Why the study?
The study sought insight into the experiences, preferences, and needs of informal caregivers regarding shared decision-making in severe aortic stenosis among patients aged 70 years or older, and its effect on caregiver quality of life and distress.
What are the roles, needs, and effects of shared decision-making on quality of life for informal caregivers of older patients with severe aortic stenosis?
What are the roles, needs, and effects of shared decision-making on quality of life for informal caregivers of older patients with severe aortic stenosis?
Informal caregivers play a valuable role in shared decision-making for severe aortic stenosis, and higher perceived involvement is associated with better caregiver quality of life.
Assessing caregiver SDM preferences may aid QOL in severe AS; leaves open causal effects and needs prospective trials.
OBJECTIVE: To provide insight into experiences, preferences and needs of informal caregivers (ICs) regarding shared decision-making (SDM) in severe aortic stenosis (AS) of patients ≥ 70 years, and the effect of the level of perceived SDM on ICs' quality of life (QOL) and distress. METHODS: Multiple methods study consisting of a questionnaire at baseline and 3-month follow-up and focus groups. RESULTS: Ninety-nine ICs (67.6 ± 11.7 years) completed the baseline questionnaire, eighty-two ICs the follow-up questionnaire, ten ICs (70.6 ± 12.6 years) participated in two focus groups. ICs perceived that identifying them as discussion partners and addressing patients' daily lives were least discussed with professionals (26.3 %; 59.6 %). Most ICs (63.9 %) preferred a collaborative decision-making (DM) role. The level of perceived SDM was positively associated with baseline QOL social relations (p = .038), and follow-up QOL psychological health (p = .048) and environment (p = .024). ICs experienced three roles in SDM: supporters in DM, stimulators in clarifying patient's personal context, and DM partners. CONCLUSION: ICs play valuable roles in SDM for severe AS, but feel professionals do not consistently identify them as discussion partners. PRACTICE IMPLICATIONS: Professionals should involve ICs in SDM for discussing older patient's QOL and personal context, which can inform personalized decisions regarding severe AS treatment.
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Beek-Peeters et al. (2024) studied this question.
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