Longitudinal Study of Teenagers with Endometriosis, Period and Pelvic Pain in Australia (LongSTEPPP)

Abstract

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 for each participant. By tracking participants over time, we will be able to 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 health care provider, for the management of period or pelvic pain or endometriosis, establishing baseline characteristics and exploring 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 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 female parent/guardian. LongSTEPPP data will be linked to sources of administrative data including the Medical Benefits Schedule (MBS) and the Pharmaceutical Benefits Schedule (PBS).