Urinary symptoms, quality of life, and patient satisfaction in genetic and sporadic hereditary spastic paraplegia
- 144 Downloads
Urinary involvement is common in hereditary spastic paraplegias (HSPs), but has rarely been assessed systematically.
We characterized urinary complaints in 71 German HSP patients (mean age 55.4 ± 13.9 years; mean disease duration 20.7 ± 14.3 years; 48% SPG4-positive) using validated clinical rating scales (SCOPA-AUT, ICIQ-SF, ICIQ-LUTSqol). Treatment history and satisfaction with medical care was also assessed.
74.6% of patients had one or more urological problems, most commonly nocturia and urgency. Incontinence was more severe in women, correlating with SCOPA-AUT. Female gender and SPG4 mutations were associated with higher urinary frequency and severity of urological involvement. QoL was overall reduced, more in women and in SPG4 mutation carriers. Almost 90% consulted a medical specialist; more than half were largely satisfied. 43.4% received oral medication and 5.7% received intravesical botulinum toxin. However, more than one-third of patients remained untreated.
Urinary complaints are common in HSP and should be addressed and treated.
KeywordsHereditary spastic paraplegia Bladder SPG4 Satisfaction with care Urinary incontinence Nocturia Urgency Urinary frequency Urinary hesitancy SCOPA-AUT Quality of life International Consultation on Incontinence Questionnaire
We thank Rudolf Kleinsorge on behalf of the Förderverein für HSP-Forschung for help with patient recruitment. The study was awarded the Eugen Rehfisch Prize 2018. We thank Baccara Hizli for administrative assistance.
SAS: research project: conception, organization, execution; statistical analysis: review and critique; manuscript: writing of the first draft. VB: research project: organization ad execution; statistical analysis: execution; manuscript: review and critique. BM: statistical analysis: design, execution, review and critique; manuscript: review and critique. SK: manuscript: review and critique. GD: manuscript: review and critique.
Compliance with ethical standards
SAS was supported by the Else Kröner-Fresenius-Stiftung. GD has received lecture fees from Boston Scientific and has been serving as a consultant for Boston Scientific. He received royalties from Thieme publishers. He is a government employee and receives through his institution funding for his research from the German Research Council, the German Ministry of Education and Research, and Medtronic.
Conflicts of interest
On behalf of all authors, the corresponding author states that there is no conflict of interest.