Adult Bladder and Quality of Life Evaluation in Spina Bifida

Condition(s) studied

Study summary

Spina bifida (SB) is a birth defect that affects the spine, often causing paralysis in the legs and problems with bladder and bowel control. Managing these bladder issues is important, but different methods, like using a catheter or surgery, can impact a person's quality of life. This study looks at how different bladder management methods affect the quality of life for young people with SB. Researchers will ask people with SB to complete a survey about how they manage their bladder and how it impacts their daily lives. The main goal is to find out if certain bladder management methods are associated with a better quality of life. This information could help doctors make better treatment decisions and counsel young people living with SB.

Eligibility

Primary outcome measure(s)

• QUAlity of Life Assessment in Spina bifida (bladder and bowel quality of life domain) — At the time of enrollment
  The QUALAS is a validated quality of life measure for teens and adults with spina bifida. It is scored from 0-100, with a higher score meaning better QOL

Trial sites (1)