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TRPG SEND Long Term Outcomes Group

Outcome data form (pdf format)

Unit denominator data form (pdf format)

TRPG/SEND wo Year Neonatal Health Outcomes Programme

Chair: Prof Neena Modi

Secretary: Dr Angela Huertas

In the neonatal intensive care population - impairment, disability and mortality rates are high. Comprehensive, population-based outcome data for NICU babies are not available in the U.K in a standardised fashion but these are essential for service planning, parent counselling and clinical audit. The Thames Regional Perinatal Outcomes Group established a programme in 2004 with primary aim of establishing a pragmatic mechanism to capture outcome data in order to:

determine the population prevalence of impairment at two-years corrected age in the categories "no functional impairment", "mild-moderate impairment" and "severe impairment"
determine the distribution of impairment by domain
estimate loss to follow-up and deaths that occur after discharge
link outcomes with the neonatal record

Acknowledging the importance of this programme, SEND joined this initiative in 2007 and it is therefore now known as the "TRPG/SEND Two Year Neonatal Outcomes Programme". The Outcomes Group consists of Neonatologists/Community Paediatricians representing each participating Perinatal Network and also has a network manager's representative.

In the first instance the primary focus has been on babies born less than 29 weeks (i.e. 22+0 to 28+6 weeks) gestation but the ultimate aim is to extend this to all neonatal unit graduates. The Outcomes Group has developed a two-pronged approach to capture the necessary information; through the Unit denominator data form (pdf format) and the Outcome data form (pdf format).

Denominator data are collected from Maternity and Neonatal Units of each participating network hospital every year. The two-year outcome data are collected from clinicians after the baby is seen for a follow-up assessment at two years of corrected age. This data can be recorded on paper or on-line through SEND if the child has a neonatal record in SEND.

The TRPG/SEND Outcomes Group hopes that involvement will be universal. Please ensure that you have signed approval from your Trust Caldicott Guardian and Lead Clinician to share the data with the Outcomes Group. An agreement covering Trust approval has been prepared by the SEND Board, from who a copy can be obtained.

The Outcomes Group requests all clinicians involved in follow-up of the babies of less than 29 week gestation, to complete a two-year outcome form when they see a child for assessment. If the baby has a neonatal entry on SEND, regardless of gestational age at birth, please complete the form online. SEND can be accessed from any NHS computer by professionals with a user name and password. Please send the paper based forms to the Outcomes Co-ordinator.

The paper based outcome forms may please be sent to:

Sunny Kuriakose

TRPG/SEND Neonatal Outcomes Coordinator

Academic Department of Neonatal Medicine

4th Floor, Imperial College London
Chelsea & Westminster Hospital
369 Fulham Road, London SW10 9NH

Phone : 020 8846 6703

Fax : 020 8746 8050

Members of the SEND/TRPG Outcomes Group are:

Philip Amess - Surrey & Sussex Network
Anusha Arasu - Hertfordshire & Bedfordshire Network
Michele Cruwys - North West London Network
Angela D'Amore - Norfolk, Suffolk and Cambridgeshire
Swee Fang - North East London Network
Karena Ghaus - North West London Network
Angela Huertas - North Central London Network

(Honorary Secretary)
Anthony Kaiser - South East London Network
Jacquie Kemp - Network Managers' representative
David Long - Kent & Medway Network
Neena Modi (Chair) - North West London Network
Margaret Morton - South East London Network
Richard Nicholl - North West London Network
Enitan Ogundipe - North West London Network
Ruth Shephard - South West London Network

Newsletters are published on the web site of the Thames Regional Perinatal Group

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