Kidney Week 2025 Annual Meeting-Patient-Reported Outcomes: Why (and How) Should They Be Implemented?

Video Transcription

Video Summary

The session introduces the need to implement patient-reported outcomes (PROs) and patient-reported outcome measures (PROMs) in nephrology care and research to better capture symptom burden and quality of life. Moderators Dr. Deepal Patel (Johns Hopkins) and Dr. Michal Milamed (NYU) frame PROMs as tools to routinely identify symptoms that clinicians often miss and to ensure clinical trials measure benefits that matter to patients.<br /><br />Patient advocate Curtis Warfield describes PROs as the “voice of the patient,” capturing lived experience without clinician interpretation (pain, fatigue, mental health, functioning, and economic impact). He emphasizes barriers: poorly designed questionnaires, lack of patient education about why PROs matter, inaccessible language, and insufficient inclusivity. He argues patients should help design PROMs early, with flexible reporting modes (paper, oral, video, digital) and consistent schedules. Critical themes include transparency (no coaching responses), privacy, caregiver input, and integrating PROs into routine care to build trust and improve shared decision-making.<br /><br />Dr. Jenny Flythe discusses PROM implementation in non-dialysis CKD clinical care, noting high symptom prevalence and major under-documentation by nephrologists. Evidence from oncology shows routine symptom PROM monitoring can improve quality of life and even survival, but only if clinicians respond; collecting PROMs without follow-up can harm trust. She reviews CKD examples (Denmark tele-PRO triage, REPROM pilots, Johns Hopkins symptom surveys) and highlights workflow, equity, and clinician buy-in as key barriers. Successful implementation requires clear goals, stakeholder engagement, actionable outcomes, EHR integration, and defined response pathways.<br /><br />Dr. Kevin Weinfurt broadens measurement beyond PROMs to include observer-, clinician-, and performance-reported outcomes, stressing “fit-for-purpose” validation and avoiding dichotomizing PROM scores. He reviews FDA-aligned approaches for selecting, analyzing, and interpreting PRO endpoints, and reinforces early patient involvement in trial planning.<br /><br />Dr. Sarah Davison focuses on operationalizing symptom management—especially pain—using simple tools (e.g., ESAS-r:Renal), clear frequency strategies, and actionable workflows. She presents a stepwise pain approach (reversible causes, nonpharmacologic options, topical agents, then cautious pharmacologic therapy), emphasizing realistic patient-centered goals, assessing pain type and chronicity, opioid-sparing strategies, and the need to be prepared to treat what PROMs uncover.

Asset Subtitle

Moderator(s): Michal Melamed, Dipal Patel

Presentation(s):

Clinical Trial Outcomes and Treatment Decisions in Nephrology: A Patient's Perspective - Curtis Warfield
Implementation of PRO Measures in Clinical Care - Jennifer Flythe
Use of PRO Measures in Clinical Trials in Nephrology - Kevin Weinfurt
Personalizing Pain Management Therapies for Patients with Kidney Diseases - Sara Davison

Meta Tag

Date 11/6/2025

Pathway 1 CKD Non-Dialysis

Session ID 507211

Keywords

patient-reported outcomes

PROs

patient-reported outcome measures

PROMs

nephrology care

chronic kidney disease

CKD symptom burden

quality of life

symptom monitoring

EHR integration

shared decision-making

patient-centered clinical trials

FDA PRO endpoints

ESAS-r:Renal

pain management in CKD