A Longitudinal Study of the Association of Awareness of Disease Incurability with Patient-Reported Outcomes in Heart Failure.

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

Methods: This study analyzed 24-mo data from a prospective cohort study of 251 patients with heart failure (New York Heart Association class III/IV) recruited from inpatient wards in Singapore General Hospital and National Heart Centre 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 with patient outcomes.

Results: The percentage of patients who were aware of disease incurability increased from 51.6% at baseline to 76.4% at 24-mo follow-up (P < 0.001). Compared with being unaware of disease incurability, being aware was associated with older age (relative risk ratio [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), higher education (RRR = 2.00; P = 0.033), financial difficulty (RRR = 1.18; P = 0.020), symptom burden (RRR = 1.08; P = 0.001), and ethnicity (P < 0.05). Compared with being unaware of disease incurability, being aware was associated with higher emotional well-being (β = 0.76; P = 0.024), while being uncertain about disease incurability was associated with poorer spiritual well-being (β = -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.

Highlights: Our 24-mo study with heart failure patients showed an increase from 52% to 76% in patients being aware of disease incurability.Compared with being unaware of disease incurability, being aware was associated with higher emotional well-being, while uncertainty about disease incurability was associated with poorer spiritual well-being.