Ellison JS et al, 2017: Patient-Reported Outcomes in Nephrolithiasis: Can We Do Better?
Ellison JS, Williams M, Keeley FX Jr.
Division of Pediatric Urology, Seattle Children's Hospital, University of Washington, Seattle, Washington.
Department of Urology, Bristol Urological Institute , Southmead Hospital, Bristol, United Kingdom.
Abstract
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.
J Endourol. 2017 Nov 10. doi: 10.1089/end.2017.0241. [Epub ahead of print]
Comments 1
This article describes and discusses patient reported experience of stone problems and stone treatment.
The importance of this aspect is obvious inasmuch as patients might have symptoms caused by the treatment itself, by residuals or just being worried about suffering from a disease with a definite risk of new stone formation even though they currently might be asymptomatic.
Although it is stated that the choice of medical and/or surgical treatment is the result of patient’s preference, this is most certainly a truth with modification. In many cases it is my own feeling that the patient’s preference is a direct reflection of the preference presented by the treating urologist/nephrologist.
To include QoL-recording is today a fundamental part of patient care inasmuch as SFR not necessarily is associated with high QoL or vice versa.
The basic recommendation given by the authors are:
a. to use pain-scales to monitor success
b. to use standardized HRQoL instruments (and there seems to be only one high quality validated instrument for this purpose; the Wisconsin Stone QOL questionnaire)
c. to further refine PROMs (patient reported outcome measures) in order to better draw conclusions on treatment alternatives in a wide context.