Surprisingly little is known about pain and other distressing symptoms experienced by patients' with end stage liver disease (ESLD) at the end of life and about the experience of their family members caring for them. This is particularly troublesome because patients dying with ESLD report pain comparable to the level of pain experienced by patients with advanced lung and colon cancer. Because liver impairment is associated with altered or decreased drug metabolism and many patients with ESLD have a prior history of alcohol and drug abuse, health care providers may undertreat pain in this population for fear of complicating the liver disease. Yet, the ways in which patients experience pain and other distressing symptoms at the end of life and the ? management of symptoms by them and the family members who care for them at home is essential knowledge for effective pain and symptom management. This innovative proposed pilot project is the first study to use a prospective, longitudinal descriptive study design. Both qualitative and quantitative methods will be used to examine the complexity of pain and other distressing symptoms experienced at the end of life by patients with ESLD. The proposed study has two specific aims: (1) to describe patterns of change over time in pain characteristics and other symptoms in patients with ESLD at the end of life as perceived by patients and their family members and (b) to describe pharmacological and non-pharmacological pain and symptom management strategies used by patients and their family members. This first step is needed to accomplish the long-term goal of improving pain and symptom control at the end of life for patients with ESLD. A sample of 20 patients with ESLD who are at the end of life and 20 of their family members (N = 40) will be enrolled through an outpatient clinic at a hospital that is a referral center, as well as having a liver transplant program for patients with liver disease. Data will be collected at 6 time points over a 6-month period using open-ended questions, standardized instruments completed during clinic/home interviews, and medical record reviews. Qualitative description will be the method of analysis for the qualitative data. Descriptive and inferential statistics will be the methods of analysis for the quantitative data. ? ? ?

National Institute of Health (NIH)
National Institute of Nursing Research (NINR)
Small Research Grants (R03)
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Nursing Science: Adults and Older Adults Study Section (NSAA)
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Bakos, Alexis D
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Oregon Health and Science University
Schools of Nursing
United States
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Hansen, Lissi; Leo, Michael C; Chang, Michael F et al. (2015) Symptom distress in patients with end-stage liver disease toward the end of life. Gastroenterol Nurs 38:201-10
Hansen, Lissi; Leo, Michael C; Chang, Michael F et al. (2014) Pain and self-care behaviours in adult patients with end-stage liver disease: a longitudinal description. J Palliat Care 30:32-40