A survey of knowledge, experiences, and quality of life impacts related to urinary tract infections among people with neurogenic bladder

Background: Urinary tract infections (UTI) are common complications in people with neurogenic bladder (NB). Limited data exist on UTI-related knowledge, experiences, and quality of life (QoL) impacts in this population. Methods: We mailed surveys to 289 Veterans with NB due to spinal cord injury/disorder (SCI/D), multiple sclerosis, or Parkinson’s Disease who had a UTI diagnosis at four Veterans Affairs Medical Centers between May 2022-May 2023. The survey was adapted from existing instruments and previously collected qualitative data and assessed patient knowledge and experiences with UTI and QoL impacts. Descriptive statistics summarized responses and scaled QoL scores were calculated, with higher scores indicating greater negative impact. Results: Most respondents (n = 71) were older (mean age = 69), had SCI/D (77%), and used urinary catheters (77%). Over a third had misperceptions about antibiotic risks and the significance of a positive urine culture or bacteriuria for diagnosing UTI. 18% wanted more information about UTIs, with most preferring written materials (77%) or information at healthcare provider visits (62%). The strongest QoL impacts were on daily activities, with many respondents indicating UTIs affect diet (50%), travel (53%), and sex life (60%). Mean [standard deviation (SD)] scaled QoL score was 40.8 (15.3) out of a maximum of 75, with ≥ 3 UTIs in the prior year associated with higher scores (p = 0.02). Conclusions: People with NB may have misperceptions about UTI diagnosis and antibiotic risks, and experience substantial QoL impacts from UTIs. Provider encounters for suspected UTI may be good opportunities for delivering written education and assessing QoL impacts.