Concordance of symptoms perceived by patients receiving haemodialysis and those reported by nurses and nephrologists: a cross-sectional, multicentre, observational study using the REIN registry.

Background: Patients receiving haemodialysis (HD) experience symptoms that impact quality of life. This study assessed the concordance of symptoms and symptom severity of HD patients and their perception by nurses and nephrologists.

Methods: A cross-sectional, observational study using the 30-item Dialysis Symptom Index (DSI) questionnaire was conducted in six dialysis centres in France from 1 March 2022 to 30 June 2023. Patients were interviewed during dialysis sessions. Nurses and nephrologists were asked to complete the DSI questionnaire thereafter, to report patient symptoms they considered present. Responses were compared using sensitivity and the Cohen's κ estimate for an interrater agreement involving presence (yes/no) and intensity (5-point Likert scale).

Results: A total of 256 patients, 123 nurses and 27 nephrologists participated. Patients reported four symptoms as most severe (score >3): restless legs or difficulty keeping still, feeling tired or lack of energy, bone or joint pain and trouble falling asleep. Comparisons showed a sensitivity ≥50% for 1/30 symptoms by nurses and 3/30 by nephrologists. Concordance for the presence of symptoms between nurses-patients and nephrologists-patients was low (κ >0.21-<0.40). Patient-nurse agreement was very low for 14 symptoms (46.6%), low for 15 (50.0%) and moderate for 1 (3.4%). Patient-nephrologist agreement was very low for 21 symptoms (70.0%) and low for 9 (30.0%). Nurse-nephrologist disagreement occurred for three symptoms (10.0%), very low agreement for 25 symptoms (83.3%) and low for 2 symptoms (6.7%).

Conclusions: Nurses and nephrologists underestimate the presence and severity of symptoms perceived by patients. Future systematic assessment of symptoms by patient-reported outcome measures should be considered.