Li-Hung Tsai, MSN, RN Chang-Ming Lin, MS Shu-Chen Chiang, RN Chia-Ling Chen, MS Su-Jane Lan, RN Lai-Chu See, PhD

Symptoms and Distress Among Patients With Liver Cirrhosis but Without Hepatocellular Carcinoma in Taiwan ABSTRACT A cross-sectional study design was used to assess the items and frequency of physical symptoms and psychological distress among patients with liver cirrhosis (LC) but without hepatocellular carcinoma. Inpatients with LC were recruited from a medical center in northern Taiwan. Informants were asked to describe their frequency of symptoms and distress at 2 weeks before admission. During August 2008 and July 2009, 49 patients participated. The symptoms and distress were moderate, with a mean of 3.9 and 4.2 of 7, respectively. The mean ranking of subscales from the highest to lowest was abdominal symptoms, fatigue, fluid retention, loss of appetite, systemic symptoms, decreased attention, and bleeding. Symptoms and distress were significantly correlated (r = .59). The total scores of symptoms and distress were not associated with causes of the disease (p = .7644, p = .8548, respectively), disease severity (p = .7203, p = .3354, respectively), disease duration (p = .5820, p = .8184, respectively), or previous admission (p = .3094, p = .7365, respectively), but decreased attention was significantly associated with disease severity (p = .0317) and systemic symptoms were significantly associated with disease duration (p = .0267). The study found that physical symptoms and psychological distress are multidimensional and highly correlated. Our findings can be used to develop a symptom management program to relieve discomfort and indirectly improve the quality of life for individuals with LC.

L

iver cirrhosis (LC) is an important health issue around the world. The World Health Organization reported that LC caused 783,000 deaths globally in 2002 (Perz,

Received April 5, 2012; accepted September 15, 2012. About the authors: Li-Hung Tsai, MSN, RN, is Lecturer, Department of Nursing, Chang Gung University of Science and Technology, Kwei-Shan, Taoyuan, Taiwan. Chang-Ming Lin, MS, is Lecturer, Center of General Education, Chang Gung University of Science and Technology, Kwei-Shan, Taoyuan, Taiwan. Shu-Chen Chiang, RN, is Nurse, Department of Nursing, Zhongxiao Branch of Taipei City Hospital, Nangang District, Taipei, Taiwan. Chia-Ling Chen, MS, is Research Assistant, Biostatistics Core Laboratory, Molecular Medicine Research Center, Chang Gung University, KweiShan, Taoyuan, Taiwan. Su-Jane Lan, RN, is Nurse, Department of Nursing, Linkou Branch of Chang Gung Medical Foundation, Kwei-Shan, Taoyuan, Taiwan. Lai-Chu See, PhD, is Professor, Biostatistics Core Laboratory, Molecular Medicine Research Center, Department of Public Health, Chang Gung University, Kwei-Shan, Taoyuan, Taiwan. The authors declare no conflict of interest. Correspondence to: Lai-Chu See, PhD, Department of Public Health, Chang Gung University, 259 Wen-Hwa 1st Rd., Kwei-Shan, Taoyuan, Taiwan ([email protected]). DOI: 10.1097/SGA.0000000000000020 VOLUME 37 | NUMBER 1 | JANUARY/FEBRUARY 2014

Armstrong, Farrington, Hutin, & Bell, 2006). In the United States, there are more than 27,000 deaths due to LC every year (Mehta & Rothstein, 2009). In the United Kingdom, at least 7,000 new cases of LC were diagnosed each year from 1992 to 2001 (Sargent & Clayton, 2010). In Taiwan, LC is the number 8 cause of death, causing 5,153 (3.4%) deaths in 2011 (Ministry of Health and Welfare, Taiwan, 2012).

Background Liver cirrhosis is a consequence of the replacement of liver tissue by fibrosis, scar tissue, or regenerative nodules, leading to a loss of liver function. Liver cirrhosis is mainly caused by excessive alcohol consumption and chronic infection with hepatitis B virus (HBV) or hepatitis C virus (HCV). More importantly, LC precedes most cases of hepatocellular carcinoma (HCC). More than 70% of people with chronic HBV infection are Asian (Lai & Yuen, 2007; Pinto & Schub, 2010). Patients with chronic HBV infection in Taiwan are prone to liver cancer (Leu et al., 2009; Yang et al., 2008), whereas in Japan, patients with chronic HCV infection are more likely to develop liver cancer than those with alcohol-related LC (Toshikuni et al., 2009). 49

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Some patients with LC initially display nonspecific symptoms that do not directly indicate liver disease, such as lethargy, fatigue, anorexia, and nausea. However, as the disease progresses to portal hypertension, patients experience unpleasant signs and symptoms. These may include jaundice, pruritus, bleeding tendency, abdomen distension, ascites, peripheral edema, shortness of breath, and mental status changes (Lee & Grap, 2008; Sargent, 2006). These symptoms are associated with a poor quality of life and psychological distress (Bianchi et al., 2005; Bjørk & Nåden, 2008; Blackburn, Freeston, Baker, Jones, & Newton, 2007; Jorgensen, 2006; Kalaitzakis et al., 2006; Marchesini et al., 2001). Liver cirrhosis is generally irreversible. From the perspective of clinical care, preventing or treating signs and symptoms is key as there is no curative treatment for LC except for liver transplantation. Hence, it is important to find out about LC patients’ symptoms and distress so that management strategies can be recommended. The aims of this study were to assess the items and severity of physical symptoms and psychological distress among patients with LC to determine the correlation between physical symptoms and psychological distress, and examine the association of demographic characteristics and disease characteristics on physical symptoms and psychological distress. We hypothesized that there is a high correlation between physical symptoms and psychological distress, and a strong association between disease characteristics (cause, severity, and duration) and physical symptoms/psychological distress. Our findings are helpful for those who wish to develop a symptom management program to relieve LC patients of their discomfort and indirectly improve their quality of life.

patients 3–5 days after admission when their condition was stable.

Measurements of Physical Symptoms and Psychological Distress The scale of symptoms and distress among patients with LC was based on the literature and clinical observation from the first author (L.H.T.). There were 28 items in seven subscales for symptoms: (a) abdominal symptoms, (b) fluid retention, (c) fatigue, (d) loss of appetite, (e) systemic symptoms, (f) decreased attention, and (g) bleeding. There are 12 items in two subscales for distress: (1) worry and (2) low mood. The ranking used for each item for frequency of symptoms or distress that had occurred in the past two weeks was 1 (never), 2 (seldom), 3 (occasionally), 4 (frequently), 5 (usually), 6 (very often), and 7 (always). We grouped frequency of symptoms or distress for rankings 1–3 as mild, 4–5 as moderate, 6–7 as severe. Based on Kim’s study, frequency of an item occurrence was similar to intensity (Kim, Oh, Lee, Kim, Han, et al. 2006). Content validity was established by having five experts (physicians or clinical nurses from the Department of Gastroenterology and Hepatology in the study hospital) rate each item for appropriateness, comprehensiveness, and relevance using a 5-point scale (1 =not at all to 5 =extremely agree). The mean rating was over 4.6 and the content validity index (CVI) was between 80% and 100%. Cronbach’s alpha was .96 for the whole scale, .94 for the symptoms, .76–.88 for the seven subscales of symptoms, .95 for distress, and .93 and 0.89, respectively, for the two subscales of distress.

Methods Demographic and Disease Characteristics Patients In this study, purposive sampling was used to recruit patients who had LC but did not have HCC. Hospitalized patients with LC were recruited from the Department of Gastroenterology and Hepatology at a medical center in northern Taiwan. The inclusion criteria were patients who had been hospitalized because of LC or complications and were clearly conscious. Patients who had HCC or other major chronic diseases (such as cardiovascular diseases or diabetes mellitus) were excluded. The institutional review board of Chang Gung Memorial Hospital approved this research (95-1211B). Written or oral informed consent was obtained from all patients. Privacy and confidentiality were emphasized.

Demographic characteristics included gender, age, marital status, education level, employment before and after obtaining LC, history of cigarette smoking, and history of alcohol consumption. Disease characteristics included cause of LC, duration of LC, previous hospitalization due to LC, and disease severity. Disease severity was measured with the Child-Pugh classification based on serum bilirubin, albumin, prothrombin time, and the degree of ascites and encephalopathy. The Child-Pugh score ranges from 5 to 15 and is categorized into three groups: A (5–6), B (7–9), and C (10–15). Group C is the most severe class (Pugh, Murray-Lyon, Dawson, Pietroni, & Williams, 1973). The disease information was abstracted from the medical records by the first author (L.H.T.).

Study Design

Statistical Analysis

A cross-sectional study design was used and a selfadministered questionnaire was given to the eligible

The Pearson correlation coefficient (r) was used to quantify the association between symptoms and

50 Copyright © 2014 Society of Gastroenterology Nurses and Associates

Gastroenterology Nursing

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distress. An independent t test and analysis of variance were conducted to examine the association between demographic/disease characteristics and symptoms/ distress. A sample size of 40–50 was needed to achieve 83%–90% power to detect a difference between zero correlation and medium correlation (0.40) with a significance level of .05 (Zar, 1984).

Results Demographic Characteristics

TABLE 1. Demographic Characteristics of Patients With Liver Cirrhosis (n = 49) Characteristic

n

%

Male

35

71.4

Female

14

28.6

30–39

11

22.5

40–49

13

26.5

50–59

17

34.7

60+

8

16.3

Gender

Age (years)

During August 2008 and July 2009, 49 patients participated in this study. There were more men (n = 35; 71.4%) than women (n = 14; 28.6%). The mean age was 50.9 years. About half of the patients (n = 26) were married. One-third (n = 16) had completed senior high school or above education. About two-thirds (n = 31) were employed before obtaining LC, and 24.5% (n = 12) remained employed after becoming sick. About 61% (n = 30) had a history of alcohol use and 57.1% (n = 21) previously smoked cigarettes (Table 1).

Marital status

Disease Characteristics

Education

Slightly more than half (59.2%) of the patients developed LC because of alcoholism alone, followed by chronic infection of HBV alone (18.4%) and chronic infection of HCV alone (16.3%). Regarding disease severity, 42.9% were Child-Pugh B and 51% were Child-Pugh C. About one-third (36.7%) had LC more than 3 years. Most patients (87.8%) had been hospitalized because of LC and its complication (Table 2).

Physical Symptoms In total, the mean rating of symptoms was 3.9 out of 7. For the subscale of abdominal symptoms, the mean rating was 4.7. Within abdominal symptoms, distension/bloat was highest (5.2), followed by abdominal discomfort (5.0). For the subscale of fluid retention, the mean rating was 4.4. Among common symptoms within fluid retention, ascites was highest (4.9), followed by weight gain (4.7), leg edema (4.0), and decreased urine (4.0). For the subscale of fatigue, the mean rating was 4.4. Symptoms within fatigue revealed that exhaustion was highest (4.9), followed by daytime sleepiness (4.3), allday drowsiness (4.3), tiredness (4.3), and weakness (especially when lifting heavy objects) (4.1). For the subscale of loss of appetite, the mean rating was 3.9. Among symptoms noted within loss of appetite were feeling annoyed from dietary restrictions (4.2), followed by complaints about bland tasting food (4.0) and inability to eat as much as before (4.0). For the subscale of systemic symptoms, the mean rating was 3.7. Within systemic symptoms, dry mouth VOLUME 37 | NUMBER 1 | JANUARY/FEBRUARY 2014

Mean ± SD

50.9 ± 13.2

Single

4

8.2

Married

26

53.1

Divorced

10

20.4

Other

9

18.4

Junior high or below

33

67.4

Senior high or above

16

32.7

No

37

75.5

Yes

12

24.5

No

18

36.7

Yes

31

63.3

No

19

38.8

Yes

30

61.2

No

28

57.1

Yes

21

42.9

Current employment

Employment prior to liver cirrhosis

Alcohol history

Cigarette history

was highest (4.4), followed by itching of the skin (3.7), shortness of breath (3.6), and dizziness (3.5). For the subscale of decreased attention, the mean rating was 3.5. Within decreased attention, acting slower was highest (3.7), followed by inability to concentrate (3.6), and speaking slower (3.1). For the bleeding subscale, the mean rating was 2.9. Within symptoms for bleeding, complaints about bruised were highest (3.6), followed by black/tarry stool (2.9), bleeding gums (2.7), and nose bleeds (2.6) (Table 3). 51

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TABLE 2. Disease Characteristics of Liver Cirrhosis (n = 49)

TABLE 3. Physical Symptoms of Patients With Liver Cirrhosis (n = 49)

Characteristic

Symptom

n

%

Cause of liver cirrhosis

Mean ±SD

(1) Abdominal symptoms

Rank

4.7 ± 1.4

Alcoholic

29

59.2

Distension/bloat

9

18.4

5.2 ± 1.5

1

Hepatitis B infection

Discomfort

8

16.3

5.0 ± 1.7

2

Hepatitis C infection

Pain

2

4.1

4.0 ± 1.6

9

Primary biliary Autoimmune

1

2.0

Severity

(2) Fluid retention

4.4 ± 1.3

Ascites

4.9 ± 1.7

3

Weight gain

4.7 ± 1.7

4

Child-Pugh A: 5–6

3

6.1

Leg edema

21

42.9

4.0 ± 1.7

9

Child-Pugh B: 7–9

Decreased urine

25

51.0

4.0 ± 1.7

9

Child-Pugh C: 10–15

Exhaustion 12

24.5

4.9 ± 1.3

3

Symptoms and distress among patients with liver cirrhosis but without hepatocellular carcinoma in Taiwan.

A cross-sectional study design was used to assess the items and frequency of physical symptoms and psychological distress among patients with liver ci...
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