1. Rationale
’ functional deterioration, chronic disease(s) (ACDs)—live, Heart Failure, COPD, chronic disease
CHRONIC OBSTRUCTIVE PULMONARY DISEASE, CHRONIC DISEASES, ACD, COPD, HEART FAILURE, CHRONIC DISEASE
These authors contributed equally to this work.Due to population ageing and medical advances, people with advanced chronic diseases (ACD) live longer. Such patients are even more likely to face either temporary or permanent reduced functional reserve, which typically further increases their healthcare resource use and the burden of care on their caregiver(s). Accordingly, these patients and their caregiver(s) may benefit from integrated supportive care provided via digitally supported interventions. This approach may either maintain or improve their quality of life, increase their independence, and optimize the healthcare resource use from early stages. ADLIFE is an EU-funded project, aiming to improve the quality of life of older people with ACD by providing integrated personalized care via a digitally enabled toolbox. Indeed, the ADLIFE toolbox is a digital solution which provides patients, caregivers, and health professionals with digitally enabled, integrated, and personalized care, supporting clinical decisions, and encouraging independence and self-management. Here we present the protocol of the ADLIFE study, which is designed to provide robust scientific evidence on the assessment of the effectiveness, socio-economic, implementation, and technology acceptance aspects of the ADLIFE intervention compared to the current standard of care (SoC) when applied in real-life settings of seven different pilot sites across six countries. A quasi-experimental trial following a multicenter, non-randomized, non-concurrent, unblinded, and controlled design will be implemented. Patients in the intervention group will receive the ADLIFE intervention, while patients in the control group will receive SoC. The assessment of the ADLIFE intervention will be conducted using a mixed-methods approach.Due to population ageing and medical advances, people with chronic disease(s)—including advanced chronic disease(s) (ACDs)—live longer. Patients living with chronic disease may face either temporarily or permanently reduced functionalities, which typically increases their caregiver’s burden and their healthcare resource use [Chronic Obstructive Pulmonary Disease (COPD) and Heart Failure (HF) are two of the most prevalent ACDs [The EU-funded ADLIFE project (H2020, SC1-DTH-11-2019, 875209) aims to meet the current societal and health system challenges in Europe that are created due to the increasing number of persons living with ACD, often with accompanying co-morbidity and polypharmacy. ADLIFE is designed to provide to such patients and their caregiver(s) with digitally enabled, integrated, and personalized care. The ADLIFE toolbox is a digital solution which consists of three Information and Communication Technology (ICT) components: a platform to manage and customize care plans by the interdisciplinary healthcare team with the patient and for the patient, services supporting the clinical decisions, and a platform encouraging independence and self-management of patients and caregivers. The ICT solutions will be scaled in the seven pilot sites from six countries participating in the intervention in an integrated manner with the existing ICT solutions utilized for healthcare systems.The ADLIFE intervention objective is to have an impact for three stakeholders: patients, informal caregivers, and healthcare professionals, across the seven participating international healthcare systems. Thus, the ADLIFE intervention aims at slowing down the patients’ functional deterioration ensuring their quality of life and promoting shared decision making, whilst in parallel reducing the caregiver burden, improving the healthcare professional’s working conditions, and optimizing healthcare resource use.The evaluation of such an intervention is challenging, since multiple dimensions [The aim of this research is to evaluate whether the ADLIFE intervention, when applied in real-life settings, is able to deliver appropriate targeted and timely care for patients living with ACD. Here we present the protocol of the ADLIFE study. Using a mixed-methods approach, this study will provide robust scientific evidence on the effectiveness, socio-economic implementation, and technology acceptance assessment of ADLIFE compared to the SoC, in order to provide the scientific evidence-based supporting the funding decision-making of the ADLIFE intervention.