title: Symptom distress in patients with end-stage liver disease toward the end of life.
abstract: Research on symptom distress experienced by patients with end-stage liver disease at the end of life is limited. The aims of the study were to describe presence, frequency, severity, and distress of symptoms in patients with end-stage liver disease toward the end of life and to describe the variability in psychological and physical symptom distress between and within patients over time. This study used a prospective, longitudinal descriptive design. Data were collected from 20 patients once a month for up to 6 months. Participants completed the Memorial Symptom Assessment Scale, which reports a total score, a Global Distress Index score, and a psychological and a physical distress score. Patients reported lack of energy, pain, difficulty sleeping, and feeling drowsy as the most frequent, severe, and distressing symptoms. Global Distress Index mean scores (measured on a 1-4 scale) ranged from 2.6 to 2.9 across time. There was notable variability in psychological and physical distress scores between and within patients across time. Gaining knowledge about the prevalent symptoms experienced by patients with end-stage liver disease and the trajectory of these symptoms is crucial for designing interventions that optimize well-being in patients with end-stage liver disease as they are approaching death.
authors.affiliation: Lissi Hansen, PhD, RN, is Associate Professor, School of Nursing, SN-ORD, Oregon Health & Science University, Portland, Oregon. Michael C. Leo, PhD, is Investigator, Kaiser Permanente Center for Health Research, Portland, Oregon. Michael F. Chang, MD, MSc, is Section Chief, Division of Gastroenterology & Hepatology, VA Portland Health Care System, and Assistant Professor of Medicine, Oregon Health & Science University, Portland, Oregon. Atif Zaman, MD, MPH, is Professor of Medicine, Vice Chair of Clinical Programs, Department of Medicine, and Section Chief, Division of Gastroenterology & Hepatology, Oregon Health & Science University, Portland, Oregon. Willscott Naugler, MD, is Assistant Professor of Medicine, Division of Gastroenterology & Hepatology, Oregon Health & Science University, Portland, Oregon. Jonathan Schwartz, MD, is Associate Professor of Clinical Medicine, Montefiore Medical Center, Albert Einstein College of Medicine, Bronx, New York.
authors.forename: Lissi
authors.initials: L
authors.lastname: Hansen
authors.forename: Michael C
authors.initials: MC
authors.lastname: Leo
authors.forename: Michael F
authors.initials: MF
authors.lastname: Chang
authors.forename: Atif
authors.initials: A
authors.lastname: Zaman
authors.forename: Willscott
authors.initials: W
authors.lastname: Naugler
authors.forename: Jonathan
authors.initials: J
authors.lastname: Schwartz
mesh_terms: D000368:Aged; D003643:Death; D058625:End Stage Liver Disease / Q000503:physiopathology* / Q000523:psychology; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D011446:Prospective Studies