Outcome data form (pdf format)
Outcome data form (doc format)
Unit denominator data form (pdf
format)
TRPG/SEND Two 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:
1. Philip Amess - Surrey & Sussex
Network
2. Anusha Arasu - Hertfordshire & Bedfordshire
Network
3. Michele Cruwys - North West
London Network
4. Angela D'Amore - Norfolk, Suffolk and
Cambridgeshire
5. Swee Fang - North East London
Network
6. Karena Ghaus - North West London
Network
7. Angela Huertas - North
Central London Network
(Honorary Secretary)
8. Anthony Kaiser - South East London
Network
9. Jacquie Kemp - Network
Managers' representative
10. David Long - Kent & Medway Network
11. Neena Modi (Chair) - North West London
Network
12. Margaret Morton -
South East London Network
13. Richard Nicholl -
North West London Network
14. Enitan Ogundipe - North West London
Network
15. Ruth Shephard - South West London
Network
Newsletters are published on the web site of the
Thames Regional
Perinatal Group