Urinary symptoms, quality of life, and patient satisfaction in genetic and sporadic hereditary spastic paraplegia

J Neurol. 2019 Jan;266(1):207-211. doi: 10.1007/s00415-018-9129-8. Epub 2018 Nov 22.


Background: Urinary involvement is common in hereditary spastic paraplegias (HSPs), but has rarely been assessed systematically.

Methods: 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.

Results: 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.

Conclusion: Urinary complaints are common in HSP and should be addressed and treated.

Keywords: Bladder; Hereditary spastic paraplegia; International Consultation on Incontinence Questionnaire; Nocturia; Quality of life; SCOPA-AUT; SPG4; Satisfaction with care; Urgency; Urinary frequency; Urinary hesitancy; Urinary incontinence.

MeSH terms

  • Female
  • Humans
  • Male
  • Middle Aged
  • Patient Satisfaction*
  • Quality of Life*
  • Spastic Paraplegia, Hereditary / epidemiology
  • Spastic Paraplegia, Hereditary / physiopathology*
  • Spastic Paraplegia, Hereditary / psychology*
  • Spastic Paraplegia, Hereditary / therapy
  • Urologic Diseases / epidemiology
  • Urologic Diseases / physiopathology*
  • Urologic Diseases / psychology*
  • Urologic Diseases / therapy