ORCHID Annual Report 2023 - Flipbook - Page 20
Supervisors: Prof Eleanor Main, Prof Cherry Kilbride, Dr Hortensia Gimeno, Mr Kristian Aquilina
June 2023 - May 2026
Study Summary:
The main purpose of this study is to investigate the medium to long-term outcomes (3-10 years) after
Selective Dorsal Rhizotomy (SDR) in ambulatory children and young people with cerebral palsy (CYPwCP).
A convergent parallel mixed methods study has been designed across two work packages (WPs), which will
run in parallel. The International Classification of Functioning, Disability and Health (ICF) will be used as a
theoretical framework to guide the data collection and to integrate data from each work package. WP-1 is an
observational cohort study and WP-2 is a qualitative study.
In the observational cohort study (WP-1), routinely collected standardised outcome measures will be
repeated at one additional time point, more than three years after surgery. This will mirror previous
assessments carried out as part of the SDR clinical pathway, which normally concludes two years after
surgery. A survey including validated Patient Reported Outcome Measures (PROMs) and a study-specific
questionnaire will also be administered in WP-1. The qualitative study (WP-2) will involve an in-depth
exploration of parents9 and CYPs9 views through semi-structured interviews to explore parents9 and CYPs'
experiences, reflections, and perceptions of outcomes and satisfaction of SDR in relation to previous
expectations.
The results from the two WPs will be combined by comparing and contrasting findings from both WPs to
provide a more holistic understanding and gain deeper insights into longer-term SDR outcomes. Findings
will be used to create evidence-based family resources and decision aids to help families decide whether
SDR surgery is the right treatment choice for the child and support their preparation and adjustments after
SDR.
Digital profile:
ORCiD ID: 0000-0002-1002-0334
Peer-reviewed publication:
Waite G, Chugh D, Cawker S, Oulton K, Wray J, Harniess P. (2023) 'Wanting no regrets': Parental decision
making
around
selective
dorsal
rhizotomy.
Child
Care
Health
Dev;49(2):382-391.
https://doi.org/10.1111/cch.13056
Grant:
Chugh D. HEE/NIHR Doctoral Clinical and Practitioner Academic Fellowship
Fan Iek Cheng
Indep. Presc. MPharm MScAPP MFRPSII
NIHR Clinical Doctoral Research Fellowship, Institute of Child Health/UCL
Study title: Personalising medicine for immunocompromised children using pharmacokinetic models
Supervisor: Professor Joseph Standing, Professor Claire Booth, Dr Austen Worth
July 2021 – June 2024
66% of drugs marketed in EU do not have a paediatric authorisation, necessitating the use of medicines
outside their licensed authorisation. To facilitate this, doses are often extrapolated based on information elicit
from clinical trials conducted in young healthy adults. Without age specific information on drug handling
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