Overview

Led by researchers at Murdoch Children’s Research Institute, the LongSTEPPP project aims to find out how we can best care for young people experiencing period pain, pelvic pain, or who may have suspected or confirmed endometriosis.

LongSTEPPP stands for the Longitudinal Study of Teenagers with Endometriosis, Period and Pelvic Pain in Australia. It is a five-year study that runs from 2022-2027. 

Most young people who have periods will experience some pain. For some people, this is manageable and will not change normal day-to-day activities. For others, the pain they experience will stop them from doing everyday activities and may impact their quality of life and mental health.

Information for participants

The LongSTEPPP project asks you and your parent/guardian to complete annual questionnaires (about periods, pain, quality of life and mental health) which take about an hour per year, done online at your own pace. Young people don’t see how their parent answers and vice versa.

Your experience could help us work out the best way to care for young people with period pain, pelvic pain, or endometriosis. 

The LongSTEPPP project is led by the Murdoch Children’s Research Institute and combines yearly questionnaires with information collected by other services. 

Who can take part?

You are eligible to join our study if:

• you are aged 10 to 18 years,
• you have been referred to a Gynaecologist (Women's health doctor) for period pain, pelvic pain, or have suspected or confirmed endometriosis,
• you live in Australia, and
• both you and your parent/guardian are willing to take part.

Who cannot take part?

You cannot take part in this study if:

• You’re unable to read and understand English.
• You can’t complete the questionnaires online.
• Your parent/guardian doesn’t want to be involved.

What will I do?

For the young person enrolling in LongSTEPPP you will be asked to:

• Complete up to eight questionnaires in the first year.
• Complete between six to seven questionnaires yearly for up to five years or until the end of 2027.

Please note: These questionnaires will take approximately one hour of your time per year.

For the parent/guardian of the young person you will be asked to:

• Complete three questionnaires yearly.

Please note: These questionnaires will take approximately 20-30 minutes of your time per year.

Optionally, young people and their female parent/guardian enrolling at some sites (Melbourne, Sydney, Brisbane) can take part in pressure testing that provides an indication of pain thresholds. This will be discussed at your initial appointment.

Get involved

Thanks for taking the first step in considering LongSTEPPP. To see if you’re eligible, please answer a few short questions on our LongSTEPPP Pre-Screening questionnaire below.

Complete our Pre-Screening questionnaire

Research team

Positions Available

We are currently recruiting students with a background in psychology who wish to undertake postgraduate research into mental health trajectories in young people with period, pelvic pain and endometriosis. Interested applications, please contact us using the details below.

Funders

The work of this team is supported by a grant for the Medical Research Future Fund (MRFF).

Collaborators

Services working with LongSTEPPP

• Deakin University - Professor Catherine Bennett and Dr Julie Abimanyi-Ochom
• Orygen - Professor Andrew Chanen