Mrs Katherine Swinburn1,2,10, Ms Pam Rogers10, A/Prof Hayley Smithers Sheedy1,2, Dr Antonia Shand2,8, Dr Tanya Tripathi3,4, Dr Natalia Rode3, Ms Emma Waight1,2, Prof William Rawlinson6,7, A/Prof Valerie Sung3,4,9, Prof Lisa Hui3,4,5
1Cerebral Palsy Alliance Research Institute, Sydney, Australia, 2University of Sydney, Camperdown, Australia, 3The University of Melbourne, Melbourne, Australia, 4Murdoch Children's Research Institute, Melbourne, Australia, 5Mercy Health, Melbourne, Australia, 6NSW Health Pathology, Sydney, Australia, 7University of New South Wales, Sydney, Australia, 8Royal Hospital for Women, Sydney, Australia, 9The Royal Children's Hospital, Melbourne, Australia, 10CP Quest, Canberra, Australia
Biography:
Kath Swinburn is a researcher at Cerebral Palsy Alliance, The University of Sydney. She has over 20 years of clinical and research experience in neurodevelopmental disability with a focus on cerebral palsy, CMV and consumer engagement in research.
Abstract
Background: Cytomegalovirus (CMV) is the leading infectious cause of newborn disability including hearing loss and cerebral palsy. Despite national recommendations to inform all pregnant women about CMV prevention measures, < 10% of maternity health professionals routinely counsel patients, and < 20% of pregnant women know how to reduce their risk of infection.
Methods: Here we describe policy, intervention and community strategies implemented to promote uptake of national congenital CMV prevention guidelines.
Results: Policy: clinical standards for CMV diagnosis, prevention and therapy have been established in international, national and state CMV prevention policy and guidelines. Intervention: education has been provided through lectures in primary health networks, national/international conferences and accredited CMV e-learning programs for midwives, GPs and obstetricians. We have undertaken qualitative research to understand the journey of women with suspected CMV during pregnancy to inform a new pilot evaluation of a maternal CMV serological screening program in the first trimester. Community: partnering with families impacted by congenital CMV, information resources on both antenatal CMV prevention and postnatal management of CMV have been developed. CMV Awareness Month media campaigns have achieved >100 pieces of media coverage annually with a reach of 14.1 million people. A biannual CMV symposium now brings consumers and researchers together to continue this work.
Conclusion: CMV is a common and potentially preventable cause of hearing loss and neurodevelopmental disability. Collaborations between families, clinicians, researchers, health services, maternal and newborn screening programs are essential to drive translation of the congenital CMV prevention guidelines to improve health outcomes.