The Longitudinal Study of Teenagers with Endometriosis, Period and Pelvic Pain in Australia

LongSTEPPP tracks young people's development and trajectories of period and pelvic pain, and endometriosis with current gynaecological care. The study investigates multiple individual and family characteristics of each participant. By tracking participants over time, we can determine factors associated with pain, quality of life (QoL), mental health, and health utilisation.The study aims to establish a comprehensive national cohort of young people seeing a healthcare provider to manage period or pelvic pain or endometriosis, establish baseline characteristics and explore longer-term outcomes. The health care provider may be a general practitioner (GP), a federally funded Endometriosis and Pelvic Pain GP Clinic (EPPC), a gynaecologist or a paediatrician. This reflects the evolving landscape of service provision for these conditions.LongSTEPPP will commence in 2022 with a single cohort of young people aged 10 to 18 years. Participants will be invited from across Australia. Data will be collected annually. Study participants include the young person, and the parent/guardian.LongSTEPPP data will be linked to sources of administrative data including the Medical Benefits Schedule (MBS) and the Pharmaceutical Benefits Scheme (PBS).