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

Abstract

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.

Keywords: PROMs; haemodialysis; major adverse renal events; nurse–patient relationship; symptom burden.

Graphical Abstract

Figure 1:

Flow chart.

Figure 2:

Prevalence of perceived symptoms of 256 patients receiving HD in the Rhône-Alpes region of France from 1 March 2022 to 30 June 2023. A score of zero was given for absent symptoms. Responses for each key were rated on a scale of 1–5 according to intensity and the total 30-item DSI questionnaire score was the sum of the responses for each patient.

Figure 3:

Severity of perceived symptoms of 256 patients receiving HD in the Rhône-Alpes region of France from 1 March 2022 to 30 June 2023. A score of zero was attributed to the absence of symptoms. Responses for each key were rated from a score 1 to 5 according to intensity and the total 30-item Dialysis Symptom Index questionnaire (DSI) score was the sum of the responses for each patient

Figure 4:

Comparisons of patient–nurse concordance in the literature and the present study according to the frequency of symptoms and severity.

Figure 5:

Comparisons of patient–nephrologist and nurse–nephrologist concordance in the literature and the present study according to the frequency of symptoms and severity.