New Validated Tool Assesses ADPKD Pain

Editor’s Note: We believe that patients are a key part of developing and leading the conversation in disease communities. Patient Worthy sometimes partners with reputable agencies that wish to speak with patients about opportunities related to their diagnosed conditions. These opportunities can include activities such as sharing stories with other patients or health professionals about their diagnosis journey or recording video testimonials. To learn more about how to get involved with an opportunity for autosomal dominant polycystic kidney disease (ADPKD) patients, click here.

In 2021, pain was defined as a core outcome for patients with autosomal dominant polycystic kidney disease (ADPKD). During the Polycystic Kidney Disease Regulatory Summit, researchers and patients alike discussed pain in relationship to the ADPKD experience. How could it be further examined, explored, and combatted? According to Healio, a team of researchers developed the first validated tool to identify and analyze disease-specific patient-reported ADPKD pain data. 

The team discusses the tool—called the Autosomal Dominant Polycystic Kidney Disease Pain and Discomfort Scale, or ADPKD-PDS— in an article published within the Clinical Journal of the American Society of Nephrology (CJASN). To develop the ADPKD-PDS, the research team first evaluated current literature on ADPKD and its impact. Next, researchers spoke with specialists; they then combined all of the data, created initial assessments, and presented it to 293 people living with ADPKD. 

After further refining, testing, and validating, the ADPKD-PDS was completed. It contains 20 items assessing pain severity and how the pain interferes with daily life over a week-long period.

Autosomal Dominant Polycystic Kidney Disease (ADPKD): An Overview

Polycystic kidney disease (PKD) is a genetic disorder in which many cysts grow on the kidneys, causing damage and function loss. Autosomal dominant polycystic kidney disease (ADPKD) is the most common form of PKD. It is inherited in an autosomal dominant fashion, meaning someone must inherit just one defective PKD1 or PKD2 gene to have this condition. Symptoms typically manifest between ages 30-50, though they can appear earlier in life. These symptoms can, but do not always, include:

  • Kidney cysts
  • Liver and/or pancreatic cysts
  • Headaches
  • High blood pressure 
  • Kidney stones
  • Hematuria (blood in the urine)
  • A feeling of fullness
  • Kidney or urinary tract infections
  • Abdominal distention
  • Pain in the back, sides, and between the ribs and hips 
  • Fluttering or pounding feeling in the chest
  • Brain aneurysms 

Treatment typically focuses on symptom management. Options include lifestyle changes, antibiotics, blood pressure and pain medications, surgery, dialysis, or kidney transplants. 

Editor’s Note: We believe that patients are a key part of developing and leading the conversation in disease communities. Patient Worthy sometimes partners with reputable agencies that wish to speak with patients about opportunities related to their diagnosed conditions. These opportunities can include activities such as sharing stories with other patients or health professionals about their diagnosis journey or recording video testimonials. To learn more about how to get involved with an opportunity for autosomal dominant polycystic kidney disease (ADPKD) patients, click here.

Jessica Lynn

Jessica Lynn

Jessica Lynn has an educational background in writing and marketing. She firmly believes in the power of writing in amplifying voices, and looks forward to doing so for the rare disease community.

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