Human papillomavirus awareness and prevention practices among patients with Mayer–Rokitansky–Küster–Hauser syndrome after neovagina reconstruction: a cross-sectional study

Abstract Background Patients with Mayer–Rokitansky–Küster–Hauser syndrome (MRKH) who undergo neovagina reconstruction remain at risk of Human papillomavirus infection (HPV), yet evidence regarding their awareness of HPV-related health risks and engagement in preventive behaviours is limited. This study aimed to assess HPV-related awareness, preventive practices and behavioural factors among Chinese patients with MRKH syndrome after neovagina reconstruction, and to describe HPV screening and vaccination uptake in this population. Methods A cross-sectional questionnaire-based study was conducted at a tertiary referral hospital in Beijing, China. A total of 157 patients with MRKH syndrome who had undergone neovagina reconstruction completed validated questionnaires assessing HPV awareness, preventive practices and behavioural factors. In addition, outpatient clinical records of 1,756 patients with MRKH syndrome attending specialist care between 2012 and 2024 were retrospectively reviewed to obtain information on HPV testing and ThinPrep cytologic test (TCT) results where available. Descriptive statistical analyses were performed to summarise awareness levels, behavioural characteristics and preventive practice uptake. Results Most participants demonstrated relatively high awareness of HPV-related health risks: 82.8% recognised their susceptibility to HPV infection and 75.8% expressed support for HPV vaccination. However, preventive practices remained limited. Only 11.5% of participants reported having undergone HPV screening, and 18.5% had received HPV vaccination, indicating a substantial gap between awareness and preventive action. Engagement with routine gynaecological follow-up was generally low. Among those who underwent HPV testing, HPV positivity was detected in a small proportion of patients, with observed rates ranging from 7.4% to 11.1%. Conclusions Despite relatively high awareness of HPV and its prevention, Chinese patients with MRKH syndrome after neovagina reconstruction showed markedly low uptake of HPV vaccination and limited engagement with HPV testing. These findings highlight an unmet need for accessible HPV vaccination, neovaginal HPV risk education, and tailored sexual health education for this rare and underserved population. Further research is warranted to identify barriers to preventive care and to develop effective interventions to improve HPV prevention practices among women with MRKH syndrome.