April 21, 2023

Routine patient surveys for symptom management may not be as helpful as intended

Kidney patients are often asked by their care providers to complete a survey to help assess their current health status, but new data suggests that this approach may not necessarily enhance communication between patients and their care providers.

Patient-reported outcome measures (PROMs) are tools that invite patients to self-report symptom severity and aspects of their quality of life. Several studies conducted in other clinical settings suggest that PROM surveys can help enhance patients’ communication with clinicians. To gain insights in the hemodialysis setting, Kara Schick-Makaroff et al. conducted in-depth interviews with patients and nurses in Alberta, and analyzed responses from 510 patients to open-ended survey questions.

The results show that routine use of PROMs did not improve communication, and point to four possible reasons for this: 1) insufficient understanding of the purpose of PROMs; 2) challenges with PROMs administration; 3) inconsistencies with using PROMs as communication tools; 4) limited patient- and clinician-perceived value of PROMs. For instance, many patients wondered if the survey was just part of regular protocol, for research purposes, or to “keep tabs on us.”

Some patients were unsure, or even fearful, about how their PROM responses were used and by whom; for example, they worried they might be labeled as “not compliant” or that their responses may result in them being denied a kidney transplant, so they intentionally provided inaccurate information. Some nurses expressed uncertainty about what to do if patients reported “no problems/symptoms” or reported symptoms that conflicted with what they said verbally to the nurses in conversation.

The results also show that, overall, PROMs were not always administered, completed, or used as intended, despite clinician training and site champions. Some participants actually viewed PROMs as a hindrance to communication, for example if patients had difficulty understanding the questions. Often, participants viewed PROMs as simply a task to complete, rather than something to inform or improve care. However, other patients and nurses did report some enhanced benefit in terms of communication when using PROMs.

Accompanying editorial: Integrating PROMs in Routine Dialysis Care – The Devil is in the (Implementation) Details