Autosomal dominant PKD registry may help assess disease burden in patients with CKD
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Key takeaways:
- Of the included patients, 2.5% were on dialysis and 23% had a kidney transplant.
- Autosomal dominant PKD affects various aspects of patients’ health-related quality of life.
The autosomal dominant polycystic kidney disease registry may help assess various aspects of disease burden on patients’ health-related quality of life, according to published research.
The national patient registry is hosted online with multiple disease-specific patient reported outcomes modules to characterize the patient experience in the United States.
“Disease-associated pain, discomfort, fatigue, emotional distress and impaired mobility affect health-related quality of life (HRQoL),” Elise Hoover, MPH, of the PKD Foundation in Kansas City, Missouri, and researchers wrote. “In this analysis, we provide a deeper examination of participants’ self-reported HRQoL and assess [autosomal dominant polycystic kidney disease (ADPKD)]-HRQoL across different [chronic kidney disease] stages as well as in consideration of access to various elements of health care.”
Researchers had adults with a self-reported diagnosis of ADPKD complete a questionnaire that included demographics, comorbid conditions, current symptoms and kidney function. Participants completed subsequent modules at 3-month intervals, including two validated HRQoL tools, the ADPKD Pain and Discomfort Scale (ADPKD-PDS), ADPKD Impact Scale (ADPKD-IS) and Healthcare Access and Utilization. CKD stage was calculated using eGFR or creatinine.
Of the included participants, 2.5% were on dialysis and 23% had a kidney transplant. Overall, 1,086 participants completed at least one of the HRQoL modules and 319 completed four modules over a year.
Findings showed ADPKD affects various aspects of HRQoL, including pain, discomfort, fatigue, emotional distress and impaired mobility. Patients with CKD stages 4 to 5 had the dullest kidney pain, while sharp kidney pain was evenly distributed across early stages. Dull kidney pain had an impact on sleep regardless of CKD stage, the researchers noted.
There was also a strong positive tie between ADPKD-PDS and ADPKD-IS. Patients with neutral or positive HRQoL had less likely been denied imaging or other care.
“HRQoL tools in the ADPKD Registry provided a broad cross-sectional assessment in the U.S. and provided granular information on the burden of pain across the CKD spectrum in ADPKD,” Hoover and colleagues wrote. “The ADPKD Registry allowed assessment of ADPKD impact in a community that experiences decline in health and kidney function over decades.”
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