Menstrual health of adolescents with Down syndrome in the UK

1. Katie Greenland (International Centre for Evidence in Disability, London School of Hygiene & Tropical Medicine)
2. Sarah Polack (International Centre for Evidence in Disability, London School of Hygiene & Tropical Medicine)
3. Jane Wilbur (International Centre for Evidence in Disability, London School of Hygiene & Tropical Medicine)

Correspondence: katie.greenland@lshtm.ac.uk

Limited available evidence indicates that people with Down syndrome (DS) faces unique challenges related to their menstrual health, including difficulties with self-care, the communication of needs, and access to appropriate menstrual materials and accessible information. The experiences of young people are significantly under-researched, yet an improved understanding of the menstrual health experiences of adolescents with DS is crucial for the development of tailored interventions to improve their wellbeing. This study aims to fill critical knowledge gaps, providing insights into the unique requirements and challenges faced by this population.

Guided by an Advisory Group of caregivers and young people with DS, this research employed a mixed-methods approach. A national online survey was conducted with 143 primary caregivers of adolescents aged 10–19 with DS to assess knowledge, preparedness, and concerns regarding menarche and ongoing menstrual management. In-depth interviews were held with six menstruating adolescents with DS (aged 13–19) using participatory methods to explore their personal knowledge, self-management, and emotional experiences. Interviews were also conducted with 11 mothers and 8 professionals, including teachers and healthcare providers, to contextualise adolescent perspectives and incorporate the experiences of those caring for young people with more complex needs. Data collection took place between September 2024 and July 2025.

Findings indicated that young people generally coped with the onset of periods better than their caregivers anticipated. However, the majority of survey respondents expressed ongoing concerns, particularly surrounding heavy periods (48%), management of period products and hygiene (45%), menstrual-related pain and discomfort (45%), and the communication of pain and discomfort (26%). The negative impact of periods on adolescent wellbeing was higher for those with greater support needs. Three-quarters of survey respondents whose daughters are menstruating expressed a need for further support, particularly resources designed for young people with DS, strategies to support independent management of periods, and information on managing pain. Interviews supported these quantitative findings, showing how the use of period underwear (or “magic pants”) simplified practical management and improved menstruation experiences for many young people. Interviews also reinforced the persistence and complexity of pain management and the need for accurate information to dispel myths and misinformation. The study identified significant unmet menstrual-related requirements and strategic opportunities for interventions.

Funding: Down’s Syndrome Research Foundation UK