CONSTELLATIONS Living Lab: Improving the Care Transitions of Older Adults Living with Neurocognitive Disorders

What this study is about

The prevalence of major neurocognitive disorders (MNCDs), particularly Alzheimer's disease, among older adults is increasing. These individuals and their caregivers often face challenges due to inefficient and poorly coordinated care transitions, negatively impacting patients, caregivers, healthcare professionals, and the healthcare system itself. To address this, the Quebec Ministry of Health and Social Services has released Phase 3 of its Ministerial Guidance on Major Neurocognitive Disorders, aiming to enhance care coordination between primary healthcare professionals and those living with MNCDs and their caregivers. Quebec's healthcare system comprises various organizations providing care and services to individuals with MNCDs. Each organization faces unique challenges hindering improvement initiatives. However, common obstacles persist: inadequate communication systems for sharing vital information, lack of access to data for measuring care transition quality, and the absence of patient/caregiver satisfaction assessments to inform service enhancements. Additionally, organizations require support in managing change. This need for improvement, coupled with the aspiration for a patient-centered learning health system (LHS), motivated the Institut national d'excellence en santé et services sociaux (INESSS), the Centre intégré de santé et de services sociaux de Chaudière-Appalaches (CISSS CA), and the research team to collaborate on adapting a proven continuous improvement program: the CoMPAS+ MNCD Program. The Program will involve reflecting on best practices and identifying local challenges within participating Family Medicine Groups (FMGs) to propose and implement solutions. The CONSTELLATIONS Living Lab project has been tasked with co-developing, implementing, and evaluating the Program's impact on care transitions over two years. These findings will inform decision-makers and stakeholders about the Program's adaptability to the Chaudière-Appalaches region, guiding local and provincial decision-makers on healthcare system improvements and emphasizing the importance of supporting an LHS.

Who can join (things the study team will check)

✅ You may be able to join if…

• Be 65 years of age or older;
• Be living with a major neurocognitive disorder in the process of clinical evaluation or already diagnosed;
• Reside in the socio-sanitary region of the CISSS CA;
• Be able to consent independently to research (for users without caregivers at the beginning of their illness);
• Reside at home or in a retirement home or in an intermediate residence or a family-type resources;
• Consent to the research team collecting data in their medical records (FMG Electronic Medical Record (EMR) when accessible, Hospital Electronic Patient Record (EPR) when accessible, etc.). OR
• Be the caregiver of a person 65 years of age and older living with a major neurocognitive disorder in the process of clinical evaluation or already diagnosed;
• The person being cared for must reside in the socio-sanitary region of the CISSS CA;
• Consent to the research team collecting data from the medical records of the person being cared for (FMG Electronic Medical Record (EMR) when accessible, Hospital Electronic Patient Record (EPR) when accessible, etc.);
• Be able to consent independently to research.

🚫 You may not be able to join if…

• Users living with major neurocognitive disorder under 65 years of age;
• User living in a provincial long-term care facility at the time of recruitment;
• User 65 years of age and older living with a major neurocognitive disorder, unable to consent independently to research, without a caregiver, or without a caregiver able to consent independently to research;
• Users aged 65 and over living with a major neurocognitive disorder, residing in a territory other than that of the CISSS CA;
• User refusing to consent to the collection of data in their medical records; OR
• Caregiver of a user living with a major neurocognitive disorder who does not reside in the CISSS CA territory or who is not 65 years of age or does not live at home, in a retirement home or in an IR or who died before the start of the study (T=0).
• Caregiver refusing to consent to the collection of data in the medical records of the person being cared for. Study population for the assessment of the intention to apply best practices of CoMPAS+ MNCD workshop participants (Meso level)

✅ You may be able to join if…

• Health professionals working in a CISSS CA health facility or with a community organization;
• CISSS CA decision-makers or local managers;
• Community service representative (e.g., Alzheimer's Society, L'APPUI);

🚫 You may not be able to join if…

• Research team members
• Workshop facilitators
• INESSS professionals
• Users and partner caregivers
• Person unable to consent
• Person refusing to consent Study population for the evaluation of the potential to scale-up and sustainability of the CoMPAS+ MNCD Program within the CISSS CA (Meso level)

✅ You may be able to join if…

• Health professionals working at the CISSS CA or in the community participating in the CoMPAS+ MNCD workshops;
• CISSS CA decision-makers;
• Users and partner caregivers;
• Community service representatives (e.g., Alzheimer's Society, L'APPUI);
• Members of the research team (except the person in charge of this component (Laetitia Bert), Alexander Cornea (research assistant), Martyne Audet (scientific coordinator), Clémence Dallaire, André Côté, Félix Pageau, Catherine Paquet);
• Research coordinator responsible for the involvement of partner users in the conduct of the workshops (Émilie Côté);
• INESSS professionals;
• Workshop facilitators
• Representative of the Ministry of Health and Social Services (MSSS).

🚫 You may not be able to join if…

• Person unable to consent;
• A person refusing to consent;
• Member of the research team responsible for carrying out this part of the study or by the scientific coordination of this project (Laetitia Bert, Alexander Cornea, Martyne Audet (scientific coordinator), Clémence Dallaire, André Côté, Félix Pageau, Catherine Paquet).

Where this trial is running

• Patrick Archambault, Québec, Quebec, Canada

Who to contact

Patrick M Archambault, MD MSc FRCPC · 4189552552 · patrick.archambault.med@ssss.gouv.qc.ca

It's completely normal to call and ask questions before deciding anything. Mention the study ID: NCT06608589.