The prevalence, severity, and clinical significance of physical and emotional symptoms in patients who are on maintenance hemodialysis remain incompletely characterized. This study sought to assess symptoms and their relationship to quality of life and depression. The recently developed Dialysis Symptom Index was used to assess the presence and the severity of 30 symptoms. The Illness Effects Questionnaire and Beck Depression Inventory were used to evaluate quality of life and depression, respectively. Correlations among symptom burden, symptom severity, quality of life, and depression were assessed using Spearman correlation coefficient. A total of 162 patients from three dialysis units were enrolled. Mean age was 62 y, 48% were black, 62% were men, and 48% had diabetes. The median number of symptoms was 9.0 (interquartile range 6 to 13). Dry skin, fatigue, itching, and bone/joint pain each were reported by >50% of patients. Seven additional symptoms were reported by >33% of patients. Sixteen individual symptoms were described as being more than "somewhat bothersome." Overall symptom burden and severity each were correlated directly with impaired quality of life and depression. In multivariable analyses adjusting for demographic and clinical variables including depression, associations between symptoms and quality of life remained robust. Physical and emotional symptoms are prevalent, can be severe, and are correlated directly with impaired quality of life and depression in maintenance hemodialysis patients. Incorporating a standard assessment of symptoms into the care provided to maintenance hemodialysis patients may provide a means to improve quality of life in this patient population.

Little is known about the prevalence, severity, or impact of symptoms in hemodialysis patients because of the lack of a validated symptom assessment instrument. We systematically developed an index to assess physical and emotional symptom burden in this patient population. We employed four steps in the generation of this index: a review of dialysis quality-of-life instruments, three focus groups, experts' content validity assessment, and test-retest reliability measurement. Seventy-five symptoms were identified. Of these, 46 appeared in > or = 4 of the instruments/focus groups and were considered for inclusion. Twelve were grouped into other symptom constructs and experts judged four of the remaining items not to be pertinent, leaving 30 items in the new index. Overall kappa statistic was 0.48+/-0.22. These steps allowed the systematic development of a 30-item symptom assessment index for hemodialysis patients. Additional reliability and validity testing is needed prior to its widespread use.

Background and Objectives: Although several studies have found that the burden of symptoms in patients who are on maintenance hemodialysis is substantial, little is known about renal providers' awareness of these symptoms. The aim of this study was to assess renal provider recognition of symptoms and their severity in hemodialysis patients.Design, Setting, Participants, & Measurements: The Dialysis Symptom Index, a 30-item measure of symptoms and their severity, was administered to patients during a routine hemodialysis session. Immediately after surveying patients, the renal provider who evaluated the patient completed the Dialysis Symptom Index to report the symptoms that he or she believed were present in that patient. Sensitivity, specificity, and positive and negative predictive values of provider reports of symptoms were calculated using patient reports as the reference standard. Patient-provider agreement on the presence and severity of symptoms was assessed using the statistic.Results: Surveys were completed by 75 patients and 18 providers. For 27 of 30 symptoms, the sensitivity of provider responses was <50%, and provider responses for 25 symptoms were characterized by positive predictive values of <75%. scores for 25 symptoms including those pertaining to pain, sexual dysfunction, sleep disturbance, and psychologic distress were <0.20, indicating poor provider recognition of these symptoms. Providers underestimated the severity of 19 of 30 symptoms.Conclusions: Renal providers are largely unaware of the presence and severity of symptoms in patients who are on maintenance hemodialysis. Implementation of a standardized symptom assessment process may improve provider recognition of symptoms and promote use of symptom-alleviating treatments.