Prognostic Communication, Symptom Burden, Psychological Distress, and Quality of Life Among Patients with Decompensated Cirrhosis

John Donlan; Alyson Kaplan; Alan Noll; Kedie Pintro; Nora Horick; Chengbo Zeng; Maria Edelen; Zainab Soetan; Cameron Comrie; Teresa Indriolo; Lucinda Li; Enya Zhu; Malia E Armstrong; Leah L Thompson; Joyce Zhou; Michelle S Diop; Nancy Mason; Kirsten G Engel; Michaela Rowland; Sara Kenimer; Karen O'Brien; Jennifer C Lai; Vicki Jackson; Raymond T Chung; Areej El-Jawahri; Nneka N Ufere

doi:10.1016/j.cgh.2024.10.017

Prognostic Communication, Symptom Burden, Psychological Distress, and Quality of Life Among Patients with Decompensated Cirrhosis

Clin Gastroenterol Hepatol. 2024 Nov 19:S1542-3565(24)01044-9. doi: 10.1016/j.cgh.2024.10.017. Online ahead of print.

Authors

John Donlan¹, Alyson Kaplan², Alan Noll³, Kedie Pintro⁴, Nora Horick⁴, Chengbo Zeng⁵, Maria Edelen⁵, Zainab Soetan⁴, Cameron Comrie⁶, Teresa Indriolo⁷, Lucinda Li⁷, Enya Zhu⁷, Malia E Armstrong⁷, Leah L Thompson⁸, Joyce Zhou¹, Michelle S Diop⁹, Nancy Mason⁹, Kirsten G Engel⁹, Michaela Rowland⁹, Sara Kenimer⁹, Karen O'Brien⁹, Jennifer C Lai¹⁰, Vicki Jackson⁹, Raymond T Chung⁷, Areej El-Jawahri¹¹, Nneka N Ufere¹²

Affiliations

¹ Department of Internal Medicine, Massachusetts General Hospital, Boston, MA, USA.
² Abdominal Transplant Institute, Department of Surgery, Tufts Medical Center, Boston, MA, USA.
³ Division of Gastroenterology, Hepatology and Nutrition, University of Pittsburgh, Pittsburgh, PA, USA.
⁴ MGH Biostatistics, Massachusetts General Hospital, Boston, MA.
⁵ PROVE Center, Brigham and Women's Hospital, Boston, MA, USA.
⁶ Department of Surgery, Massachusetts General Hospital, Boston, MA, USA.
⁷ Liver Center, Gastrointestinal Division, Massachusetts General Hospital, Boston, MA, USA.
⁸ Department of Radiation Oncology, Brigham and Women's Hospital, Boston, MA, USA.
⁹ Division of Palliative Care and Geriatric Medicine, Massachusetts General Hospital, Boston, MA, USA.
¹⁰ Division of Gastroenterology and Hepatology, University of California San Francisco, CA, USA.
¹¹ Division of Hematology and Oncology, Massachusetts General Hospital, Boston, MA, USA.
¹² Liver Center, Gastrointestinal Division, Massachusetts General Hospital, Boston, MA, USA. Electronic address: nneka.ufere@mgh.harvard.edu.

PMID: 39571876
DOI: 10.1016/j.cgh.2024.10.017

Abstract

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, 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=0.003), anxiety (B=1.97, p=0.001), and depression (B=2.01, p=0.001) and lower HRQOL (B=-7.22, p=0.002). Patients who wished they had more information on their prognosis reported higher symptom burden (B=7.14, p=0.010), anxiety (B=1.63, p=0.005), and depression (B=1.50, p=0.010) and lower HRQOL (B=-7.65, p=0.001).

Conclusions: While 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.

Keywords: End-stage liver disease; advance care planning; goals of care conversations; palliative hepatology.