Dialysis Symptom Index: Patient-reported outcome measures study of dialysis patients in low resource settings in India

Abstract

BACKGROUND

End-stage renal disease is the final stage of chronic kidney disease, with hemodialysis as the primary treatment in India. Despite its prevalence, limited studies have focused on patient-reported outcomes, such as symptom burden and health-related quality of life.

AIM

To evaluate the symptom burden among adult hemodialysis patients and identify factors influencing their outcomes.

METHODS

A multi-center, cross-sectional study was conducted among 157 adult hemodialysis patients in Chennai from March 2024 to June 2024. The Dialysis Symptom Index tool was used to assess 30 physical and emotional symptoms. Correlations between symptom severity and clinical parameters, such as hemoglobin levels and urea reduction ratio (URR), were analyzed.

RESULTS

Moderate symptoms were reported by 48% of participants, with worry, insomnia, and feeling unwell identified as the most severe. Psychological symptoms significantly correlated with lower hemoglobin levels, while shortness of breath was linked to suboptimal URR values. Approximately 38% of patients had URR < 65%, which was associated with increased symptom burden.

CONCLUSION

Hemodialysis patients experience a substantial psychological and sleep-related symptom burden, emphasizing the need for dialysis adequacy and better hemoglobin management. Enhanced strategies addressing these factors could significantly improve patient outcomes.

Key Words: Chronic kidney disease; Hemodialysis; Dialysis Symptom Index; Patient-reported outcome measures; Symptom burden; Quality of life

Core Tip: This is the first study in India to use the Dialysis Symptom Index to examine the symptoms of hemodialysis patients in low-resource settings. Psychological and sleep-related symptoms, especially worry, insomnia, and fatigue, were the most common among 157 patients. Notably, lower hemoglobin and inadequate dialysis (urea reduction ratio < 65%) significantly correlated with greater symptom severity. The findings underscore the need for integrating patient-reported outcome measures into routine care to improve quality of life. Tailored interventions targeting anemia management and dialysis adequacy could meaningfully reduce symptom burden in this study population.

INTRODUCTION

End-stage renal disease (ESRD) is the final stage of chronic kidney disease (CKD), marked by a severe reduction in kidney function. At this stage, glomerular filtration rate drops to 10 mL/minute/1.73 m² or lower, indicating that the kidneys are no longer able to effectively filter waste products from the blood[1]. The prevalence of ESRD varies significantly across different populations and regions, reflecting underlying health issues, such as diabetes and hypertension (HTN). In the United States, over 500000 individuals are affected by ESRD, while in India, the prevalence is over 151 cases per million people. Diabetes and HTN are the leading causes of ESRD, responsible for 47% and 29% of cases, respectively[2-4]. Globally, the prevalence of CKD, which can progress to ESRD, is estimated at 8-16%. Despite these alarming statistics, researchers suggest that the overall incidence of ESRD may be stabilizing, indicating potential improvements in early detection and management of CKD[5,6]. However, the burden of ESRD remains significant, necessitating ongoing public health efforts. In India, several treatment modalities are available to replace kidney function for individuals with kidney disease, particularly those with ESRD, including hemodialysis, peritoneal dialysis, kidney transplantation, conservative management etc. Among these, hemodialysis is the most common treatment modality in India used to replace normal kidney function[7]. Patient-reported outcomes (PROs) refer to the actual patient-reported data about their health, quality of life (QoL), or symptoms. PROs are essential for effectively managing CKD, as they improve communication between patients and healthcare providers, allowing for more tailored treatment plans. While PRO measures (PROMs) refer to the instrument or tool (e.g., a questionnaire) used to collect patient-reported data. PROMs evaluate various health aspects, including symptom severity and health-related QoL (HRQoL)[8]. The consistent use of PROs has been associated with better clinical outcomes, increased patient satisfaction, and more effective symptom management[9]. The Weisbord Dialysis Symptom Index (DSI) was first developed by Weisbord et al[10] through a systematic process aimed at addressing the lack of validated instruments for assessing symptom burden in hemodialysis patients. This development took place in the context of a study that involved reviewing existing QoL instruments, conducting focus groups, and assessing content validity with experts. Ultimately, a 30-item index was created to evaluate both physical and emotional symptoms experienced by patients undergoing hemodialysis[10]. The DSI has been validated in several languages, indicating its widespread use in clinical settings across different regions. Countries using the DSI include South Korea, Portugal, Turkey and Iran, demonstrating strong psychometric properties, such as high reliability and validity[11]. The DSI evaluates a range of symptoms, including fatigue, nausea, muscle cramps, and sleep disturbances[11]. It correlates with dialysis adequacy, suggesting that improved dialysis can reduce symptom burden[12]. The DSI allows healthcare providers to identify prevalent symptoms and customize treatment plans accordingly and can help track symptom changes over time, guiding clinical decisions[11,12]. The prevalence, severity, and impact of symptoms experienced by dialysis patients have not been extensively studied in India, leading to a significant gap in understanding and addressing the needs of this vulnerable population. As a result, many patients remain under-treated, often suffering from a range of debilitating symptoms that adversely affect their overall QoL. Recognizing that both physical and emotional symptom burdens play a crucial role in the well-being of dialysis patients, we believe it is essential to gain a comprehensive understanding of these challenges. Therefore, our study aims to systematically explore the prevalence and severity of these symptoms among dialysis patients using a DSI survey in southern India. By doing so, we hope to identify the specific challenges faced by this population and understand how these challenges affect their HRQoL in low resource settings. Ultimately, we seek to gather data that can inform healthcare providers about the necessity of tailored interventions and improved management strategies.

MATERIALS AND METHODS

Study design and duration

The study was a multi-center, cross-sectional investigation involving 157 adults representing rural, semiurban, and urban areas who underwent outpatient hemodialysis. Three hospitals, Sree Renga Hospital (SRH), Hindu Mission Hospital (HMH), and Hariharan Diabetes and Heart Care Hospitals Pvt. Ltd (HH), all in the Chennai metropolitan area of Tamil Nadu, India, were the sites for this research. The study took place from March 2024 to June 2024. Ethical committee approval was obtained for this study prior to obtaining informed consent from the participants.

Inclusion and exclusion criteria

The inclusion criteria for the study consisted of participants who were over 18 years of age and had been receiving hemodialysis for a minimum of 4 consecutive weeks. The exclusion criteria for the study included patients who were receiving peritoneal dialysis and those with a life expectancy of less than 6 months.

DSI assessment

The DSI is a patient-reported outcome measure designed to evaluate the prevalence, severity, and impact of physical and emotional symptoms experienced by dialysis patients. This tool plays a critical role in understanding the HRQoL of individuals undergoing hemodialysis. The study aimed to use the DSI to assess individual symptom prevalence and severity, identify symptom clusters, and analyze correlations between symptoms and clinical characteristics.

Data collection

A pilot study involving 58 patients was conducted to assess the feasibility of the research approach. Based on the findings, a larger study was subsequently undertaken to further investigate the research questions and gather more comprehensive data. The study employed the validated DSI survey, developed by Weisbord et al[10], as the primary assessment tool. Because all participants primarily communicated in Tamil, the DSI was translated into Tamil. A validated version of the DSI document was prepared to avoid any discrepancies in data collection. After obtaining informed consent, researchers administered the questionnaire, recording responses on a five-point Likert scale from 0 (no) to 4 (yes: Very much), with higher scores indicating greater symptom severity.

Physical and emotional symptoms

A total of 30 symptoms were studied, each targeting a specific physical or emotional issue. These symptoms were grouped under eight organ systems, as tabulated below (Table 1).

Table 1 Organ system distribution of symptoms studied.

Number	Organ system	Symptoms studied
1	Cardiopulmonary	Swelling in legs
		Cough
		Shortness of breath
2	Neurology	Headache
		Numbness or tingling in feet
		Light-headedness
		Difficulty concentration
3	Gastrointestinal	Nausea
		Constipation
		Vomiting
		Diarrhea
		Decreased appetite
4	Endocrine	Decreased interest in sex
		Difficulty becoming sexually aroused
5	Pain	Bone/joint pain
		Chest pain
		Muscle cramp
		Muscle soreness
6	Dermatological	Dry mouth
		Dry skin
		Itching
7	Sleep	Trouble falling asleep
		Trouble staying asleep
		Feeling tired/lack of energy
		Restless legs
8	Psychological	Feeling nervous
		Feeling irritable
		Worrying
		Feeling bad
		Feeling anxious

Statistical analysis

This study analyzed data on the prevalence and severity of symptoms in hemodialysis patients using the DSI. The study categorized patients into low, medium, and high groups based on their DSI scores. The study used descriptive statistics to summarize key variables like age, height, weight, body mass index (BMI), years on dialysis, hemoglobin (HB) levels, pre-dialysis and post-dialysis urea, and urea reduction ratio (URR). χ² tests were used to compare categorical variables, while analysis of variance and Kruskal-Wallis tests assessed differences in continuous variables. Pearson correlation coefficients were used to explore the relationships between symptom severity and key laboratory parameters. Symptom clustering identified co-occurring symptoms across organ systems. Analyses were performed using IBM® Statistical Package for the Social Sciences Statistics software, version 24.0, performed by one of the authors and reviewed by the corresponding author.

RESULTS

Baseline characteristics of patients and dialysis treatment

This study analyzed data from 157 patients undergoing hemodialysis, revealing a diverse clinical and demographic profile. The mean age of participants was 55.20 ± 13.38 years, with a gender distribution of 29.3% female and 70.7% male. The descriptive statistics and categorical variables are depicted in Tables 2 and 3. The majority of patients (91.7%) were married, while 8.3% were unmarried. Among the study population, 71.3% had HTN, and 29.9% had diabetes mellitus (DM). The mean duration of dialysis was 3.27 ± 2.88 years, and the mean BMI was 24.33 ± 4.55, indicating an average weight profile for this patient group. Most patients (90.4%) used arteriovenous fistulas (AVF) as their primary access type, while the remaining 9.6% relied on catheters (CATH). Biochemical parameters provided insight into the clinical challenges faced by these patients. The mean HB level was 9.54 ± 1.87 g/dL, which is below the normal range, indicating a high prevalence of anemia. The mean URR, a measure of dialysis adequacy, was 57.29% ± 17.44%. Pre-dialysis urea levels averaged 90.70 ± 24.05 mg/dL, and post-dialysis urea levels averaged 39.46 ± 16.02 mg/dL, further reflecting variability in the effectiveness of dialysis treatments. Table 4 lists the baseline patient and dialysis treatment characteristics. The study analyzed 157 participants, categorized based on their DSI scores into three groups: (1) Low (< 15); (2) Medium (15-31); and (3) High (≥ 32). The DSI scores ranged from 0 to 120; out of 157 patients, 49 participants were in the low score group, 75 in the medium group, and 33 in the high score group. The average age of the participants was 55.20 years. Gender distribution revealed that the majority of participants were male (111 participants, 70.7%) compared to females (46 participants, 29.3%). Among males, 40 participants were in the low DSI group, 52 in the medium group, and 20 in the high group. For females, the corresponding numbers were 9, 23, and 13, respectively. In terms of marital status, most participants were married (144 participants, 91.7%), while a smaller proportion were unmarried (13 participants, 8.3%). Among married participants, 44 were in the low DSI group, 71 in the medium group, and 29 in the high group. Conversely, unmarried participants were evenly distributed across the groups, with 5 in the low group, 4 in the medium group, and 4 in the high group. These findings provide insights into the demographic characteristics of the study population and the distribution of symptom burden across DSI score categories. The predominance of married males and the clustering of participants in the medium symptom burden group suggest potential demographic and clinical factors influencing DSI scores.

Table 2 Descriptive statistics.

Variable	n	mean ± SD
Age (years)	157	55.20 ± 13.38
Height (cm)	157	156.79 ± 9.61
Weight (kg)	154	59.79 ± 12.9
Body mass index	154	24.33 ± 4.55
Years on dialysis	157	3.27 ± 2.88
Last hemoglobin	157	9.54 ± 1.87
Pre-dialysis urea	157	90.70 ± 24.05
Post-dialysis urea	151	39.46 ± 16.02
Post weight (kg)	127	52.75 ± 20.12
Urea reduction ratio	157	57.29 ± 17.44

Table 3 Categorical variables, n (%).

Variable	Category
Sex	Female	46 (29.3)
	Male	111 (70.7)
Marital status	Unmarried	13 (8.3)
	Married	144 (91.7)
Hypertension	No	44 (28.0)
	Yes	112 (71.3)
	Missing	1 (0.6)
Diabetes mellitus	No	110 (70.1)
	Yes	47 (29.9)
Access type	Arteriovenous fistulas	142 (90.4)
	Catheter	15 (9.6)
Iron injection	No	34 (21.7)
	Yes	123 (78.3)
Recent hospitalization	No	146 (93.0)
	Yes	11 (7.0)

Table 4 Baseline characteristics of patients/dialysis treatment characteristics.

Baseline characteristics of study group (n = 157)	Overall value	DSI score [low (< 15)]	DSI score [medium (15-31)]	DSI score [high (32-120)]
n	157	49	75	33
DSI score	0-120	31%	48%	21%
Demographic characteristics
Age (mean ± SD) (years)	55.20
Female	46	9	23	13
Male	111	40	52	20
Married	144	44	71	4
Unmarried	13	5	4	29

DSI: Dialysis Symptom Index.

Clinical characteristics

The clinical characteristics outlined two primary categories: Co-morbidities and vascular access types among hemodialysis patients across the three study sites. Systemic HTN (SHT) was the most prevalent co-morbidity across all sites, affecting 28 patients at HH, 47 patients at HMH, and 50 patients at SRH. DM was also common but less prevalent than SHT. It was observed in 18 patients at HH, 33 patients at HMH, and 18 patients at SRH. These findings highlight the high burden of HTN and diabetes among hemodialysis patients. In terms of vascular access, AVF was used by the majority of patients at all sites. Specifically, 33 patients at HH, 59 patients at HMH, and 50 patients at SRH utilized AVF. In contrast, CATH use was limited, with only 1 patient at HH, 6 patients at HMH, and 8 patients at SRH relying on this method. Overall, the data emphasize the dominance of SHT as a significant co-morbidity and the widespread adoption of AVF as the vascular access of choice among hemodialysis patients across these study sites.

Distribution of DSI scores

The DSI scores are displayed in Table 5. The DSI scores of the study participants were categorized into three groups based on symptom burden: (1) Low (< 15); (2) Medium (15-31); and (3) High (32-120). The distribution of participants across these categories reflects the variation in symptom burden experienced by the hemodialysis population. Approximately 31% of patients fell into the low DSI score group, indicating a relatively mild symptom burden. The largest proportion, 48%, belonged to the medium DSI score group, representing a moderate symptom burden. Finally, 21% of participants were in the high DSI score group, signifying a severe symptom burden. This distribution demonstrates that nearly half of the study population experienced a moderate level of symptoms, while a smaller proportion reported either mild or severe symptom burden. These findings underscore the importance of addressing the varying levels of symptom burden to improve the QoL among hemodialysis patients.

Table 5 Dialysis Symptom Index scores.

DSI score: Low (< 15)	DSI score: Medium (15-31)	DSI score: High (32-120)
31%	48%	21%

DSI: Dialysis Symptom Index.

Severity and distribution of symptoms across organ systems in the study group

This analysis highlights the prevalence and severity of symptoms experienced by hemodialysis patients across various organ systems. Symptoms were categorized by their severity: Moderate to severe, mild and no symptoms. The study assessed 30 symptoms across 157 patients, categorized into eight organ systems. The prevalence of individual symptoms in the study cohort was assessed across three severity levels: Moderate-severe (3, 4), mild (1, 2), and no symptoms (0), as shown in Table 6. Among the most commonly reported symptoms, 'worrying' was experienced by 33.7% of patients at moderate to severe levels, followed by 43.3% at mild levels, and 22.9% reporting no symptoms. Similarly, 'trouble falling asleep' was reported by 28.6% of patients as moderate to severe, 29.9% as mild, and 41.4% with no symptoms. 'Feeling bad' was reported as moderate to severe in 28% of the cohort, with 43.9% experiencing mild symptoms and 28% reporting no symptoms. 'Muscle cramps' affected 23.5% of patients at moderate to severe levels, 37.5% at mild levels, and 38.8% had no symptoms. 'Trouble staying asleep' had a notable prevalence, with 26.1% reporting moderate to severe symptoms, 21% had mild symptoms, and 52.8% with no symptoms. Other symptoms with moderate to severe prevalence included dry mouth (16.5%), feeling tired/lack of energy (13.4%), and bone/joint pain (12.1%). Itching and feeling nervous were experienced by 10.1% and 9.5% of patients, respectively, at moderate to severe levels. On the lower end of symptom severity, 82.8% of patients reported no symptoms for 'decreased interest in sex', while constipation and chest pain were also uncommon, with 79.6% and 81.5% of patients experiencing no symptoms, respectively. Nausea and diarrhea had very low rates of moderate-severe symptoms, with only 4.4% of patients reporting these at higher severity levels.

Table 6 Prevalence of individual symptoms in the overall study group, n (%).

Symptoms studied	Moderate-severe (3, 4)	Mild (1, 2)	No symptoms (0)
Worrying	53 (33.7)	68 (43.3)	36 (22.9)
Trouble falling asleep	45 (28.6)	47 (29.9)	65 (41.4)
Feeling bad	44 (28)	69 (43.9)	44 (28)
Muscle cramps	37 (23.5)	59 (37.5)	61 (38.8)
Trouble staying asleep	41 (26.1)	33 (21)	83 (52.8)
Dry mouth	26 (16.5)	50 (31.8)	81 (51.5)
Feeling tired/lack of energy	21 (13.4)	69 (43.9)	67 (42.6)
Bone/joint pain	19 (12.1)	62 (39.4)	76 (48.4)
Dry skin	17 (10.8)	74 (47.1)	66 (42)
Itching	16 (10.1)	42 (26.7)	99 (63)
Feeling nervous	15 (9.5)	46 (29.2)	96 (61.1)
Swelling in legs	14 (8.9)	47 (29.9)	96 (61.1)
Cough	13 (8.2)	53 (33.7)	91 (57.9)
Muscle soreness	12 (7.6)	58 (36.9)	87 (55.4)
Headache	11 (7)	46 (29.2)	100 (63.6)
Numbness or tingling in feet	11 (7)	28 (17.8)	118 (75.1)
Difficulty concentration	11 (7)	57 (36.3)	89 (56.6)
Restless legs	11 (7)	58 (36.9)	88 (56)
Feeling irritable	11 (7)	35 (22.2)	111 (70.7)
Decreased interest in sex	11 (7)	16 (10.2)	130 (82.8)
Shortness of breath	10 (6)	52 (33.1)	95 (60.5)
Constipation	10 (6)	22 (14)	125 (79.6)
Decreased appetite	9 (5)	42 (26.7)	106 (67.5)
Chest pain	4 (2.5)	25 (15.9)	128 (81.5)
Vomiting	7 (4.4)	26 (16.5)	124 (78.9)
Nausea	7 (4.4)	15 (9.5)	135 (85.9)
Light-headedness	7 (4.4)	32 (20.3)	118 (75.1)
Difficulty becoming sexually aroused	5 (3.1)	13 (8.2)	139 (88.5)
Diarrhea	3 (1.9)	12 (7.6)	142 (90.4)

Correlation between HB levels and psychological symptoms

Table 7 showed a negative correlation between hemoglobin levels and symptoms. The study reveals a significant negative correlation between HB levels and psychological symptoms, including worry, nervousness, and feeling sad. Lower HB levels were associated with increased emotional distress across all three measured symptoms. Specifically, the correlation between HB and worry was moderately strong (r = -0.515, P = 0.002), indicating that individuals with reduced HB levels reported greater levels of worry. The correlation between HB and nervousness was even stronger (r = -0.622, P = 0.031), while the relationship between HB and feeling sad was moderate (r = -0.478, P = 0.017). Inter-symptom correlations were also noteworthy. Worry and nervousness showed a significant association (r = -0.408, P = 0.023), highlighting their tendency to co-occur. Similarly, worry and feeling sad were weakly correlated (r = -0.333, P = 0.032). Nervousness and feeling sad demonstrated a stronger interrelationship (r = -0.421, P = 0.001), suggesting a substantial overlap in these emotional states. Statistical analysis confirmed that all observed correlations were significant, with most achieving a high level of significance (P < 0.05 or P < 0.01). These findings underscore the robustness of the relationships between HB levels and psychological symptoms. In conclusion, this study highlights the potential link between reduced HB levels and heightened psychological distress, particularly in the forms of worry, nervousness, and sadness. The significant inter-symptom correlations further emphasize the interconnected nature of these emotional states. These results point to the need for further research to explore the physiological and psychological mechanisms driving these associations.

Table 7 Negative correlation between hemoglobin levels and symptoms- negative correlation.

Category	Statistics	HB	Worry	Nervous	Feel sad
HB	Pearson correlation	1	-0.515	-0.622	-0.478
	P-value (2 tailed)		0.002	0.031	0.017
	n	46	46	46	46
Worry	Pearson correlation	-0.515	1	-0.408	-0.333
	P-value (2 tailed)	0.002		0.023	0.032
	n	46	46	46	46
Nervous	Pearson correlation	-0.622	-0.408	1	-0.421
	P-value (2 tailed)	0.031	0.023		0.001
	n	46	46	46	46
Feel sad	Pearson correlation	-0.478	-0.333	-0.421	1
	P-value (2 tailed)	0.017	0.032	0.001
	n	46	46	46	46

HB: Hemoglobin.

Correlation between URR values and physical symptoms

The study demonstrates a negative correlation between normal URR values and physical symptoms, including shortness of breath, headache, and feeling tired. Table 8 displays the negative correlation between symptoms and URR values. Higher URR values were associated with lower severity of these symptoms, though the strength and significance of these correlations varied. Specifically, URR showed a significant negative correlation with shortness of breath (r = -0.661, P = 0.002), indicating that higher URR levels are strongly linked to reduced shortness of breath. The correlations with headache (r = -0.701, P = 0.400) and feeling tired (r = -0.661, P = 0.501) were weaker and not statistically significant. Inter-symptom correlations reveal varying degrees of association. Shortness of breath and headache demonstrated a weak correlation (r = -0.324, P = 0.200), suggesting limited overlap. Shortness of breath and feeling tired exhibited a moderate correlation (r = -0.514, P = 0.400), while headache and feeling tired showed a modest association (r = -0.460, P = 0.500). However, none of these inter-symptom relationships reached statistical significance. Overall, the study highlights that URR values are significantly associated with reduced shortness of breath but show weaker or non-significant relationships with other symptoms. The findings underscore the need for further research with larger sample sizes to better understand the role of URR in mitigating physical symptoms and to explore the underlying physiological mechanisms driving these associations.

Table 8 Negative correlation between urea reduction ratio values and symptoms.

Category	Statistics	URR	Shortness of breath	Headache	Feel tired
URR	Pearson correlation	1	-0.661	-0.701	-0.661
	P-value (2 tailed)		0.002	0.400	0.501
	n	46	46	46	46
Shortness of breath	Pearson correlation	-0.661	1	-0.324	-0.514
	P-value (2 tailed)	0.002		0.200	0.400
	n	46	46	46	46
Headache	Pearson correlation	-0.701	-0.324	1	-0.460
	P-value (2 tailed)	0.400	0.200		0.500
	n	46	46	46	46
Feel tired	Pearson correlation	-0.661	-0.514	-0.460	1
	P-value (2 tailed)	0.501	0.400	0.500
	n	46	46	46	46

URR: Urea reduction ratio.

DISCUSSION

The study provides valuable insights into the Indian clinical and demographic characteristics of 157 patients undergoing hemodialysis. The percent of total deaths per million due to CKD has risen from 0.97-1.26% in 1990 to 2.19-2.56% in 2019[13]. The prevalence, severity, and impact of symptoms in dialysis patients have not been well studied in India, and consequently go under-treated. In light of these concerning trends, it is imperative to enhance surveillance and implement effective public health strategies to combat the growing burden of non-communicable diseases[14,15]. Our study is the first report to introduce the DSI score to evaluate the symptom burden of dialysis patients in low-resource settings in India. In this well-characterized, multi-center study of patients with kidney failure undergoing hemodialysis, we aimed to elucidate the prevalence, severity, and impact of both physical and psychological symptoms[16,17]. Our analysis began with a comprehensive examination of demographic and clinical characteristics, stratifying patients based on their DSI overall symptom severity scores. Notably, we found that nearly 50% of patients reported high DSI scores, regardless of gender. The symptom prevalence in our study population provides insight into the varied experiences of participants. The most commonly reported symptoms in the moderate-severe category were worrying, trouble falling asleep, and worrying. This suggests that psychological distress and sleep disturbances are significant concerns in this group. High levels of worrying could indicate increased anxiety or stress, which might be further exacerbated by poor sleep quality. These symptoms are interconnected, as worry often disrupts sleep, leading to a cycle of distress that can affect overall well-being. A similar study conducted in the United States with 122 hemodialysis patients found that symptom severity scores were higher among non-Hispanic White and Hispanic patients, while lower scores were observed in Black and Asian/Pacific Islander patients. The most commonly reported individual symptoms across the cohort included feeling tired or lacking energy (71.3%), dry skin (61.5%), trouble falling asleep (44.3%), muscle cramps (42.6%), and itching (42.6%), with similar patterns noted across different racial and ethnic groups[18]. In Korean ESRD patients, Cho et al[19] reported that the most commonly reported psychological symptoms were worry (59.6%), nervousness (59.6%), and anxiety (56.1%). In contrast, physical symptoms like muscle cramps (23.5%) were moderately prevalent but still notable. Muscle cramps, often associated with dehydration, electrolyte imbalances, or physical strain, could point to underlying metabolic or lifestyle factors affecting the participants. A study in Thailand of 148 patients reported experiencing 30 distinct symptoms. The five most frequently reported symptoms were itching, dry skin, muscle soreness, dry mouth, and muscle cramps, with trouble staying asleep reported by 52.75% of patients[20]. Some symptoms were predominantly mild in nature. For instance, feeling tired or lacking energy was reported as mild by 43.9% of participants, suggesting that while fatigue is prevalent, it may not always reach debilitating levels. In Netherlands, a study included a cohort of 120 patients undergoing chronic hemodialysis, and their physical symptoms were evaluated using a self-administered questionnaire. The results revealed that the most prevalent symptoms reported among patients receiving hemodialysis were fatigue (82%) and itching (73%)[21]. Similarly, the Persian version of the DSI was evaluated using a convenience sample of 95 patients with ESRD. The most frequently reported symptoms included fatigue, irritability, and nervousness. Divergent validity of the scale was supported by the observed pattern of associations between the DSI and the 36-Item Short Form Health Survey, with correlation coefficients ranging from -0.18 to -0.48 (P < 0.05)[22]. Dry skin and bone/joint pain were frequent but rarely severe, indicating that while these symptoms are common, they may not severely impact daily activities for most individuals. In a Korean study of 230 hemodialysis patients, the most prevalent physical symptoms, as measured by the Korean version of the DSI, included fatigue or weakness (76.1%), dry skin (63.0%), and itchiness (62.2%)[19]. A number of symptoms were experienced by only a small portion of the population at moderate-severe levels, including cough (8.2%), muscle soreness (7.6%), and headaches (7%). These symptoms, though present, appear less disruptive overall. The low prevalence of numbness or tingling in the feet (7%) and difficulty concentrating (7%) in the moderate-severe category may reflect the presence of underlying conditions, but not primary concerns for the majority of patients. The study also found that several symptoms were largely absent in the population. For instance, decreased interest in sex was non-existent for 82.8% of participants, and diarrhea was non-existent for 90.4% of patients, suggesting that these issues are relatively uncommon. Similarly, chest pain (81.5% absent) and constipation (79.6% absent) were rarely reported, further indicating that gastrointestinal or cardiac-related symptoms were not a major issue for most participants. Overall, psychological and sleep-related symptoms, particularly worrying and trouble falling asleep, were among the most prevalent and potentially impactful. In contrast, many physical symptoms were more commonly mild or absent, suggesting variability in how participants experienced and/or were affected by different symptom types. This diversity in symptom presentation highlights the importance of individualized approaches when addressing the health needs of similar populations.

Lower levels of dialysis adequacy are associated with an increased number of symptoms experienced by patients[12]. Dialysis adequacy should ideally be above 65% for optimal health. In our study, 60 out of 157 dialysis patients (approximately 38%) had a URR below 65%. Among these 60 patients, those with a DSI score above 15 indicated a higher symptom burden. However, the correlations between URR and headache, as well as URR and feeling tired, were not statistically significant, suggesting that these relationships may not be reliable. Furthermore, symptoms such as shortness of breath, headache, and fatigue do not show strong or statistically significant correlations with each another. This suggests that inadequate dialysis contributes to a greater prevalence of symptoms. Further investigation into the most common unpleasant symptoms revealed that patients frequently reported feelings of worry, sadness, and anxiety, alongside difficulties with sleep, including both falling asleep and staying asleep[18]. These findings underscore the multifaceted nature of symptomatology in this patient population, highlighting the importance of addressing both emotional and sleep-related challenges in clinical practice. While we attempted to explore symptom clusters across various categories, such as gastrointestinal, dermatologic, psychiatric, sleep, pain, neurologic, and endocrine systems, the limited sample size prevented robust analysis of these clusters. Future studies with larger cohorts will be crucial to fully understand these interrelated symptoms and their implications for patient care. Finally, our analysis of correlations between key laboratory values and symptom severity yielded significant insights. We found a negative correlation between HB levels and overall symptom severity, suggesting that lower HB may be associated with increased symptom burden[23]. Similarly, lower levels of dialysis adequacy were correlated with more severe patient symptoms. These findings highlight the importance of optimizing both HB levels and dialysis adequacy to potentially alleviate symptom burden experienced by this vulnerable population. In summary, our study reveals critical insights into the prevalence and impact of symptoms among patients undergoing hemodialysis. It emphasizes the need for comprehensive management strategies that address both the physical and psychological dimensions of care to improve patient outcomes. Future research should continue to explore these relationships and develop targeted interventions to enhance the QoL for patients with kidney failure.

Advantages of the study

The high prevalence of unpleasant symptoms among CKD patients undergoing hemodialysis highlights the critical need for targeted interventions to address these challenges. Additionally, the scarcity of studies focused on Indian CKD patients presents an important opportunity for research that can provide culturally relevant insights. The DSI serves as a valid and reliable tool for measuring symptom burden, ensuring that data collected is accurate and actionable. By assessing this symptom burden, healthcare professionals can develop tailored interventions aimed at alleviating symptoms and enhancing overall QoL for patients.

Limitations of the study

The limitations of the study include: (1) A relatively small sample size, which may restrict the generalizability of our findings to the broader population of CKD patients in India; (2) As a cross-sectional design, the study captures data at a single time point, making it difficult to establish causal relationships between symptoms and other variables; (3) The reliance on self-reported measures may introduce biases, such as response bias or inaccuracies in patients’ perceptions of their symptoms; (4) The lack of longitudinal follow-up means that changes in symptom burden over time cannot be assessed, limiting the understanding of symptom evolution; and (5) The study may not fully account for psychosocial factors, such as social support, which can significantly impact symptom perception and overall QoL.

CONCLUSION

In conclusion, our study highlights the significant prevalence of unpleasant symptoms and symptom clusters among CKD patients undergoing hemodialysis, as evidenced by previous research utilizing the DSI. Among the most commonly reported symptoms, worrying was experienced by 33.7% of patients at moderate to severe levels. The impact of symptoms correlates with clinical parameters, highlighting the need for tailored treatment strategies and a diverse patient population. The DSI is a validated and reliable tool that effectively captures both physical and emotional symptoms experienced by these patients. However, the lack of studies focusing on Indian CKD patients underscores the necessity for targeted research in this area. By characterizing symptom burden in a diverse Indian population, our multi-center study aims to fill this knowledge gap and provide valuable insights. However, further studies are essential to create person-centered treatment plans that address the unique challenges faced by CKD patients. Ultimately, such efforts will contribute to reducing symptom burden and improving QoL for this vulnerable population.

ACKNOWLEDGEMENTS

The authors acknowledge Prof. Eugene Nelson, Emeritus Professor of The Dartmouth Institute, United States, for his guidance in completing this study. They also thank the management and team of Sree Renga Hospital, Hindu Mission Hospital, Hariharan Diabetes and Heart care Hospitals Pvt Ltd, and Prof. Sathish and team, St. Joseph Institute of Technology, Chennai, for data collection and analysis.