiving maintenance dialysis suffer from a multitude of physical and emotional symptoms, exhibit a particularly high prevalence of depression and experience substantial impairments in QOL. Depression and anxiety are also common in ESRD patients receiving chronic HD, with rates ranging between 20% and 70% and between 30% and 60%, respectively [8,9]. Chronic diseases influence both the patients' and caregivers' lives [10]. There is no doubt that the caregiver role is stressful. It is associated with increased levels of sleep disturbances and impoverished physical health [11,12]. Informal caregivers can experience stress from the added responsibilities of managing the patients' medical treatments, dietary requirements, clinic appointments and psychosocial issues [13]. These family member caregivers (FCs) face changes in their lives that affect their daily routines. Such changes may involve their financial well-being, relationships with others, and their own physical and mental health. These may lead to disturbances in their quality of sleep, QOL, and symptoms of anxiety and depression [14,15]. Although quality of sleep, QOL, and anxiety and depressive symptoms among HD patients have been documented, little of the literature has addressed the effects of chronic kidney disease and the HD process on the FCs of HD patients. When designing this study, we hypothesized that FCs have a similarly and, in some cases, may have a harder time than the patients they are caring for. Therefore, we determined and compared the quality of sleep, QOL, and anxiety and depressive symptoms reported by HD patients and their FCs and examined the relationship between these variables.
2. Methods 2.1. Study design The study was a cross-sectional, multicenter, multidimensional instrument assessing the association of quality of sleep, QOL, and depression and anxiety symptoms in a patient cohort with ESRD on HD treatments and their caregivers. 2.2. Participants The cross-sectional study of 142 pairs of HD patients and their healthy FCs was conducted in Turkey. Prevalent ESRD patients in Kütahya State Hospital, Private Dialysis Center in Kütahya and Selçuk University Hospital in Konya 18 years or older who received treatment with HD were eligible for the study. The recruitment period ran over a 6-month period from April 2011 until October 2011. The HD patients included in this study were undergoing three weekly sessions of HD that lasted 3–4 h using standard bicarbonate dialysis
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for more than 6 months. Exclusion criteria included age of less than 18 years or more than 70 years, active malignancy, active infection, active coronary artery disease (e.g., unstable angina, myocardial infarction) advanced dementia, active alcohol abuse or refractory psychiatric disease. This study was conducted in accordance with the principles of the Declaration of Helsinki. Informed consent was obtained from all subjects prior to enrolment. The study was approved by the Selçuk University, Selçuklu School of Medicine ethical committee. 2.3. Variables 2.3.1. Quality of sleep Quality of sleep was measured using the PSQI [16]. This self-administered questionnaire assesses quality of sleep during the previous month and contains 19 self-rated questions yielding seven components: subjective sleep qualities, sleep latency, sleep duration, sleep efficiency, sleep disturbances, use of sleep medications and daytime dysfunction. Each component is scored from 0 to 3, yielding a global PSQI score between 0 and 21, with higher scores indicating a lower quality of sleep. The PSQI is useful in identifying good and poor sleepers. A global PSQI score of more than 5 indicates that a person is a “poor sleeper,” having severe difficulties in at least two areas or moderate difficulties in more than three areas [16]. 2.3.2. Quality of life QOL was measured with the 36-item Short Form (SF-36) [17]. This survey has been used extensively in populations of patients with renal disease. The SF-36 is a 36-item, self-administered questionnaire that yields scores for eight domains of life: physical functioning (PF), role limitations– physical (RP), role limitations–emotional (RE), bodily pain (BP), general health perceptions (GH), vitality (VT), social functioning (SP) and mental health (MH). It also has two summary scores: a mental component summary score (MCS) and a physical component summary score (PCS). Each of the eight domains is scored on a scale of 100, with higher scores indicating better functioning. The MCS and PCS scores are standardized to a mean (S.D.) of 50 [18], with scores below 50 indicating low average functioning. SF-36 is a widely used and validated questionnaire for assessing QOL in populations, including patients with ESRD [19]. Although there are disease-specific versions of healthrelated QOL questionnaires [20], they have not been universally adopted for studies of patients on dialysis. Disease-specific QOL questionnaires are more sensitive in detecting differences in domains that have been targeted as “dialysis-related”; however, the relative importance of the ESRD domains (BP, travel, diet restriction and dialysis access) over the generic domains (PF, VT and MH) is unclear. In this study, we also considered how to assess the QOL of the FCs. In a study of caregivers of patients with dementia, QOL was assessed through individual interviews with the investigator scoring for health, social and family
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life, paid employment and stress. There are, however, few questionnaires designed and validated specifically for caregivers. The Alzheimer's Carers' Quality of Life Instrument by Galen Research is a rare exception, but this has not been used for caregivers of patients with renal failure. Thus, we decided to apply the same generic SF-36 questionnaire for both the patient and caregiver to simplify the conduct of the study [15]. 2.3.3. Anxiety and depressive symptoms Anxiety and depressive symptoms were measured using the Hospital Anxiety and Depression Scale (HADS) [21,22]. HADS was divided into an anxiety subscale (HAD-A) and a depressive symptoms subscale (HAD-D), both containing seven intermingled items. The Turkish version of the HADS used in this study has been validated by Aydemir et al. [23]. Aydemir et al. suggested a cutoff value of the anxiety subscale as 10/11 and the depressive symptoms subscale as 7/8. Accordingly, participants with those or higher scores are considered to be at risk. The lowest score for both subscales is 0, and the highest score is 21. 2.3.4. Other variables We collected comprehensive demographic information, including age, sex, cause of renal disease, time on dialysis, comorbid conditions, educational level, socioeconomic status, marital status and presence of partner, by interview and chart review. A monthly income of US$ 500 was designated as low economic status, a monthly income of US $ 500–1500 was designated as medium financial status, and a monthly income above US$ 1500 was designated as good economic status.
HD patients and their FCs included in the study are shown in Table 1. Of the patients, 105 (73.9%) were poor sleepers. Low (scores b50) PCS and MCS scores were found in 122 (89.1%) and 103 (76.3%) of HD patients, respectively. Seventy-five (52.8%) patients were above the cutoff score for clinically significant depressive symptoms, and 27 (19.0%) of the patients were above the cutoff score for clinically significant symptoms of anxiety. Of the caregivers, 125 (88%) were poor sleepers. Low PCS and MCS scores were found in 88 (62%) and 100 (70.4%) of the caregivers, respectively. In addition, depressive symptoms and anxiety were observed in 60 (43.3%) and 39 (27.5%) of the caregivers, respectively. 3.1. Predictors of global sleep score and sleep quality When the bivariate correlation of global sleep score with other variables was assessed for HD patients, there were significant positive relationships between the global sleep score and duration of dialysis, depression, anxiety, and parathyroid hormone (PTH) (r=0.25, P=.007; r=0.27, P=.001; r=0.32, Pb.001; and r=0.22, P=.019, respectively). However, there were negative correlations between global sleep score and PCS, PF, BP and MH (r=−0.25, P=.04; r= −0.24, P=.010; r=−0.23, P=.011 and r=−0.31, P=.001). For FCs, the global sleep score was positively correlated with depression and anxiety (r=0.316, Pb.001; r=0.420, Pb.001). In contrast, the global sleep score was positively correlated with PF, RP, BP, GH, VT, SF, RE, MH, PCS and MCS (r=−0.449, Pb.001; r=−0.426, Pb.001; r=−0.487,
2.4. Statistical analysis
Table 1 Characteristics of the 142 pairs of HD patients and FCs included in the study
Data were analyzed with SPSS version 15 statistical software. Variables are presented as mean±standard deviation (S.D.) or frequency. The data had previously been submitted to a normality test (Kolmogorov–Smirnov). The correlation between data was analyzed using Pearson correlation test and multiple linear regression analysis. A χ 2 test was used to compare categorical data. The differences between the two groups were compared with the independent-samples t tests. For the subgroup analysis according to age, the differences between the groups were compared with the one-way analysis of variance test. All tests were twotailed, and the level of significance was Pb.05.
Variable
Patients
Age (years) mean±S.D. (range)
57.3±15.9 (22–70)
3. Results The study screened 142 pairs of HD patients and their FCs. The mean age of the FCs was 46.1±10.89 years. Most FCs were women (62%). The mean age of the patients on HD in this study was 57.33±15.89 years. Of the patients, 75 (52.8%) were men and 67 (47.2%) were women. The demographic and clinical characteristics of the 142 pairs of
Caregivers
46.1±10.9 (20–64) Female/male n (%) 67 /75 (47.2/52.8) 88/54 (62/38) Dialysis duration (month) 51.5±44.9 (6.0-216.0) – Residual urine ml/24 h 82.1 ±214.8 (0–1000) – Kt/V 1.4±0.3 (0.7–2.1) – URR 68.5±7.3 (55–83) – Diabetes n (%) 34 (23.9) 0 (0%) Coronary artery disease n (%) 14 (10.0) 0 (0%) Congestive heart failure n (%) 35 (24.6) 0 (0%) Smoking n (%) 17 (12.0) 39 (27.5) Arteriovenous fistula/catheter n (%) 123/19 (86.6/13.4) – Single or widowed n (%) 42 (29.6) 41 (28.9) Married n (%) 100 (70.4) 101 (71.1) Illiterate n (%) 16 (11.2) 0 (0%) Literate n (%) 27 (19.0) 2 (1.4%) Primary school education n (%) 75 (52.8) 12(8.5%) Middle school graduate n (%) 11 (7.7) 63 (44.4%) High school graduate n (%) 10 (7.0) 48 (33.8%) University n (%) 4 (2.8) 17 (12%) Low economic status n (%) 68 (47.9) 68 (47.9) Medium financial situation n (%) 67 (47.2) 67 (47.2) Good economic situation n (%) 7 (4.9) 7 (4.9) Kt/V, the adequacy of dialysis; URR, urea removal ratio.
G. Çelik et al. / General Hospital Psychiatry 34 (2012) 518–524 Table 2 Correlation of subjective sleep quality in HD patients (n=142) Parameters
Subjective sleep quality Dialysis duration Adequacy of dialysis, Kt/V URR PCS MCS Physical functioning Role-physical Bodily pain Vitality Social functioning Mental health Depression Anxiety
HD patients
FCs
r
P
r
P
0.249 0.218 0.254 −0.208 −0.271 −0.202 −0.216 −0.214 −0.246 −0.287 −0.320 0.289 0.355
.003 .019 .006 .025 .003 .029 .019 .021 .007 .002 .001 .002 .001
– – – −0.454 −0.510 −0.413 −0.460 −0.486 −0.496 −0.467 −0.407 −0.334 0.379
– – – b.001 b.001 b.001 b.001 b.001 b.001 b.001 b.001 b.001 b.001
r, correlation coefficient; P, significance.
Pb.001; r=−0.415, Pb.001; r=−0.367, Pb.001; r=−0.390, Pb.001; r=−0.496, Pb.001; r=−0.287, P=.001; r=−0.482, Pb.001 and r=−0.423, P=.001, respectively). The correlations of subjective sleep quality to other variables in HD patients and FCs are shown in Table 2. When we performed linear regression analysis in HD patients, independent predictors of global PSQI were dialysis duration (β=0.222, P=.010), PCS (β=−0.887, P=.028) and MH (β=−0.815, P=.011). Independent predictors of subjective sleep quality were dialysis duration (β=0.271, P=.002) and anxiety (β=0.273, P=.024). Independent predictor of global PSQI in FCs was anxiety (β=0.285, P=.022), and independent predictors of sleep quality were PF, RP, BP and VT (β=−1.481, P=.017; β=−1.308, P=.025; β=−1.153, P=.015 and β=−0.687, P=.024, respectively).
(r=−0.347, Pb.001), sleep disturbances (r=−0.489, Pb.001), daytime dysfunction (r=−0.465, Pb.001) and global PSQI (r=−0.482, Pb.001). Predictors of MCS were subjective sleep quality (r=−0.510, Pb.001), sleep latency (r=−0.201, P=.017), sleep duration (r=−0.180, P=.032), sleep disturbances (r=−0.455, Pb.001), daytime dysfunction (r=−0.491, Pb.001) and global PSQI (r=−0.423, Pb.001). When we performed linear regression analysis, independent predictors of PCS were sleep disturbances (β=−0.280, P=.015) and daytime dysfunction (β=−0.282, P=.009). Independent predictors of MCS were subjective sleep quality (β=−0.293, P=.001), sleep disturbances (β=−0.252, P=.023) and daytime dysfunction (β=−0.362, P=.001). When comparing patients with FCs, FCs of HD patients reported high global PSQI and low QOL scores. Moreover, mean PSQI scores, subjective sleep quality scores, sleep latency, sleep efficiency, sleep disturbance, use of sleep medications and daytime dysfunction scores of the caregivers were significantly higher compared with those of the HD patients (Pb.001) (Table 3). The above results were similar for all age groups (20–40, 40–60 and 60–80) (Pb.001). When we assessed the sociodemographic characteristics, married HD patients showed significantly better QOL than single HD patients (Pb.001). When comparing patients with FCs, the QOL of the patients assessed proved to be globally reduced, mainly concerning the physical health domain, in all age ranges, with a relative preservation of the MH, SP and emotional problems domains. FCs also had
Table 3 The mean±S.D. (range) scores for global and component PSQI, SF-36 MCS and PCS, and HAD depression and anxiety domains for HD patients and FCs of HD patients Variable
3.2. Predictors of PCS and MCS When the bivariate correlation of MCS and PCS with other variables was assessed in the HD patients, PCS was correlated with age (r=−0.443, Pb.001), dialysis duration (r=−0,178, P=.036), residual urine (r=0.215, P=.011), use of sleep medications (r=−0.274, P=.003), daytime dysfunction (r=−0.468, Pb.001), creatinine (r=0.282, P=.001) and albumin (r=0,187, P=.029). MCS was correlated with PCS (r=0.351, Pb.001), subjective sleep quality (r=−0.271, P=.003), sleep disturbances (r=−0.200, P=.032), daytime dysfunction (r=−0.224, P=.016) and PTH (r=−0.211, P=.013). When we performed linear regression analysis, independent predictors of PCS were age (β=−0.355, Pb.001), sleep disturbances (β=−0.298, P=.001) and MCS (β=0.390, Pb.001). Independent predictors of MCS were dialysis duration (β=0.267, P=.006), PTH (β=−0.215, P=.019) and subjective sleep quality (β=−0.222, P=.025). When the bivariate correlation of MCS and PCS with other variables was assessed in FCs, predictors of PCS were subjective sleep quality (r=−0.454, Pb.001), sleep latency
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Quality of sleep Global PSQI Subjective sleep quality Sleep latency Sleep duration Sleep efficiency Sleep disturbance Use of sleep medications Daytime dysfunction Quality of life MCS PCS Physical functioning Role-physical Bodily pain General health Vitality Social functioning Role-emotional Mental health HAD Depression scores Anxiety scores
HD patients
FCs of HD patients
P
7.7±2.8 1.1±0.8 1.4±0.8 0.8±0.7 1.3±1.4 1.7±0.6 0.7±0.9 1.0±0.8
11.9±3.0 2.2±0.8 1.8±0.7 0.7±0.5 2.2±1.3 2.4±0.6 1.3±0.8 1.7±0.8
b.001 b.001 b.001 NS b.001 b.001 b.001 b.001
40.9±10.6 38.9±8.1 48.8±27.0 41.5±34.0 56.9±22.2 44.2±12.3 51.3±21.7 55.6±25.1 37.1±33.8 53.1±21.0
43.1±8.7 44.3±10.1 69.8±27.5 65.3±40.2 62.5±23.7 52.0±21.2 54.7±19.7 64.0±23.5 61.2±41.9 59.9±15.9
b.001 .027 b.001 b.001 .042 b.001 NS .004 b.001 .002
8.1±4.3 7.4±3.9
7.2±4.7 7.8±4.4
Independent-samples t test was used to compare groups.
NS NS
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Fig. 1. Mean scores for components of the PSQI for the 142 pair hemodialysis patients and family caregiver of hemodialysis patients.
globally reduced physical and MH domains. Contrary to the HD patients, the FCs had relative lower MH and general health scores than they did for the other domains (Table 3).
Fig. 3. Mean scores for component of Hospital Anxiety and Depression Scale (HAD) of hemodialysis patients and caregivers.
Quality of sleep, QOL and HAD scores for both groups are shown in Figs. 1, 2 and 3, respectively.
4. Discussion
Fig. 2. Mean scores for components of the SF-36 for the 142 pair hemodialysis patients and family caregiver of hemodialysis patients. MCS, SF-36 Mental Component Summary; PCS, SF- 36 Physical Component Summary; PF, Physical Functioning; RF, Role-physical; BP, Bodily pain; GH, General health; VT, Vitality; SF, Social functioning; RE, Roleemotional; MH, Mental health.
To the best of our knowledge, this is the first study to assess the quality of sleep of FCs of HD patients. We examined the quality of sleep, QOL, and anxiety and depressive symptoms in 142 subjects with ESRD on HD and 142 healthy FCs of HD patients and found a prevalence of “poor sleep” (global PSQIN5) in 73.9% of the patients and 88% of the FCs. The main finding of this study is that the FCs of HD patients have a higher rate of poor sleep quality than do the patients themselves according to the PSQI. Another important finding of this study, involving a large number of patients on chronic HD and their FCs, is the confirmation that depressive symptoms affect 52.8% of patients and 43.3% of caregivers. Patients with ESRD have a remarkably high rate of sleep complaints and a higher prevalence of sleep disorders than do the general population [24]. Our results showed that the prevalence of poor sleep quality in our HD patients was also high, which was within the previously reported range of 41%– 83% [3,25–28]. Our percentage of patients with poor sleep was close to the rates reported by Iliescu et al. (71%) [3] and Pai et al. (74.4%) [26]. The poor sleep quality of these patients may be due to the adjustment of their sleep–wake behavior to the time requirements of the dialysis regimen. This adjustment is likely to be different for patients on home therapies versus incenter HD, as patients receiving in-center HD would have to adjust (arise earlier) their wake-up times to show up for their dialysis treatments.
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In Turkey, caregivers of HD patients are usually family members. Family caregiving occurs when family members provide assistance beyond what is considered everyday assistance. Caregiving is usually a long-term, sometimes permanent, responsibility. FCs are considered “informal” caregivers and are part of a system that consists of family, partners, children and others who may fit the traditional definition of family. Family caregivers also provide direct care by assisting with independent and dependent activities of daily living. The FCs in Turkey usually are middle-aged (usually 45– 55 years old), married women who spend about 18 h per week caring for her relative who lives nearby. Many of these FCs still have dependent children at home. Along with these concerns, caregiving can create financial burdens. FCs are employed either full-time or part-time, and there may be employment changes, such as taking time off, arriving late/ leaving early or decreasing work hours, caused by their responsibilities. FCs may also have nonreimbursable caregiving expenses, thereby diminishing their own household income. FCs may need to readjust their lifestyles as they are deprived of their habits. However, studies concerning quality of sleep are scarce. In the literature, it is reported that up to 90% of caregivers report sleep disturbances in caregivers of heart failure patients [11]. In the present study, FCs of HD patients also had a high prevalence of poor sleep. When compared to the HD patients, our cohort of caregivers had objective evidence of increased global PSQI scores, shorter sleep time, sleep disturbances, use of sleep medications and daytime dysfunction. The SF-36 MCS and PCS have previously been reported to correlate inversely with the global PSQI score for HD patients [3]. Results of our study have shown a significant negative correlation between the global PSQI of our patients and their PCS and MH. In our study, physical QOL was correlated with sleep disturbances, and mental QOL was correlated with subjective sleep quality. This is in accordance with similar studies by Elder et al., Cengić et al. and Gusbeth-Tatomir et al. [25,29,30]. End-stage chronic kidney disease considerably reduces the physical and professional performances of patients, leading to a negative impact on their perception of their own health and affecting their VT levels, which may limit their social interactions and cause problems related to MH [1]. In our study, impairment was shown in the different domains assessed by the SF-36, the lowest values being observed in physical health, which is in accordance with the medical literature [1,31,32]. In the present study, 76.3% and 89.1% of the studied patients had lower QOL scores (scores b50) in the mental and physical domains, respectively. Similarly, Yang et al. [33] showed that 68.4% and 91.1% of the studied patients had lower QOL scores in the mental and physical domains, respectively. Family support helps with managing the severity of illness and coping with stressful situations. The majority of the renal failure patients live with their family because most
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patients experience good support through their family ties in the traditional Turkish culture. Social support has beneficial effects on the domains of QOL. In our study, married patients showed significantly better QOL than single patients, indicating that most patients experience good support from their spouses and children. This finding was consistent with other studies [34,35]. It has been reported in the literature that, similar to HD patients, the QOL of FCs is negatively affected [6,7]. In our study, both PCS and MCS mean scores of FCs were lower than 50. However, FCs' mean scores for all QOL domains were significantly higher than the mean scores of HD patients, except for the VT and BP domains. Contrary to HD patients, FCs had relatively low MH and general health scores than they did for the other domains. In the literature, Fan et al. [36] showed that the QOL, as assessed by SF-36 questionnaires, was impaired for the HD patients and their caregivers [36]. Fan et al. also found that the MH domain scores worsened in the caregivers with the most dependent patients. In the study by Belasco et al. [37], most of the caregivers of HD patients were women (78%) aged 55±15 years, and the caregivers' emotional aspect, VT and MH were the most affected dimensions. Of these caregivers, 32% showed signs of depression. Belasco et al. [37] showed that caregivers of elderly peritoneal dialysis patients showed worse scores in several domains compared with the caregivers of HD patients, including the PF, VT and SF domains. Depression is the most common psychological problem encountered among dialysis patients [12]. Riezebos et al. [21] found that depressive symptoms were highly prevalent in their patients with ESRD. In their study, 42 patients (41.6%) had depressive symptoms, defined as a HADS-D score equal to or more than 7. In our study, the percentage of depressive symptoms in HD patients and their FCs was 52.8% and 43.3%, respectively. The FCs had a lower percentage of depressive symptoms than did the HD patients. Several limitations of this study must be considered. First, this is an observational, cross-sectional study. The causal inferences of reduced quality of sleep, QOL, anxiety and depressive symptom remain unclear. Second, we should acknowledge that standard subjective sleep questionnaires have limited applicability in screening or diagnosing sleep disorders in ESRD patients and their FCs. While the PSQI is a widely accepted subjective tool for measuring sleeping problems, a polysomnographic approach would have been a more objective and reliable test. However, polysomnography would have been very difficult to perform on 142 pairs of patients and FCs. Moreover, in our country, we unfortunately do not have polysomnographic institutes due to the economic constraints that healthcare authorities are facing. Third, this study has been conducted with psychiatric scales. More information could be attained through psychiatric interviews. Finally, we have no control group of age-matched participants who are neither HD patients nor carers.
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5. Conclusion ESRD and dialysis dependency are associated with impaired and highly variable sleep quality, life quality and mood. This study shows that HD patients have markedly impaired sleep quality. However, their FCs have worse global PSQI scores than the HD patients. In addition, the QOL of the patients assessed proved to be globally reduced, mainly concerning the physical health domain. Contrary to the HD patients, the FCs had relatively lower MH and general health scores than they did for the other domains. In conclusion, FCs of dialysis patients experience adverse effects on their quality of sleep and QOL. Periodic psychiatric evaluation of HD patients and FCs by hemodialysis physicians using valid scales may be effective in identifying patients and caregivers who show symptoms of anxiety, depression, and poor quality of sleep and life. Educational, social and psychological support interventions may improve the quality of sleep and life of both the HD patients and their caregivers. References [1] Silveira CB, Pantoja IK, Silva AR, et al. Quality of life of hemodialysis patients in a Brazilian Public Hospital in Belém-Pará. J Bras Nefrol 2010;32:37–42. [2] Paparrigopoulos T, Theleritis C, Tzavara C, Papadaki A. Sleep disturbance in haemodialysis patients is closely related to depression. Gen Hosp Psychiatry 2009;31:175–7. [3] Iliescu EA, Coo H, McMurray MH, et al. Quality of sleep and healthrelated quality of life in haemodialysis patients. Nephrol Dial Transplant 2003;18:126–32. [4] Unruh ML, Sanders MH, Redline S, et al. Subjective and objective sleep quality in patients on conventional thrice-weekly hemodialysis: comparison with matched controls from the sleep heart health study. Am J Kidney Dis 2008;52:305–13. [5] Parker KP, Bliwise DL, Bailey JL, Rye DB. Daytime sleepiness in stable hemodialysis patients. Am J Kidney Dis 2003;41:394–402. [6] Wolcott DL, Nissenson AR, Landsverk J. Quality of life in chronic dialysis patients: factors unrelated to dialysis modality. Gen Hosp Psychiatry 1988;10:267–77. [7] Cruz MC, Andrade C, Urrutia M, Draibe S, Nogueira-Martins LA, SessoRde C. Quality of life in patients with chronic kidney disease. Clinics (Sao Paulo) 2011;66:991–5. [8] Cukor D, Coplan J, Brown C, et al. Depression and anxiety in urban hemodialysis patients. Clin J Am Soc Nephrol 2007;2:484–90. [9] Cukor D, Coplan J, Brown C, et al. Anxiety disorders in adults treated by hemodialysis : a single-center study. Am J Kidney Dis 2008;52:128–36. [10] Canam C, Acorn S. Quality of life for family caregivers of people with chronic health problems. RehabilNurs 1999;24:192–6. [11] Rausch SM, Baker K, Boonmee J. Sleep disturbances in caregivers of patients with end-stage congestive heart failure: part I — the problem. Prog Cardiovasc Nurs 2007;22:38–40. [12] Wilson-Genderson M, Pruchno RA, Cartwright FP. Effects of caregiver burden and satisfaction on affect of older end stage renal disease patients and their spouses. Psychol Aging 2009;24:955–67. [13] Campbell AR. Family caregivers: caring for aging end-stage disease partners. Adv Ren Replace Ther 1998;5:98–108. [14] Chen CK, Tsai YC, Hsu HJ, et al. Depression and suicide risk in hemodialysis patients with chronic renal failure. Psychosomatics 2010;51:528–528.e6.
[15] Tong A, Sainsbury P, Craig JC. Support interventions for caregivers of people with chronic kidney disease: a systematic review. Nephrol Dial Transplant 2008;23:3960–5. [16] Buysse DJ, Reynolds CF, Monk TH, Berman SR, Kupfer DJ. The Pittsburgh Sleep Quality Index: a new instrument for psychiatric practice and research. Psychiatry Res 1989;28:193–213. [17] Beddhu S, Bruns FJ, Saul M, Seddon P, Zeidel ML. A simple comorbidity scale predicts clinical outcomes and costs in dialysis patients. Am J Med 2000;108:609–13. [18] Valderrabano F, Jofre R, Lopez-Gomez JM. Quality of life in end-stage renal disease patients. Am J Kidney Dis 2001;38:443–64. [19] Wight JP, Edwards L, Brazier J, et al. The SF36 as an outcome measure of services for end stage renal failure. Qual Health Care 1998;7:209–21. [20] Wu AW, Fink NE, Marsh-Manzi JV, et al. Changes in quality of life during hemodialysis and peritoneal dialysis treatment: generic and disease specific measures. Am Soc Nephrol 2004;15:743–53. [21] Riezebos RK, Nauta KJ, Honig A, Dekker FW, Siegert CE. The association of depressive symptoms with survival in a Dutch cohort of patients with end-stage renal disease. Nephrol Dial Transplant 2010;25(1):231–6. [22] Zigmond AS, Snaith RP. The hospital anxiety and depression scale. Acta Psychiatr Scand 1983;67:361–70. [23] Aydemir Ö, Güvenir T, Küey L, et al. Hastane Anksiyete ve Depresyon Ölçeği Türkçe formunun geçerlilik ve Güvenilirliği. Türk Psikiyatri Dergisi 1997;8:280–7. [24] Unruh ML, Buysse DJ, Dew MA, et al. Sleep quality and its correlates in the first year of dialysis. Clin J Am Soc Nephrol 2006;1:802–10. [25] Elder SJ, Pisoni RL, Akizawa T, et al. Sleep quality predicts quality of life and mortality risk in haemodialysis patients: results from the Dialysis Outcomes and Practice Patterns Study (DOPPS). Nephrol Dial Transpl 2008;23(3):998–1004. [26] Pai MF, Hsu SP, Yang SY, et al. Sleep disturbance in chronic hemodialysis patients: the impact of depression and anemia. Ren Fail 2007;29:673–7. [27] Eryavuz N, Yuksel S, Acarturk G, et al. Comparison of sleep quality between hemodialysis and peritoneal dialysis patients. Int Urol Nephrol 2008;40:785–91. [28] Unruh ML, Hartunian MG, Chapman MM, Jaber BL. Sleep quality and clinical correlates in patients on maintenance dialysis. Clin Nephrol 2003;59:280–8. [29] Cengić B, Resić H, Spasovski G, Avdić E, Alajbegović A. Quality of sleep in patients undergoing hemodialysis. Int Urol Nephrol 2010 Dec. 9 [Epub ahead of print]. doi:10.1007/s11255-010-9881-x. [30] Gusbeth-Tatomir P, Boisteanu D, Seica A, Buga C, Covic A. Sleep disorders: a systematic review of an emerging major clinical issue in renal patients. Int Urol Nephrol 2007;39:1217–26. [31] DeOreo PB. Hemodialysis patients assessed functional health status predicts continued survival, hospitalization and dialysis-attendance compliance. Am J Kidney Dis 1997;30:204–12. [32] Mingard G, Cornalba L, Cortinovis E, et al. Health-related quality of life in dialysis patients: a report from an Italian study using the SF-36 health survey. Nephrol Dial Transplant 1999;14:1503–10. [33] Yang JY, Huang JW, Peng YS, et al. Quality of sleep and psychosocial factors for patients undergoing peritoneal dialysis. Periton Dial Int 2007;27:675–80. [34] Rebollo P, Ortega F, Baltar JM, et al. Health related quality of life (HRQOL) of kidney transplanted patients: variables that influence it. Clin Transplant 2000;14:199–207. [35] Aikawa A, Arai K, Kawamura T, Sugiyama K, et al. First living related kidney transplantation results in excellent outcomes for small children. Transplant Proc 2005;37:2947–50. [36] Fan SL, Sathick I, McKitty K, Punzalan S. Quality of life of caregivers and patients on peritoneal dialysis. Nephrol Dial Transplant 2008;23:1713–9. [37] Belasco A, Barbosa D, Bettencourt AR, Diccini S, Sesso R. Quality of life of family caregivers of elderly patients on hemodialysis and peritoneal dialysis. Am J Kidney Dis 2006;48:955–63.
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Are sleep and life quality of family caregivers affected as much as those of hemodialysis patients? Gülperi Çelik, M.D. a,⁎, Bilge Burcak Annagur, M.D. b , Mümtaz Yılmaz, M.D. c , Tarık Demir, M.D. d , Fatih Kara, M.D. e a
Department of Internal Medicine, Division of Nephrology, Selçuklu Faculty of Medicine, Selcuk University, 42075 Konya, Turkey b Department of Psychiatry, Selçuklu Faculty of Medicine, Selcuk University, 42075 Konya, Turkey c Department of Internal Medicine, Division of Nephrology, Kütahya State Hospital, 43100 Kütahya, Turkey d Department of Internal Medicine, Selçuklu Faculty of Medicine, Selcuk University, 42075 Konya, Turkey e Department of Public Health, Selçuklu Faculty of Medicine, Selcuk University, 42075 Konya, Turkey Received 8 December 2011; accepted 19 January 2012
Abstract Objective: The purpose of this study was to determine and compare the quality of sleep, quality of life, and anxiety and depression symptoms reported by hemodialysis (HD) patients and family caregivers of HD patients. Methods: The study included 142 pairs of HD patients and their caregivers. To assess quality of sleep, quality of life, and anxiety and depressive symptoms, the 36-item Short Form, Pittsburgh Sleep Quality Index (PSQI), and Hospital Anxiety and Depression Scale, respectively, were used. Results: For the patients, 73.9% were poor sleepers. Low Physical Component Summary (PCS) and Mental Component Summary (MCS) scores were found in 89.1% and 76.3% of HD patients, respectively. For the caregivers, 88% were poor sleepers. Low PCS and MCS scores were found in 62% and 70.4% of the caregivers, respectively. Mean PSQI scores, subjective sleep quality scores, sleep latency, sleep efficiency, sleep disturbance, use of sleep medications, and daytime dysfunction scores of the caregivers were significantly higher than the scores of the HD patients (Pb.001). Conclusions: Caregivers of dialysis patients experience adverse effects on their quality of sleep and quality of life. Educational, social, and psychological support interventions should be considered to improve their ability to cope. © 2012 Elsevier Inc. All rights reserved. Keywords: Hemodialysis patients; Family caregivers; Quality of sleep; Quality of life
1. Introduction End-stage renal disease (ESRD) has been associated with detrimental effects on health, sleep disorders, lowering quality of life (QOL) and depression, which, in turn, further aggravates the patients' well-being. This may result from several factors, such as the need for changing diet and ⁎ Corresponding author. Division of Nephrology, Department of Internal Medicine, Selçuklu School of Medicine, Selçuk University, 42075 Konya, Turkey. Tel.: +903322415000; fax: +90 3322416065. E-mail addresses: [email protected] (G. Çelik), [email protected] (B.B. Annagur), [email protected] (M. Yılmaz), [email protected] (T. Demir), [email protected] (F. Kara). 0163-8343/$ – see front matter © 2012 Elsevier Inc. All rights reserved. doi:10.1016/j.genhosppsych.2012.01.013
habits, following a strict therapeutic regimen, coping with an incurable disease and depending on a machine. In addition, ESRD is known to have a negative effect on energy and vitality levels, sometimes reducing or limiting the social interactions and affecting mental health [1]. Both poor sleep and depression in hemodialysis (HD) patients have been associated with reduced QOL and increased mortality risk [2]. Sleep and sleep-related disorders are common in ESRD patients. It has been shown that sleep problems, as per the Pittsburgh Sleep Quality Index (PSQI), in HD patients are associated with diminished QOL [3]. Some clinical trials have investigated the relationship between disordered sleep and the QOL among HD and other chronically ill patients; they have described quality of sleep as an independent
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factor in QOL, showing that sleep-related disorders impair QOL in HD patients [4,5]. Numerous studies have demonstrated that HD patients had a lower QOL than that of a healthy population [1,6,7]. Patients with ESRD receiving maintenance dialysis suffer from a multitude of physical and emotional symptoms, exhibit a particularly high prevalence of depression and experience substantial impairments in QOL. Depression and anxiety are also common in ESRD patients receiving chronic HD, with rates ranging between 20% and 70% and between 30% and 60%, respectively [8,9]. Chronic diseases influence both the patients' and caregivers' lives [10]. There is no doubt that the caregiver role is stressful. It is associated with increased levels of sleep disturbances and impoverished physical health [11,12]. Informal caregivers can experience stress from the added responsibilities of managing the patients' medical treatments, dietary requirements, clinic appointments and psychosocial issues [13]. These family member caregivers (FCs) face changes in their lives that affect their daily routines. Such changes may involve their financial well-being, relationships with others, and their own physical and mental health. These may lead to disturbances in their quality of sleep, QOL, and symptoms of anxiety and depression [14,15]. Although quality of sleep, QOL, and anxiety and depressive symptoms among HD patients have been documented, little of the literature has addressed the effects of chronic kidney disease and the HD process on the FCs of HD patients. When designing this study, we hypothesized that FCs have a similarly and, in some cases, may have a harder time than the patients they are caring for. Therefore, we determined and compared the quality of sleep, QOL, and anxiety and depressive symptoms reported by HD patients and their FCs and examined the relationship between these variables.
2. Methods 2.1. Study design The study was a cross-sectional, multicenter, multidimensional instrument assessing the association of quality of sleep, QOL, and depression and anxiety symptoms in a patient cohort with ESRD on HD treatments and their caregivers. 2.2. Participants The cross-sectional study of 142 pairs of HD patients and their healthy FCs was conducted in Turkey. Prevalent ESRD patients in Kütahya State Hospital, Private Dialysis Center in Kütahya and Selçuk University Hospital in Konya 18 years or older who received treatment with HD were eligible for the study. The recruitment period ran over a 6-month period from April 2011 until October 2011. The HD patients included in this study were undergoing three weekly sessions of HD that lasted 3–4 h using standard bicarbonate dialysis
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for more than 6 months. Exclusion criteria included age of less than 18 years or more than 70 years, active malignancy, active infection, active coronary artery disease (e.g., unstable angina, myocardial infarction) advanced dementia, active alcohol abuse or refractory psychiatric disease. This study was conducted in accordance with the principles of the Declaration of Helsinki. Informed consent was obtained from all subjects prior to enrolment. The study was approved by the Selçuk University, Selçuklu School of Medicine ethical committee. 2.3. Variables 2.3.1. Quality of sleep Quality of sleep was measured using the PSQI [16]. This self-administered questionnaire assesses quality of sleep during the previous month and contains 19 self-rated questions yielding seven components: subjective sleep qualities, sleep latency, sleep duration, sleep efficiency, sleep disturbances, use of sleep medications and daytime dysfunction. Each component is scored from 0 to 3, yielding a global PSQI score between 0 and 21, with higher scores indicating a lower quality of sleep. The PSQI is useful in identifying good and poor sleepers. A global PSQI score of more than 5 indicates that a person is a “poor sleeper,” having severe difficulties in at least two areas or moderate difficulties in more than three areas [16]. 2.3.2. Quality of life QOL was measured with the 36-item Short Form (SF-36) [17]. This survey has been used extensively in populations of patients with renal disease. The SF-36 is a 36-item, self-administered questionnaire that yields scores for eight domains of life: physical functioning (PF), role limitations– physical (RP), role limitations–emotional (RE), bodily pain (BP), general health perceptions (GH), vitality (VT), social functioning (SP) and mental health (MH). It also has two summary scores: a mental component summary score (MCS) and a physical component summary score (PCS). Each of the eight domains is scored on a scale of 100, with higher scores indicating better functioning. The MCS and PCS scores are standardized to a mean (S.D.) of 50 [18], with scores below 50 indicating low average functioning. SF-36 is a widely used and validated questionnaire for assessing QOL in populations, including patients with ESRD [19]. Although there are disease-specific versions of healthrelated QOL questionnaires [20], they have not been universally adopted for studies of patients on dialysis. Disease-specific QOL questionnaires are more sensitive in detecting differences in domains that have been targeted as “dialysis-related”; however, the relative importance of the ESRD domains (BP, travel, diet restriction and dialysis access) over the generic domains (PF, VT and MH) is unclear. In this study, we also considered how to assess the QOL of the FCs. In a study of caregivers of patients with dementia, QOL was assessed through individual interviews with the investigator scoring for health, social and family
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life, paid employment and stress. There are, however, few questionnaires designed and validated specifically for caregivers. The Alzheimer's Carers' Quality of Life Instrument by Galen Research is a rare exception, but this has not been used for caregivers of patients with renal failure. Thus, we decided to apply the same generic SF-36 questionnaire for both the patient and caregiver to simplify the conduct of the study [15]. 2.3.3. Anxiety and depressive symptoms Anxiety and depressive symptoms were measured using the Hospital Anxiety and Depression Scale (HADS) [21,22]. HADS was divided into an anxiety subscale (HAD-A) and a depressive symptoms subscale (HAD-D), both containing seven intermingled items. The Turkish version of the HADS used in this study has been validated by Aydemir et al. [23]. Aydemir et al. suggested a cutoff value of the anxiety subscale as 10/11 and the depressive symptoms subscale as 7/8. Accordingly, participants with those or higher scores are considered to be at risk. The lowest score for both subscales is 0, and the highest score is 21. 2.3.4. Other variables We collected comprehensive demographic information, including age, sex, cause of renal disease, time on dialysis, comorbid conditions, educational level, socioeconomic status, marital status and presence of partner, by interview and chart review. A monthly income of US$ 500 was designated as low economic status, a monthly income of US $ 500–1500 was designated as medium financial status, and a monthly income above US$ 1500 was designated as good economic status.
HD patients and their FCs included in the study are shown in Table 1. Of the patients, 105 (73.9%) were poor sleepers. Low (scores b50) PCS and MCS scores were found in 122 (89.1%) and 103 (76.3%) of HD patients, respectively. Seventy-five (52.8%) patients were above the cutoff score for clinically significant depressive symptoms, and 27 (19.0%) of the patients were above the cutoff score for clinically significant symptoms of anxiety. Of the caregivers, 125 (88%) were poor sleepers. Low PCS and MCS scores were found in 88 (62%) and 100 (70.4%) of the caregivers, respectively. In addition, depressive symptoms and anxiety were observed in 60 (43.3%) and 39 (27.5%) of the caregivers, respectively. 3.1. Predictors of global sleep score and sleep quality When the bivariate correlation of global sleep score with other variables was assessed for HD patients, there were significant positive relationships between the global sleep score and duration of dialysis, depression, anxiety, and parathyroid hormone (PTH) (r=0.25, P=.007; r=0.27, P=.001; r=0.32, Pb.001; and r=0.22, P=.019, respectively). However, there were negative correlations between global sleep score and PCS, PF, BP and MH (r=−0.25, P=.04; r= −0.24, P=.010; r=−0.23, P=.011 and r=−0.31, P=.001). For FCs, the global sleep score was positively correlated with depression and anxiety (r=0.316, Pb.001; r=0.420, Pb.001). In contrast, the global sleep score was positively correlated with PF, RP, BP, GH, VT, SF, RE, MH, PCS and MCS (r=−0.449, Pb.001; r=−0.426, Pb.001; r=−0.487,
2.4. Statistical analysis
Table 1 Characteristics of the 142 pairs of HD patients and FCs included in the study
Data were analyzed with SPSS version 15 statistical software. Variables are presented as mean±standard deviation (S.D.) or frequency. The data had previously been submitted to a normality test (Kolmogorov–Smirnov). The correlation between data was analyzed using Pearson correlation test and multiple linear regression analysis. A χ 2 test was used to compare categorical data. The differences between the two groups were compared with the independent-samples t tests. For the subgroup analysis according to age, the differences between the groups were compared with the one-way analysis of variance test. All tests were twotailed, and the level of significance was Pb.05.
Variable
Patients
Age (years) mean±S.D. (range)
57.3±15.9 (22–70)
3. Results The study screened 142 pairs of HD patients and their FCs. The mean age of the FCs was 46.1±10.89 years. Most FCs were women (62%). The mean age of the patients on HD in this study was 57.33±15.89 years. Of the patients, 75 (52.8%) were men and 67 (47.2%) were women. The demographic and clinical characteristics of the 142 pairs of
Caregivers
46.1±10.9 (20–64) Female/male n (%) 67 /75 (47.2/52.8) 88/54 (62/38) Dialysis duration (month) 51.5±44.9 (6.0-216.0) – Residual urine ml/24 h 82.1 ±214.8 (0–1000) – Kt/V 1.4±0.3 (0.7–2.1) – URR 68.5±7.3 (55–83) – Diabetes n (%) 34 (23.9) 0 (0%) Coronary artery disease n (%) 14 (10.0) 0 (0%) Congestive heart failure n (%) 35 (24.6) 0 (0%) Smoking n (%) 17 (12.0) 39 (27.5) Arteriovenous fistula/catheter n (%) 123/19 (86.6/13.4) – Single or widowed n (%) 42 (29.6) 41 (28.9) Married n (%) 100 (70.4) 101 (71.1) Illiterate n (%) 16 (11.2) 0 (0%) Literate n (%) 27 (19.0) 2 (1.4%) Primary school education n (%) 75 (52.8) 12(8.5%) Middle school graduate n (%) 11 (7.7) 63 (44.4%) High school graduate n (%) 10 (7.0) 48 (33.8%) University n (%) 4 (2.8) 17 (12%) Low economic status n (%) 68 (47.9) 68 (47.9) Medium financial situation n (%) 67 (47.2) 67 (47.2) Good economic situation n (%) 7 (4.9) 7 (4.9) Kt/V, the adequacy of dialysis; URR, urea removal ratio.
G. Çelik et al. / General Hospital Psychiatry 34 (2012) 518–524 Table 2 Correlation of subjective sleep quality in HD patients (n=142) Parameters
Subjective sleep quality Dialysis duration Adequacy of dialysis, Kt/V URR PCS MCS Physical functioning Role-physical Bodily pain Vitality Social functioning Mental health Depression Anxiety
HD patients
FCs
r
P
r
P
0.249 0.218 0.254 −0.208 −0.271 −0.202 −0.216 −0.214 −0.246 −0.287 −0.320 0.289 0.355
.003 .019 .006 .025 .003 .029 .019 .021 .007 .002 .001 .002 .001
– – – −0.454 −0.510 −0.413 −0.460 −0.486 −0.496 −0.467 −0.407 −0.334 0.379
– – – b.001 b.001 b.001 b.001 b.001 b.001 b.001 b.001 b.001 b.001
r, correlation coefficient; P, significance.
Pb.001; r=−0.415, Pb.001; r=−0.367, Pb.001; r=−0.390, Pb.001; r=−0.496, Pb.001; r=−0.287, P=.001; r=−0.482, Pb.001 and r=−0.423, P=.001, respectively). The correlations of subjective sleep quality to other variables in HD patients and FCs are shown in Table 2. When we performed linear regression analysis in HD patients, independent predictors of global PSQI were dialysis duration (β=0.222, P=.010), PCS (β=−0.887, P=.028) and MH (β=−0.815, P=.011). Independent predictors of subjective sleep quality were dialysis duration (β=0.271, P=.002) and anxiety (β=0.273, P=.024). Independent predictor of global PSQI in FCs was anxiety (β=0.285, P=.022), and independent predictors of sleep quality were PF, RP, BP and VT (β=−1.481, P=.017; β=−1.308, P=.025; β=−1.153, P=.015 and β=−0.687, P=.024, respectively).
(r=−0.347, Pb.001), sleep disturbances (r=−0.489, Pb.001), daytime dysfunction (r=−0.465, Pb.001) and global PSQI (r=−0.482, Pb.001). Predictors of MCS were subjective sleep quality (r=−0.510, Pb.001), sleep latency (r=−0.201, P=.017), sleep duration (r=−0.180, P=.032), sleep disturbances (r=−0.455, Pb.001), daytime dysfunction (r=−0.491, Pb.001) and global PSQI (r=−0.423, Pb.001). When we performed linear regression analysis, independent predictors of PCS were sleep disturbances (β=−0.280, P=.015) and daytime dysfunction (β=−0.282, P=.009). Independent predictors of MCS were subjective sleep quality (β=−0.293, P=.001), sleep disturbances (β=−0.252, P=.023) and daytime dysfunction (β=−0.362, P=.001). When comparing patients with FCs, FCs of HD patients reported high global PSQI and low QOL scores. Moreover, mean PSQI scores, subjective sleep quality scores, sleep latency, sleep efficiency, sleep disturbance, use of sleep medications and daytime dysfunction scores of the caregivers were significantly higher compared with those of the HD patients (Pb.001) (Table 3). The above results were similar for all age groups (20–40, 40–60 and 60–80) (Pb.001). When we assessed the sociodemographic characteristics, married HD patients showed significantly better QOL than single HD patients (Pb.001). When comparing patients with FCs, the QOL of the patients assessed proved to be globally reduced, mainly concerning the physical health domain, in all age ranges, with a relative preservation of the MH, SP and emotional problems domains. FCs also had
Table 3 The mean±S.D. (range) scores for global and component PSQI, SF-36 MCS and PCS, and HAD depression and anxiety domains for HD patients and FCs of HD patients Variable
3.2. Predictors of PCS and MCS When the bivariate correlation of MCS and PCS with other variables was assessed in the HD patients, PCS was correlated with age (r=−0.443, Pb.001), dialysis duration (r=−0,178, P=.036), residual urine (r=0.215, P=.011), use of sleep medications (r=−0.274, P=.003), daytime dysfunction (r=−0.468, Pb.001), creatinine (r=0.282, P=.001) and albumin (r=0,187, P=.029). MCS was correlated with PCS (r=0.351, Pb.001), subjective sleep quality (r=−0.271, P=.003), sleep disturbances (r=−0.200, P=.032), daytime dysfunction (r=−0.224, P=.016) and PTH (r=−0.211, P=.013). When we performed linear regression analysis, independent predictors of PCS were age (β=−0.355, Pb.001), sleep disturbances (β=−0.298, P=.001) and MCS (β=0.390, Pb.001). Independent predictors of MCS were dialysis duration (β=0.267, P=.006), PTH (β=−0.215, P=.019) and subjective sleep quality (β=−0.222, P=.025). When the bivariate correlation of MCS and PCS with other variables was assessed in FCs, predictors of PCS were subjective sleep quality (r=−0.454, Pb.001), sleep latency
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Quality of sleep Global PSQI Subjective sleep quality Sleep latency Sleep duration Sleep efficiency Sleep disturbance Use of sleep medications Daytime dysfunction Quality of life MCS PCS Physical functioning Role-physical Bodily pain General health Vitality Social functioning Role-emotional Mental health HAD Depression scores Anxiety scores
HD patients
FCs of HD patients
P
7.7±2.8 1.1±0.8 1.4±0.8 0.8±0.7 1.3±1.4 1.7±0.6 0.7±0.9 1.0±0.8
11.9±3.0 2.2±0.8 1.8±0.7 0.7±0.5 2.2±1.3 2.4±0.6 1.3±0.8 1.7±0.8
b.001 b.001 b.001 NS b.001 b.001 b.001 b.001
40.9±10.6 38.9±8.1 48.8±27.0 41.5±34.0 56.9±22.2 44.2±12.3 51.3±21.7 55.6±25.1 37.1±33.8 53.1±21.0
43.1±8.7 44.3±10.1 69.8±27.5 65.3±40.2 62.5±23.7 52.0±21.2 54.7±19.7 64.0±23.5 61.2±41.9 59.9±15.9
b.001 .027 b.001 b.001 .042 b.001 NS .004 b.001 .002
8.1±4.3 7.4±3.9
7.2±4.7 7.8±4.4
Independent-samples t test was used to compare groups.
NS NS
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Fig. 1. Mean scores for components of the PSQI for the 142 pair hemodialysis patients and family caregiver of hemodialysis patients.
globally reduced physical and MH domains. Contrary to the HD patients, the FCs had relative lower MH and general health scores than they did for the other domains (Table 3).
Fig. 3. Mean scores for component of Hospital Anxiety and Depression Scale (HAD) of hemodialysis patients and caregivers.
Quality of sleep, QOL and HAD scores for both groups are shown in Figs. 1, 2 and 3, respectively.
4. Discussion
Fig. 2. Mean scores for components of the SF-36 for the 142 pair hemodialysis patients and family caregiver of hemodialysis patients. MCS, SF-36 Mental Component Summary; PCS, SF- 36 Physical Component Summary; PF, Physical Functioning; RF, Role-physical; BP, Bodily pain; GH, General health; VT, Vitality; SF, Social functioning; RE, Roleemotional; MH, Mental health.
To the best of our knowledge, this is the first study to assess the quality of sleep of FCs of HD patients. We examined the quality of sleep, QOL, and anxiety and depressive symptoms in 142 subjects with ESRD on HD and 142 healthy FCs of HD patients and found a prevalence of “poor sleep” (global PSQIN5) in 73.9% of the patients and 88% of the FCs. The main finding of this study is that the FCs of HD patients have a higher rate of poor sleep quality than do the patients themselves according to the PSQI. Another important finding of this study, involving a large number of patients on chronic HD and their FCs, is the confirmation that depressive symptoms affect 52.8% of patients and 43.3% of caregivers. Patients with ESRD have a remarkably high rate of sleep complaints and a higher prevalence of sleep disorders than do the general population [24]. Our results showed that the prevalence of poor sleep quality in our HD patients was also high, which was within the previously reported range of 41%– 83% [3,25–28]. Our percentage of patients with poor sleep was close to the rates reported by Iliescu et al. (71%) [3] and Pai et al. (74.4%) [26]. The poor sleep quality of these patients may be due to the adjustment of their sleep–wake behavior to the time requirements of the dialysis regimen. This adjustment is likely to be different for patients on home therapies versus incenter HD, as patients receiving in-center HD would have to adjust (arise earlier) their wake-up times to show up for their dialysis treatments.
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In Turkey, caregivers of HD patients are usually family members. Family caregiving occurs when family members provide assistance beyond what is considered everyday assistance. Caregiving is usually a long-term, sometimes permanent, responsibility. FCs are considered “informal” caregivers and are part of a system that consists of family, partners, children and others who may fit the traditional definition of family. Family caregivers also provide direct care by assisting with independent and dependent activities of daily living. The FCs in Turkey usually are middle-aged (usually 45– 55 years old), married women who spend about 18 h per week caring for her relative who lives nearby. Many of these FCs still have dependent children at home. Along with these concerns, caregiving can create financial burdens. FCs are employed either full-time or part-time, and there may be employment changes, such as taking time off, arriving late/ leaving early or decreasing work hours, caused by their responsibilities. FCs may also have nonreimbursable caregiving expenses, thereby diminishing their own household income. FCs may need to readjust their lifestyles as they are deprived of their habits. However, studies concerning quality of sleep are scarce. In the literature, it is reported that up to 90% of caregivers report sleep disturbances in caregivers of heart failure patients [11]. In the present study, FCs of HD patients also had a high prevalence of poor sleep. When compared to the HD patients, our cohort of caregivers had objective evidence of increased global PSQI scores, shorter sleep time, sleep disturbances, use of sleep medications and daytime dysfunction. The SF-36 MCS and PCS have previously been reported to correlate inversely with the global PSQI score for HD patients [3]. Results of our study have shown a significant negative correlation between the global PSQI of our patients and their PCS and MH. In our study, physical QOL was correlated with sleep disturbances, and mental QOL was correlated with subjective sleep quality. This is in accordance with similar studies by Elder et al., Cengić et al. and Gusbeth-Tatomir et al. [25,29,30]. End-stage chronic kidney disease considerably reduces the physical and professional performances of patients, leading to a negative impact on their perception of their own health and affecting their VT levels, which may limit their social interactions and cause problems related to MH [1]. In our study, impairment was shown in the different domains assessed by the SF-36, the lowest values being observed in physical health, which is in accordance with the medical literature [1,31,32]. In the present study, 76.3% and 89.1% of the studied patients had lower QOL scores (scores b50) in the mental and physical domains, respectively. Similarly, Yang et al. [33] showed that 68.4% and 91.1% of the studied patients had lower QOL scores in the mental and physical domains, respectively. Family support helps with managing the severity of illness and coping with stressful situations. The majority of the renal failure patients live with their family because most
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patients experience good support through their family ties in the traditional Turkish culture. Social support has beneficial effects on the domains of QOL. In our study, married patients showed significantly better QOL than single patients, indicating that most patients experience good support from their spouses and children. This finding was consistent with other studies [34,35]. It has been reported in the literature that, similar to HD patients, the QOL of FCs is negatively affected [6,7]. In our study, both PCS and MCS mean scores of FCs were lower than 50. However, FCs' mean scores for all QOL domains were significantly higher than the mean scores of HD patients, except for the VT and BP domains. Contrary to HD patients, FCs had relatively low MH and general health scores than they did for the other domains. In the literature, Fan et al. [36] showed that the QOL, as assessed by SF-36 questionnaires, was impaired for the HD patients and their caregivers [36]. Fan et al. also found that the MH domain scores worsened in the caregivers with the most dependent patients. In the study by Belasco et al. [37], most of the caregivers of HD patients were women (78%) aged 55±15 years, and the caregivers' emotional aspect, VT and MH were the most affected dimensions. Of these caregivers, 32% showed signs of depression. Belasco et al. [37] showed that caregivers of elderly peritoneal dialysis patients showed worse scores in several domains compared with the caregivers of HD patients, including the PF, VT and SF domains. Depression is the most common psychological problem encountered among dialysis patients [12]. Riezebos et al. [21] found that depressive symptoms were highly prevalent in their patients with ESRD. In their study, 42 patients (41.6%) had depressive symptoms, defined as a HADS-D score equal to or more than 7. In our study, the percentage of depressive symptoms in HD patients and their FCs was 52.8% and 43.3%, respectively. The FCs had a lower percentage of depressive symptoms than did the HD patients. Several limitations of this study must be considered. First, this is an observational, cross-sectional study. The causal inferences of reduced quality of sleep, QOL, anxiety and depressive symptom remain unclear. Second, we should acknowledge that standard subjective sleep questionnaires have limited applicability in screening or diagnosing sleep disorders in ESRD patients and their FCs. While the PSQI is a widely accepted subjective tool for measuring sleeping problems, a polysomnographic approach would have been a more objective and reliable test. However, polysomnography would have been very difficult to perform on 142 pairs of patients and FCs. Moreover, in our country, we unfortunately do not have polysomnographic institutes due to the economic constraints that healthcare authorities are facing. Third, this study has been conducted with psychiatric scales. More information could be attained through psychiatric interviews. Finally, we have no control group of age-matched participants who are neither HD patients nor carers.
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5. Conclusion ESRD and dialysis dependency are associated with impaired and highly variable sleep quality, life quality and mood. This study shows that HD patients have markedly impaired sleep quality. However, their FCs have worse global PSQI scores than the HD patients. In addition, the QOL of the patients assessed proved to be globally reduced, mainly concerning the physical health domain. Contrary to the HD patients, the FCs had relatively lower MH and general health scores than they did for the other domains. In conclusion, FCs of dialysis patients experience adverse effects on their quality of sleep and QOL. Periodic psychiatric evaluation of HD patients and FCs by hemodialysis physicians using valid scales may be effective in identifying patients and caregivers who show symptoms of anxiety, depression, and poor quality of sleep and life. Educational, social and psychological support interventions may improve the quality of sleep and life of both the HD patients and their caregivers. References [1] Silveira CB, Pantoja IK, Silva AR, et al. Quality of life of hemodialysis patients in a Brazilian Public Hospital in Belém-Pará. J Bras Nefrol 2010;32:37–42. [2] Paparrigopoulos T, Theleritis C, Tzavara C, Papadaki A. Sleep disturbance in haemodialysis patients is closely related to depression. Gen Hosp Psychiatry 2009;31:175–7. [3] Iliescu EA, Coo H, McMurray MH, et al. Quality of sleep and healthrelated quality of life in haemodialysis patients. Nephrol Dial Transplant 2003;18:126–32. [4] Unruh ML, Sanders MH, Redline S, et al. Subjective and objective sleep quality in patients on conventional thrice-weekly hemodialysis: comparison with matched controls from the sleep heart health study. Am J Kidney Dis 2008;52:305–13. [5] Parker KP, Bliwise DL, Bailey JL, Rye DB. Daytime sleepiness in stable hemodialysis patients. Am J Kidney Dis 2003;41:394–402. [6] Wolcott DL, Nissenson AR, Landsverk J. Quality of life in chronic dialysis patients: factors unrelated to dialysis modality. Gen Hosp Psychiatry 1988;10:267–77. [7] Cruz MC, Andrade C, Urrutia M, Draibe S, Nogueira-Martins LA, SessoRde C. Quality of life in patients with chronic kidney disease. Clinics (Sao Paulo) 2011;66:991–5. [8] Cukor D, Coplan J, Brown C, et al. Depression and anxiety in urban hemodialysis patients. Clin J Am Soc Nephrol 2007;2:484–90. [9] Cukor D, Coplan J, Brown C, et al. Anxiety disorders in adults treated by hemodialysis : a single-center study. Am J Kidney Dis 2008;52:128–36. [10] Canam C, Acorn S. Quality of life for family caregivers of people with chronic health problems. RehabilNurs 1999;24:192–6. [11] Rausch SM, Baker K, Boonmee J. Sleep disturbances in caregivers of patients with end-stage congestive heart failure: part I — the problem. Prog Cardiovasc Nurs 2007;22:38–40. [12] Wilson-Genderson M, Pruchno RA, Cartwright FP. Effects of caregiver burden and satisfaction on affect of older end stage renal disease patients and their spouses. Psychol Aging 2009;24:955–67. [13] Campbell AR. Family caregivers: caring for aging end-stage disease partners. Adv Ren Replace Ther 1998;5:98–108. [14] Chen CK, Tsai YC, Hsu HJ, et al. Depression and suicide risk in hemodialysis patients with chronic renal failure. Psychosomatics 2010;51:528–528.e6.
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