Patient–Caregiver Treatment Preference Discordance and Its Association With Caregiving Burden and Esteem

BACKGROUND AND OBJECTIVES: Many patient–caregiver dyads report conflicting treatment decisions regarding preferences for life extension treatments and symptom management. It is possible that this discordance will lead to negative psychological outcomes including lowered caregiving esteem and increased caregiver burden. However, the relationships between treatment discordance among dyads and caregiver psychological outcomes are not well studied among advanced cancer patients—a gap this study aims to fill. RESEARCH DESIGN AND METHODS: Outcome variables included caregiver burden and caregiving esteem, measured via a modified 4-domain Caregiver Reaction Assessment Scale. The main independent variable was patient–caregiver treatment preference discordance, examined using questions adapted from an existing protocol. Analyses were conducted using multivariable regressions. RESULTS: A convenience sample of 285 patient–caregiver dyads were recruited from outpatient clinics at 2 tertiary hospitals in Singapore. The majority (60%) of patient–caregiver dyads reported discordant treatment preferences. Discordance in this study arose because caregivers wanted a balance between life extension and symptom management while patients preferred life-extending treatment. In multivariable analyses, discordance predicted caregiver burden arising from impact on caregiver schedule and health (β = 0.16, p = .07) and lack of family support (β = 0.13, p = .04). DISCUSSION AND IMPLICATIONS: Theoretically, this study provided a more nuanced understanding of how dyad discordance may worsen the burdens felt by caregivers, and which aspects of their lives (i.e., burden due to impact of caregiver schedule and health and lack of family support) are most affected. Our findings can aid in establishing therapeutic interventions targeted toward improving communication skills and encouraging end-of-life discussions among patients, caregivers, and their health care providers. The importance of establishing and improving therapy programs specifically targeted toward caregivers was also underlined.