Patient-Reported Outcomes in Nephrolithiasis: Can We Do Better?

Purpose: Nephrolithiasis contributes significantly to the worldwide healthcare burden. Patient-reported outcome measures (PROMs) are widely recognized as important outcome measures for patient-centered care. We sought to summarize what is currently known about PROMs in urinary stone disease and to characterize use of PROMs in randomized controlled trials (RCTs) for nephrolithiasis. Materials and Methods: Health-related quality of life (HRQOL) in patients with nephrolithiasis is reviewed. A search of both MEDLINE and EMBASE databases for RCTs in nephrolithiasis was performed to assess utilization of PROMs in these trials. All searches were for articles published between 1990 and 2014. Two independent reviewers reviewed all abstracts to determine inclusion for full-text review, with disagreements reviewed by a separate arbitrator. Results: Validated methods for collecting PROMs include symptom diaries, pain scales, and validated HRQOL instruments. HRQOL is impacted in patients with nephrolithiasis and may be related to gender, proximity of a recent colic episode, or treatment modality. One validated instrument has been created in the nephrolithiasis population, while a treatment-specific questionnaire on ureteral stents has also been developed. PROMs are variably reported in RCTs for nephrolithiasis. Few trials utilize validated HRQOL instruments and none utilizes a disease-specific instrument. Conclusions: HRQOL is diminished in patients with urolithiasis, especially in times near to an acute stone event. Only one validated HRQOL instrument exists specific to nephrolithiasis. No validated instrument exists to assess the outcomes from different management options for renal and ureteral stones. Development of condition-specific PROMs instruments should aim to account for the heterogeneous and episodic nature of the disease and its treatment. Effective reporting of PROMs is lacking in the RCTs for nephrolithiasis. Future RCTs for urolithiasis standardize reporting of PROMs.