Patient-reported symptom burden and gaps in the symptom-to-care pathway among adults receiving maintenance hemodialysis: a cross-sectional study from Brazil

People receiving maintenance hemodialysis (HD) have high symptom burden, yet most studies report prevalence alone and do not examine whether bothersome symptoms enter a care-response pathway. Using the Dialysis Symptom Index (DSI), we operationalized a patient-reported symptom-to-care cascade (symptom present → high bother → help-seeking → perceived sufficient attention) in a Brazilian publicly funded dialysis setting. In this cross-sectional study, 181 adults on maintenance HD for > 3 months at three units in northeastern Brazil were recruited consecutively (January–December 2022). The DSI recorded symptom presence and bother in the prior week. For each high-bother symptom (bother ≥ 3), participants were asked whether they had sought professional assistance for that symptom (no explicit recall period) and whether attention was perceived as sufficient (≥ 3). The primary outcome was the perceived care-response gap. Prevalences were estimated with Wilson 95% confidence intervals (CIs); associated factors were explored with regression models. Median symptom count was 8 (interquartile range 4–12); 93.9% (95% CI 89.4–96.6) had ≥ 1 high-bother symptom. Across 1,039 high-bother symptom–patient instances (28 assessable symptoms), 483 (46.5%) prompted help-seeking and 449 (43.2%) received perceived sufficient attention; among help-seeking instances, 449/483 (92.9%) were perceived as sufficiently attended. Thus, the gap was driven mainly by high-bother symptoms not prompting help-seeking rather than by low perceived attention after help was sought. A perceived care-response gap was present in 80.1% of participants (95% CI 73.7–85.3) and was most pronounced in the psychological domain (164/191; 85.9%). Female sex was associated with more symptoms (rate ratio 1.28; 95% CI 1.1–1.5) and with the binary care-response gap (prevalence ratio 1.29; 95% CI 1.1–1.5), although the latter attenuated after adjustment for high-bother symptom count; older age was associated with lower burden. Symptom burden was high, and the main gap occurred before or at help-seeking, especially for psychological symptoms. These findings support future qualitative and implementation research to identify drivers of non-help-seeking and test whether symptom measures linked to documentation, team review, referral, and follow-up can reduce these gaps.