, Volume 42, Issue 1, pp 53–60 | Cite as

Health-related quality of life (HRQoL) in cystine compared with non-cystine stone formers

  • Frank Modersitzki
  • Laura Pizzi
  • Michael Grasso
  • David S. Goldfarb
Original Paper


Cystinuria is a genetic cause of recurrent kidney stones which may be more recurrent and larger than more common non-cystine stones. They may have a greater impact on health-related quality of life (HRQoL). We measured this impact by surveying HRQoL in patients with stones, comparing non-cystine stone formers (NCSF) to cystine stone formers (CYSF) and both groups to normative values of the US population. We used SF-36v2 via an internet instrument. CYSF patients were recruited via cystinuria-related websites, two patient advocacy groups, and an active endourology practice. NCSF patients were recruited from the same practice and by email. Total n surveyed with scorable data: 214 CYSF and 81 NCSF. The participants included 128 men and 161 women. The group of CYSF were significantly younger (39 vs. 54 years) and suffered longer from kidney stones (255 vs. 136 months). CYSF patients had significantly more episodes of stones than NCSF patients in the last year (N = 108 CYSF, N = 20 NCSF). More frequent stones in the last year and mental comorbidities most often predicted worse scores in the individual HRQoL domains. However, cystine stone composition was a significant predictor of worse scores only for role emotional. Better scores in all SF-36 domains were associated with greater time since the last kidney stone event. Although kidney stones are often transient, kidney stone formers, regardless of stone composition, have a worse HRQoL than the standard US population, which has a normative score of 50, such as general health (41.2 ± 12.8), bodily pain (46.5 ± 11.8) and mental health (45.1 ± 12.6). CYSF are more frequent and severe stone formers compared with NCSF with a resulting greater, direct impact on the HRQoL of CYSF patients. Whether preventive strategies for cystinuria are being properly utilized by practitioners, and which strategies are most effective, should be established.


Calcium Calculi Renal Kidney stones Cystinuria Nephrolithiasis Urolithiasis 



We appreciate a thorough reading of the manuscript by John C. Lieske MD. This study was funded in part by the Susan Schott Research Fund. This work was also generously supported by the Rare Kidney Stone Consortium, a part of NIH Rare Diseases Clinical Research Network (RDCRN). Funding was provided by grant 1U54DK083908-01 from the NIDDK and the Office of Rare Diseases Research (ORDR), part of the National Center for Advancing Translational Sciences (NCATS). The views expressed in written materials or publications do not necessarily reflect the official policies of the Department of Health and Human Services; nor does mention by trade names, commercial practices, or organizations imply endorsement by the US Government.

Conflict of interest

F. Modersitzki has no conflict of interest; L. Pizzi has no conflict of interest; M. Grasso is a consultant for Karl Storz Endoscopy; D.S. Goldfarb is a consultant for Takeda and Astra Zeneca, is owner of Ravine Group and received honoraria from Mission Pharmacal.


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Copyright information

© Springer-Verlag Berlin Heidelberg (outside the USA) 2013

Authors and Affiliations

  • Frank Modersitzki
    • 1
  • Laura Pizzi
    • 2
  • Michael Grasso
    • 3
  • David S. Goldfarb
    • 1
    • 3
  1. 1.Kidney Stone Prevention Programs, Nephrology Section/111G, DVAMCNew York Harbor VA Medical Center and NYU School of MedicineNew YorkUSA
  2. 2.School of Health Policy, Jefferson Medical CollegePhiladelphiaUSA
  3. 3.Endourology SectionLenox Hill HospitalNew YorkUSA

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