Cystinuria is a rare cause of urolithiasis. Affected patients have an earlier onset and more aggressive disease than patients with other stone etiologies. We assessed the health-related quality of life (HRQOL) of cystine stone-forming patients using the disease-specific Wisconsin Stone Quality of Life (WISQOL) questionnaire.
Cystine patients treated in our stone clinics (n=12) completed the WISQOL questionnaire; information about medical and stone histories were gathered. Patients were matched with non-cystine stone formers (n=12) for gender, age, and comorbidities. Additionally, a second control group (n=90), also from our institution and consisting of mixed calcium stone formers, was included. WISQOL responses were compared between groups.
Cystine patients had significantly lower total WISQOL scores than non-cystine patients. Compared to non-cystine stone formers, cystine stone formers also had lower HRQOL scores for subscales (domains) related to social impact, emotional impact, disease impact, and vitality (P≤0.04 for all). On specific items, cystine patients reported significantly more sleep problems (P=0.02), more bother with nocturia (P=0.03), and feeling tired or fatigued (P=0.02). Among those with current stones, cystine patients scored lower than non-cystine patients for total score and in 2 of 4 domains.
Using a stone-specific questionnaire, patients with cystine stones have lower HRQOL compared to non-cystine stone formers. Identifying and addressing specific areas of decrement in patients with cystine stones may improve disease management and patients' HRQOL.
Journal of endourology. 2016 Oct 07 [Epub ahead of print]
Necole M Streeper, Margaret Wertheim, Stephen Y Nakada, Kristina L Penniston
University of Wisconsin School of Medicine and Public Health, Urology, Madison, Wisconsin, United States ; ., University of Wisconsin School of Medicine and Public Health, Urology, Madison, Wisconsin, United States ; ., University of Wisconsin School of Medicine and Public Health, Urology, Madison, Wisconsin, United States ; ., University of Wisconsin School of Medicine and Public Health, Urology, Madison, Wisconsin, United States ; .