Informal caregivers' roles and needs regarding shared decision-making in severe aortic stenosis.

Area of Science:

• Cardiology
• Geriatrics
• Health Psychology

Background:

• Shared decision-making (SDM) is vital in managing severe aortic stenosis (AS) in elderly patients.
• Informal caregivers (ICs) play a significant role in patient care and treatment decisions.
• Understanding IC experiences and preferences in SDM is crucial for optimizing patient outcomes.

Purpose of the Study:

• To explore informal caregivers' (ICs) experiences, preferences, and needs regarding shared decision-making (SDM) in severe aortic stenosis (AS) patients aged 70 years and older.
• To assess the impact of perceived SDM levels on ICs' quality of life (QOL) and distress.
• To identify the roles ICs assume within the SDM process.

Main Methods:

• A mixed-methods study involving questionnaires at baseline and 3-month follow-up.
• Focus groups were conducted with a subset of informal caregivers.
• Quantitative and qualitative data were analyzed to understand IC perspectives and the association between SDM and QOL.

Main Results:

• Most ICs (63.9%) preferred a collaborative decision-making (DM) role.
• ICs perceived that their identification as discussion partners and discussions about patients' daily lives were least addressed by professionals (26.3% and 59.6%, respectively).
• Higher perceived SDM was positively associated with improved social relations (QOL at baseline) and psychological health and environment (QOL at follow-up).

Conclusions:

• Informal caregivers (ICs) are integral to SDM for severe AS but often feel their role as discussion partners is not consistently recognized by healthcare professionals.
• Healthcare professionals should actively involve ICs in SDM discussions, focusing on the older patient's quality of life and personal context to facilitate personalized treatment decisions for severe AS.
• Enhancing IC involvement in SDM can lead to better QOL and psychological well-being for caregivers.