PĒPI ARC Study

The PĒPI ARC hub will incorporate a multidisciplinary face-to-face clinic and telehealth, to enable flexible access to Cerebral Palsy (CP) screening for pēpi and their whānau, and support for clinicians. The aim is to diagnose infants with CP as early as possible, enabling pathways to earlier specific interventions, surveillance of medical complications and emotional and practical support for whānau.

PĒPI ARC stands for Partnering Early to Provide for Infants At risk of Cerebral palsy. CP is the most common disability in childhood. In New Zealand (NZ), it is estimated a baby with CP is born every 3 days. CP is caused by abnormal development of the brain, or damage to the developing brain most often occurring during pregnancy, birth or soon after birth.

We know that babies born very premature (< 30 weeks gestational age), very small (< 1000g or < 3rd centile for gestational age) or whom were very unwell early in life and needed admission to a neonatal intensive care unit (NICU) have a higher risk of neurodevelopmental impairment, including CP.

Infants are now able to be diagnosed with CP or be identified as having high-risk of CP as early as 3 months of age through the combination of three evidence-based diagnostic tools: General Movements Assessments (GMA - assessment of babies’ movements), Hammersmith Infants Neurological Examination (HINE - standardised neurological assessment), and brain imaging.

However, a large gap exists between the evidence-based practice recommendations and the clinical reality in NZ. At the moment less than 40% of children with CP are diagnosed before 12 months of age, with the average age being 19 months.

THE PĒPI ARC study is trying to find out if an early diagnosis Hub can increase equity in accessing CP screening for high-risk babies admitted to the Wellington NICU, no matter if they live in Wellington or another region. We also want to know if we can reduce the age at CP diagnosis, if we can improve how a diagnosis of CP or high-risk of CP is communicated with whānau, and if whānau and clinicians find the PEPI ARC hub helpful, easy to access and culturally welcoming.

The PĒPI ARC team is in the processes of seeking consultation and feedback from whānau with experience from NICU and neurodevelopmental follow-up, including early CP screening and diagnosis, and from local and regional paediatricians, therapists and other healthcare workers involved in early follow-up of high risk babies.

Investigators

Dr Angelica Allermo Fletcher
Dr Sian Williams
Dr Gaela Kilgour
Dr Stephanie Swallow
Sally Kidd
Alison Sheppard
Wyllis Korent
Dr Sue Stott
Dr Malcolm Battin

If you have any feedback or would like to be involved in any way, please contact:

Dr Angelica Allermo Fletcher, Neonatologists, Wellington NICU: angelica.allermofletcher@ccdhb.org.nz

Or

Dr Sian Williams, Liggins Institute Aotearoa Fellow: sian.williams@auckland.ac.nz