ORCHID Annual Report 2023 - Flipbook - Page 3
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Measurement and evaluation
Patient reported experiences and outcomes in children with chronic
and/or rare conditions
ORCiD ID: 0000-0002-4769-1211
GoogleScholar:
https://scholar.google.co.uk/citations?user=B9KFPaYAAAAJ&hl=en&oi=a
Dr Kate Oulton
Dr Kate Oulton is a children9s nurse who has worked at GOSH
for over 20 years. This year saw Kate take up a new role as
Consultant Nurse for Family Engagement and Co-Production,
Disabilities. Alongside this, Kate continues to work as a Senior
Research Fellow in ORCHID and is also seconded one day a
week as the Patient and Family Involvement Lead for the
GOSH Children9s Cancer Centre.
Kate leads a programme of research focused primarily on holistic well-being of
children and young people with long term, complex and/or life-limiting or lifethreatening health needs. She has a particular interest in Learning Disabilities
and Autism and reaching under-served communities.
Her main fields of research, scholarship and supervision include:
• Health inequalities and equity of access to healthcare services
• Experiences and outcomes of children and young people and their
families
• Childhood disability advocacy
Kate has particular expertise in the use of qualitive research methods.
Principles of inclusion and co-production underpin her work and she has a
specific interest in using creative, participatory approaches to engage families
in the research process. Kate is also passionate about supporting nurses and
allied health professionals on their clinical academic journey.
She is the Co-Chair of the National Learning Disability Acute Liaison Network
and a member of the British Academy of Childhood Disability Strategic
Research Group. This year Kate was a finalist for the RCN Researcher of the
Year Award and shortlisted for The Burdett Nursing Learning Disability Nursing
Award.
Digital profile:
ORCiD ID: 0000-0002-5778-3849
Google Scholar:
https://scholar.google.co.uk/citations?user=TeXRL9QAAAAJ&hl=en&oi=ao
Dr Lucy Alderson
Dr Lucy Alderson champions clinical outcome research with a
focus on AHPs and the wider group of Health Care
Professionals. Lucy9s research journey has focused on the
development and application of reliable and valid functional
outcome measures in the clinical setting, with a special
interest in gait and mobility.
The GOSH-ICH gait centiles that emerged from her PhD and Post-Doc work
support functional outcome research undertaken by colleagues in different
specialties across the hospital. Use to demonstrate improvement post
transplant in rare metabolic and mitochondrial diseases like MNGIE and in
orthopaedic limb lengthening outcomes are two examples of early work
presented to colleagues. Both demonstrate the use of these gait outcomes to
identify clinical change in outcome associated with novel therapeutics and
surgery.
The use of gait measurements to describe natural history of Vincristine
Induced Peripheral Neuropathy (VIPN), and the impact of reduction in pulsed
vincristine during maintenance has remained a focus. With presentation at
International Society of Oncology in paediatrics in October 2024 in Hawaii, and
ongoing work on the broader publication exploring genetic and pharmacology
risk factors alongside motor outcomes.
Activity and participation were another focus in 2024 using wearable devices
for activity tracking in haemophilia as activity-based gait measurements are
becoming less sensitive to more subtle changes in function associated with
advances in current medical management of this condition. The SPACE study
has also run through this year: A qualitative study into physical activity in
children and young people with cancer due to complete data collection in June
2025.
As a research leader in Physiotherapy and across the AHP team Lucy has
continued to work with stakeholders to champion research at all levels from
case note review and service improvement audits to support for AHP Clinical
Academics. The GOSH GOLD series of short animations and podcasts to
support early researchers is integrated within the AHP band 6 development
programme. These education packages are available to all trust staff via
GOLD and we hope they will lay the foundations for AHP and nursing
researchers of the future.
She has continued to work with colleagues at GOSH ICH and the Advanced
Physiotherapy MSc UCL to explore patient experience alongside motor
outcomes in children and young people with Spina Bifida, particularly focusing
