Pragmatic trial design of a digital supportive care platform for patients with brain tumours and their carers
Kalla, M.; Bray, S. C.; Schadewaldt, V.; Krishnasamy, M.; Whittle, J. R.; Chapman, W.; Huckvale, K.; Burns, K.; Capurro, D.; Layton, M. J.; Thomas, J.; Lourenco, R. D. A.; Andrew, D.; McAlpine, H.; Dhillon, R. S.; Cain, S.; Rosenthal, M.; Drummond, K. J.
Show abstract
Patients with a brain tumour receive evidence-based clinical care in Australia but a focus on supportive care, including social connection, is often deficient. Digital health platforms hold promise to support these patients and their carers. Existing platforms often lack end-user co-design, evidence-based development and rigorous evaluation. Recognising this unmet need, we co-designed Brain Tumours Online, a digital supportive care platform to streamline access to educational resources, symptom management tools, and peer support for patients, carers, and healthcare professionals. In this article, we present our evaluation approach for Brain Tumours Online to advance methodological thinking in the evaluation of multi-faceted, co-designed digital health platforms. In contrast to standardised procedures in clinical trials, digital health interventions such as supportive care platforms are more complex due to their interactive nature, no prescriptive protocols for usage and the dynamic content of web-based information. Thus, traditional evaluation approaches often fall short in evaluating such multi-faceted digital health supportive care platforms. To address these challenges, we developed a bespoke, logic-modelling based evaluation approach to assess the usability, engagement, impact, and economic value of our platform. Our pragmatic but rigourous evaluation approach required the adaptation of existing evaluation frameworks, subject-matter, and lived experience expert knowledge. Our implementation science and co-design approach are shared in different papers. Our study outcomes will also be shared in a separate paper. In the current paper, we share our approach to the evaluation of Brain Tumours Online and provide insights that may be of value for other researchers interested in the nuances of trialing multi-faceted digital health supportive care platforms.
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