Partnering Early to Provide for Infants At Risk of Cerebral palsy (PEPI ARC)

The PEPI ARC seeks to be a central hub for information sharing and education around assessments for early detection of cerebral palsy (CP) and diagnosis. The PEPI ARC Hub will be delivered using two components: a community based, multidisciplinary face-to-face diagnostic clinic in Wellington, and a virtual hub to support regional CP-specific neurodevelopmental follow up, education and information sharing and foster relationships between the Wellington team, local community and regional Child Development Service (CDS) and paediatricians. All infants enrolled in PEPI ARC will receive standard care while admitted to the Neonatal Intensive Care Unit (NICU) in Wellington. In addition, whanau will be provided with a neonatal ‘passport’ to help improve information sharing between families and health care providers during transition of care from NICU to regional centres and follow-up services, and to standardise the use of CP diagnostic tests. Face to face clinic: Will be offered to whanau living in the Wellington region for medical, growth and neurodevelopmental assessments between 12-16 weeks corrected gestational age (CGA). This will replace the appointment the infant would have with their neonatologist at this age. Clinic appointments will take place in a community setting and will last for approximately 90 minutes. The multidisciplinary team (MDT) will consist of a neonatologist or developmental paediatrician trained in General Movement Assessment (GMA), a therapist trained in GMA and Hammersmith Infant Neurological Examination (HINE), a social worker and a clinic nurse. Infants may also be able to access Speech and Language Therapist (SLT)/dietician assessments if clinically indicated. If a whanau would like to attend the clinic but are unable to; the PEPI ARC team will offer an MDT assessment using telehealth in conjunction with a home visit from their Visiting Neurodevelopmental Therapist (VNDT). The family will be invited to film and forward a GMA video for assessment prior to the visit. The HINE can then be performed by the VNDT and the PEPI ARC team can collate and feedback the outcome of assessment. All infants will have their development, growth and general health assessed, be referred to diagnostic and supportive services if concerns or delays are detected. For all infants seen in the PEPI ARC clinic, a formal clinic letter will be sent to the whanau and their local health care team. At the end of the clinic appointment, the assessment findings and relevant information and support will be shared with the whanau regarding the likelihood of CP. Virtual hub For whanau living outside the Wellington region, the virtual hub will provide flexible support for families, paediatricians and therapists to aid early assessment follow up prior to 5 months corrected age. The Hub will offer: Families/whanau: - A neonatal neurodevelopmental passport to improve information sharing between families and health care providers during transition of care from NICU to regional centres and follow-up services, and to standardise CP-specific assessments. - Education and information about filming GMA videos and transferring them securely to the PEPI ARC team. Includes infographic and informatio sheets (electronic copies and paper form available from regional and PEPI ARC team) in Te Reo and English explaining the process. - Reporting of GMA videos and direct communication of results to whanau. - A dedicated email address to contact the PEPI ARC team for advice and support if required. - CP information package including how to access peer-to–peer support and other support services if their child is diagnosed with CP or high-risk of CP. Includes electronic and paper copies of information sheets available from regional and PEPI ARC team. For paediatricians/therapists: - Education sessions on early CP diagnosis, assessment tools and interpretation of results. - Reporting and peer-review of GMA videos. - Assistance with collating and assessing the likely diagnosis based on the triangulation of the HINE/GMA/neuroimaging results. - Assistance with communicating results of assessment to families. - Advice/Information about: Early intervention Surveillance of comorbidities and complications of CP Communicating a diagnosis of CP Parental support - Standardised information to provide to whanau about the diagnostic process. - CP information package to provide to families that receive a diagnosis of CP or high-risk of CP (available in electronic and paper form) PEPI ARC assessment schedule General Movements Assessment (GMA): 3 months CGA (12-14 weeks CGA) at PEPI ARC if not completed prior, or a repeat as required. Repeated 2 weeks later if abnormal/absent movements, video taken by parents/caregivers, or VNDT Hammersmith Infant Neurological Examination (HINE): 3 months CGA (12-14 weeks) at PEPI ARC. Repeated at 4 months CGA (16-18 weeks) if assessments are inconclusive at the initial appointment. Magnetic Resonance Imaging (MRI): Prior Neuroimaging will be reviewed at 12-16 weeks CGA at PEPI ARC. If the infants have an abnormal/absent GMA, and/or low HINE score and assessed as high-risk of CP, referral for MRI will be considered if indicated Infant and Child Feeding Questionnaire (ICFQ): Completed by whanau at PEPI ARC clinic Whanau questionnaires: Within 2 weeks of clinic or at 5-6 months CGA Health Professionals Questionnaire: Within 2 weeks of clinic or after 6 months of Hub being operational PEPI ARC staff Questionnaire:3 months from commencement of the PEPI ARC hub, and again at 12 months of the hub running. Whanau interview: From 6 months of the PEPI ARC running with staged review to ensure cross section of participants recruited for interview. Offered using telehealth or in person Health Professional interview: From 12 months of PEPI ARC hub running, randomly selected participants will be interviewed until saturation of experiences reached All resources have been developed specifically for PEPI ARC Hub to ensure local, regional and culturally appropriateness