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Prognostic Communication, Symptom Burden, Psychological Distress, and Quality of Life Among Patients With
John Donlan1, Alyson Kaplan2, Alan Noll3
1Department of Internal Medicine, Massachusetts General Hospital, Boston, Massachusetts.
Background & Aims:
Timely prognostic communication is a critical component of care for patients with decompensated cirrhosis (DC). However, few studies have examined the association of prognostic communication with symptoms, mood, and health-related quality of life (HRQOL) in this population.
Methods:
In this cross-sectional study of 218 outpatients with DC, we assessed their self-reported health status (terminally ill vs not terminally ill), their prognostic communication with their hepatologists (Prognosis and Treatment Preferences Questionnaire), symptom burden (Revised Edmonton Symptom Assessment Scale), psychological distress (Hospital Anxiety and Depression Scale), and HRQOL (Short-Form Liver Disease Quality of Life scale). We used linear regression to examine associations among patients' self-reported health status and prognostic communication with their symptom burden, psychological distress, and HRQOL.
Results:
Over 75% of patients reported that prognostic communication was helpful for making treatment decisions, maintaining hope, and coping with their disease. However, 81% had never discussed their end-of-life care wishes with their hepatologists. Overall, 36% self-reported a terminally ill health status, which was associated with higher symptom burden (B = 8.33; P = .003), anxiety (B = 1.97; P = .001), and depression (B = 2.01; P = .001) and lower HRQOL (B = -7.22; P = .002). Patients who wished they had more information on their prognosis reported higher symptom burden (B = 7.14; P = .010), anxiety (B = 1.63; P = .005), and depression (B = 1.50; P = .010) and lower HRQOL (B = -7.65; P = .001).
Conclusions:
Although most patients with DC highly valued prognostic communication, the majority reported never discussing their end-of-life care preferences with their hepatologists. Self-reported terminally ill health status and inadequate prognostic communication were associated with poorer symptoms, mood, and HRQOL. Interventions to improve prognostic communication while simultaneously providing adequate supportive care are warranted.
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