Electronic Patient-Reported Outcomes (ePROMs) for Chronic Kidney Disease: Improving Symptom Tracking and Patient Care

Chronic kidney disease (CKD) represents a major and growing global health challenge. Characterized by the gradual loss of kidney function, CKD affects millions of individuals worldwide. Symptoms such as fatigue, pain, sleep disturbances, and mental health burdens often evolve slowly but profoundly impact quality of life. Because these subjective experiences aren’t always captured well in traditional clinical assessments like blood tests or imaging, researchers and clinicians increasingly rely on patient‑reported outcome measures (PROMs) to understand how the disease truly affects people’s lives. PROMs are standardized questionnaires that allow patients to report directly on their symptoms, general health, and quality of life.

Moving PROMs into electronic formats (ePROMs) has become a priority. Digital tools let patients report symptoms remotely, integrate data directly into electronic health records (EHRs), and reduce administrative burden. However, before ePROMs can be widely implemented in routine clinical care, their measurement properties—such as reliability, validity, stability, and responsiveness—must be rigorously tested. This ensures clinicians can trust the data and use it to guide real‑world decisions.

In late 2025, Patel et al. published a key study in Kidney360 assessing the measurement properties of a specific electronic PROM, the Kidney Disease Symptom Score (KDSS), in people with non‑dialysis‑dependent CKD (NDD‑CKD). This article offers timely insights into both the scientific rigor and real‑world utility of ePROMs in kidney care.

Introducing the Kidney Disease Symptom Score (KDSS)

The KDSS is an electronic patient‑reported outcome instrument developed to monitor symptoms commonly experienced by people with CKD. It is partially based on the well‑established KDQoL‑36 questionnaire, a PROM widely used to assess health‑related quality of life in kidney disease populations. By moving this measurement into an electronic format, researchers hope to facilitate easier, more frequent symptom reporting that feeds directly back into clinical care.

The key objectives of the Patel et al. study were to:

• Evaluate the temporal stability of the KDSS in patients whose kidney function remained stable.
• Assess the responsiveness of KDSS scores in patients whose kidney function worsened over time.
• Determine convergent construct validity by comparing KDSS data with other patient‑reported outcomes such as the Medicare Annual Wellness Visit (AWV) assessments.

Each of these properties is crucial for clinical use:

• Temporal stability shows that the instrument gives consistent results in stable conditions.
• Responsiveness indicates the ability to detect meaningful changes in patient health.
• Construct validity demonstrates that the measure is accurately capturing underlying concepts it claims to assess, like general health or depression.

Study Design: Real‑World EHR Data and Routine Clinical Care

Unlike many research studies that collect PROM data only in controlled trial settings, this study looked at electronic health record (EHR) data from patients with NDD‑CKD who completed the KDSS as part of routine nephrology care. That means the results reflect how the instrument performs in real clinical environments, not just academic testing ground.

The researchers conducted a retrospective analysis of KDSS responses and other clinical data, identifying two key patient groups:

1. 147 patients with stable kidney function, used to assess temporal stability.
2. 35 patients who experienced worsening kidney function, used to assess responsiveness.

The analysis focused on multiple domains of self‑reported outcomes, including general health, quality of life, physical symptoms, and mental health.

Key Findings: Stability, Validity, and Limited Responsiveness

1. Strong Temporal Stability

For patients whose kidney function remained stable over time, sequential KDSS scores demonstrated strong correlation across domains:

• General health: correlation coefficient ~0.76
• Quality of life: ~0.63
• Physical symptoms: ~0.74
• Mental health: ~0.71

These figures show that when patients’ medical conditions did not objectively change, the KDSS produced consistent and reliable results over repeated assessments. This supports the claim that the instrument is stable over time in real‑world clinical use.

Temporal stability is foundational because if a PROM fluctuates unpredictably in stable conditions, clinicians cannot confidently interpret changes as meaningful. In contrast, KDSS scores remained steady when expected.

2. Evidence of Convergent Construct Validity

The KDSS also demonstrated moderate to strong correlations with other established patient‑reported outcomes. Specifically, when compared to responses from the Medicare Annual Wellness Visit assessments:

• General health correlations were strong (~0.64).
• Correlations with depressive symptoms were moderate (~0.50).

These results suggest that KDSS scores align with other validated measures of similar constructs, evidence that the KDSS is capturing meaningful aspects of patients’ health and symptom experiences. In psychometrics, this alignment is known as convergent construct validity, and it underscores that the KDSS is not just a random collection of questions, but a structured instrument reflecting underlying health concepts.

3. Mixed Results for Responsiveness

Responsiveness refers to the ability of a PROM to detect clinically meaningful change when a patient’s condition worsens or improves. In the NDD‑CKD group with worsening kidney function, the KDSS detected clinically important differences in physical symptoms and mental health scores in about 40% of respondents.

While this represents some responsiveness, the study authors note that only a subset of patients experienced significant score changes, and only in select domains. They also observed evidence suggesting that hospitalizations influenced KDSS scores, raising questions about how specific the KDSS is to kidney function changes versus other health stressors.

In other words, the instrument shows promise but is not yet fully responsive across all clinically relevant changes, especially those strictly tied to kidney disease progression.

Implications for Clinical Care and Research

The results of this study are both encouraging and cautious.

Encouraging:

• The KDSS appears to be reliable and valid when used in routine clinical care settings.
• Its stability and convergent validity suggest it can be confidently used to monitor symptoms and general wellbeing in people with NDD‑CKD.
• As an electronic measure, it integrates smoothly into modern clinical workflows, especially when tied to EHR systems.

Cautious:

• Responsiveness to clinical change, crucial for longitudinal monitoring and evaluating treatment effects, was only partially demonstrated.
• Further research is needed to validate KDSS responsiveness, determine thresholds of clinical significance, and clarify how best to interpret symptom changes.

To put this in context, other research on PROMs in CKD has shown that traditional measures like the KDQoL‑36 have been validated in various CKD populations and offer strong measurement properties, but many instruments still need robust evidence for responsiveness and structural validity.

Why This Matters for Patients and Clinicians

The adoption of ePROMs like the KDSS could enhance CKD care in several ways:

• Patient engagement: Patients can report symptoms easily from home, leading to a more continuous understanding of their health.
• Clinical decision support: Clinicians can use trend data to tailor treatments and monitor adverse events.
• Health systems planning: Aggregated PROM data can inform quality improvement and population health initiatives.

But quality measurement tools must first prove they work. The Patel et al. study takes an important step in that direction by showing that ePROMs can be stable and valid in real‑world care, though work remains to fully establish their responsiveness and clinical interpretability.

Conclusion: A Step Forward With More Steps Ahead

Measurement of patient‑reported outcomes is essential in chronic kidney disease, a condition whose subjective symptoms often signal deeper quality‑of‑life concerns. Electronic PROMs like the KDSS offer the potential for more flexible, accessible, and real‑time symptom tracking. The study demonstrates that the KDSS has:

• Strong temporal stability
• Moderate convergent validity
• Partial responsiveness to changes in health

These findings support the use of KDSS in routine care but also call for further research to confirm how sensitive the tool is to meaningful clinical changes, especially those specifically linked to kidney disease progression. As ePROMs continue to evolve and integrate into healthcare settings, rigorous measurement science will be vital to ensuring they truly benefit patients, clinicians, and health systems alike.

Source: Patel DM, Han D, Segal JB. Measurement Properties of an Electronic Patient-Reported Outcome Measure for Patients with Non-Dialysis-Dependent CKD. Kidney360. 2025 Dec 18. doi: 10.34067/KID.0000001092.