Patient-reported outcome measures in the care of in-centre hemodialysis patients

Can J Kidney Health Dis

Berendonk

Overwater

et al. 2022

Self Cite

Background: Depression and anxiety are commonly reported (40% and 11%-52%) among adults receiving dialysis, compared with ~10% among all Canadians. Mental health in dialysis care is underrecognized and undertreated. Objective: (1) To describe preferences for mental health support reported by Albertans receiving dialysis; (2) to compare depression, anxiety, and quality-of-life (QOL) domains for people who would or would not engage in support for mental health; and (3) to explore sociodemographic, mental health, and QOL domains that explain whether people would or would not engage in support for mental health. Design: A cross-sectional survey. Setting: Alberta, Canada. Patients: Adults receiving all modalities of dialysis (N = 2972). Measurements: An online survey with questions about preferences for mental health support and patient-reported outcome measures (Patient Health Questionnaire–9 [PHQ-9], Generalized Anxiety Disorder–7 [GAD-7], and Kidney Disease QOL Instrument–36 [KDQOL-36]). Methods: To address objectives 1 and 2, we conducted chi-square tests (for discrete variables) and t tests (for continuous variables) to compare the distributions of the above measures for two groups: Albertans receiving dialysis who would engage or would not engage in support for mental health. We subsequently conducted a series of binary logistic regressions guided by the purposeful variable selection approach to identify a subset of the most relevant explanatory variables for determining whether or not people are more likely to engage in support for mental health (objective 3). To further explain differences between the two groups, we analyzed open-text comments following a summative content analysis approach. Results: Among 384 respondents, 72 did not provide a dialysis modality or answer the PHQ-9. The final data set included responses from 312 participants. Of these, 59.6% would consider engaging in support, including discussing medication with a family doctor (72.1%) or nephrologist (62.9%), peer support groups (64.9%), and talk therapy (60%). Phone was slightly favored (73%) over in person at dialysis (67.6%), outpatient (67.2%), or video (59.4%). Moderate to severe depressive symptoms (PHQ-9 score ≥10) was reported by 33.4%, and most respondents (63.9%) reported minimal anxiety symptoms; 36.1% reported mild to severe anxiety symptoms (GAD-7 score ≥5). The mean (SD) PHQ-9 score was 8.9 (6.4) for those who would engage in support, and lower at 5.8 (4.8) for those who would not. The mean (SD) GAD-7 score was 5.2 (5.6) for those who would engage in support and 2.8 (4.1) for those who would not. In the final logistic regression model, people who were unable to work had 2 times the odds of engaging in support than people who are able to work. People were also more likely to engage in support if they had been on dialysis for fewer years and had lower (worse) mental health scores (odds ratios = 1.06 and 1.38, respectively). The final model explained 15.5% (Nagelkerke R2) of the variance and with 66.6% correct classification. We analyzed 146 comments in response to the question, “Is there anything else you like to tell us.” The top 2 categories for both groups were QOL and impact of dialysis environment. The third category differed: those who would engage wrote about support, whereas those who would not engage wrote about “dialysis is the least of my worries.” Limitations: A low response rate of 12.9% limits representativeness; people who chose not to participate may have different experiences of mental health. Conclusions: Incorporating patients’ preferences and willingness to engage in support for mental health will inform future visioning for person-centered mental health care in dialysis.

Section: Introductionmentioning

confidence: 61%

How Are Albertans “Adjusting to and Coping With” Dialysis? A Cross-Sectional Survey

Can J Kidney Health Dis

Berendonk

Overwater

et al. 2022

Self Cite

“…This qualitative study was embedded within a pragmatic, cluster randomized controlled trial, Evaluation of routinely Measured PATient reported outcomes in HemodialYsis Care ( EMPATHY ) described elsewhere [ 25 ]. The initiative rolled out across 3 geographic areas in Canada and assessed the impact of bi-monthly screening of patients using PROMs paired with treatment guides (i.e., clinician- and patient-specific resources and handouts with suggested management approaches) on patient-clinician communication, clinical outcomes, and healthcare utilization compared with usual care [ 24 ]. This qualitative study took place across the 7 participating hemodialysis units assigned to an intervention group, where patients completed the Integrated Palliative Outcome Score [IPOS]-Renal, EQ-5D-5L, or both depending on unit allocation [ 26 , 27 ].…”

Section: Methodsmentioning

confidence: 99%

“…Whereas comprehensive clinics that engage nursing, medical, and allied health professionals have become commonplace for individuals with advanced, non-dialysis-dependent chronic kidney disease [ 21 – 23 ], how care is integrated across disciplines and how tools such as PROMs might enable concerted care in the hemodialysis setting are not well understood. Alongside a program-wide initiative integrating PROMs into routine hemodialysis care across Southern Alberta, Canada [ 24 ], this study aimed to explore patients’ and clinicians’ perspectives on the role of PROMs in supporting interdisciplinary symptom management.…”

Section: Introductionmentioning

confidence: 99%

“You need a team”: perspectives on interdisciplinary symptom management using patient-reported outcome measures in hemodialysis care—a qualitative study

Baragar

Manns

et al. 2023

J Patient Rep Outcomes

Self Cite

Background Patient-reported outcome measures (PROMs) are standardized instruments used for assessing patients’ perspectives on their health status at a point in time, including their health-related quality of life, symptoms, functionality, and physical, mental, and social wellbeing. For people with kidney failure receiving hemodialysis, addressing high symptom burden and complexity relies on care team members integrating their expertise to achieve common management goals. In the context of a program-wide initiative integrating PROMs into routine hemodialysis care, we aimed to explore patients’ and clinicians’ perspectives on the role of PROMs in supporting interdisciplinary symptom management. Methods We employed a qualitative descriptive approach using semi-structured interviews and observations. Eligible participants included adult patients receiving intermittent, outpatient hemodialysis for > 3 months, their informal caregivers, and hemodialysis clinicians (i.e., nurses, nephrologists, and allied health professionals) in Southern Alberta, Canada. Guided by thematic analysis, team members coded transcripts in duplicate and developed themes iteratively through review, refinement, and discussion. Results Thirty-three clinicians (22 nurses, 6 nephrologists, 5 allied health professionals), 20 patients, and one caregiver participated in this study. Clinicians described using PROMs to coordinate care across provider types using the resources available in their units, whereas patients tended to focus on the perceived impact of this concerted care on symptom trajectory and care experience. We identified 3 overarching themes with subthemes related to the role of PROMs in interdisciplinary symptom management in this setting: (1) Integrating care for interrelated symptoms (“You need a team”, conducive setting, role clarity and collaboration); (2) Streamlining information sharing and access (symptom data repository, common language for coordinated care); (3) Reshaping expectations (expectations for follow-up, managing symptom persistence). Conclusions We found that use of PROMs in routine hemodialysis care highlighted symptom interrelatedness and complexity and helped to streamline involvement of the interdisciplinary care team. Issues such as role flexibility and resource constraints may influence sustainability of routine PROM use in the outpatient hemodialysis setting.

“…Each cluster (i.e., in-center hemodialysis unit) was randomized to one of four study arms: (1) patients complete the Edmonton Symptom Assessment System, Revised: Renal (ESAS-r: Renal) ( 24), (2) patients complete EQ-5D-5L ( 25), (3) patients complete both ESAS-r: Renal and EQ-5D-5L, and (4) usual care (i.e., control group). Nurses were trained on and delivered the intervention of routine PROM use (described in detail elsewhere) (23,26), which encompassed (1) self-reporting with allocated PROM(s) repeated every 2 months, (2) reviewing and discussing PROM(s) scores, and (3) using decision supports and patient handouts (27) to manage symptoms at the clinicians' discretion.…”

Section: Methodsmentioning

confidence: 99%

“…e ., control group). Nurses were trained on and delivered the intervention of routine PROM use (described in detail elsewhere) (23,26), which encompassed ( 1 ) self-reporting with allocated PROM(s) repeated every 2 months, ( 2 ) reviewing and discussing PROM(s) scores, and ( 3 ) using decision supports and patient handouts (27) to manage symptoms at the clinicians’ discretion.…”

Section: Methodsmentioning

confidence: 99%

How the Routine Use of Patient-Reported Outcome Measures for Hemodialysis Care Influences Patient-Clinician Communication

Wozniak

Short

et al. 2022

CJASN

Self Cite

Background and objectivesPatient-reported outcome measures invite patients to self-report aspects of their quality of life and have been reported to enhance communication with clinicians. We aimed to examine how routine use of patient-reported outcome measures in in-center hemodialysis units influenced patient-clinician communication.Design, setting, participants, & measurementsA concurrent, longitudinal, mixed-methods approach was used. We used data from a cluster randomized controlled trial of 17 hemodialysis units in northern Alberta that introduced a patient-reported outcome measures intervention. Patient-clinician communication was assessed using a modified Communication Assessment Tool. Using interpretive description, we explored patients’ and nurses’ perceptions of communication pertaining to routine patient-reported outcome measure use. Through purposeful sampling, we interviewed ten patients and eight nurses and conducted six observations in the dialysis units, which were documented in field notes. We reviewed 779 patient responses to open-ended survey questions from randomized controlled trial data. Qualitative data were thematically analyzed.ResultsOverall, patient-reported outcome measure use did not substantively improve patient-clinician communication. There was a small positive change in mean total Communication Assessment Tool scores (range, 1–5) from baseline to 12 months in patient-reported outcome measure use units (0.25) but little difference from control group units that did not use patient-reported outcome measures (0.21). The qualitative findings provide in-depth insights into why patient-reported outcome measure use did not improve patient-clinician communication. The purpose of patient-reported outcome measure use was not always understood by patients and clinicians; patient-reported outcome measures were not implemented as originally intended in the trial, despite clinician training; there were challenges using patient-reported outcome measures as a means to communicate; and patient-reported outcome measure use was perceived to have limited value.ConclusionsWhile patient-reported outcome measures use did not improve patient-clinician communication, qualitative data suggest implementation challenges, including limited clarity of purpose and perceived limited value, that may have limited the effectiveness of the intervention.