What This Means
This research describes the development and validation of a new survey tool designed to assess the sexual and reproductive health (SRH) of adults living with spina bifida (SB), a condition affecting the spine that can impact many aspects of daily functioning. People with spina bifida often lack access to adequate sexual health education and face higher risks of unintended pregnancy, limited use of preventive healthcare, and vulnerability to abuse. Until now, no validated tool existed to systematically measure their sexual health knowledge, behaviors, and self-confidence in this area.
The research team created a 100-item survey covering five areas: sexual knowledge and education, sexual practices, sexual safety and risk, history of abuse, and self-efficacy (confidence in managing one's own sexual health). A panel of 22 national experts—including urologists, pediatricians, nurses, and other specialists—reviewed the survey over three rounds using a structured process called the modified Delphi method, refining questions until strong agreement was reached on clarity, relevance, and completeness. Five adults with spina bifida then tested the survey in interviews to confirm it was understandable and acceptable to the people it was designed to serve.
This research suggests that this new tool could help healthcare providers and researchers better understand and address the sexual and reproductive health needs of adults with spina bifida. By identifying gaps in knowledge, risky behaviors, or experiences of abuse, the survey could support more targeted education, counseling, and clinical care for this population that has historically been underserved in the area of sexual health.