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Kidney Week

Abstract: TH-PO1092

Longitudinal Assessment of Health-Related Quality of Life (HRQoL) in Rare Kidney Stone Formers (RKSF)

Session Information

Category: Mineral Disease

  • 1204 Mineral Disease: Nephrolithiasis


  • Modersitzki, Frank, New York University School of Medicine, New York, Alabama, United States
  • McIntosh, Mary I., Mayo Clinic, Rochester, Minnesota, United States
  • Goldfarb, David S., New York Harbor VAMC, New York, New York, United States

Group or Team Name

  • Rare Kidney Stone Consortium

The assessment of HRQoL in RKSF is important for following disease course and evaluating treatment. Previously, using a non-disease specific instrument we showed that RKSF present differently, with the worst domain scores in cystinuria. These are the first follow-up data based on summary scores for adults in a cross-sectional comparison.


RKSF were enrolled from 4 RKSC registries: primary hyperoxaluria, cystinuria, Dent disease and APRTd. HRQoL is measured with the generic non-disease specific SF-36v2. Results are norm-based scores (NBS) based on US Standard Population (Domain score mean = 50). Group means < 47 indicate the presence of impaired functioning in associated dimension.


We scored 545 surveys of the adult population at different time points, adjusted for the last stone event and compared the Physical and Mental Component Scores (PCS and MCS). We found the lowest PCS in Dent, and the highest in PH. The lowest MCS was found in cystinuria, the highest was found in PH. Low PCS indicate restrictions in self-care, physical, social and role activities; bodily pain, tiredness and poor rated health. Low MCS are associated with frequent psychological distress, social and role disability due to emotional problems, and poor rated health. Participants with cystinuria reported more stone events with related procedures than other RKSF (Χ2 (9) 23.375, p=.005).


HRQoL in RKSF is influenced by stone events and can be assessed with a non-disease specific SF-36v2. Adjusting for time between the survey and last event allows for the interpretation of more meaningful HRQoL profiles. The time from the last stone event and related procedures affect HRQOL in RKSF significantly.

  Stone Event Groups
  < 30 days31 - 365 days> 366 daysnever
CystinuriaPCS42 (9.2), 60*47 (8.8), 8953 (8.0), 10550 (8.0), 4
MCS36 (13), 6036 (13), 6051 (10.6), 10552 (8.5), 5
PHPCS47 (13.0), 649 (8.5), 5351 (8.7), 13555 (5.0), 8
MCS45 (12.3), 651 (8.6), 5352 (8.3), 13554 (8.5), 8
DentPCS41 (2.7), 246 (12.2), 553 (7.4), 2648 (12.5), 16
MCS46 (16.0), 247 (12.0), 550 (10.4), 2647 (8.9), 16
APRTdPCS46 (1.5), 3 51 (9.1), 1649 (8.8), 14
MCS41 (13.0), 3 52 (8.7), 1649 (9.3), 14

*mean (SD), N


  • NIDDK Support