Study design, materials and methods
A cross-sectional online survey was distributed via social media and the Dutch Parkinson Patients association.
The survey included demographic questions and the International Consultation on Incontinence Questionnaire-Urinary Incontinence Short Form (ICIQ-UI SF) score between 0-21. The associated bother was scored on a 0-10 scale. The International Consultation on Overactive Bladder (ICIQ-OAB), with a score range of 0-16. Each item is accompanied by a bother question rated on a 0-10 scale. A bother score of ≥ 5 was defined as significant.
Self-reported LUTS was assessed with a single question: Do you experience bladder symptoms such as frequency, urgency, nocturia and/or urinary incontinence (UI), yes or no.
Only fully completed questionnaires were included in the analysis. Descriptive statistics were used, including percentages, mean, standard deviation, and median. A sample size of 379 was calculated based on an expected overall prevalence of LUTS of 75%.
Results
The survey was completed by 426 respondents, 256 men (55,4%) and 206 women (44,6%). The mean age was 69 years (±8,4) (Table 1).
The overall prevalence of LUTS was 77,3%. Median ICIQ-UI SF score was 9. UI before reaching the toilet was reported by 64,7% of respondents with 52,1% experiencing significant bother due to UI interfering with daily life.
The median ICIQ-OAB score was 7. Nocturia (>2 times per night) was reported by 76,2% of respondents, with 58% considering it a significant bother. Additionally, 75% of respondents reported a strong urge to rush to the toilet, of whom 68,9% experienced significant bother. UI before reaching the toilet occurred in 84,9% of respondents, with 64,4% reporting significant bother.
Interpretation of results
There is a high prevalence of self-reported LUTS in individuals with PD. Approximately 80% experience UI, which is significantly higher than the 20–40% prevalence(1) often cited in the PD population. This discrepancy suggests possible underrecognition or misclassification of LUTS in the PD population. It emphasizes the importance of discussing LUTS and specifically UI by health care professionals.
This survey highlights that rushing to reach the toilet and UI before reaching the toilet are the most prevalent and bothersome LUTS symptom in PD. These symptoms might be caused by i.e. motor (balance and gait disturbances) and non-motor symptoms (sleeping problems, tiredness). Furthermore PD patients have a higher risk of falls(2).
The International Prostate Symptom Score (IPSS) is frequently used to assess LUTS in PD. However, the IPSS does not capture OAB symptoms, lacks bother score for each symptom, and does not assess specific moments of UI. Therefore it might be more appropriate to use the ICIQ-UI SF and ICIQ-OAB.