Data-driven personalization of a digital health solution to support family caregivers of children with chronic conditions
DALIA Team
- Octavio Rivera Romero
- José Luis Sevillano Ramos
- Jorge Ropero Rodríguez
- María Zamora Lorence (Hired personnel)
- Luis Fernández Luque
- Juliá López Guimet
- Santiago Hors Fraile
- Silvia Quer
- Ana Conde
- Ioannis Bilionis
- Alba Xifra
- Antonio de Arriba
- Elisa Civitani
- María Pilar Ferrer
- Teresa García Castellano
- Rosa Baños
- Adriana Mira Pastor
- Rocío Herrero
- Tamara Escrivá
Abstract
Taking care of children with chronic condition, especially if they require long-term injections, poses a significant burden to their family caregivers (i.e., mothers and fathers). In some cases, that burden can lead to caregiver fatigue and have a negative impact on both the health of the child and the caregiver. There is an opportunity to support those families with evidence-based digital interventions. The project DALIA builds on previous cooperation among an interdisciplinary consortium to research digital interventions for supporting family caregivers of children with chronic conditions.
As part of their innovative approach to managing stress and fatigue associated with chronic conditions, Adhera Health SL (Spain) identified a business and research opportunity to support digitalized children with chronic conditions and their caregivers. In cooperation with Prof. Rosa Baños (Univ Valencia), an intervention to help reduce stress burden in children was developed and piloted in the hospital Sant Joan de Deu (Barcelona, Spain) as part of the EU project PCP-Stars. Further, in in the year 2021 with the Hospital Miguel Servet (Spain) towards the validation of a digital intervention called Adhera® Caring Digital Program (ACDP) to support families of children with growth hormone deficiency. That collaboration was expanded in the year 2022 to also support families of children affected by Type 1 Diabetes with the support of a major pharmaceutical company. The ACDP provides personalized support for the wellbeing of family caregivers across health conditions using personalization techniques based on Artificial Intelligence (AI) powered by the Adhera® Precision Digital Companion platform which is being used in more than 20 clinical sites across Europe. The ACDP builds on the principles of transdiagnostic approaches for self-management in a 12-week intervention which includes evidence-based tools to address caregiver fatigue, namely psycho-social education, self-management education, and Cognitive Behavioral Therapy (CBT). The early results on the evaluation of ACDP has also highlighted several research gaps which are tackled by the objective of this project: a) lack of personalization framework for digital interventions that address the needs for adaptations across chronic conditions, b) lack of tools to provide data-driven insights on health and intervention engagement to provide personalized family support, c) evidence on effectiveness of digital programs like ACDP across conditions.
This 3-year project includes three major areas of work with an interdisciplinary approach. Participatory health informatics methods, under the leadership of Univ. Seville, will be used to study the needed adaptations of the ACDP across multiple conditions using tools such as workshops, interviews, focus groups, etc. designed based on technology acceptance models and aiming to design and validate an innovative personalization framework for digital health interventions. Adhera Health will also create a new technical solution for the data-driven analysis of health and intervention engagement for adaptive self-management that will help better understand the needs of those families and the micro-level performance of the intervention. Finally, under the psychological and clinical guidance of Prof. Rosa Baños (Univ Valencia) and Dr. de Arriba (Hospital Miguel Servet) a series of clinical feasibility studies in childhood obesity, diabetes and growth disorders will be performed to collect data on the effectiveness of ACDP. The real-world data from the research will support the development of novel AI algorithms and tools to support the better understanding of caregiver fatigue and its impact on children’s health and self-management. The outputs from the project will support the expansion of the ACDP across multiple healthcare systems leveraging on the existing market traction of Adhera Health, thus facilitating an exchange of knowledge across the participating academic/clinical organizations and Adhera Health and also creating potential opportunities for partnerships in competitive international projects both in Europe and North America.