Case study: Early intervention in perinatal stroke, the eTIPS project
NIHR Career Development Fellowships have now been replaced by NIHR Fellowships. The NIHR Fellowship Programme supports individuals on their trajectory to becoming future leaders in NIHR research.
What is eTIPS?
Up to one in 2,500 babies have a stroke before or around the time of birth. Some will develop weakness on one side of the body which can severely affect them for the rest of their lives.
No standardised early therapy intervention exists to improve movement outcomes for babies following perinatal stroke. This is despite robust scientific evidence for a critical therapeutic window in the first six months of life. Delivered in these early months while the nervous system is still developing, the eTIPS intervention aims to mitigate the effects of perinatal stroke. It is a non-invasive treatment that promotes physical movement in the area of the body potentially affected and can be delivered at home by parents.
Through an NIHR funded research study, Dr Anna Basu, NIHR Career Development Fellow and Honorary Consultant Paediatric Neurologist, led a multidisciplinary team investigating the feasibility and acceptability of the eTIPS intervention.
“In babies the brain and nerves are still developing. This means that signs of a stroke may not be obvious in the early months and may emerge later. However this also provides hope that we can act to help those affected to develop movement control to the best of their potential.”
What did the project involve?
The project started with a review of practice in management of perinatal stroke in northern England. The research team then devised therapy materials for parents of affected infants and conducted focus groups of parents and health professionals. The groups evaluated and revised the materials, helped researchers to identify and overcome potential barriers to uptake and discussed how the intervention might fit with their roles. Newcastle-based charity Tiny Lives provided funding for further resource development, including a website with explanatory videos, as parents requested.
Next, a feasibility study recruited parents, carers and therapists to pilot the eTIPS approach, by treating babies daily at home until they reached six months. Supplementary funding came from the NIHR’s research capability funding, and Newcastle upon Tyne Hospitals Healthcare Charity.
A research assistant, supported by Dr Basu’s NIHR fellowship, conducted observations and in-depth interviews to explore the experience of families and therapists. This showed that eTIPS was feasible to deliver and accepted by families. As one parent said: “It’s second nature now as we’ve done it this way since coming home from hospital. It's routine, we don’t have to think about it.”
“We listened carefully to feedback from parents of children with hemiplegia and a range of healthcare professionals. We designed eTIPS to provide a fun and interactive approach that families can incorporate easily into a baby’s everyday life.”
What’s next for eTIPS?
The eTIPS approach presents a new opportunity to improve long-term outcomes for children with perinatal stroke, through timely intervention. It has broad potential reach by using low-cost, readily accessible online materials. There is scope for further resource development and online peer support, shown to improve the effectiveness of web-based interventions.
However, early intervention requires early identification and referral of affected infants. There is still work to be done here, and Dr Basu collaborates with a number of partners on training and awareness initiatives.
As a director of Ei SMART Dr Basu works with a multidisciplinary team of specialists on improving the quality of early intervention for babies with neurodevelopmental conditions.
A collaboration with computer scientists at Newcastle University’s Open Lab employed machine learning methodology to help distinguish early movement control in infants with perinatal stroke from that in unaffected infants. Additionally, Dr Basu plans a multicentre, randomised controlled trial to study the impact on motor outcome of the eTIPS approach compared with standard care.
Now appointed Clinical Senior Lecturer at Newcastle University, Dr Basu will be able to continue her research and clinical commitments, including interventions for perinatal stroke and hemiplegia.
“The NIHR Career Development Fellowship award was hugely beneficial, providing the resources for me to build a firm base for the next stage trial of the eTIPS intervention. I am extremely grateful to the NIHR for this amazing opportunity to pursue such an important line of research.”
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