Understanding urinary problems in Parkinson’s: the patient’s perspective
The takeaway
In a large survey by the Parkinson Alliance, 41% of the participating people with Parkinson’s reported that urinary symptoms impact on their quality of life, including day-to-day functions, engagement in public and social settings, and their mental health.
Why is it important?
This survey served to bring forward the voice of the community. It highlights urinary dysfunction as an important area of unmet need that warrants a holistic approach to its management due to its significant impact on emotional wellbeing and quality of life.
Background
It has long been recognized that Parkinson’s causes a range of challenging symptoms besides those affecting movement, collectively called non-motor symptoms, which include bladder problems. These are common in people with Parkinson’s. Although urinary dysfunction goes hand in hand with ageing, we know that by comparison to other older individuals, people with Parkinson’s tend to have more of these symptoms.
In an effort to understand their prevalence and effect on quality of life, the Parkinson Alliance reached out to 960 people with Parkinson’s based mostly in the US, who completed questionnaires on demographics, urinary symptoms and health-related quality of life.
The details
The participant pool in this large study had an average age of 71 years, and were on average 10 years since diagnosis. Between 86%-92% of participants reported that their most bothersome symptom was urinary urgency, followed by the need to urinate at night (nocturia) and urinate more often. These are collectively known as storage symptoms. In addition, 10% reported incontinence at least once per week, most frequently at times of urgency.
The study found that the impact of these symptoms is major. Many participants reported that their symptoms result in moderately to extremely altered interest in social activities (27%), embarrassment (34%) and isolation (22%). While 61% reported their quality of life was good or excellent, up to a quarter reported that they felt moderately to extremely depressed. 41% of participants reported that urinary dysfunction affected their quality of life, with 39% reporting that they take medications to manage it. However, half of the participants in this survey reported they had not had an assessment for these symptoms.
Next steps
The Parkinson Alliance recommends that people experiencing urinary symptoms should seek advice from a urologist who is familiar with Parkinson’s and who can work with their neurologist. Anxiety and depression should also be discussed with a neurologist, psychiatrist or psychologist familiar with Parkinson’s.
Related work and trials
https://www.movementdisorders.org/MDS-Files1/Resources/PDFs/md_article17.pdf
https://www.movementdisorders.org/MDS-Files1/Resources/Podcasts/ferreira_commentary.mp3
