Routinely measuring symptom burden and health-related quality of life in dialysis patients: first results from the Dutch registry of patient-reported outcome measures

Abstract

Background: The use of patient-reported outcome measures (PROMs) is becoming increasingly important in healthcare. However, incorporation of PROMs into routine nephrological care is challenging. This study describes the first experience with PROMs in Dutch routine dialysis care.

Methods: A pilot study was conducted in dialysis patients in 16 centres. Patients were invited to complete PROMs at baseline and 3 and 6 months. PROMs consisted of the 12-item short-form and Dialysis Symptom Index to assess health-related quality of life (HRQoL) and symptom burden. Response rates, HRQoL and symptom burden scores were analysed. Qualitative research methods were used to gain insight into patients' views on using PROMs in clinical practice.

Results: In total, 512 patients (36%) completed 908 PROMs (24%) across three time points. Response rates varied from 6 to 70% among centres. Mean scores for physical and mental HRQoL were 35.6 [standard deviation (SD) 10.2] and 47.7 (SD 10.6), respectively. Patients experienced on average 10.8 (SD 6.1) symptoms with a symptom burden score of 30.7 (SD 22.0). Only 1-3% of the variation in PROM scores can be explained by differences between centres. Patients perceived discussing their HRQoL and symptom scores as insightful and valuable. Individual feedback on results was considered crucial.

Conclusions: The first results show low average response rates with high variability among centres. Dialysis patients experienced a high symptom burden and poor HRQoL. Using PROMs at the individual patient level is suitable and may improve patient-professional communication and shared decision making. Further research is needed to investigate how the collection and the use of PROMs can be successfully integrated into routine care to improve healthcare quality and outcomes.

Keywords: chronic kidney disease; dialysis; health-related quality of life; patient-reported outcome measures; symptom burden.

FIGURE 1

Flow chart for the number of patients included, invited and participating at each time point. ^aPatients that were excluded because of a language barrier at 0 or 3 months were again included at 6 months: PROMs were also available in English, Turkish and Arabic at 6 months. ^bIn total, 1440 patients were invited at atleast one time point. ^cThe DSI was considered complete if ≥28 questions were answered.

FIGURE 2

Response rates per time point in 16 pilot centres. Centres are ranked (low to high) according to the number of patients on dialysis included at baseline. Larger centres (i.e. higher number of patients included at baseline) had a slightly lower response rate compared with smaller centres: the response rate decreases by 2% per 10 additional patients (P < 0.001).

FIGURE 3

Observed and adjusted mean symptom burden score in 16 pilot centres. Circles represent the mean observed (white circles) and adjusted (adjusted for sex, age, SES, primary kidney disease, dialysis modality and time on RRT; black circles) symptom burden score for each centre. Overlapping part of circles is depicted in grey. The overall mean (dotted line) is used as a reference in the comparison with each centre. The 95% confidence interval (CI; curved lines) is provided around the overall mean. The mean score of one centre is outside the 95% CI, indicating a statistically significant higher symptom burden score compared with the overall mean.

FIGURE 4

Observed and adjusted mean physical HRQoL (PCS) in 16 pilot centres. Circles represent the mean observed (white circles) and adjusted (adjusted for sex, age, SES, primary kidney disease, dialysis modality and time on RRT; black circles) score for physical HRQoL per centre. Overlapping part of the circles is depicted in grey. The overall mean PCS (dotted line) is used as a reference in the comparison with each centre. The 95% confidence interval (CI; curved lines) is provided around the overall mean PCS. The adjusted mean score of one centre is outside the 95% CI, indicating a statistically significant lower PCS compared with the overall mean PCS.

FIGURE 5

Observed and adjusted mean mental HRQoL (MCS) in 16 pilot centres. Circles represent the mean observed (white circles) and adjusted (adjusted for sex, age, SES, primary kidney disease, dialysis modality and time on RRT; black circles) score for mental HRQoL per centre. Overlapping part of the circles is depicted in grey. The overall mean MCS (dotted line) is used as a reference in the comparison with each centre. The 95% confidence interval (CI; curved lines) is provided around the overall mean MCS. The mean scores of two centres are outside the 95% CI, one above and one below the funnel, indicating a statistically significant higher and lower MCS compared with the overall mean MCS, respectively.