Autosomal dominant polycystic kidney disease (ADPKD) is the most common inherited kidney disorder, and is estimated to be diagnosed in nearly 4 of every 10,000 individuals. It appears as cysts that grow on and around the kidneys, which negatively affect the kidneys over time.

While various studies exist involving adults living with ADPKD, there is little data on the side effects and impact on adolescent patients. Learn more about the findings from one study on adolescents’ experience living with ADPKD.* 

What they did

The observational, qualitative study was led by Dorothee Oberdhan, M.S. of Otsuka Pharmaceutical Development & Commercialization. Oberdhan and her colleagues recruited 33 adolescents between the ages of 12 and 17 with a diagnosis of ADPKD, or who were under the care of a physician for suspected ADPKD. Participants were from 13 countries across Asia, Europe, North America, and South America. The researchers interviewed all participants and analyzed their experience regarding:

• ADPKD symptoms, 
• Impacts on daily life, and 
• Specific emotional and social issues that they faced.

What they found

After interviews were transcribed and analyzed to identify common themes, researchers found a number of similarities among the 33 participants. 

Concerning symptoms, the results showed that:

• 21 participants (63.6%) reported some type of pain attributed to ADPKD, with back pain/aches and kidney pain being most common
• 17 participants (51.5%) reported urinary issues, with urinary urgency being the most common problem
• 10 participants (30.3%) reported a decrease in appetite related to a feeling of fullness or not feeling hungry

Physical, social, and emotional impacts from ADPKD were also discovered. The common findings included:

• 10 participants (30.3%) avoided physical activity and certain sports due to ADPKD
• 7 participants (21.2%) were bothered or impacted by dietary limitations, specifically the need to reduce salt intake and increase water intake
• 6 participants (18.2%) reported not being able or willing to engage in certain activities with friends. Some reported that they feared being teased or feeling different among peers. 

While ADPKD had an impact on some participants, the majority said they had adapted to living with the condition, which is a progressive and long-term disease. Moreover, most did not report experiencing emotional concerns regularly, but admitted to feeling more worried after medical check-ups. 

What it means

According to the research team, the findings from this small study are similar to what adult ADPKD patients experience, and provide a foundation for further research. They hope that more studies, with a larger sample size, will support their findings and better address the needs of adolescents living with ADPKD. 

*Socha, V. (2022, June 22). Symptoms and Impacts of ADPKD on Adolescent Patients. Nephrology Times. https://www.docwirenews.com/nephtimes/nephtimes-diseases-and-conditions/adpkd/symptoms-and-impacts-of-adpkd-on-adolescent-patients/