There are substantial barriers to initiate advance care planning (ACP) for persons with chronic-progressive disease in primary care settings. Some challenges may be disease-specific, such as communicating in case of cognitive impairment. This study assessed and compared the initiation of ACP in primary care with persons with dementia, Parkinson’s disease, cancer, organ failure and stroke.

Longitudinal study linking data from a database of Dutch general practices’ electronic health records with national administrative databases managed by Statistics Netherlands.

Data from general practice records of 199 034 community-dwelling persons with chronic-progressive disease diagnosed between 2008 and 2016.

Incidence rate ratio (IRR) of recorded ACP planning conversations per 1000 person-years in persons with a diagnosis of dementia, Parkinson’s disease, organ failure, cancer or stroke, compared with persons without the particular diagnosis. Poisson regression and competing risk analysis were performed, adjusted for age, gender, migration background, living situation, frailty index and income, also for disease subsamples.

In adjusted analyses, the rate of first ACP conversation for persons with organ failure was the lowest (IRR 0.70 (95% CI 0.68 to 0.73)). Persons with cancer had the highest rate (IRR 1.75 (95% CI 1.68 to 1.83)). Within the subsample of persons with organ failure, the subsample of persons with dementia and the subsample of stroke, a comorbid diagnosis of cancer increased the probability of ACP. Further, for those with organ failure or cancer, comorbid dementia decreased the probability of ACP.

Considering the complexity of initiating ACP for persons with organ failure or dementia, general practitioners should prioritise offering it to them and their family caregivers. Policy initiatives should stimulate the implementation of ACP for people with chronic-progressive disease.

The provision of optimal care for older adults with complex chronic conditions (CCCs) poses significant challenges due to the interplay of multiple medical, pharmacological, functional and psychosocial factors. To address these challenges, the I-CARE4OLD project, funded by the EU-Horizon 2020 programme, developed an advanced clinical decision support tool—the iCARE tool—leveraging large longitudinal data from millions of home care and nursing home recipients across eight countries. The tool uses machine learning techniques applied to data from interRAI assessments, enriched with registry data, to predict health trajectories and evaluate pharmacological and non-pharmacological interventions. This study aims to pilot the iCARE tool and assess its feasibility, usability and impact on clinical decision-making among healthcare professionals.

A minimum of 20 participants from each of the seven countries (Italy, Belgium, the Netherlands, Poland, Finland, Czechia and the USA) participated in the study. Participants were general practitioners, geriatricians and other medical specialists, nurses, physiotherapists and other healthcare providers involved in the care of older adults with CCC. The study design involved pre-surveys and post-surveys, tool testing with hypothetical patient cases and evaluations of predictions and treatment recommendations. Two pilot modalities—decision loop and non-decision loop—were implemented to assess the effect of the iCARE tool on clinical decisions. Descriptive statistics and bivariate and multivariate analysis will be conducted. All notes and text field data will be translated into English, and a thematic analysis will be performed. The pilot testing started in September 2024, and data collection ended in January 2025. At the time this protocol was submitted for publication, data collection was complete but data analysis had not yet begun.

Ethical approvals were granted in each participating country before the start of the pilot. All participants gave informed consent to participate in the study. The results of the study will be published in peer-reviewed journals and disseminated during national and international scientific and professional conferences and meetings. Stakeholders will also be informed via the project website and social media, and through targeted methods such as webinars, factsheets and (feedback) workshops. The I-CARE4OLD consortium will strive to publish as much as possible open access, including analytical scripts. Databases will not become publicly available, but the data sets used and/or analysed as part of the project can be made available on reasonable request and with the permission of the I-CARE4OLD consortium.