Background: End-stage renal disease (ESRD) patients have poor health-related quality of life (HRQOL) comparing to general population and comparable HRQOL to patients with other major chronic diseases. Poor HRQOL is associated with shorter survival. There is a limited threshold to which dialysis dose and parameters management can improve HRQOL in ESRD patients. Numerous studies have sought to find interventions to improve HRQOL. This article is to review the symptoms associated with poor HRQOL and how frequent the quality of life (QOL) should be evaluated to improve the outcome. Summary: It is required by the Center for Medicare and Medicaid Services to evaluate HRQOL of dialysis patients annually. KDIGO recommends the symptoms to be assessed regularly and the treatment is redirected toward a patient-centered care model. Studies have shown that measuring patient-reported outcomes frequently, from 4 times a day to every 3-6 months, without intervention did not improve the HRQOL significantly. Appropriate intervention of the symptoms may improve the quality of life (QOL). Studies in oncology have also showed a similar result. The commonly used tools to evaluate the HRQOL in dialysis patients take up to 30 min for completion. Therefore, frequent assessment of all the symptoms can provide more burden than benefit to the patients. In addition to the annual HRQOL measurements, more frequent evaluation of targeted symptoms can be helpful. For appropriate intervention of the symptoms, effective communication between providers, as well as a multidisciplinary approach, is essential to improve HRQOL and outcomes in dialysis patients. Key Messages: Measurement of patient-reported outcomes may provide an opportunity to improve outcomes in ESRD. The frequent measurement of symptoms and QOL may be burdensome. Consider targeted measurement of symptoms to complement HRQOL measurement. Improved communication and the use of a multidisciplinary team provide mechanisms to improve HRQOL in ESRD.

Health-related quality of life (HRQOL) is multi-dimensional and focuses on the effects of the health status of patients on their quality of life (QOL). Poor HRQOL is associated with increased risk of mortality and hospitalization in patients with end-stage renal disease (ESRD) [1]. Dialysis patients have compromised HRQOL [1] when compared to the general population and have decrements comparable to patients with other chronic diseases including cancer and heart failure [2].

HRQOL is required by the Center for Medicare and Medicaid Services to be incorporated annually in the care of ESRD patients. Despite improvements in process of care outcomes such as hemoglobin levels, Kt/V and phosphorous control, HRQOL among incident dialysis patients has not substantially improved over the past decade [3][4]. Numerous studies have sought to identify the interventions that will improve the HRQOL in dialysis population [5,6]. A key KDIGO Controversies Conference has recommended the need for symptoms assessment and management in dialysis patients [7].

Incorporating HRQOL assessment in the care of ESRD is indeed an essential intervention. The HRQOL assessment in ESRD patients can inform the medical personnel of the effectiveness of treatment interventions such as more or less frequent dialysis or anemia correction. It also plays an important role in improving patient's care, assessing patient's needs, setting treatment goals and monitoring disease progression. However, the lack of improvement in overall HRQOL among dialysis patients over the past decade makes us face some serious questions. Is it because yearly evaluation of symptoms may not be enough to improve the HRQOL? In that case, how frequently should we assess the symptoms? Can evaluation of symptoms on every dialysis session be beneficial toward improving the treatment outcome? This review aims to highlight the most common symptoms attributing to the poor HRQOL and the role of frequent assessment of those symptoms in improving the HRQOL in dialysis population.

The literature that evaluates the outcome of HRQOL in dialysis population by frequent assessment is sparse. The frequency of the assessment of patient-reported outcomes in those studies varies from several times a day to every 3-6 months. Bakewell et al. [8] evaluated 88 peritoneal dialysis patients in the United Kingdom every 6 months for 2 years. In the study, the QOL declined over time. Self-assessing QOL every 3 months over a period of 2 years demonstrated that it declined in the initial months but it remained stable over time in dialysis population [2]. In the study by Gabbay et al. [3], the HRQOL scores of 11,079 hemodialysis patients was evaluated by using SF-36 for 2-4 times per year over a decade. There was no substantial improvement in HRQOL despite improvements in outcomes such as hemoglobin levels, Kt/V and phosphorous control. In the Netherlands Cooperative Study on the Adequacy of Dialysis study, QOL was assessed by SF-36 form at 3, 6, 12 and 18 months after the start of dialysis treatment. The study showed that parameters of adequacy of dialysis were not associated with improved QOL over time [9].

The studies using frequent measurements have demonstrated marked variability in day-to-day scores and across the day among patients with ESRD. Roumelioti et al. [10] evaluated the sleep quality, mood and alertness of patients with kidney diseases daily for 14 consecutive days by using visual analogue scales of the Pittsburgh Sleep Diary and then compared them with those of healthy control subjects. In the study, ESRD patients had worse sleep quality, mood and alertness than control subjects and the symptoms varied day-to-day. In the study by Abdel-Kader et al. [11], the symptoms (subjective vitality, mood and alertness) of 55 hemodialysis patients were assessed 4 times a day for 7 consecutive days by using Daytime Insomnia Symptom Scale. This study found these symptoms were related to both the day of dialysis and the time of day. Fatigue, sleepiness and exhaustion were worsened later in the day and on the dialysis days. These observational studies measuring patient-reported outcomes without targeted interventions have not been associated with improvements in QOL. This variability in scores among patients with ESRD suggests that frequent assessment of symptoms may be problematic given the underlying variability in scores.

There are many studies examining the effects on patient well-being and outcome by evaluating HRQOL [12,13,14,15]. The results of using HRQOL to inform patient care have been mixed. Velikova et al. [13] did a randomized controlled trial involving 28 oncologists and 286 cancer patients. The patients were assigned to (a) interventional group in which patients were to complete the QOL questionnaire at regular periods and feedback was provided to physicians, (b) attention-control group where patients were to complete the questionnaires but no feedback was resulted to providers and (c) control group in which no HRQOL was measured. In the interventional group and the attention-control group, HRQOL was assessed regularly at baseline, third visit (2-3 months), 4 and 6 months. Patients in the intervention and attention-control groups had better QOL compared to those in the control group. The physician-patient communication as well as emotional functioning was improved by routine assessment of HRQOL. Rosenbloom et al. [15] performed a similar study using 213 patients with metastatic breast, lung or colorectal cancer who were randomly assigned to 1 of 3 groups. This study examined a usual care (control group), the HRQOL assessment group (assessment control condition) and the HRQOL assessment followed by structured interview group (structured interview and discussion condition). In this study, there were no statistically significant differences found in HRQOL across the 3 groups. The authors suggested that the routine HRQOL assessments without appropriate intervention are not enough to improve HRQOL. In another randomized controlled trial with 115 inoperable lung cancer patients, the weekly assessment with patient-held QOL diary for 16 weeks without appropriate feedback to healthcare professionals and without the provision of appropriate support had no significant improvement in QOL over time comparing to the standard care group when assessed at baseline and at 2 and 4 months after baseline [14].

ESRD patients have a high burden of physical and emotional symptoms that were associated with impaired HRQOL [16]. Weisbord et al. [16] assessed physical and emotional symptoms in 162 dialysis patients with Dialysis Symptom Index. Among them, more than 50% of patients reported to have dry skin, fatigue, itchiness or bone/joint pain. These physical and emotional symptoms were associated with impaired QOL and depression.

Pruritus is one of the most common symptoms in ESRD patients. According to the DOPPS study, 42% of prevalent dialysis patients experienced moderate to severe pruritus that was associated with poor sleep quality, physician-diagnosed depression and poor HRQOL [17]. In the study by Mathur et al. [18], the worsening of itchiness by 20% or greater in patients with moderate to severe pruritus was associated with significant reduction in HRQOL measures.

Depressive symptoms and pain are commonly reported by patients undergoing dialysis [19,20,21]. The international, prospective, observational study with more than 10,000 patients demonstrated that nearly 20% of the cohort had depression [20] while in study by Weisbord et al. [21], pain is present in about 50% of the dialysis patients. Belayev et al. [19] also showed that pain and depressive symptoms are independently associated with HRQOL after assessing the pain and depressive symptoms monthly and HRQOL quarterly for 24 months. Both DOPPS [20] and the study by Weisbord et al. [21] demonstrated that depression is associated with increased hospitalization and mortality. HEMO Study had similar results with decrease in survival time from all-cause mortality in patients with low mental health scores [22].

Sleep is also one of the factors related to QOL. The data from CHOICE study showed that approximately 75% of dialysis patients had impaired sleep quality, and 14% of them had a decline in sleep quality in the first year of treatment. Decline in sleep quality was associated with decreased HRQOL and shorter survival [23]. Moreover, many of these symptoms were interconnected and affected by each other [16,23,24,25].

The family and health of the patients themselves were also important domains for most of the ESRD patients. It was shown in the study by Abdel-Kader et al. [26] where 151 ESRD and advanced chronic kidney disease patients were evaluated by an instrument that assessed individualized QOL on the basic of patient-identified domains. More than two-thirds of ESRD patients nominated family and health as their important domains.

This underlines the importance of all of these symptoms in the improvement of HRQOL in ESRD patients. Despite the importance of these symptoms on the HRQOL of ESRD patients, treatable symptoms such as pain, pruritus, sexual dysfunction, sleep problems and psychological distress were under-recognized and its severity was underestimated by the renal providers [27]. This strong correlation between symptom burden and HRQOL suggests that interventions to alleviate these symptoms may provide a potential opportunity to improve HRQOL.

For our ESRD patients, assessing HRQOL alone may not be enough to improve HRQOL. This position was supported by a recent study of nearly 11,000 patients undergoing hemodialysis in the US showing that there has been no substantial change in mental and physical well-being with the implantation of routine measures of HRQOL [3].

The data for how frequently we should evaluate the HRQOL to improve the outcome are lacking. The most commonly used tools to evaluate the HRQOL, KDQOL and SF-36 require up to 30 min for completion. Therefore, it can be a challenge for the patients to answer these questions very frequently such as daily or every dialysis session or weekly. This can lead to significant missing data and incomplete information [28]. The burden to the patients will be more than the benefit in this scenario.

More recently, the KDIGO Controversies Conference had recommended assessing symptoms regularly and directing treatment toward a patient-centered care model. This model will emphasize the treatment of symptoms that matter to the patients and align the care to the patients' values, preferences and goals [7]. KDIGO also recommended stepwise approach to manage the symptoms with non-pharmacological interventions as first-line and then pharmacological treatments as second-line therapy (table 1) [7].

Table 1

Symptom assessment and management recommendations by KDIGO Controversies Conference [7]

Symptom assessment and management recommendations by KDIGO Controversies Conference [7]
Symptom assessment and management recommendations by KDIGO Controversies Conference [7]

Assessment and treatment of symptoms is an important opportunity to improve HRQOL in ESRD patients. Weisbord et al. [6] did a randomized trial (SMILE study) in 220 dialysis patients to compare 2 management strategies for pain, erectile dysfunction and depression. In the study, the patients were in observation phase for 2-12 months and then randomized to 12 months participation in 2 arms: (1) feedback intervention in which the symptoms were assessed monthly, renal providers were informed of patients' symptoms, and treatment was dependent upon the providers and (2) management intervention in which symptoms were assessed monthly and trained nurses were used to evaluate patients and facilitate the implementation of treatment recommendations. In this study, both approaches had improvements in symptoms comparing to usual care as shown in figure 1. Evaluation and treatment of depression with sertraline in peritoneal dialysis population improved the HRQOL and symptoms related to depression. In the study, 124 peritoneal dialysis patients were involved and depression as screened by Beck Depression Inventory and HRQOL was evaluated by SF-36. The depressed patients were treated with sertraline for 12 weeks. The side effect of the medication on treatment arm was evaluated biweekly, and the HRQOL and depression were evaluated again after 12 weeks of treatment with sertraline [29]. World Health Organization 3-step analgesic ladder is useful for treating the pain of dialysis population especially for the individuals younger than 65 years of age. In the study by Barakzoy et al. [30], the severity of pain of 45 hemodialysis patients were evaluated by SF McGill Pain Questionnaire and then treated with World Health Organization analgesic ladder. They were evaluated every week for 4 weeks. At the end of the study, the mean pain score was significantly declined. The formal assessment of pain treatment on the QOL of the patients was not conducted but about half of the patients made comments that treatment of pain provided more restful sleep, better functional status as well as better ability to tolerate dialysis.

Fig. 1

Longitudinal change in symptom score by study phase and intervention arm for patients with pain, erectile dysfunction and depression. The figure adopted from the study by Weisbord et al. [6] with the permission of authors. Pain (change in symptom score): p < 0.01 for feedback vs. observation; erectile dysfunction (change in symptom score): p < 0.01 for feedback vs. observation, p < 0.05 for nurse management vs. observation; depression (change in symptom score): p < 0.01 for feedback vs. observation, p < 0.05 for nurse management vs. observation.

Fig. 1

Longitudinal change in symptom score by study phase and intervention arm for patients with pain, erectile dysfunction and depression. The figure adopted from the study by Weisbord et al. [6] with the permission of authors. Pain (change in symptom score): p < 0.01 for feedback vs. observation; erectile dysfunction (change in symptom score): p < 0.01 for feedback vs. observation, p < 0.05 for nurse management vs. observation; depression (change in symptom score): p < 0.01 for feedback vs. observation, p < 0.05 for nurse management vs. observation.

Close modal

In addition to assessing and treating symptoms, there are approaches to improving HRQOL measurement, which may positively influence patient outcomes. With the advancement in technology, assessing symptoms and HRQOL electronically has been an increasing interest. Patient-reported outcomes are captured electronically and then integrated with electronic medical records. It is shown to be an effective way in integrating into existing care pathways and getting timely manner intervention. Some studies showed that it improves HRQOL and is beneficial to the patients [11,28]. We believe that incorporating technology to HRQOL assessment will increase the patient-doctor communication, lead to more accurate HRQOL and symptoms assessments and decrease the patients' burden of responding to the conventional HRQOL instruments, which are prone to recall bias. This will also provide a practical ground for more frequent HRQOL assessment studies. It is also important to give an adequate social support to ESRD patients. Social functioning is a main component of HRQOL measures. ESRD patients who have more social support were found to have better HRQOL and fewer hospitalizations than those with poor social support [31].

We recommend the evaluation of HRQOL on a regular basis. The data for optimal frequency of assessment are lacking, and more studies are necessary for further evaluation. The administrative and patient burden can outweigh the benefits for patients in frequently measuring patient-reported outcomes. We should focus on the patient-centered therapy and treat the symptoms accordingly to improve the overall HRQOL and patients' outcome. During the treatment for symptoms, targeted measurement of symptoms should be considered.

As studies have shown that most renal providers believed non-renal providers are responsible for treatment of these symptoms [32] and pharmacologic therapy was more commonly prescribed by the primary care physicians [33], communication between the healthcare providers is important. A multidisciplinary team approach to treat the symptoms will be beneficial to improve the QOL and overall care of the dialysis patients.

The authors have no financial conflicts of interest or grant support to declare. This Mini-Review has not been previously published or submitted to another journal.

The authors have nothing to disclose.

Mapes DL, Lopes AA, Satayathum S, McCullough KP, Goodkin DA, Locatelli F, Fukuhara S, Young EW, Kurokawa K, Saito A, Bommer J, Wolfe RA, Held PJ, Port FK: Health-related quality of life as a predictor of mortality and hospitalization: the dialysis outcomes and practice patterns study (DOPPS). Kidney Int 2003;64:339-349.
Mittal SK, Ahern L, Flaster E, Maesaka JK, Fishbane S: Self-assessed physical and mental function of haemodialysis patients. Nephrol Dial Transplant 2001;16:1387-1394.
Gabbay E, Meyer KB, Griffith JL, Richardson MM, Miskulin DC: Temporal trends in health-related quality of life among hemodialysis patients in the United States. Clin J Am Soc Nephrol 2010;5:261-267.
Nissenson AR: Improving outcomes for ESRD patients: shifting the quality paradigm. Clin J Am Soc Nephrol 2014;9:430-434.
Unruh M, Benz R, Greene T, Yan G, Beddhu S, DeVita M, Dwyer JT, Kimmel PL, Kusek JW, Martin A, Rehm-McGillicuddy J, Teehan BP, Meyer KB; HEMO Study Group: Effects of hemodialysis dose and membrane flux on health-related quality of life in the hemo study. Kidney Int 2004;66:355-366.
Weisbord SD, Mor MK, Green JA, Sevick MA, Shields AM, Zhao X, Rollman BL, Palevsky PM, Arnold RM, Fine MJ: Comparison of symptom management strategies for pain, erectile dysfunction, and depression in patients receiving chronic hemodialysis: a cluster randomized effectiveness trial. Clin J Am Soc Nephrol 2013;8:90-99.
Davison SN, Levin A, Moss AH, Jha V, Brown EA, Brennan F, Murtagh FE, Naicker S, Germain MJ, O'Donoghue DJ, Morton RL, Obrador GT: Executive summary of the KDIGO Controversies Conference on supportive care in chronic kidney disease: Developing a roadmap to improving quality care. Kidney Int 2015;88:447-459.
Bakewell AB, Higgins RM, Edmunds ME: Quality of life in peritoneal dialysis patients: decline over time and association with clinical outcomes. Kidney Int 2002;61:239-248.
Merkus MP, Jager KJ, Dekker FW, de Haan RJ, Boeschoten EW, Krediet RT: Quality of life over time in dialysis: the Netherlands cooperative study on the adequacy of dialysis. NECOSAD Study Group. Kidney Int 1999;56:720-728.
Roumelioti ME, Argyropoulos C, Buysse DJ, Nayar H, Weisbord SD, Unruh ML: Sleep quality, mood, alertness and their variability in CKD and ESRD. Nephron Clin Pract 2010;114:c277-c287.
Abdel-Kader K, Jhamb M, Mandich LA, Yabes J, Keene RM, Beach S, Buysse DJ, Unruh ML: Ecological momentary assessment of fatigue, sleepiness, and exhaustion in ESKD. BMC Nephrol 2014;15:29.
Velikova G, Keding A, Harley C, Cocks K, Booth L, Smith AB, Wright P, Selby PJ, Brown JM: Patients report improvements in continuity of care when quality of life assessments are used routinely in oncology practice: secondary outcomes of a randomised controlled trial. Eur J Cancer 2010;46:2381-2388.
Velikova G, Booth L, Smith AB, Brown PM, Lynch P, Brown JM, Selby PJ: Measuring quality of life in routine oncology practice improves communication and patient well-being: a randomized controlled trial. J Clin Oncol 2004;22:714-724.
Mills ME, Murray LJ, Johnston BT, Cardwell C, Donnelly M: Does a patient-held quality-of-life diary benefit patients with inoperable lung cancer? J Clin Oncol 2009;27:70-77.
Rosenbloom SK, Victorson DE, Hahn EA, Peterman AH, Cella D: Assessment is not enough: a randomized controlled trial of the effects of HRQL assessment on quality of life and satisfaction in oncology clinical practice. Psychooncology 2007;16:1069-1079.
Weisbord SD, Fried LF, Arnold RM, Fine MJ, Levenson DJ, Peterson RA, Switzer GE: Prevalence, severity, and importance of physical and emotional symptoms in chronic hemodialysis patients. J Am Soc Nephrol 2005;16:2487-2494.
Pisoni RL, Wikström B, Elder SJ, Akizawa T, Asano Y, Keen ML, Saran R, Mendelssohn DC, Young EW, Port FK: Pruritus in haemodialysis patients: international results from the dialysis outcomes and practice patterns study (DOPPS). Nephrol Dial Transplant 2006;21:3495-3505.
Mathur VS, Lindberg J, Germain M, Block G, Tumlin J, Smith M, Grewal M, McGuire D; ITCH National Registry Investigators: A longitudinal study of uremic pruritus in hemodialysis patients. Clin J Am Soc Nephrol 2010;5:1410-1419.
Belayev LY, Mor MK, Sevick MA, Shields AM, Rollman BL, Palevsky PM, Arnold RM, Fine MJ, Weisbord SD: Longitudinal associations of depressive symptoms and pain with quality of life in patients receiving chronic hemodialysis. Hemodial Int 2015;19:216-224.
Lopes AA, Bragg J, Young E, Goodkin D, Mapes D, Combe C, Piera L, Held P, Gillespie B, Port FK; Dialysis Outcomes and Practice Patterns Study (DOPPS): Depression as a predictor of mortality and hospitalization among hemodialysis patients in the United States and Europe. Kidney Int 2002;62:199-207.
Weisbord SD, Mor MK, Sevick MA, Shields AM, Rollman BL, Palevsky PM, Arnold RM, Green JA, Fine MJ: Associations of depressive symptoms and pain with dialysis adherence, health resource utilization, and mortality in patients receiving chronic hemodialysis. Clin J Am Soc Nephrol 2014;9:1594-1602.
Kang EW, Pike F, Ramer S, Abdel-Kader K, Myaskovsky L, Dew MA, Unruh M: The association of mental health over time with cardiac outcomes in HEMO study patients. Clin J Am Soc Nephrol 2012;7:957-964.
Unruh ML, Buysse DJ, Dew MA, Evans IV, Wu AW, Fink NE, Powe NR, Meyer KB: Sleep quality and its correlates in the first year of dialysis. Clin J Am Soc Nephrol 2006;1:802-810.
Cohen SD, Patel SS, Khetpal P, Peterson RA, Kimmel PL: Pain, sleep disturbance, and quality of life in patients with chronic kidney disease. Clin J Am Soc Nephrol 2007;2:919-925.
Jhamb M, Liang K, Yabes J, Steel JL, Dew MA, Shah N, Unruh M: Prevalence and correlates of fatigue in chronic kidney disease and end-stage renal disease: are sleep disorders a key to understanding fatigue? Am J Nephrol 2013;38:489-495.
Abdel-Kader K, Myaskovsky L, Karpov I, Shah J, Hess R, Dew MA, Unruh M: Individual quality of life in chronic kidney disease: influence of age and dialysis modality. Clin J Am Soc Nephrol 2009;4:711-718.
Weisbord SD, Fried LF, Mor MK, Resnick AL, Unruh ML, Palevsky PM, Levenson DJ, Cooksey SH, Fine MJ, Kimmel PL, Arnold RM: Renal provider recognition of symptoms in patients on maintenance hemodialysis. Clin J Am Soc Nephrol 2007;2:960-967.
Gilbert A, Sebag-Montefiore D, Davidson S, Velikova G: Use of patient-reported outcomes to measure symptoms and health related quality of life in the clinic. Gynecol Oncol 2015;136:429-439.
Atalay H, Solak Y, Biyik M, Biyik Z, Yeksan M, Uguz F, Guney I, Tonbul HZ, Turk S: Sertraline treatment is associated with an improvement in depression and health-related quality of life in chronic peritoneal dialysis patients. Int Urol Nephrol 2010;42:527-536.
Barakzoy AS, Moss AH: Efficacy of the world health organization analgesic ladder to treat pain in end-stage renal disease. J Am Soc Nephrol 2006;17:3198-3203.
Jaar BG, Chang A, Plantinga L: Can we improve quality of life of patients on dialysis? Clin J Am Soc Nephrol 2013;8:1-4.
Green JA, Mor MK, Shields AM, Sevik MA, Palevsky PM, Fine MJ, Arnold RM, Weisbord SD: Renal provider perceptions and practice patterns regarding the management of pain, sexual dysfunction, and depression in hemodialysis patients. J Palliat Med 2012;15:163-167.
Claxton RN, Blackhall L, Weisbord SD, Holley JL: Undertreatment of symptoms in patients on maintenance hemodialysis. J Pain Symptom Manage 2010;39:211-218.
Copyright / Drug Dosage / Disclaimer
Copyright: All rights reserved. No part of this publication may be translated into other languages, reproduced or utilized in any form or by any means, electronic or mechanical, including photocopying, recording, microcopying, or by any information storage and retrieval system, without permission in writing from the publisher.
Drug Dosage: The authors and the publisher have exerted every effort to ensure that drug selection and dosage set forth in this text are in accord with current recommendations and practice at the time of publication. However, in view of ongoing research, changes in government regulations, and the constant flow of information relating to drug therapy and drug reactions, the reader is urged to check the package insert for each drug for any changes in indications and dosage and for added warnings and precautions. This is particularly important when the recommended agent is a new and/or infrequently employed drug.
Disclaimer: The statements, opinions and data contained in this publication are solely those of the individual authors and contributors and not of the publishers and the editor(s). The appearance of advertisements or/and product references in the publication is not a warranty, endorsement, or approval of the products or services advertised or of their effectiveness, quality or safety. The publisher and the editor(s) disclaim responsibility for any injury to persons or property resulting from any ideas, methods, instructions or products referred to in the content or advertisements.