Participate in Research: Using Patient Reported Outcome Measures (PROMs) to develop a snapshot of cleft outcomes in New Zealand

As part of our Cleft Research Centre at the University of Canterbury, we are using the CLEFT-Q patient reported outcome measures to develop a snapshot of how people affected by cleft in New Zealand feel about their speech, and overall wellbeing. We are using this information to understand what usually goes well for people with cleft as well as to recognise what people with cleft find more challenging and may benefit from additional support with. We will be able to compare information from New Zealand with information from Australia* and other parts of the world to see whether strengths and challenges for people with cleft in New Zealand are the same or different to other places. We will then use this knowledge to develop a set of recommendations to support people with cleft in New Zealand and Australia*.

If you are a person who was born with a cleft, are living in New Zealand, and are aged 12 or over (including adults), we would like to invite you to please complete our short online survey. The survey involves reading a series of patient reported outcome measure statements (PROMs) and selecting how much you agree or disagree with each one – for example “I like being with other people”. You can find more information about the research and complete the survey here.

If you have already been asked to complete the survey by your cleft team at a recent appointment, there is no need to complete the survey again.

As a thank you for your time, you will have the option to enter a monthly prize draw to win a $50 gift voucher.

This study has been approved in New Zealand by the Health and Disability Ethics Committee (HDEC) and the University of Canterbury Human Research Ethics Committee (HREC).

If you have any questions about the research, please email kenny.ardouin@pg.canterbury.ac.nz.

*As part of this study, we are also currently seeking ethical approval from the Sydney Children’s Hospital Network Human Research Ethics Committee (SCHN HREC) to collect data from some parts of Australia (at this stage, Sydney and surrounding areas) to offer a comparison between Australia and New Zealand, and of Australasia with the rest of the world. Once ethical approval to commence in Australia has been received, eligible Australian participants will be contacted directly by mail or email via their cleft team with information on how to participate in the study.