Short summary

ADLIFE is a large-scale deployment of digitally enabled holistic and integrated supportive care. It is a quasi-experimental trial. The intervention consists of the use of the "ADLIFE toolbox" by patients, informal caregivers and health professionals in six pilot site. Intervention: Patients with advanced CHF and/or COPD (248 from DK) . Primary outcome: Patients emergency room visits. Secondary outcomes: Quantitative and quality data from patients, caregivers, healthcare professionals.

Rationale

Due to population ageing and advances in medical science, people with chronic diseases -including advanced severe life-threatening chronic diseases- live longer. Integrated supportive care can be an effective approach to enhance independence and quality of life and may also positively influence the course of illness from early states. The digitalisation of health services is expected to lead a profound transformation and it is important to evaluate its impact. ADLIFE will conduct a large-scale deployment of digitally enabled holistic and integrated supportive care. The ambition of ADLIFE is to: • Demonstrate that ICT supported ADLIFE intelligent and outcome-based personalized care model of integrated care is flexible and appropriate and can be deployed and replicated at large scale in different environments and be trusted in regard to data access, protection and sharing. • Achieve gains in patient health outcomes, and quality of life, slowing down clinical and functional deterioration and improving patients' experience. • Protect functionality and enhance autonomy, empowering patients to participate in decisions making on their own health and adapting to their changing conditions and context. • Obtain improvements in efficiency by making a better use of resources, increasing the coordination among all the key stakeholders of care and improving working conditions of professionals.

Description of the cohort

The ADLIFE intervention will be set across six different pilot sites: Basque Country, United Kingdom (two places), Denmark (Odense University Hospital), Germany and Israel involving healthcare professionals, care services and patients and caregivers. The intervention group (846 patients - 248 from Denmark) will be patients with Advanced Chronic Diseases (CHF and/or COPD with/without co-morbidities). The ADLIFE intervention consists of the deployment and use of the "ADLIFE toolbox" by patients, informal caregivers and health professionals in the pilot settings (The solution, "My Hospital" is used in Denmark). ADLIFE intervention will consider the health-related outcomes relevant for the patient in actual health service planning and evaluation. The control group follow the Standard of Care (SoC) according to the health care organizations criteria.

Data and biological material

The primary outcome will be the ER visits and will be assessed on patients. The secondary outcomes will be assessed on patients, caregivers and healthcare professionals. From a quantitative perspective, the Patient-Reported Outcome Measurements (PROMs): health-related quality of life (EQ-5D-5L), mood/emotional health (HADS-Hospital Anxiety and Depression Scale),activities of daily living (Lawton scale, Barthel Index, Kansas City Cardiomyopathy Questionnaire score, and COPD assessment test score) and complexity (Modified Medical Research Council -mMRC- Dyspnea Scale) will be assessed on patients, as well as their resource use and their associated costs. The caregiver burden, which encompasses burden of care (Zarit Burden Interview, ZBI)  and the mental well-being (Warwick-Edinburgh Mental Wellbeing Scale, WEMWBS), will be assessed on caregivers. The likelihood of successful adoption and use of the ADLIFE technology by its user will be assessed on the three stakeholders with the Unified Theory of Acceptance and Use of Technology (UTAUT).

Collaborating researchers and departments

Emergency & Medical department M/FAM, OUH Svendborg Hospital

• Center for Innovativ Medicinsk Teknologi (cimt.dk) Klinisk Udvikling - Innovation, Forskning & MTV

Clinical Institut, SDU