Digital tools to augment care ecosystems around older patients with palliative care needs

Previous work identified that older patients with non-oncological chronic conditions, their informal caregivers and health and care professionals (HCPs) have psychological, social, financial and informational needs, such as about treatments and prognosis, effective communication, knowledge about palliative care (PC) or lacking confidence when delivering PC. Some of these needs can be addressed or supported by Information and Communications Technology (ICT). Within this study we present a set of digital solutions that have been developed under the EU-funded InAdvance project (825750) to respond to the aforementioned needs. The tools address the whole ecosystem supporting in terms of information provision, self-management, training, wellbeing and patient monitoring. Specifically: • The “Living Well” online course including information about diseases and treatments, advance care planning, and help with activities of daily living. • A Website with resources to support care at home providing informal caregivers with an interface to find useful resources about PC and self-caring. • The Adhera InAdvance mHealth solution addressing patients’ stress and anxiety by strengthening self-management through personalised information and guidance. • A set of VR (virtual reality) videos, containing 360° content to promote relaxation and pain management and a series of training scenarios targeting the enhancement of communication skills and empathy for HCPs and medical students. • A mobile app for caregivers and patients’ education targeting the need for information on diseases which leverages on virtual scenarios. • A technology designed to support HCPs and caregivers to prevent bedsores/ulcer formation through monitoring of the position of a bedridden person through an artificial intelligence system that analyses in real-time data from a stereo camera mounted above the bed. Six different feasibility studies were deployed in Amadora-Portugal, Inverness-UK, Thessaloniki-Greece and Valencia-Spain in order to assess the previous digital solutions. In each of the pilot settings, a one-arm, pre-post intervention study was performed, with the involvement of different end-users: older people with chronic complex conditions, their relatives/informal caregivers and HCPs. In total, 115 participants were enrolled: 66 patients, 19 carers and 30 HCPs. The evaluation of the six digital solutions involved mainly qualitative data collection methods and outcomes, such as acceptability, usability, adherence or exploratory patient-centred measures. Users considered most of the digital solutions as easy-to-use, however, in some cases, patients required support from caregivers for their optimal use. VR for empathy were highly appreciated by HCPs as they were seen as a very useful solution for improving communication skills, especially for those sensitive conversations such as breaking bad news. Eventually, we can conclude that all of them gather key features and provide functionalities that can be realistically scaled up or adopted in the context of clinical studies aimed to analyse their effectiveness on outcomes such as quality of life, emotional distress or burden

Augment · Palliative care · Medicine · Nursing · Palliative Care and End-of-Life Issues