Association Between Awareness of Disease Incurability and Patient-Reported Outcomes in Heart Failure: A Cohort Study

OBJECTIVES: To examine awareness of disease incurability among patients with heart failure over 24 months, and its associations with patient characteristics, and patient-reported outcomes (distress, emotional, and spiritual well-being).

METHODS: This study analyzed 24-month data from a prospective cohort study of 251 inpatient patients with heart failure (New York Heart Association class III/IV) recruited from two tertiary care institutions in Singapore. Patients were asked to report if their doctor told them they were receiving treatment to cure their condition. “No” responses were categorized as being aware of disease incurability while “Yes”, and “Uncertain” were categorized as being unaware and being uncertain about disease incurability, respectively. We used mixed-effects multinomial logistic regression to investigate the associations between awareness of disease incurability and patient characteristics and mixed-effects linear regressions to investigate associations of disease incurability awareness with patient outcomes.

RESULTS: The percentage of patients who were aware of disease incurability increased from 51.63% at baseline to 76.36% at 24-month follow-up (p<0.001). Compared to being unaware of disease incurability, being aware was associated with Malay ethnicity (relative risk ratio (RRR)=0.22; p<0.001), Indian ethnicity (RRR=0.26; p=0.001), older age (RRR=1.04; p=0.005), adequate self-care confidence (RRR=5.06; p<0.001), participation in treatment decision-making (RRR=2.13; p=0.006), and higher education (RRR=2.00; p=0.033), financial difficulty (RRR=1.18; p=0.020), and symptom burden (RRR=1.08; p=0.001). Compared to being unaware of disease incurability, being aware was associated with higher emotional well-being (ß=0.76; p=0.024) while being uncertain about disease incurability was associated with poorer spiritual well-being (ß=-3.16; p=0.006).

CONCLUSIONS: Our findings support the importance of being aware of disease incurability, addressing uncertainty around disease incurability among patients with heart failure, and helping patients make informed medical decisions. The findings are important to Asian and other cultures where the prognosis disclosure to terminally ill patients is generally low with an intention to “protect” patients.