Symptoms among patients receiving in‐center hemodialysis: A qualitative study

Abstract

Introduction Assessment of dialysis-related symptoms is not currently a requirement for hemodialysis (HD) providers in the United States. The purpose of this study was to describe patients' perspectives on symptoms associated with end-stage chronic kidney disease treated with thrice-weekly, in-center HD. Methods We performed a qualitative study using interpretive description. Interview questions were based on a KDIGO (Kidney Disease Improving Global Outcomes) controversies conference and a literature review. Semistructured interviews were analyzed for characterizations of symptoms. Findings Fifty participants (48% female; 42% Hispanic; 30% American Indian; 14% Black; 12% non-Hispanic White) were recruited from six outpatient dialysis centers (four urban, two rural) in the southwestern United States. Median HD duration was four years. Of 13 symptoms assessed, nearly all participants reported difficulties with muscle cramping, fatigue, or both. Negotiating fluid removal with dialysis personnel helped to manage cramping. Some participants tried to adjust dialysis days and shift to mitigate fatigue. Most participants reported having experienced depression early in the course of dialysis; for some, it was a persistent or recurrent problem. Relatively few participants reported using antidepressants or counseling to cope with depression. Itching was highly distressing for those who experienced it frequently. Topical treatments, antihistamines, dietary modifications, and phosphate binders were identified as potentially helpful by some participants. Discussion The major symptoms attributed to HD treatment by participants were cramping, fatigue, depression, and itching. Greater attention by health care providers to the most common and bothersome symptoms could positively impact daily life for HD patients.

Development and content validity of a hemodialysis symptom patient-reported outcome measure

“…Consistent with prior reports, participants desired more interaction with their providers around symptoms. [5, 6] Many participants indicated that SMaRRT-HD™ responses would be useful for their care teams. For instance, in clinical practice, this PROM may facilitate conversations about symptoms between patients and dialysis care technicians, nurses, and medical providers.…”

“…[2, 4] Recent studies have found that patients receiving hemodialysis desire greater interaction with their health care providers about symptoms. [5, 6] Patients, along with other dialysis stakeholders, have identified symptom relief as a top priority and called for increased symptom focus in both research and clinical practice. [7, 8]…”

Blood pressure and volume management in dialysis: conclusions from a Kidney Disease: Improving Global Outcomes (KDIGO) Controversies Conference

“…[1][2][3][4][5][6] Qualitative data suggest that suboptimal BP and volume management negatively affect quality of life. [7][8][9] Efforts to develop consensus best practices in managing BP and volume in dialysis have been hampered by an absence of widely available, accurate, and objective measures of extracellular volume status, as well as a lack of high-quality evidence. As such, related practice patterns vary considerably, both within local communities and throughout the world.…”

Transcultural adaptation of the Thirst Distress Scale (TDS) into Brazilian Portuguese and an analysis of the psychometric properties of the scale for patients on hemodialysis

“…13 The quality of life of patients on HD is significantly affected as they are in distress for feeling constantly thirsty and not being allowed to drink fluids. 9,10 Although thirst has a subjective facet, scales have been used to diagnose and assess the thirst of patients on HD in terms of intensity (visual analogue scale -VAS), 14 frequency (Dialysis Thirst Inventory -DTI), 15 and distress (Thirst Distress Scale -TDS). 16,17 The TDS is the only scale adapted and validated in other countries, including Turkey, 18 Japan, 19 Sweden, 19 the Netherlands, 19 and Italy.…”