Low, varied response rates found to patient-reported outcome measures among dialysis centers
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Although Dutch patients who completed patient-reported outcome measures described high symptom burden and poor health-related quality of life, the overall response rate was low with considerable variation among dialysis centers, according to study results.
“Patients with advanced chronic kidney disease (CKD) experience numerous physical and emotional disease-related symptoms and a poor health-related quality of life (HRQoL),” Esmee M. van der Willik, of the department of clinical epidemiology at Leiden University Medical Centre in the Netherlands, and colleagues wrote. “In daily health care, these patient-reported outcomes (PROs) are frequently underrecognized and underestimated and consequently may remain unattended The under-identification may be partly explained by patients not sharing their symptoms and needs easily and by difficulties for clinicians to identify the full spectrum and severity of patients’ symptoms and needs.”
The researchers suggested using patient-reported outcome measures (PROMs) may facilitate communication between patients and providers about such symptoms, but the most effective way to go about incorporating PROMs into routine nephrological care remains a challenge.
To evaluate the introduction of PROMs into the health care system, the researchers conducted a pilot study of patients on dialysis at 16 Dutch centers and considered the response rate, characteristics of responders vs. non-responders, HRQoL and symptom burden and patient experience with the tool. Special focus was placed on variation between centers.
Researchers found 36% of the total 1,440 patients invited to complete PROMs responded at least once, with the response rate higher at baseline (28%) when compared with 3 and 6 months (21% for both). Responders were more likely to be men and older and to have a higher socioeconomic status. They were also more likely to have recently started renal replacement therapy.
Patients reported an average of 10.8 out of 30 symptoms, and the overall mean symptom burden score was 30.7 (scale ranging from 0 to 150). The most common symptom was fatigue (76%), while the most burdensome symptom was “difficulty becoming sexually aroused.” The mean HRQoL was 35.6 for the physical part and was 47.7 for the mental component (scale from 0 to 100, with higher scores indicating better QoL).
Regarding variation among centers, researchers documented response rates ranging from 6% to 70% and number of symptoms ranging from 8 to 14.8, noting 1% to 3% of these variations could be explained by differences between centers. They added that “response rates were highest in centres where professionals indicated that they put a lot of effort into informing and inviting patients.”
Patients appeared to respond favorably to PROMs, with 79% indicating they wanted to share and discuss their results on HRQoL and symptom burden with their clinician at 3 months. Furthermore, after discussing results with a nephrologist, nurse and/or social worker, they rated the way in which results were discussed with a mean score of 3.8 (score of 5 being excellent). Individual feedback was seen as essential.
“Results from the focus group suggest that PROMs can provide insights into a patient’s health and needs, improve patient-professional communication and increase shared-decision making,” the researchers concluded.
They suggested further research must be done to successfully utilize PROMs in routine care. – by Melissa J. Webb
Disclosures: The authors report no relevant financial disclosures.
Perspective
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Amanda Grandinetti, MPH
PROMs have been well studied and implemented successfully into other complex diseases, but their implementation has not been prioritized in nephrology. PROMs have been associated with reductions in health care costs, hospitalizations, mortality and improvements in QoL.[1] PROs can be utilized in clinical practice to identify treatments that are specific to individual patients. Identifying PROMs that accurately assess QoL and patient goals within kidney failure patients is important because the lives of kidney failure patients are significantly impacted by initiation of dialysis. Dialysis is a one-size-fits-all treatment.
The present study examines several facets of PROM implementation into clinical practice, which include response rate and variation of PROMs among dialysis centers, effects of HRQoL and symptom burden, and patient experiences and views of PROMs. Sixteen dialysis centers participated in the study. Patients completed two online questionnaires at three points in time to assess HRQoL and symptom burden. The response rate of the surveys was low; however, male sex and high socioeconomic status were associated with higher rates of completion. Response rates were also higher in centers that put a lot of effort into recruitment. Patients valued PROMs and indicated PROMs as a useful to engage with their provider. Differences in centers were not observed. Patients reported high symptom burden and low HRQoL. These findings highlight the importance of developing a methodology for use of PROMs in the dialysis setting.
This study identifies why PROMs in the dialysis setting are so important and the complexities of implementing PROMs into clinical practice. Dialysis is associated with high symptom burden and low HRQoL which indicates a strong need to improve patient lives. Patients and providers have identified PROMs as valuable in care delivery. Individualizing patient care allows nephrologists to differentiate care according to unique patient values and goals; therefore, improving HRQoL. Further studies need to be conducted to identity best practices for implementation of PROMs into dialysis centers and to understanding causes of low response rate.
[1] Tang E, et a. Frontiers in Medicine. 2017; Patient-reported outcomes in patients with chronic kidney disease and kidney transplant;4:254.
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