Development and content validation of a survey assessing domains of sexual and reproductive health in adults with spina bifida

PurposeIndividuals with spina bifida (SB) often face substantial gaps in sexual and reproductive health (SRH) knowledge leading to low use of contraception, poor utilization of preventative sexual health care, unintended pregnancies, missed opportunities to pursue their SRH goals, and increased risk of abuse and coercion. Validated questionnaires are needed to reliably test and track the SRH and self-efficacy of adults with SB. This study aimed to develop a survey with content validity to assess five SRH domains in adults with SB.MethodsAn initial survey was informed by a targeted literature review as well as stakeholder and expert opinions. Social cognitive theory's self-efficacy concept, known for its predictive power in behavior change among those with physical disabilities, guided its development. The survey items were iteratively reviewed online by national sexual health experts using a modified Delphi method, assessing item clarity, relevance, and comprehensiveness. Then, cognitive interviews of the refined instrument were conducted with five adults with SB to analyze acceptance and understanding.ResultsOf the 26 potential panel members invited to participate, 22 (85%) responded and agreed to participate. There were seven urologists (two adult, five pediatric), six developmental pediatricians, six registered nurses from SB clinics, two physiatrists, and one medicine-pediatrics trained internist. Consensus was achieved after three rounds for 100 survey items. Following each round, items were refined through researcher consensus until the content validity index was met (agreement = 0.8-1.0) for each question, ensuring all domains were adequately represented. These domains included sexual knowledge/education, sexual practice, sexual safety/risk profile, history of abuse, and perceived self-efficacy.ConclusionContent validity, clarity, and functionality of a novel survey that probes five domains of SRH in adults with SB was established. The survey can be utilized in both research and clinical settings to assess baseline SRH knowledge, identify risky behaviors, and screen for sexual abuse.