Autosomal dominant polycystic kidney disease impacts adolescents physically, emotionally
Adolescents with autosomal dominant polycystic kidney disease report feeling physically, socially and emotionally impacted by their disease, according to data published in Kidney Medicine.
“With this project we wanted to give voice to adolescent patients with autosomal dominant polycystic kidney disease (ADPKD) – to hear directly from them what symptoms they experience, how they themselves are impacted by the disease, but also how they are impacted by growing up in a family where other members suffer from ADPKD,” Dorothee Oberdhan, MS, director of patient-centric outcomes at Otsuka Pharmaceutical Development and Commercialization Inc., told Healio.
In an observational qualitative study, Oberdhan and colleagues interviewed 33 participants with ADPKD (mean age was 14.6 years; 42.4% were girls) from 13 countries to determine their experiences of ADPKD-related symptoms and physical, social and emotional impacts. The interviews were semi-structured and based off prior findings on ADPKD impacts on adults.
Researchers calculated symptom and impact frequencies from the interviews, then collected supporting quotes.
“We were surprised to find that substantial proportions of adolescents reported symptoms, including pain (64%), abnormal feelings of fullness (30%) and urinary symptoms (52%), such as urinary frequency and urgency,” Oberdhan told Healio. “The pain reported by some of these kids also wasn’t benign but of the type that required repeated interventions and with large impacts on patients’ quality of life.”
For example, 30.3% of interviewees said they avoided sports and 18.2% reported missing school and social activities. Similarly, 18.2% participants reported feeling worried, 12.1% reported feeling sad and 9.1% reported feeling frustrated about the disease and their future. Regarding health, 21.2% said they were affected by dietary limitations.
According to the researchers, limitations of the study included a small sample size and lack of focus groups due to parental preferences.
“While ADPKD is, for the most part, a silent disease in early stages, a subset of patients does have more aggressive disease with rapid progression. These adolescent patients with ADPKD experience a range of symptoms even early on. Specifically, hypertension, pain and urinary complications, like urgency. We know from research in the adult population that these symptoms are predictors of worse outcomes. Most children with ADPKD don’t get diagnosed for various reasons,” Oberdhan told Healio. “Currently, clinical practice is to take a wait-and-see approach, monitor blood pressure and treat symptoms as needed. As a result, we might catch disease progression later than necessary and not be able to utilize the best tools available to help patients manage their disease. Adolescents with ADPKD might also benefit from more support when it comes to pain management, psychological well-being and development of helpful lifestyle habits.”
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