The prevalence of mild-to-moderate distress in patients with end-stage renal disease: results from a patient survey using the emotion thermometers in four hospital Trusts in the West Midlands, UK

Objectives To assess the prevalence of mild-to-moderate distress in patients with end-stage renal disease (ESRD) and determine the association between distress and patient characteristics. Design Cross-sectional survey using emotion thermometer and distress thermometer problem list. Setting Renal units in four hospital Trusts in the West Midlands, UK. Participants Adult patients with stage 5 chronic kidney disease who were: (1) On prerenal replacement therapy. (2) On dialysis for less than 2 years. (3) On dialysis for 2 years or more (4) With a functioning transplant. Outcomes The prevalence of mild-to-moderate distress, and the incidence of distress thermometer problems and patient support needs. Results In total, 1040/3730 surveys were returned (27.9%). A third of survey respondents met the criteria for mild-to-moderate distress (n=346; 33.3%). Prevalence was highest in patients on dialysis for 2 years or more (n=109/300; 36.3%) and lowest in transplant patients (n=118/404; 29.2%). Prevalence was significantly higher in younger versus older patients (χ 2 =14.33; p=0.0008), in women versus men (χ 2 =6.63; p=0.01) and in black and minority ethnic patients versus patients of white ethnicity (χ 2 =10.36; p=0.013). Over 40% of patients (n=141) reported needing support. More than 95% of patients reported physical problems and 91.9% reported at least one emotional problem. Conclusions Mild-to-moderate distress is common in patients with ESRD, and there may be substantial unmet support needs. Regular screening could help identify patients whose distress may otherwise remain undetected. Further research into differences in distress prevalence over time and at specific transitional points across the renal disease pathway is needed, as is work to determine how best to support patients requiring help.