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Abstract: SA-PO308

Assessment of Health-Related Quality of Life in Primary Hyperoxaluria

Session Information

Category: Bone and Mineral Metabolism

  • 502 Bone and Mineral Metabolism: Clinical


  • Modersitzki, Frank, New York University Grossman School of Medicine, New York, New York, United States
  • Banks, Carly, Mayo Clinic Minnesota, Rochester, Minnesota, United States
  • Hollander, Kim, Oxalosis and Hyperoxaluria Foundation, New York, New York, United States
  • Lieske, John C., Mayo Clinic Minnesota, Rochester, Minnesota, United States

Primary hyperoxaluria (PH) is a rare monogenic disorder; all 3 known forms are associated with frequent kidney stone events and a risk for chronic kidney disease. Here we assessed patient quality of life (QoL) metrics.


PH patients (pt) and caregivers were recruited by the Oxalosis and Hyperoxlauria Foundation. QoL was measured via disease specific questions plus validated instruments.


Both PH pt (n=25) and caregivers (n=21) participated. The majority of PH cases were diagnosed as a child. The cohort included all 3 types (20 PH1, 15 PH2, 12 PH3). The majority (78%) of pt were diagnosed by genetic testing, 9% by liver biopsy, and in 13% pt did not know. Most pt (49%) formed their first stone as an infant or toddler, 23% as a preschool or school-age child, and 11% as teenagers. Only 4% formed their first stone as adults, and 13% never had a kidney stone. The main PH health concerns are shown in graph 1.
Other significant health burdens are chronic kidney disease and fatigue. Adult pt see kidney stones as troubling compared to parents and caregivers (p=0.03). Socializing and traveling (34%, 10 adults, 6 children), attending school or work (23%, 4 adults, 7 children), and participating in sports (21%, 6 adults, 4 children) were the most impacted activities of daily life in our sample. Anxiety regarding recurrent stone events and future kidney failure was high among all 3 PH types.

PH 3 pt scored highest (least impacted) in all QoL domains, followed by PH 2 with the lowest scores for PH1.


Depression, anxiety, bodily pain, kidney stones and CKD are important QoL factors regardless of the underlying PH cause. These patient reported outcomes can be used to guide future treatment targets.

Sample characteristics
Living with PH1014125
Parent or caregiver138021