Original ArticlesMaintenance Dialysis

Implementing a Patient-Reported Outcome Measure for Hemodialysis Patients in Routine Clinical Care

Perspectives of Patients and Providers on ESAS-r:Renal

Jenna M. Evans, Alysha Glazer, Rebecca Lum, Esti Heale, Marnie MacKinnon, Peter G. Blake and Michael Walsh
CJASN September 2020, 15 (9) 1299-1309; DOI: https://doi.org/10.2215/CJN.01840220

Abstract

Background and objectives The Edmonton Symptom Assessment System Revised: Renal is a patient-reported outcome measure used to assess physical and psychosocial symptom burden in patients treated with maintenance dialysis. Studies of patient-reported outcome measures suggest the need for deeper understanding of how to optimize their implementation and use. This study examines patient and provider perspectives of the implementation process and the influence of the Edmonton Symptom Assessment System Revised: Renal on symptom management, patient-provider communication, and interdisciplinary communication.

Design, setting, participants, & measurements Eight in-facility hemodialysis programs in Ontario, Canada, assessed patients using the Edmonton Symptom Assessment System Revised: Renal every 4–6 weeks for 1 year. Screening and completion rates were tracked, and pre- and postimplementation surveys and midimplementation interviews were conducted with patients and providers. A chart audit was conducted 12 months postimplementation.

Results In total, 1459 patients completed the Edmonton Symptom Assessment System Revised: Renal; 58% of eligible patients completed the preimplementation survey (n=718), and 56% of patients who completed the Edmonton Symptom Assessment System Revised: Renal at least once completed the postimplementation survey (n=569). Provider survey response rates were 71% (n=514) and 54% (n=319), respectively. Nine patients/caregivers from three sites and 48 providers from all sites participated in interviews. A total of 1207 charts were audited. Seven of eight sites had mean screening rates over 80%, suggesting that routine use of the Edmonton Symptom Assessment System Revised: Renal in clinical practice is feasible. However, the multiple data sources painted an inconsistent picture of the value and effect of the Edmonton Symptom Assessment System Revised: Renal. The Edmonton Symptom Assessment System Revised: Renal standardized symptom screening processes across providers and sites; improved patient and provider symptom awareness, particularly for psychosocial symptoms; and empowered patients to raise issues with providers. Yet, there was little, if any, statistically significant improvement in the metrics used to assess symptom management, patient-provider communication, and interdisciplinary communication.

Conclusions The Edmonton Symptom Assessment System Revised: Renal patient-reported outcome measure may be useful to standardize symptom screening, enhance awareness of psychosocial symptoms among patients and providers, and empower patients rather than to reduce symptom burden.

Introduction

Patients treated with maintenance dialysis experience high symptom burden and severity (1). Yet, their symptoms are often under-recognized, underestimated, and undertreated by nephrology providers (2–⇓4). A standardized and patient-centered process of symptom screening may improve symptom detection and treatment (4).

Patient-reported outcome measures (PROMs) are questionnaires that elicit patient views of their symptoms, functional status, and/or health-related quality of life (5). Studies in oncology suggest that the routine collection and feedback of PROM results to providers can improve patient-provider communication, detection of unrecognized problems, monitoring of treatment response, symptom management, interdisciplinary team care, and patient satisfaction (6–⇓⇓9). Use of PROMs in oncologic settings has also been linked to improved clinical outcomes, including better health-related quality of life, fewer emergency room visits, fewer hospitalizations, and superior quality-adjusted survival (8,10). However, in general, the evidence base is heterogeneous, and effects are small to moderate (7,8,11,12).

Studies of PROMs suggest the need for deeper understanding of how to optimize the implementation and use of PROMs in clinical practice (11,13–⇓15). Despite increasing use of PROMs, ambiguity regarding their purpose and benefits persists, and studies continue to emphasize challenges with provider engagement and uptake (11,16,17). Furthermore, few studies of PROMs capture the lived experiences of both patients and diverse providers at multiple points in time. Finally, most studies of PROMs were conducted in mental health and oncology, not nephrology, settings.

The Edmonton Symptom Assessment System Revised: Renal (ESAS-r:Renal) is a PROM used to assess physical and psychosocial symptom burden in patients treated with maintenance dialysis (18,19). The ESAS-r:Renal prompts patients to rate how they feel or function with regard to 12 common symptoms using a self-completed questionnaire. The ESAS-r:Renal directly and exclusively assesses patient self-report of troublesome symptoms, has been cross-sectionally and longitudinally validated in patients receiving in-facility hemodialysis, and is practical for routine use in clinical care (13,18,19).

This study examined patient and provider perspectives of the implementation and early effect of the ESAS-r:Renal on routine clinical care in Ontario, Canada. A longitudinal mixed methods approach was used to identify implementation enablers and barriers and examine the perceived influence of the ESAS-r:Renal on three processes: (1) symptom management, (2) patient-provider communication, and (3) interdisciplinary communication. These processes were prioritized through province-wide consultations with clinicians, managers, and patients led by the Ontario Renal Network (ORN), the agency that funds and manages the delivery of nephrology services in the province.

Materials and Methods

Design

A standardized approach to symptom screening and assessment led by nurses using the ESAS-r:Renal was implemented in eight in-facility hemodialysis units in Ontario. The ORN planned and oversaw implementation using a phased approach between 2017 and 2018 (i.e., sites began screening between April and June 2017). The ESAS-r:Renal was administered to patients every 4–6 weeks using primarily pen and paper; one site used iPads. Further details on implementation, including provider education, are provided in Supplemental Material.

To evaluate the project, we used a longitudinal mixed methods research design involving monthly monitoring of the ESAS-r:Renal screening and completion rates, pre- and postimplementation surveys with patients and providers, midimplementation semistructured interviews with patients and providers, and a chart audit (Figure 1).

Figure 1.
Figure 1.

Mixed methods data collection over 1 year. ESAS-r:Renal, Edmonton Symptom Assessment System Revised: Renal.

Setting

Eight sites expressed interest in participating in the pilot project. Because of the diverse characteristics of the sites in terms of geographic location, hospital type, and program size, all eight sites were included.

Participants

Included patients were receiving long-term in-facility hemodialysis at one of the selected sites, and they were over the age of 18. Patients could decline the ESAS-r:Renal temporarily or permanently at any time (i.e., the cohort was open, and patients could opt in or out over time).

Measurements

Data to calculate two process metrics were collected on a monthly basis from sites: (1) screening rate (patients offered an ESAS-r:Renal questionnaire/eligible patients) and (2) completion rate (unique fully or partially completed questionnaires/patients offered a questionnaire).

Four surveys were developed to evaluate the ESAS-r:Renal: two surveys for patients, administered preimplementation to all eligible patients and 6 months postimplementation to all patients who completed the ESAS-r:Renal at least once, and two surveys for providers, administered preimplementation and 12 months postimplementation. The patient postimplementation survey occurred at 6 months, rather than 12 months, due to potential for high patient attrition and the goal of sampling some of the same participants before and after implementation. The surveys were pretested with three patients and four providers, resulting in minor changes to wording to improve clarity.

The patient surveys aimed to compare perceptions of symptom management and patient-provider communication pre- and postimplementation and to assess experiences with the ESAS-r:Renal. The patient surveys included three items adapted from the validated Communication Assessment Tool measuring patient perceptions of communication with providers (20,21). The provider surveys aimed to compare perceptions of interdisciplinary communication and confidence to manage the symptoms on the ESAS-r:Renal pre- and postimplementation and to assess experiences with the ESAS-r:Renal. The provider surveys included three items adapted from the validated Collaborative Practice Assessment Tool (22). The survey data were analyzed in SPSS v25 using descriptive statistics and the chi-squared test to compare pre- and postimplementation responses. With consideration for contextual differences across sites and the likelihood of wide variation in sample sizes and descriptive statistics, we prespecified that hypothesis tests would be applied only on results within each site.

Semistructured interviews were also conducted with patients and providers at midimplementation (6 months) to better understand experiences with the ESAS-r:Renal. For patient interviews, three sites were purposefully selected to represent varied geographic locations and screening rates. Unit project leads were responsible for inviting patients to participate and obtaining consent to share contact information with the ORN. These leads also purposefully selected staff members for interviews using a comprehensive staff list to ensure representation across sites and professions and emailed them an invitation to participate. Interview guides were pretested, and interviews were facilitated by J.M.E., were attended by A.G. and R.L., involved a verbal consent process, were 1 hour in length, and were digitally recorded and transcribed verbatim. At the time of the study, J.M.E. was a PhD-trained research scientist on an evaluation unit at the ORN. She had no relationship or contact with participants prior to study commencement. Data saturation was reached with patients and providers, rendering further recruitment unnecessary. Transcripts were not returned to participants for comment or correction. J.M.E. and R.L. independently coded four transcripts using an inductive approach to develop coding frameworks for the two sets of interviews, which were further refined on the basis of discussion. R.L. coded the remaining transcripts using NVivo software, and J.M.E. and R.L. used thematic analysis to identify themes (23).

A chart audit was conducted to assess symptom management for six symptoms: anxiety, depression, pain, itching, tiredness, and shortness of breath. The first five symptoms selected were perceived as common and outside the scope of care for routine dialysis assessments. Shortness of breath was chosen as a contrast because it is part of the usual scope for dialysis assessments. The audit determined the proportion of charts with a documented symptom assessment conversation and symptom management approach overall and by symptom score category. Nurses audited at least 20 charts per symptom per site, including a minimum of six to eight charts for each category of symptom scores: low (zero to three), moderate (four to six), and severe (seven to ten).

Results from all data sources described above were examined side by side to identify areas of agreement, complementarity, or disagreement, and overarching themes were developed to integrate these results through narrative (24). The results were presented to project leads for discussion and dissemination within their units.

Results

Participant Demographics

There were 9408 screening attempts by the sites, of which 8744 screens (93%) were fully or partially completed by 1459 unique patients with a mean age of 68. Supplemental Material has additional demographic data. Thirty-seven patients declined all screening attempts. Reasons for declining were not elicited.

The pre- and postimplementation patient surveys garnered 58% (n=718) and 56% (n=569) response rates, respectively. The pre- and postimplementation provider surveys garnered 71% (n=514) and 54% (n=319) response rates, respectively, primarily from nursing staff (79%). Supplemental Material has demographic data on respondents.

Eight patients and one caregiver of a ninth patient participated in one-on-one interviews in person or by phone. Of the nine patients, five were women (56%), and four (44%) were men; the average age was 64 years; six were on dialysis for 1–5 years (67%), and three were on dialysis for >5 years (33%). All patients completed the ESAS-r:Renal five to eight times.

Group interviews were conducted via teleconference, with 48 providers and staff representing all eight sites. Each interview focused on the experiences of a particular profession: nephrologists (n=5), nurse practitioners (n=3), nurse managers (n=5), registered nurses and registered practical nurses (n=7), pharmacists (n=3), dietitians (n=9), social workers (n=4), clerical staff (n=3), and project leads (n=9).

A total of 1207 charts were audited across the eight sites.

Mixed Methods Results

Results from our varied data sources were synthesized into six thematic areas, described below. Table 1 presents illustrative interview quotes for each theme, Table 2 displays screening and completion rates by site, and Tables 3 and 4 present survey results for patients and providers, respectively. Figures 2 and 3 present chart audit results.

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Table 1.

Illustrative quotes for six organizing themes

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Table 2.

Mean numbers of eligible patients, screening rates, and completion rates by site

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Table 3.

Patient pre- and postimplementation survey results

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Table 4.

Provider pre- and postsurvey results

Figure 2.
Figure 2.

Sixty-six percent of charts had a documented symptom assessment conversation with patients, and as symptom severity increased, the proportion of charts with a documented conversation also increased. CVH, Trillium Health Partners, Credit Valley Hospital; JHH, St. Joseph’s Healthcare Hamilton; LHS, London Health Sciences Centre; NBH, North Bay Regional Health Centre; NFS, Niagara Health System, Niagara Falls Site; OTM, Halton Healthcare Services, Oakville Trafalgar Memorial Hospital; SMH, St. Michael’s Hospital; TGH, University Health Network, Toronto General Hospital.

Figure 3.
Figure 3.

About half of audited charts had a documented symptom management approach, and as symptom severity increased, the proportion of charts with a symptom management approach also increased.

It Can Be Done—Feasibility of the Edmonton Symptom Assessment System Revised: Renal

Seven of eight sites had mean screening rates over 80%, and all sites had mean completion rates over 90%, suggesting that routinely using the ESAS-r:Renal in clinical practice is feasible. Feasibility is further supported by the postsurveys, in which almost 80% of patients reported no problems completing the ESAS-r:Renal, and less than a quarter of providers strongly agreed or agreed that the ESAS-r:Renal negatively affected clinic flow or that steps associated with the ESAS-r:Renal took too much time (mean of 42% if “slightly agree” is included). However, in the interviews, providers did note an increase in workload and documentation, particularly for clerks, nurses, and social workers.

Setting the Standard—The Edmonton Symptom Assessment System Revised: Renal Improves Symptom Awareness and Screening Consistency

The results highlight two benefits of using the ESAS-r:Renal—improved awareness of symptom burden among providers and patients, particularly for psychosocial symptoms (i.e., anxiety and depression), and a more standardized symptom screening process across providers and sites.

In the postsurvey, 66% of providers strongly agreed or agreed that the ESAS-r:Renal ensures that symptoms are not missed (89% if “slightly agree” is included). In the interviews, providers described increased awareness of psychosocial symptoms in particular. In the interviews, patients also noted that they are more aware of their symptom burden and how their symptoms may be related to kidney failure or dialysis.

In the postsurvey, 65% of providers strongly agreed or agreed that a standardized approach using a validated tool such as the ESAS-r:Renal to screen and assess patient symptoms should be considered best practice (89% if “slightly agree” is included). In the interviews, providers confirmed that the ESAS-r:Renal helped standardize screening processes and enable symptom tracking over time. In the interviews, patients also appreciated the consistent approach and ability to monitor their symptom burden over time.

Talking It through—Effect of the Edmonton Symptom Assessment System Revised: Renal on Patient-Provider and Interdisciplinary Communication

The results suggest that the ESAS-r:Renal had a modest effect on patient-provider communication and very limited effect on interdisciplinary communication. Regarding patient-provider communication, the pre- and postpatient surveys included four items focused on provider behavior. A site-by-site analysis suggests little to no change over time. This survey result is corroborated by provider interviews, which suggest that the nature and value of conversations with patients have remained the same. Yet, providers noted in the survey and interviews that the ESAS-r:Renal helped them prioritize which symptoms to discuss with patients. The chart audit supports this claim; as symptom severity increased, the proportion of charts with documented symptom assessment conversations with patients also increased (Figure 2).

In the postsurvey, patients considered how the ESAS-r:Renal affected their own behavior. About half of patients reported that the ESAS-r:Renal helped them “always” or “most of the time” tell their health care team about their symptoms (81% if “sometimes” is included) and participate more in discussions about their care (74% if “sometimes” is included). In the interviews, patients appreciated having an alternative channel for disclosing symptoms and reported that the ESAS-r:Renal helped them disclose symptoms that they may not have otherwise, chiefly psychosocial symptoms. They also explained that conversations with providers about symptoms were largely the same as before the ESAS-r:Renal except when reporting higher symptom scores, which they did perceive as generating more valuable conversations.

Interdisciplinary communication was measured through three pre- and postsurvey items and one item only measured in the postsurvey. A site-by-site analysis of the pre- and postitems suggests no change in the desired direction, a result corroborated by provider interviews in which interdisciplinary communication was described as “the same.” However, the postsurvey item presents a different picture: 52% of providers strongly agreed or agreed that the ESAS-r:Renal improved interdisciplinary communication (82% if “slightly agree” is included).

Where the Rubber Hits the Road—Using the Edmonton Symptom Assessment System Revised: Renal Scores to Manage Symptoms

The interviews suggest that providers were more comfortable using the ESAS-r:Renal to assess symptoms rather than actively manage them, particularly for psychosocial symptoms. This finding is supported by chart audit and survey results. Only half of audited charts (49%) had a documented symptom management approach such as patient education, prescription, or referral (Figure 3). The postsurvey shows that 53% of providers were very or moderately confident managing depression and that 57% of providers were very or moderately confident managing anxiety compared with over 70% for shortness of breath, pain, and nausea. Provider confidence to manage symptoms decreased significantly for all symptoms from the pre- to postsurvey. The interviews revealed that a lack of confidence managing symptoms, particularly psychosocial symptoms, was compounded over time by stagnant symptom scores that contributed to feelings of “failure” among providers. Three barriers to using the ESAS-r:Renal most highly rated by providers in the postsurvey were related to symptom management: (1) patients symptoms are difficult to improve (40%), (2) no standardized triggers for when and how to respond to symptom scores (32%), and (3) a lack of awareness of relevant community-based services (32%).

Two pre- and postsurvey items measured patient perceptions of symptom management (Table 3). There were no significant differences from pre- to postsurvey at five of eight sites for management of physical symptoms (three sites decreased) and seven of eight sites for management of psychosocial symptoms (one site decreased).

Too Much of a Good Thing? Influence of Screening Frequency on Value and Sustainability

The frequency of the ESAS-r:Renal screening influenced perceived value and sustainability. In the postsurvey, 45% of providers strongly agreed or agreed that there is not enough time between screens to see changes in patients’ symptoms; among 12 potential barriers to using the ESAS-r:Renal, this barrier was most prominent. In the postsurvey, 50% of providers reported that patients should complete the ESAS-r:Renal once every 3 months, whereas 23% opted for maintaining the status quo of every 4–6 weeks. In the interviews, providers explained that the value of the ESAS-r:Renal decreases with subsequent screens, and they know their patients well; hence, most recommended screening on a quarterly basis. In the postsurvey, patient perceptions of ideal screening frequency were more variable, with most (37%) selecting 4–6 weeks.

Context Matters—Influence of Organizational and System Factors on Success of the Edmonton Symptom Assessment System Revised: Renal

In the interviews, providers identified contextual factors that influenced the ESAS-r:Renal, which may explain variation in success across sites. Key factors included strong clinical and administrative leadership support, embedding new processes into existing clinical workflows to reduce workload/time pressures, resources such as additional social workers and psychiatrists in the unit to address patients’ psychosocial symptoms, and technology for more efficient data collection and integration into electronic medical records—a feat achieved by one site with iPads. Providers also referenced system-level barriers such as long waiting lists for specialist appointments and poor integration of services. In the postsurvey, for example, about a third of providers reported lack of awareness of community-based services (32%) and difficulty accessing services outside their unit (31%).

Discussion

The results demonstrated the feasibility of routinely using the ESAS-r:Renal in clinical practice. However, our multiple sources of data painted an inconsistent picture of the value of the ESAS-r:Renal. The ESAS-r:Renal standardized symptom screening processes across providers and sites; improved patient and provider symptom awareness, particularly for psychosocial symptoms; and empowered patients. Yet, there was little, if any, statistically significant improvement in the metrics used to assess symptom management, patient-provider communication, and interdisciplinary communication.

Regarding symptom management, pre- and postsurvey items showed no significant difference in patient perceptions for most sites. This result may be explained by provider-identified barriers to symptom management, including a lack of standardized triggers for action, awareness of appropriate community-based services, and confidence to address symptoms. Provider confidence to manage symptoms decreased significantly from pre- to postimplementation. This decrease may be due to providers realizing, through experience with the ESAS-r:Renal, that they require more training and support. Patient expectations for symptom management may also have increased as a result of the project itself.

Our findings on patient-provider communication are consistent with a review that found that PROMs did not shift providers’ communication practices but did positively influence patient-provider communication in other ways, such as empowering patients to raise issues with providers (25). The lack of improvement in pre- and postsurveys of patient-provider communication may also be due to a ceiling effect caused by high ratings at baseline, an issue cited by a previous study (7).

Similarly, use of the ESAS-r:Renal had mixed influence on interdisciplinary communication. Survey items aimed at specific aspects of communication did not consistently improve, possibly due to a ceiling effect given that providers reported that interdisciplinary practice was already strong. However, in a more generic postsurvey item, most providers reported that interdisciplinary communication improved. It is possible that the specific items failed to capture the aspects of interdisciplinary communication that the ESAS-r:Renal did influence.

Overall, the results suggest that PROMs may be useful to promote standardization of symptom screening processes, enhance awareness of psychosocial symptoms among patients and providers, and empower patients rather than to reduce symptom burden. Furthermore, the value of standardized screening with the ESAS-r:Renal may be maximized and costs minimized by (1) clarifying aims to avoid inappropriate patient expectations and provider perceptions of “failure,” (2) ensuring that providers have the training and resources necessary to respond to high symptom scores (particularly for psychosocial symptoms), and (3) screening less frequently, such as every other month or quarterly.

This study has several limitations. First, this study focused on implementation and attitudes, not patient health outcomes. Whether routine use of the ESAS-r:Renal measurably improves patient well-being remains uncertain. Second, interviews were conducted at midimplementation (6 months). It is possible that patient and provider views shifted by the end of the project (12 months). However, both patients and providers had an opportunity to share their views via open-ended questions on the postimplementation surveys. Third, we did not use validated surveys, but some survey items were adapted from validated surveys, and all surveys were pretested and refined prior to administration. Fourth, sample sizes and responses for all surveys varied widely across sites, precluding significance testing on the entire sample. Fifth, we did not measure the attitudes of providers and patients who did not use the ESAS-r:Renal. Sixth, the chart audit was conducted postimplementation only, with no baseline measurement to determine whether shifts in practice occurred.

Future research should more closely examine the influence of PROMs on patient-provider communication using longitudinal mixed methods, including more detailed validated measures of communication. Observational research (in addition to self-report) may also provide new insight into the ways in which PROM feedback is (and is not) being used by providers in the delivery of care.

Disclosures

P.G. Blake reports working part time at the ORN while contributing to this work and receiving speaking honoraria from Baxter Global outside the submitted work. All remaining authors have nothing to disclose.

Funding

None.

Acknowledgments

This project was supported in kind by the ORN. The ORN is designated a “prescribed entity” for the purposes of section 45(1) of the Personal Health Information Protection Act of 2004. As a prescribed entity, the ORN is authorized to collect personal health information from health information custodians without the consent of the patient and to use such personal health information for the purpose of analysis or compiling statistical information with respect to the management, evaluation, or monitoring of the allocation of resources or planning for all or part of the health system, including the delivery of services. Because this project complied with privacy regulations given the ORN’s status, ethics review was waived. We would like to thank our partner sites and all participants for contributing to the success of this project. In particular, we would like to thank ORN staff member Carey Moolji; ORN Patient and Family Advisors; “Your Symptoms Matter” Task Group Members; Regional Directors; Program Directors; Clinical Leads at participating sites: Drs. Anthony Broski, Charmaine Lok, Chris Rabbat, Danny Sapir, Darren Saunders, Veronica Silva, Ron Wald, and Matthew Weir; Project Leads at participating sites: Devi Ahuja, Jovina Bachynski, Annellie Cristobal, Kristen Daniw, Nancy Hemrica, Stacey Horodenzy, Shelley O’Grady, Christine Nash, Sanja Neskovic, Jane Ridley, Pamela Robinson, Kelly Taylor, and Cherie Wilson; and patients at participating sites.

Data Sharing Statement

Requests by qualified researchers to access our deidentified raw data may be made directly to the authors and will be subject to review and approval by the ORN.

Supplemental Material

This article contains the following supplemental material online at http://cjasn.asnjournals.org/lookup/suppl/doi:10.2215/CJN.01840220/-/DCSupplemental.

Supplemental Material. Implementation details for the “Your Symptoms Matter” (the ESAS-r:Renal) project, reflections on provider education, excerpts from data collection tools (surveys, interview guides, and chart audit template), and qualitative coding trees for patient and provider interviews.

Supplemental Table 1. Patient demographic and clinical characteristics (n=1459).

Supplemental Table 2. Profile of survey respondents pre- and postimplementation.

Footnotes

  • Published online ahead of print. Publication date available at www.cjasn.org.

  • See related editorial, “A Step in the Right Direction: The Promise of PROMs in Routine Hemodialysis Care,” on pages 1228–1230.

  • Received February 10, 2020.
  • Accepted June 15, 2020.

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Implementing a Patient-Reported Outcome Measure for Hemodialysis Patients in Routine Clinical Care
Jenna M. Evans, Alysha Glazer, Rebecca Lum, Esti Heale, Marnie MacKinnon, Peter G. Blake, Michael Walsh
CJASN Sep 2020, 15 (9) 1299-1309; DOI: 10.2215/CJN.01840220
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