Dialysis symptom index burden and symptom clusters in a prospective cohort of dialysis patients

BACKGROUND: Dialysis patients experience a high symptom burden, which may adversely impact their quality of life. Whereas other specialties emphasize routine symptom assessment, symptom burden is not well-characterized in dialysis patients. We sought to examine the prevalence and severity of unpleasant symptoms in a prospective hemodialysis cohort. METHODS: Among 122 hemodialysis patients from the prospective Malnutrition, Diet, and Racial Disparities in Chronic Kidney Disease (CKD) study, CKD-associated symptoms were ascertained by the Dialysis Symptom Index, a validated survey assessing symptom burden/severity (with higher scores indicating greater symptom severity), over 6/2020–10/2020. We examined the presence of (1) individual symptoms and symptom severity scores, and (2) symptom clusters (defined as ≥ 2 related concurrent symptoms), as well as correlations with clinical characteristics. RESULTS: Symptom severity scores were higher among non-Hispanic White and Hispanic patients, whereas scores were lower in Black and Asian/Pacific Islander patients. In the overall cohort, the most common individual symptoms included feeling tired/lack of energy (71.3%), dry skin (61.5%), trouble falling asleep (44.3%), muscle cramps (42.6%), and itching (42.6%), with similar patterns observed across racial/ethnic groups. The most prevalent symptom clusters included feeling tired/lack of energy + trouble falling asleep (37.7%); trouble falling asleep + trouble staying asleep (34.4%); and feeling tired/lack of energy + trouble staying asleep (32.0%). Lower hemoglobin, iron stores, and dialysis adequacy correlated with higher individual and overall symptom severity scores. CONCLUSION: We observed a high prevalence of unpleasant symptoms and symptom clusters in a diverse hemodialysis cohort. Further studies are needed to identify targeted therapies that ameliorate symptom burden in CKD. GRAPHICAL ABSTRACT: [Image: see text] SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1007/s40620-022-01313-0.