November 14 2023, 09:00 GMT
Aparito and Ospedale Pediatrico Bambino Gesu, Rome, Italy in partnership with Martina e la sua Luna Onlus, a non-profit organisation that provides economic and practical support to sick children and their families to realise their dreams, are pleased to share the progress of their development of the H2.0 app available via Aparito’s Atom5™ platform to support children and families living with hydrocephalus shunts.
Some children who require a hydrocephalus shunt do so because of a brain tumour that blocks the flow of cerebrospinal fluid (CSF) around the brain, a shunt is implanted to allow the CSF to be diverted around the blockage.
Unfortunately, these shunts can sometimes become blocked or infected. At such times the children become ill with symptoms such as headaches, vomiting and drowsiness. They must seek urgent medical care to review their symptoms and consider if a surgical replacement of the shunt is required.
Tracking the frequency and severity of these symptoms in a way that can be monitored by the clinical team is extremely important. The H2.0 app is designed to do exactly that and to provide real-time visibility to the clinical team as the symptoms change over time.
During the first part of this project, 10 consenting families were interviewed and followed as they navigated the app to on-board, with support provided as necessary. The study participants were then asked to use the app for 30 days, before being interviewed about their experience, provide feedback and score the app experience overall.
Feedback scores were high (0.86 out of one) and general feedback was very positive. All the feedback was collated by the study team and incorporated into a revised app content. As part of the second phase in this project, a further 30 families will be consented to take part in using the H2.0 app for six months.
Early input and user feedback from patients and families on early prototypes are essential for the long-term success and engagement of such digital solutions.
As a consortium, we are excited about the progress to date and look forward to developing a tool that can support these children and their families.
Dr Elin Haf Davies, CEO of Aparito reports “My early clinical years were in paediatric neurosurgery, and I witnessed firsthand the worry, anxiety and uncertainty for children and families unsure if their symptoms were a sign that they needed urgent shunt replacement. Developing a digital tool that can help support the right clinical decision and reduce the inevitable anxiety is an important effort for us at Aparito, and we are very encouraged by the feedback of this first part of the research.”
Mrs. Edy Govetto, president of Martina e sua Luna Onlus reports: “We’d like to think that, one day in a hospital somewhere in a corner of the world, a doctor will be able to call some parents and say: “Thanks to the efforts of a very small Italian association, today we have more hope for your child”.
The non-profit organisation “Martina e la sua Luna” takes over where, for economic and practical reasons, these children cannot live as best as possible even in difficulty, as by attending a concert, a football match, a theatre show, a trip to the playground or a visit to a city can represent one more day of a “normal” and carefree life! This represents Martina’s greatest teaching that we cannot fail to listen to.
Aparito’s mission is to digitise clinical trials and accelerate drug development for patients with life-limiting diseases by supporting patient-centric clinical trials with innovative treatments.
Clinical trials can be conducted within patients’ homes by leveraging our Atom5™ platform incorporating disease-specific smartphone apps, video assessments and wearable technology to deliver digital clinical trials using novel eCOA to generate continuous real-world data.
Aparito’s patient-generated data platform is disease-agnostic and scalable, ready for rapid deployment in global rare disease studies.