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Symptom experience, psychological distress, and quality of life in Korean patients with liver cirrhosis: A cross-sectional survey
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International Journal of Nursing Studies 43 (2006) 1047–1056 www.elsevier.com/locate/ijnurstu
Symptom experience, psychological distress, and quality of life in Korean patients with liver cirrhosis: A cross-sectional survey Soo Hyun Kima,, Eui Geum Ohb, Won Hee Leeb a
Quality of Cancer Care Branch, Research Institute and Hospital, National Cancer Center, 809 Madu-dong, Ilsandong-gu, Goyang-si, Gyeonggi-do, 411-769, Korea b Yonsei University College of Nursing, 134 Shinchon-dong, Seodaemun-gu, Seoul 120-752, Korea Received 27 April 2005; received in revised form 8 November 2005; accepted 15 November 2005
Abstract Background: In patients with cirrhosis, quality of life (QOL) is seriously impaired and associated with particular symptoms such as fatigue, muscle cramps or pruritus. However, there is lack of evidence about the overall symptom experience in patients with cirrhosis, in addition, most studies on QOL have focused only on identifying the relationship between disease-related variables such as disease severity, etiology or serological markers and QOL. Objectives: This study aimed to describe symptom experience, psychological distress, and QOL in Korean patients with liver cirrhosis, and to identify the factors that predict their quality of life. Design: This study is a cross-sectional, descriptive design. Settings: The participants were recruited over a 2-month period, September 27 to November 25, 2003 from the outpatient or inpatient departments of gastroenterology at two large university hospitals in Seoul, Korea. Participants: There were 129 patients, mean age was 53.6 years, who met eligibility criteria and agreed to participate in the study. Methods: Symptom experience was measured with a scale developed by the researchers through a literature review on liver cirrhosis. Psychological distress was measured with the anxiety/depression category from the modified Korean version of the profile of mood states (POMS) [Shin, 1996. A study on verification of the profile of mood states (POMS) for Korean elders. Journal of Korean Academic Nursing 26, 743–758], and QOL was measured with quality of life index (QLI) developed by Ferrans and Powers [1985, Quality of life index: development and psychometric properties. Advances in Nursing Science 8, 15–24. www.uic.edu.orgs/qli]. Results: The results indicated that (1) overall symptom experience score was relatively low, major symptoms needing a management were fatigue, ascites and/or edema, and muscle cramps; (2) the mean score of psychological distress revealed mild to moderate levels of anxiety and depression; (3) quality of life was found to be seriously impaired; (4) psychological distress, employment status, and symptom experience were significant predictors of QOL, and explained 29.8% of the total variance. Conclusion: These results indicate that symptom management, which includes attention to associated psychological intervention, is imperative for improvement in the QOL in Korean patients with liver cirrhosis. r 2005 Elsevier Ltd. All rights reserved. Keywords: Liver cirrhosis; Psychological distress; Quality of life; Symptom
Corresponding author. Tel.: +82 31 920 2195; fax: +82 31 920 2199.
E-mail address: [email protected] (S.H. Kim). 0020-7489/$ - see front matter r 2005 Elsevier Ltd. All rights reserved. doi:10.1016/j.ijnurstu.2005.11.012
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What is already known about the topic?
There
is no examination about overall symptom experience in patients with LC. In western countries, quality of life (QOL) in patients with LC is seriously impaired. Significant factors relating to QOL in patients with LC were a higher Child-Pugh score (disease severity), symptoms such as muscle cramps, pruritus, and fatigue, and age. Gender, etiology of LC, the comorbid conditions, and the duration of disease did not show the significant relationship with QOL in patients with LC. Patients with LC had serious levels of depression or anxiety. However, less is known about the relationship among the psychological distress, symptom experience, and QOL.
What this paper adds
Major
symptoms needing a management were fatigue, ascites and/or edema, and muscle cramps. In Asian patients with LC, QOL was also seriously impaired. All demographic variables except employment status were not associated with QOL, only Child-Pugh classification among the disease-related variables showed a significant relationship with QOL. Poor QOL was influenced by psychological distress, employment status, and symptom experience.
1. Introduction Liver cirrhosis (LC) is characterized by fibrosis and conversion of normal liver architecture into structurally abnormal nodules (Anthony et al., 1978). It originates from viral infections and/or alcohol abuse. According to the World Health Organization (2000), there are an estimated 350 million carriers of Hepatitis B and 170 million carriers of Hepatitis C throughout the world and 75% of carriers of Hepatitis B are Asian. In Korea, the mortality from liver disease is fifth nationally, and first for men in their 40’s (KNSO, 2002). Three million people (5–6% of the population) in Korea are infected with Hepatitis B which is the main cause of LC. In addition, Han et al. (2000) reported that the incidence of alcoholic LC has increased rapidly in the 1990s in Korea. The mortality from liver disease in Korea is the third highest in the 31 countries in the Organization for Economic Cooperation and Development (KNSO, 2002). These epidemiological data indicate that LC is a significant chronic disease that must be addressed by health care providers in Korea.
Patients with LC suffer from fatigue, loss of self-esteem, inability to function at work, anxiety, depression, and other emotional problem that profoundly decrease their quality of life (QOL) (Schiff et al., 1999). In a study by Younossi et al. (2000a), patients with LC had similar negative levels of health-related quality of life (HRQL) when compared with patients with chronic obstructive pulmonary disease (COPD) or congestive heart failure. Several studies demonstrate that LC negatively impact HRQL, specific factors that contribute to impaired HRQL in patients with LC were found; a higher Child-Pugh score (disease severity) (Gralnek et al., 2000; Wiesinger et al., 2001; Younossi et al., 2000a, b, 2001a, b), the presence of certain symptoms such as muscle cramps, pruritus, and fatigue (Marchesini et al., 2001; Prince et al., 2000), and age (Younossi et al., 2000b, 2001a). Although several symptoms were critical factors influencing QOL, there is no evaluation about overall symptom experience in patients with LC. Gender, etiology of LC, the comorbid conditions, and the duration of disease were found to have little further impact in previous studies. Several studies revealed that patients with LC had serious levels of depression or anxiety and these psychological distresses were found to be significant factors relating to functional status or QOL (Aghanwa and Denis, 2002; Singh et al., 1997). There is accumulating evidence to suggest that psychological distress is a cofactor influencing outcome and adversely impacting morbidity and mortality in a variety of medical conditions (Singh et al., 1997). Although psychological variables might be important factors relating to QOL in patients with LC, most studies on QOL have focused only on disease-related variables. To develop effective interventions to enhance QOL in patients with LC, there is a need to examine QOL using a multidimensional framework integrating demographic, physical, and psychological factors. Furthermore, most studies on symptoms, psychological distress including anxiety and depression, and QOL in patients with LC have been evaluated in Western countries. There could be differences in the levels or relationships of these variables in this study because of cultural differences. The aims of this study, therefore, were to describe symptom experience, psychological distress, and QOL in Korean patients with LC, and to identify the extent to which demographic, physical, and psychological factors predict QOL.
2. Method 2.1. Design and sample This study is a cross-sectional, descriptive design. The participants were recruited over a 2-month period,
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September 27 to November 25, 2003 from the outpatient or inpatient departments of gastroenterology at two large university hospitals in Seoul, Korea. Eligible patients were required: (1) to have been pathologically diagnosed as having liver cirrhosis; (2) to be 20 years or older; (3) not to be suffering from any other chronic diseases (e.g. diabetes mellitus, end-stage renal disease, congestive heart failure, cerebral vascular disease); (4) to have not been treated with HCC (e.g. transhepatic arterial chemoembolization, radiofrequency ablation, or Holmium therapy) within the past month. There were 167 patients who met the eligibility criteria for this study. Of those eligible patients, 129 (77.2%) agreed to participate in the study. Reasons for nonparticipation included: patient had other chronic diseases (10.2%), patient was feeling too ill or tired (9.6%) or patient was not interested in participating in the study (3.0%). 2.2. Procedures This study was approved by the Institutional Review Board and the Ethics Committee of the two hospitals. A pilot test was employed with five patients in the outpatient department, and the researchers modified difficult or confusing items identified from the pilot test. Potential participants were identified by physicians and nurses providing care. Those who meet the inclusion criteria and were interested in participating were asked to contact a researcher. With the help of the clinical staff, patients were approached and study purpose was described. Each patient who agreed to participate was given a consent form and all questions were answered. Almost all interviews were completed in approximately 20 min. For clinical variables, the Child-Pugh score was obtained from medical records, but if not present, the researcher could calculate the score from laboratory data, radiological studies, and physical assessment. 2.3. Measurements 2.3.1. Symptom experience Symptom experience was measured multidimensionally using a scale developed by the researchers based on the Theory of Unpleasant Symptoms (Lenz et al., 1997). Lenz et al. (1997) suggested three dimensions relevant to symptom evaluation: (1) frequency with which the symptom occur, (2) intensity of the symptom, and (3) the degree of distress for the symptom. The scale is a self-report measurement that includes 18 symptoms: anorexia, nausea and/or vomiting, dyspepsia, ascites and/or edema, shortness of breath (SOB) and/or dyspnea, dry mouth, itching, bodily pain, muscle cramps, right upper quadrant (RUQ) pain, fatigue, dark urine, urinary difficulty, bruising, tarry stools, drowsiness, decrease in memory, and change in appearance (e.g. jaundice, abdominal distension). Each of the
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18 items was measured for three dimensions: frequency, intensity, and distress on a four-point scale (0 ¼ never experienced to 3 ¼ extremely frequent/ extremely strong/ extremely distressful). The symptom experience score was calculated by adding the scores of three dimensions that are sum of the raw scores of 18 symptoms. Thus, the range of symptom experience score is from 0 to 162 with higher scores indicating a more severe symptom experience. For internal consistency reliability for symptom experience the Cronbach’s alpha was 0.82. 2.3.2. Psychological distress Psychological distress was measured with the category of anxiety/depression from the modified Korean version of the Profile of Mood States (POMS) developed by Shin (1996). This scale consists of 34 items with 3 subcategories: anxiety/depression (21 items); anger (8 items); vigor (5 items). Participants responded on a scale ranging from 0 (not at all) to 4 (extremely) for each item. Thus, total scores range from 0 to 84, with higher scores indicating higher psychological distress. The modified Korean version of POMS is reported to be valid and reliable for Koreans (Shin, 1996). In this study, for internal consistency reliability for the 21 items the Cronbach’s alpha was 0.95. 2.3.3. QOL QOL was measured with the Quality of life IndexGeneric version (QLI; Ferrans and Powers, 1985). QLI is a 33-item scale in two parts: satisfaction with various aspects of life and the importance of these same aspects. All items are scored on a six-point scale, ranging from ‘‘very dissatisfied’’ to ‘‘very satisfied’’ and ‘‘very unimportant’’ to ‘‘very important’’. And then scores are calculated by weighting the satisfaction item with its corresponding importance item. The rationale for the scoring scheme is based on an individualistic view that QOL would be better for those who are satisfied with aspects of life they value and lower for those who are dissatisfied with valued aspects of life (Ferrans, 1996). A total score can be calculated as well as subscores for the four domains; health and functioning, social and economic, psychological and spiritual, and family. The score range is 0–30, with the higher score representing better QOL. The evidence for psychometric properties of the QLI has been documented. Internal consistency reliability for the QLI was supported by Cronbach’s alphas ranging from .84 to .98 across 26 studies (www.uic.edu.orgs/qli). In this study, for internal consistency reliability for QLI the Cronbach’s alpha was 0.86. 2.4. Statistical analysis Data analysis was performed using SPSS version 12.0. Distribution plots for each variable were inspected.
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Examination of the obtained normal probability plots indicated that distributions met the assumption of normality for all variables except for psychological distress and symptom experience. To improve normality, a log transformation was applied to psychological distress and symptom experience. Descriptive statistics were used to evaluate the demographic and clinical characteristics, and the level of symptom experience, psychological distress, and QOL. Difference between major study variables and other variables selected by demographic and clinical characteristics were analyzed through independent t-test and ANOVA. Finally, assumptions of multiple regression were examined, multicollinearity issues were considered, and independent variables were selected based on a correlation matrix. Subsequently, a stepwise multiple regression was applied to determine how much of the variance in QOL was explained by the selected independent variables.
Table 1 Demographic and clinical characteristics of participants (n ¼ 129) Characteristics (M7SD) Age (years) 53.6179.29
Demographic and clinical characteristics are presented in Table 1. A total of 129 LC patients with a mean age of 53.61 (SD ¼ 9.29) years participated in the study. Most of the participants were men (80.6%), married (90.7%), and had attained a moderate level of education (55.1% middle or high school, 32.6% college or university). The number of patients who were employed (50.4%) or not employed (49.6%) was almost equal. Child-Pugh score indicates severity of LC and is based on serum bilirubin and albumin levels, prothrombin time, the degree of ascites and encephalopathy (Pugh et al., 1973). The score can range from 5 to 15 with higher scores indicating greater severity. The Child-Pugh score identifies three clinical classifications: Child A (from 5 to 6), Child B (from 7 to 9), and Child C (from 10 to 15). Child C is the most severe class. Reported sensitivity and specificity for this scale are about 90% (Kim, 2000). In this study, the mean score of the Child-Pugh score was 7.91 (SD ¼ 2.40) which indicates moderate severity. The patients were distributed evenly in each severity classification: Child A (38.0%), Child B (34.9%), and Child C (27.1%). In terms of etiology, the patients with LC from hepatitis B (LC-B) (82.2%) were most prevalent. The percentage of patients who also had HCC was 41.1% and patients without HCC, 58.9%. Time since diagnosis ranged from 1 month to 15 years, with a mean score of 3.76 (SD ¼ 3.23) years. The number of hospitalizations ranged from 0 to 25, with a mean score of 3.39 (SD ¼ 3.31). 3.2. Descriptive statistics and correlates of the study variables The mean score (SD) for the major study variables is presented in Table 2, and the correlates are shown in
31–40 41–50 51–60 61–
N
%
10 43 47 29
7.8 33.3 36.4 22.5
Gender
Men Women
104 25
80.6 19.4
Marital status
Never married Married Widowed
3 117 9
2.3 90.7 7.0
Level of education
No education Elementary school Middle school High school College/University
2 14 26 45 42
6 10.9 20.2 34.9 32.6
Employment
Unemployed Employed
65 64
50.4 49.6
Monthly income
p$910 $910–$1820 $1820–$2730 X$2730
36 21 29 43
27.9 16.3 22.5 33.3
Child-Pugh classification
Child A Child B Child C
49 45 35
38 34.9 27.1
Etiology of LC
LC-Ba LC-Cb LC-Ac
106 11 12
82.2 8.5 9.3
Status with or without HCCd
LC without HCC LC with HCC
76 53
58.9 41.1
3. Results 3.1. Participants
Classification
Time since diagnosis (years) 3.7673.23 a
LC-B: LC from hepatitis B. LC-C: LC from hepatitis C. c LC-A: LC from alcohol. d HCC: Hepatocellular carcinoma. b
Table 4. The results for each study variables are as following. 3.2.1. Symptom experience The overall symptom experience score (M ¼ 41:67, SD ¼ 24.71) indicates that patients’ experience was relatively low. Table 3 shows the rank order of individual symptom experience overall and for each of the three dimensions. Among the individual symptoms, fatigue had the highest score followed by ascites and/or
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Table 2 Descriptive statistics of the study variables (n ¼ 129) Variables
Mean
SD
Actual range
Possible range
Symptom experience Psychological distress Quality of life Health-functioning Socioeconomic Psychological-spiritual Family
41.67 28.65 18.10 16.40 18.36 17.77 22.36
24.71 18.82 2.77 3.81 3.40 4.02 3.77
3–129 1–78 9.6–24.6 7.8–26.5 8.1–27.5 1.0–24.6 10.8–30
0–162 0–84 0–30 0–30 0–30 0–30 0–30
Table 3 Mean (SD) score of overall and dimensional symptom experience (n ¼ 129) Rank
Overalla
Dimension of symptom experience Frequencyb
Intensityb
Distressb Fatigue (1.5671.01) Muscle cramps (1.1371.11) Ascites/edema (1.0271.09) Change of appearance (0.9871.02) Dry mouth (0.9870.85)
1 2
Fatigue (5.1672.94) Ascites/edema (3.3673.38)
Fatigue (1.9571.13) Ascites/edema (1.2271.24)
3
Muscle cramps (3.3673.17)
4
Dry mouth (3.0872.61)
Change of appearance (1.1271.24) Dry mouth (1.0870.97)
Fatigue (1.6670.97) Muscle cramps (1.1571.11) Ascites/edema (1.1171.11) Dry mouth (1.0270.89)
5
Muscle cramps (1.0871.04)
Bruising (0.9970.88)
6
Change in appearance (3.0572.99) Bruising (2.9572.50)
Bruising (1.0770.98)
7 8
Decrease in memory (2.5772.78) Anorexia (2.5773.20)
Dark urine (1.0071.19) Decrease in memory (0.9171.01)
9
Dark urine (2.3672.63)
Anorexia (0.8871.14)
Change of appearance (0.9570.97) Anorexia (0.8771.10) Decrease in memory (0.8570.95) Dark urine (0.7870.92)
10 11
Itching (2.2672.73) SOB/dyspnea (2.2072.95)
Itching (0.8171.02) SOB/dyspnea (0.7471.04)
12 13 14 15
Dyspepsia (1.9972.44) Drowsiness (1.6272.38) RUQ pain (1.3572.18) Nausea/vomiting (1.2472.08)
Dyspepsia (0.6770.84) Drowsiness (0.5370.80) RUQ pain (0.4370.71) Nausea/vomiting (0.4370.74)
16 17 18
Bodily pain (1.0972.31) Tarry stools (0.9471.97) Urinary difficulty (0.5371.58)
Bodily pain (0.3370.73) Tarry stools (0.2770.57) Urinary difficulty (0.2070.59)
a
Itching (0.7470.93) SOB/dyspnea (0.7170.96) Dyspepsia (0.6870.85) Drowsiness (0.5370.82) RUQ pain (0.4770.79) Nausea/vomiting (0.4170.70) Bodily pain (0.3870.81) Tarry stools (0.3370.73) Urinary difficulty (0.1870.55)
Bruising (0.8870.78) Anorexia (0.8171.06) Decrease in memory (0.8170.91) SOB/dyspnea (0.7571.00) Itching (0.7170.91) Dyspepsia (0.6470.80) Dark urine (0.5970.70) Drowsiness (0.5570.86) RUQ pain (0.4470.75) Nausea/vomiting (0.4070.68) Bodily pain (0.3870.83) Tarry stools (0.3370.75) Urinary difficulty (0.1670.48)
Possible range: 0–9. Possible range: 0–3. SOB, Shortness of Breath; RUQ, right upper quadrant.
b
edema, muscle cramps, dry mouth, and change in appearance. In terms of symptom frequency, fatigue was most frequent followed by ascites and/or edema, change in appearance, dry mouth, and muscle cramps. For symptom intensity, fatigue was also most intense followed by muscle cramps, ascites and/or edema, dry mouth, and bruising. For symptom distress, fatigue was
also most distressing followed by muscle cramps, ascites and/or edema, change in appearance, and dry mouth. Examining the relationships between symptom experience and demographic and clinical variables showed, a significant difference for symptom experience according to Child-Pugh classification (F ¼ 44:780, po0:001) (Table 4). Post hoc test revealed that Child C class
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Table 4 Correlates of symptom experience, psychological distress, and QOL in participants (n ¼ 129) Variables
Classification
N
Symptom experiencea Mean (SD)
Age
31–40 41–50 51–60 61–
Gender
Men Women
Marital status
Never married Married Widowed
Level of Education
No education Elementary school Middle school High school College/University
Employment status
10 43 47 29
43.50 40.72 42.91 40.45
t or F (p)
Psychological distressb Mean (SD)
t or F (p)
QOLc Mean (SD)
t or F (p)
(23.02) (22.82) (25.73) (27.30)
0.101 (0.959)
38.50 27.35 28.09 28.10
(23.05) (19.25) (17.20) (19.22)
1.004 (0.394)
16.91 18.66 17.86 18.08
(3.13) (2.97) (2.57) (2.77)
1.332 (0.267)
104 25
42.12 (25.77) 39.84 (20.02)
0.412 (0.681)
28.67 (19.28) 28.56 (17.16)
0.032 (0.979)
18.25 (2.84) 17.50 (2.46)
1.204 (0.231)
3 117 9
32.00 (4.58) 42.48 (25.26) 34.44 (18.35)
0.674 (0.512)
31.33 (28.54) 28.80 (18.87) 25.78 (17.06)
0.137 (0.872)
15.74 (5.38) 18.16 (2.77) 18.09 (1.55)
1.114 (0.332)
2 14 26 45 42
35.50 35.57 39.92 41.02 45.79
(9.19) (19.95) (28.33) (19.52) (29.07)
0.568 (0.686)
29.50 25.57 27.38 28.91 30.14
(24.75) (19.78) (21.36) (18.01) (18.27)
0.187 (0.945)
17.10 18.14 17.29 18.25 18.48
(0.74) (2.68) (1.95) (2.94) (3.08)
0.839 (0.503)
Unemployed Employed
65 64
45.51 (20.63) 37.78 (27.88)
1.791 (0.076)
31.58 (17.23) 25.67 (20.01)
1.800 (0.074)
17.12 (2.76) 19.10 (2.42)
4.338 (o0.001)
Monthly Income
p$910 $910–$1820 $1820–$2730 X$2730
36 21 29 43
41.11 46.76 41.97 39.47
(20.90) (28.04) (29.40) (22.97)
0.413 (0.744)
29.83 33.38 26.10 27.07
(19.51) (18.34) (18.57) (18.79)
0.763 (0.517)
17.38 17.56 18.59 18.64
Child-Pugh Classification
Child A Child B Child C
49 45 35
25.59 (17.22) 40.71 (13.70) 65.43 (26.20)
44.780 (o0.001)
22.80 (20.05) 26.62 (16.60) 39.46 (15.32)
Etiology of LC
LC-Bd LC-Ce LC-Af
105 11 12
39.90 (23.66) 54.73 (34.76) 43.67 (21.88)
1.860 (0.160)
Status with or without HCCg
LC without HCC LC with HCC
76 53
42.62 (23.93) 40.32 (25.96)
0.518 (0.644)
(2.55) (2.47) (2.81) (2.96)
1.955 (0.124)
9.517 (o0.001)
18.64 (2.95) 18.70 (2.38) 16.58 (2.46)
8.003 (o0.001)
27.01 (18.77) 38.64 (17.28) 32.83 (19.02)
2.276 (0.107)
18.12 (2.85) 17.54 (2.73) 18.59 (2.20)
0.413 (0.663)
31.28 (18.46) 24.89 (18.88)
1.916 (0.064)
17.79 (2.92) 18.55 (2.50)
1.547 (0.135)
a
possible range: 0–162. possible range: 0–84. c possible range: 0–30. d LC-B: LC from hepatitis B. e LC-C: LC from hepatitis C. f LC-A: LC from alcohol. g HCC: Hepatocellular carcinoma. b
patients had more severe symptom experience than those in Child A class (t ¼ 7:873, po0:001) and than those in Child B class (t ¼ 5:068, po0:001). Child B class patients had significantly more severe symptoms than Child A class patients (t ¼ 4:700, po0:001).
3.2.2. Psychological distress Measures of psychological distress showed a mean score 28.65 (SD ¼ 18.82) indicating mild to moderate levels of anxiety and depression. Significant difference for psychological distress scores was found according to the Child-Pugh classification (F ¼ 9:517, po0:001). Child C class patients were more anxious and depressed
than those in Child A class (t ¼ 4:127, po0:001) and than those in Child B class (t ¼ 3:548, po0:001). 3.2.3. QOL The mean score for QOL was low (M ¼ 18:10, SD ¼ 2.77). In the four domains of QOL, the mean score for health functioning was the lowest (M ¼ 16:40, SD ¼ 3.81), that for family was the highest (M ¼ 22:36, SD ¼ 3.77). Analyzing the correlates of QOL for the participants, employment status (t ¼ 4:338, po0:001) and Child-Pugh classification (F ¼ 8:003, po0:001) each showed a significant relationship with QOL. Patients who were employed reported better QOL than those not employed, and post hoc tests revealed that
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Child C class patients reported poorer QOL than those in Child A class (t ¼ 4:127, po0:001) and than those in Child B class (t ¼ 3:548, p ¼ o0:001). As a result of examining the difference in QOL between LC without HCC group and LC with HCC group, there was no significant difference (t ¼ 1:547, p ¼ 0:124). Detailed information about QOL according to the demographic and clinical variables is presented in Table 4. 3.3. Predictors of QOL To select independent variables for entry into the analysis, preliminary steps were conducted. First, correlations between potential predictors (demographic variables, clinical variables, symptom experience, and psychological distress) and QOL measures were examined. Second, correlations between selected variables were examined for high correlations to avoid the problem of multicollinearity. Correlations ranged from 0.005 to 0.646. Therefore, it was assumed that the major variables were independent of one another and multicollinearity was not a problem. The result of the stepwise multiple regression analysis in predicting QOL is presented in Table 5. Psychological distress, employment status, and overall symptom experience were significant predictors of QOL, and explained 29.8% of the total variance (F ¼ 17:723, po0:001). Psychological distress was the most significant predictor, which separately accounted for 20.1% of variance of QOL, followed by employment status (7.0%), and symptom experience (2.7%). Beta weights show that lower psychological distress, being employed, and have lower symptom experience predicted better QOL.
4. Discussion The overall symptom experience score was relatively mild. Unfortunately, it is difficult to compare with other studies because there is no study that explored overall symptom experience in patients with LC. That overall
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symptom experience score was relatively low may be caused by characteristics of the disease itself. Chronic liver disease tends to be naturally asymptomatic because the liver can compensate even when only 10% of total liver function is maintained (Kim, 2000). Thus, unpleasant symptoms could be problematic in the later stages. Examination of the rank order of symptoms within each dimension of symptom experience showed important findings. For example, the frequency of muscle cramps was not high, but the intensity and distress of muscle cramps were high, on the other hand, the frequency of dark urine was high, but the intensity and distress were low. This results support Lenz et al. (1997)’s Theory of Unpleasant Symptoms that symptoms have multidimensional aspects, so that measurement of symptoms should be assessed multidimensionally. Portenoy et al. (1994) also emphasized that symptom frequency, severity, and distress together yield clinical insight that cannot be captured by a symptom checklist alone. Patients in this study experienced mild to moderate level of psychological distress. More than 80% of participants were hepatitis B virus positive and are therefore contagious. These patients might be relatively socially isolated. Patients’ poor prognosis, symptom distress, and social isolation may cause anxiety or depression. Aghanwa and Denis (2002) reported that about 55% of LC patients developed diagnosable psychiatric morbidity. This prevalence was higher than that of hypertensive patients (15%), and COPD patients (30%). The psychiatric conditions were depressive episodes, generalized anxiety disorder, delirium and adjustment disorder. The high prevalence of psychological distress can be a contributory factor to deteriorating medical condition, therefore psychological assessment and intervention for patients with LC is strongly recommended. The QOL scores (M ¼ 18:10, SD ¼ 2.77) in this study were relatively lower than the mean score 20.70 reported for a sample of 349 hemodialysis patients by Ferrans and Powers (1992), 21.46 for a sample of 131 cancer patients by Rustoen et al. (1999), 22.33 for a sample of
Table 5 Predictors of QOL (n ¼ 129) Predicting variables
Standardized b coefficient
t-value
R2 change
(constant) Psychological distress Employment status Symptom experience
19.350 0.251 0.253 0.218
2.542 3.270 2.204
0.201 0.070 0.027
F 17.723*
*po0:001, R: 0.546, R2: 0.298, Adjusted R2: 0.282. Independent variables: age, gender, employment status, monthly income, Child-Pugh score, etiology of LC, status with or without HCC, time since diagnosis, symptom experience, psychological distress.
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52 breast cancer patients by Hughes (1993). Thus, there is a critical need to be concerned about enhancing QOL in patients with LC. Our finding of the highest level of QOL in the family domain and the lowest in the health and functioning domain is consistent with previous studies (Hughes, 1993; Rustoen et al., 1999). The results of the stepwise multiple regression analysis show that patients who had the least psychological distress, had a job, and had lower symptom experience had better QOL. Among predictors, psychological distress such as anxiety and depression (20.1%) was the strongest factor predicting QOL in patients with LC. Singh et al. (1997) also found that depression was strongly and negatively associated with QOL. Depressive mood can interfere with patients’ ability to function in their roles and perform daily activities and thus inhibits the achievement of higher QOL (Yan and Sellick, 2004). The findings suggest the importance of interventions designed to decrease psychological distress and thereby improve QOL. Employment status was found to be the second predictor of QOL. In the present study, most of the participants were men (80.6%) with a mean age of 53.61 (SD ¼ 9.29) considered to be the most productive time in their lives, therefore employment status can be directly associated with their role function at home or at work. Thus, we can assume that role function in participants might be a critical factor contributing to level of QOL. The other explanation is that because QOL in this study was measured with global QOL instrument. Previous research on QOL in patients with LC measured HRQL refers to QOL associated with health conditions. Global QOL assess respondents’ subjective well-being with general measure of how happy and/or satisfied they are with their life as a whole (Wilson and Cleary, 1995). Ferrans (1990) defined QOL is ‘a person’s sense of well-being that stems from satisfaction or dissatisfaction with areas of life that are important to him/her.’ Thus, employment status was thought to be a significant factor predicting QOL in this population. That symptom experience was a predictor of QOL supports findings by others (Redeker et al., 2000; Sarna, 1993; Sousa et al., 1999; Yan and Sellick, 2004), but these other studies report a higher proportion of QOL (4.0%; 53%; 4.29%; 12%) being explained by symptom distress as compared to only 2.7% in the present study. In this study, symptom experience scores were very strongly correlated with psychological distress (r ¼ 0:646, po0:001). These statistical results might influence a weak predictability of symptom experience on QOL. Although predictability was low, this result indicates effective symptom management is essential to improve QOL in patients with LC. In previous studies on QOL in patients with LC, disease severity (Child-Pugh score) and age were found
to be significant factors related to QOL, however, these variables did not predict QOL in this study. In terms of Child-Pugh score, the mean score was very strongly correlated with symptom experience (r ¼ 0:611, po0:001), therefore, this statistical results might influence predictability of Child-Pugh score. This study also had a small variation in age distribution. Most participants (69.7%) were in 40’s and 50’s, young participants below forty accounted for only 7.8%. To identify the effect of age in this group, further study should include multiple age groups with stratified sampling. Gender, etiology of LC, and duration of disease had little impact on QOL, findings that are consistent with the results in previous studies (Gralnek et al., 2000; Wiesinger et al., 2001; Younossi et al., 2000a, b, 2001a, b). There is an interesting finding in this study, the existence of HCC did not show a significant relationship with the level of QOL. This is unexpected as previous research has reported that HRQL impairment in HCC is greater than in severity-matched patients with cirrhosis without cancer (Bianchi et al., 2003). This might result from the difference in distribution of ChildPugh classification in the two groups. The group of cirrhotic patients without HCC had more Child C class (severe group) patients. Child C class patients may suffer from several complications of LC. Complications of LC such as ascites, variceal bleeding and encephalopathy, although not immediately life-threatening, may greatly interfere with patients’ functioning, social interaction, and sense of well-being (Arguedas et al., 2003). On the other hand, patients with HCC can maintain or enhance their health status by specific treatments for cancer such as transhepatic arterial chemoembolization (TACE) or radiofrequency ablation (RFA) if they conserve their liver function. These findings must be considered within the limitations of this study. First, the cross-sectional nature of this study is a major limitation in understanding the context or what the results really mean. The present study has a very skewed sample; most of the participant were men (80.6%), married (90.7%), and were suffering from HBV infection-related cirrhosis (82.2%). These skewed sample characteristics might impact results of the study. Thus, repetitive studies in various patients with LC are suggested. A second limitation may be related to measurement of symptom experience. There is no standardized instrument measuring symptom experience in patients with LC. In the future, development of symptom experience scale is needed, and repetitive studies on symptom experience in this population are suggested. Third, because psychological distress, employment status, and symptom experience explained only 29.8% of the total variance in QOL, future study is needed to identify other variables that may be related to QOL. These may include personality, functional status, and social support.
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5. Conclusion The results of this study conclude that the level of QOL in patients with LC was impaired, and their poor QOL was influenced by psychological distress, employment status, and symptom experience. To improve QOL in patients with LC, interventions designed to decrease psychological distress are essential, and care planning needs to embrace an approach to symptom management that includes attention to associated psychological factors and situational factors. Carefully selected and focused nursing interventions will result in improved QOL in patients with LC. Based on results of this study, the following studies are suggested: (1) studies with longitudinal design to identify the causality of symptom experience, psychological distress, and QOL in patients with LC; (2) a study to development of an effective symptom management program including psychological approach; (3) experimental studies to test effects of symptom management programs.
Acknowledgements The authors acknowledge with gratitude the editorial suggestions of Dr. Margaret Storey, the most competent assistance of Professor Ok-Soo Kim, and the cooperation of Dr. Kwang-Hyup Han, MD, patients, and clerical staff of the outpatient clinic where these data were gathered.
References Aghanwa, H.S., Denis, N., 2002. Specific psycological morbidity in liver cirrhosis in Nigerian general hospital setting. General Hospital Psychiatry 24, 436–441. Anthony, P.P., Ishak, K.G., Nayak, N.C., et al., 1978. The morphology of cirrhosis. Recommendations on definition by a working group sponsored by the World Health Organization. Journal of Clinical Pathology 1 (5), 395–414. Arguedas, M.R., DeLawrence, T.G., McGuire, B.M., 2003. Influence of hepatic encephalopathy on health related quality of life in patients with cirrhosis. Digestive Diseases and Sciences 48 (8), 1622–1626. Bianchi, G., Loguercio, C., Sgarbi, D., et al., 2003. Reduced quality of life of patients with hepatocellular carcinoma. Digestive and Liver Disease 35, 46–54. Ferrans, C.E., 1990. Development of a quality of life index for patients with cancer. Oncology Nursing Forum 17 (3), 15–19. Ferrans, C.E., 1996. Development of a conceptual model of quality of life. Scholarly Inquiry for Nursing Practice: An International Journal 10 (3), 293–304. Ferrans, C.E., Powers, M., 1985. Quality of Life Index: Development and psychometric properties. Advances in Nursing Science 8, 15–24 www.uic.edu.orgs/qli.
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Ferrans, C.E., Powers, M., 1992. Psychometric assessment of the quality of life index. Research in Nursing and Health 15, 29–38. Gralnek, I.M., Hays, R.D., Kilbourne, A., et al., 2000. Development and evaluation of the liver disease quality of life instrument in persons with advanced chronic liver disease—the LDQOL 1.0. The American Journal of Gastroenterology 95 (12), 3552–3565. Han, Y.S., Kim, B.H., Back, Y., et al., 2000. The change of the etiology, complications and cause of death of the liver cirrhosis in 1990s. Korean Journal of Hepatology 6, 328–339. Hughes, K.K., 1993. Psychosocial and functional status of breast cancer patients. Cancer Nursing 16, 222–229. Kim, J.L., 2000. Gastroenterology Disorders. Il Jo Gak, Seoul. Korea National Statistical Office (KNSO), 2002. Available at www.nso.go.kr Lenz, E., Pugh, L., Milligan, R., Gift, A., Suppe, E., 1997. The middle-range of theory of unpleasant symptoms: an update. Advances in Nursing Science 7 (19), 14–27. Marchesini, G., Bianchi, G., Salerno, P.A.F., et al., 2001. Factors associated with poor health-related quality of life of patients with cirrhosis. European Journal Gastroenterology and Hepatology 13 (3), 303–304. Portenoy, R.K., Thaler, H.T., Kornblith, A.B., et al., 1994. The memorial symptom assessment scale: an instrument for the evaluation of symptom prevalence, characteristics and distress. European Journal of Cancer 30 (9), 1326–1336. Prince, M.I., James, O.F.W., Holland, N.P., Jones, D.E.J., 2000. Validation of a fatigue impact score in primary biliary cirrhosis: towards a standard for clinical and trial use. Journal of Hepatology 32, 3668–3673. Pugh, R.N.H., Murray-lyon, I.M., Dawson, J.L., et al., 1973. Transection of the esophagus for bleeding esophageal varices. British Journal of Surgery 60, 646–649. Redeker, N.S., Lev, E.L., Ruggiero, J., 2000. Insomnia, fatigue, anxiety, depression, and quality of life of cancer patients undergoing chemotherapy. Scholarly Inquiry for Nursing Practice 14 (4), 275–290. Rustoen, T., Moum, T., Wiklund, I., Hanestad, B.R., 1999. Quality of life in newly diagnosed cancer patients. Journal of Advanced Nursing 29, 490–498. Sarna, L., 1993. Women with lung cancer: impact on quality of life. Quality of Life Research 2 (1), 13–22. Schiff, E., Sorrel, M., Maddrey, W., 1999. Disease of the Liver, Eigth ed. Lippincott, Williams & Wilkins, Philadelphia. Shin, Y.H., 1996. A study on verification of the profile of mood states (POMS) for Korean elders. Journal of Korean Academic Nursing 26, 743–758. Singh, N., Gayowski, T., Wagener, M.M., Marino, I.R., 1997. Depression in patients with cirrhosis. Impact on outcome. Digestive Diseases & Sciences 42 (7), 1421–1427. Sousa, K.H., Holzemer, W.L., Henry, S.B., 1999. Dimensions of health-related quality of life in persons living with HIV disease. Journal of Advanced Nursing 29 (1), 178–187. Wiesinger, G.F., Michael, Q., Karin, Z., et al., 2001. Physical performance and health-related quality of life in men on a liver transplantation waiting list. Journal of Rehabilitation Medicine 33 (6), 260–265.
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Wilson, I.B., Cleary, P.D., 1995. Linking clinical variables with health-related quality of life. A conceptual model of patient outcomes. JAMA 273 (1), 59–65. World Health Organization, 2000. Available at www. who.int Yan, H., Sellick, K., 2004. Symptoms, psychological distress, social support, and quality of life of Chinese patients newly diagnosed with gastrointestinal cancer. Cancer Nursing 27 (5), 389–399. Younossi, Z.M., McCormic, M., Boparai, N., Price, L.L., Farquhar, L., Guyatt, G., 2000a. Impact of liver transplantation on health-related quality of life. Liver Transplantation 6 (6), 779–783.
Younossi, Z.M., Kiwi, M.L., Boparai, N., Price, L.L., Guyatt, G., 2000b. Cholestatic liver diseases and health-related quality of life. American Journal of Gastroenterology 95 (2), 497–502. Younossi, Z.M., Boparai, N., Price, L.L., et al., 2001a. Healthrelated quality of life in chronic liver disease: The impact of type and severity of disease. American Journal of Gastroenterology 96 (7), 199–205. Younossi, Z.M., Boparai, N., McCormick, M., Price, L.L., Guyatt, G., 2001b. Assessment of utilities and disease and health-related quality of life in patients with chronic liver disease. American Journal of Gastroenterology 96 (2), 579–583.
International Journal of Nursing Studies 43 (2006) 1047–1056 www.elsevier.com/locate/ijnurstu
Symptom experience, psychological distress, and quality of life in Korean patients with liver cirrhosis: A cross-sectional survey Soo Hyun Kima,, Eui Geum Ohb, Won Hee Leeb a
Quality of Cancer Care Branch, Research Institute and Hospital, National Cancer Center, 809 Madu-dong, Ilsandong-gu, Goyang-si, Gyeonggi-do, 411-769, Korea b Yonsei University College of Nursing, 134 Shinchon-dong, Seodaemun-gu, Seoul 120-752, Korea Received 27 April 2005; received in revised form 8 November 2005; accepted 15 November 2005
Abstract Background: In patients with cirrhosis, quality of life (QOL) is seriously impaired and associated with particular symptoms such as fatigue, muscle cramps or pruritus. However, there is lack of evidence about the overall symptom experience in patients with cirrhosis, in addition, most studies on QOL have focused only on identifying the relationship between disease-related variables such as disease severity, etiology or serological markers and QOL. Objectives: This study aimed to describe symptom experience, psychological distress, and QOL in Korean patients with liver cirrhosis, and to identify the factors that predict their quality of life. Design: This study is a cross-sectional, descriptive design. Settings: The participants were recruited over a 2-month period, September 27 to November 25, 2003 from the outpatient or inpatient departments of gastroenterology at two large university hospitals in Seoul, Korea. Participants: There were 129 patients, mean age was 53.6 years, who met eligibility criteria and agreed to participate in the study. Methods: Symptom experience was measured with a scale developed by the researchers through a literature review on liver cirrhosis. Psychological distress was measured with the anxiety/depression category from the modified Korean version of the profile of mood states (POMS) [Shin, 1996. A study on verification of the profile of mood states (POMS) for Korean elders. Journal of Korean Academic Nursing 26, 743–758], and QOL was measured with quality of life index (QLI) developed by Ferrans and Powers [1985, Quality of life index: development and psychometric properties. Advances in Nursing Science 8, 15–24. www.uic.edu.orgs/qli]. Results: The results indicated that (1) overall symptom experience score was relatively low, major symptoms needing a management were fatigue, ascites and/or edema, and muscle cramps; (2) the mean score of psychological distress revealed mild to moderate levels of anxiety and depression; (3) quality of life was found to be seriously impaired; (4) psychological distress, employment status, and symptom experience were significant predictors of QOL, and explained 29.8% of the total variance. Conclusion: These results indicate that symptom management, which includes attention to associated psychological intervention, is imperative for improvement in the QOL in Korean patients with liver cirrhosis. r 2005 Elsevier Ltd. All rights reserved. Keywords: Liver cirrhosis; Psychological distress; Quality of life; Symptom
Corresponding author. Tel.: +82 31 920 2195; fax: +82 31 920 2199.
E-mail address: [email protected] (S.H. Kim). 0020-7489/$ - see front matter r 2005 Elsevier Ltd. All rights reserved. doi:10.1016/j.ijnurstu.2005.11.012
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What is already known about the topic?
There
is no examination about overall symptom experience in patients with LC. In western countries, quality of life (QOL) in patients with LC is seriously impaired. Significant factors relating to QOL in patients with LC were a higher Child-Pugh score (disease severity), symptoms such as muscle cramps, pruritus, and fatigue, and age. Gender, etiology of LC, the comorbid conditions, and the duration of disease did not show the significant relationship with QOL in patients with LC. Patients with LC had serious levels of depression or anxiety. However, less is known about the relationship among the psychological distress, symptom experience, and QOL.
What this paper adds
Major
symptoms needing a management were fatigue, ascites and/or edema, and muscle cramps. In Asian patients with LC, QOL was also seriously impaired. All demographic variables except employment status were not associated with QOL, only Child-Pugh classification among the disease-related variables showed a significant relationship with QOL. Poor QOL was influenced by psychological distress, employment status, and symptom experience.
1. Introduction Liver cirrhosis (LC) is characterized by fibrosis and conversion of normal liver architecture into structurally abnormal nodules (Anthony et al., 1978). It originates from viral infections and/or alcohol abuse. According to the World Health Organization (2000), there are an estimated 350 million carriers of Hepatitis B and 170 million carriers of Hepatitis C throughout the world and 75% of carriers of Hepatitis B are Asian. In Korea, the mortality from liver disease is fifth nationally, and first for men in their 40’s (KNSO, 2002). Three million people (5–6% of the population) in Korea are infected with Hepatitis B which is the main cause of LC. In addition, Han et al. (2000) reported that the incidence of alcoholic LC has increased rapidly in the 1990s in Korea. The mortality from liver disease in Korea is the third highest in the 31 countries in the Organization for Economic Cooperation and Development (KNSO, 2002). These epidemiological data indicate that LC is a significant chronic disease that must be addressed by health care providers in Korea.
Patients with LC suffer from fatigue, loss of self-esteem, inability to function at work, anxiety, depression, and other emotional problem that profoundly decrease their quality of life (QOL) (Schiff et al., 1999). In a study by Younossi et al. (2000a), patients with LC had similar negative levels of health-related quality of life (HRQL) when compared with patients with chronic obstructive pulmonary disease (COPD) or congestive heart failure. Several studies demonstrate that LC negatively impact HRQL, specific factors that contribute to impaired HRQL in patients with LC were found; a higher Child-Pugh score (disease severity) (Gralnek et al., 2000; Wiesinger et al., 2001; Younossi et al., 2000a, b, 2001a, b), the presence of certain symptoms such as muscle cramps, pruritus, and fatigue (Marchesini et al., 2001; Prince et al., 2000), and age (Younossi et al., 2000b, 2001a). Although several symptoms were critical factors influencing QOL, there is no evaluation about overall symptom experience in patients with LC. Gender, etiology of LC, the comorbid conditions, and the duration of disease were found to have little further impact in previous studies. Several studies revealed that patients with LC had serious levels of depression or anxiety and these psychological distresses were found to be significant factors relating to functional status or QOL (Aghanwa and Denis, 2002; Singh et al., 1997). There is accumulating evidence to suggest that psychological distress is a cofactor influencing outcome and adversely impacting morbidity and mortality in a variety of medical conditions (Singh et al., 1997). Although psychological variables might be important factors relating to QOL in patients with LC, most studies on QOL have focused only on disease-related variables. To develop effective interventions to enhance QOL in patients with LC, there is a need to examine QOL using a multidimensional framework integrating demographic, physical, and psychological factors. Furthermore, most studies on symptoms, psychological distress including anxiety and depression, and QOL in patients with LC have been evaluated in Western countries. There could be differences in the levels or relationships of these variables in this study because of cultural differences. The aims of this study, therefore, were to describe symptom experience, psychological distress, and QOL in Korean patients with LC, and to identify the extent to which demographic, physical, and psychological factors predict QOL.
2. Method 2.1. Design and sample This study is a cross-sectional, descriptive design. The participants were recruited over a 2-month period,
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September 27 to November 25, 2003 from the outpatient or inpatient departments of gastroenterology at two large university hospitals in Seoul, Korea. Eligible patients were required: (1) to have been pathologically diagnosed as having liver cirrhosis; (2) to be 20 years or older; (3) not to be suffering from any other chronic diseases (e.g. diabetes mellitus, end-stage renal disease, congestive heart failure, cerebral vascular disease); (4) to have not been treated with HCC (e.g. transhepatic arterial chemoembolization, radiofrequency ablation, or Holmium therapy) within the past month. There were 167 patients who met the eligibility criteria for this study. Of those eligible patients, 129 (77.2%) agreed to participate in the study. Reasons for nonparticipation included: patient had other chronic diseases (10.2%), patient was feeling too ill or tired (9.6%) or patient was not interested in participating in the study (3.0%). 2.2. Procedures This study was approved by the Institutional Review Board and the Ethics Committee of the two hospitals. A pilot test was employed with five patients in the outpatient department, and the researchers modified difficult or confusing items identified from the pilot test. Potential participants were identified by physicians and nurses providing care. Those who meet the inclusion criteria and were interested in participating were asked to contact a researcher. With the help of the clinical staff, patients were approached and study purpose was described. Each patient who agreed to participate was given a consent form and all questions were answered. Almost all interviews were completed in approximately 20 min. For clinical variables, the Child-Pugh score was obtained from medical records, but if not present, the researcher could calculate the score from laboratory data, radiological studies, and physical assessment. 2.3. Measurements 2.3.1. Symptom experience Symptom experience was measured multidimensionally using a scale developed by the researchers based on the Theory of Unpleasant Symptoms (Lenz et al., 1997). Lenz et al. (1997) suggested three dimensions relevant to symptom evaluation: (1) frequency with which the symptom occur, (2) intensity of the symptom, and (3) the degree of distress for the symptom. The scale is a self-report measurement that includes 18 symptoms: anorexia, nausea and/or vomiting, dyspepsia, ascites and/or edema, shortness of breath (SOB) and/or dyspnea, dry mouth, itching, bodily pain, muscle cramps, right upper quadrant (RUQ) pain, fatigue, dark urine, urinary difficulty, bruising, tarry stools, drowsiness, decrease in memory, and change in appearance (e.g. jaundice, abdominal distension). Each of the
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18 items was measured for three dimensions: frequency, intensity, and distress on a four-point scale (0 ¼ never experienced to 3 ¼ extremely frequent/ extremely strong/ extremely distressful). The symptom experience score was calculated by adding the scores of three dimensions that are sum of the raw scores of 18 symptoms. Thus, the range of symptom experience score is from 0 to 162 with higher scores indicating a more severe symptom experience. For internal consistency reliability for symptom experience the Cronbach’s alpha was 0.82. 2.3.2. Psychological distress Psychological distress was measured with the category of anxiety/depression from the modified Korean version of the Profile of Mood States (POMS) developed by Shin (1996). This scale consists of 34 items with 3 subcategories: anxiety/depression (21 items); anger (8 items); vigor (5 items). Participants responded on a scale ranging from 0 (not at all) to 4 (extremely) for each item. Thus, total scores range from 0 to 84, with higher scores indicating higher psychological distress. The modified Korean version of POMS is reported to be valid and reliable for Koreans (Shin, 1996). In this study, for internal consistency reliability for the 21 items the Cronbach’s alpha was 0.95. 2.3.3. QOL QOL was measured with the Quality of life IndexGeneric version (QLI; Ferrans and Powers, 1985). QLI is a 33-item scale in two parts: satisfaction with various aspects of life and the importance of these same aspects. All items are scored on a six-point scale, ranging from ‘‘very dissatisfied’’ to ‘‘very satisfied’’ and ‘‘very unimportant’’ to ‘‘very important’’. And then scores are calculated by weighting the satisfaction item with its corresponding importance item. The rationale for the scoring scheme is based on an individualistic view that QOL would be better for those who are satisfied with aspects of life they value and lower for those who are dissatisfied with valued aspects of life (Ferrans, 1996). A total score can be calculated as well as subscores for the four domains; health and functioning, social and economic, psychological and spiritual, and family. The score range is 0–30, with the higher score representing better QOL. The evidence for psychometric properties of the QLI has been documented. Internal consistency reliability for the QLI was supported by Cronbach’s alphas ranging from .84 to .98 across 26 studies (www.uic.edu.orgs/qli). In this study, for internal consistency reliability for QLI the Cronbach’s alpha was 0.86. 2.4. Statistical analysis Data analysis was performed using SPSS version 12.0. Distribution plots for each variable were inspected.
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Examination of the obtained normal probability plots indicated that distributions met the assumption of normality for all variables except for psychological distress and symptom experience. To improve normality, a log transformation was applied to psychological distress and symptom experience. Descriptive statistics were used to evaluate the demographic and clinical characteristics, and the level of symptom experience, psychological distress, and QOL. Difference between major study variables and other variables selected by demographic and clinical characteristics were analyzed through independent t-test and ANOVA. Finally, assumptions of multiple regression were examined, multicollinearity issues were considered, and independent variables were selected based on a correlation matrix. Subsequently, a stepwise multiple regression was applied to determine how much of the variance in QOL was explained by the selected independent variables.
Table 1 Demographic and clinical characteristics of participants (n ¼ 129) Characteristics (M7SD) Age (years) 53.6179.29
Demographic and clinical characteristics are presented in Table 1. A total of 129 LC patients with a mean age of 53.61 (SD ¼ 9.29) years participated in the study. Most of the participants were men (80.6%), married (90.7%), and had attained a moderate level of education (55.1% middle or high school, 32.6% college or university). The number of patients who were employed (50.4%) or not employed (49.6%) was almost equal. Child-Pugh score indicates severity of LC and is based on serum bilirubin and albumin levels, prothrombin time, the degree of ascites and encephalopathy (Pugh et al., 1973). The score can range from 5 to 15 with higher scores indicating greater severity. The Child-Pugh score identifies three clinical classifications: Child A (from 5 to 6), Child B (from 7 to 9), and Child C (from 10 to 15). Child C is the most severe class. Reported sensitivity and specificity for this scale are about 90% (Kim, 2000). In this study, the mean score of the Child-Pugh score was 7.91 (SD ¼ 2.40) which indicates moderate severity. The patients were distributed evenly in each severity classification: Child A (38.0%), Child B (34.9%), and Child C (27.1%). In terms of etiology, the patients with LC from hepatitis B (LC-B) (82.2%) were most prevalent. The percentage of patients who also had HCC was 41.1% and patients without HCC, 58.9%. Time since diagnosis ranged from 1 month to 15 years, with a mean score of 3.76 (SD ¼ 3.23) years. The number of hospitalizations ranged from 0 to 25, with a mean score of 3.39 (SD ¼ 3.31). 3.2. Descriptive statistics and correlates of the study variables The mean score (SD) for the major study variables is presented in Table 2, and the correlates are shown in
31–40 41–50 51–60 61–
N
%
10 43 47 29
7.8 33.3 36.4 22.5
Gender
Men Women
104 25
80.6 19.4
Marital status
Never married Married Widowed
3 117 9
2.3 90.7 7.0
Level of education
No education Elementary school Middle school High school College/University
2 14 26 45 42
6 10.9 20.2 34.9 32.6
Employment
Unemployed Employed
65 64
50.4 49.6
Monthly income
p$910 $910–$1820 $1820–$2730 X$2730
36 21 29 43
27.9 16.3 22.5 33.3
Child-Pugh classification
Child A Child B Child C
49 45 35
38 34.9 27.1
Etiology of LC
LC-Ba LC-Cb LC-Ac
106 11 12
82.2 8.5 9.3
Status with or without HCCd
LC without HCC LC with HCC
76 53
58.9 41.1
3. Results 3.1. Participants
Classification
Time since diagnosis (years) 3.7673.23 a
LC-B: LC from hepatitis B. LC-C: LC from hepatitis C. c LC-A: LC from alcohol. d HCC: Hepatocellular carcinoma. b
Table 4. The results for each study variables are as following. 3.2.1. Symptom experience The overall symptom experience score (M ¼ 41:67, SD ¼ 24.71) indicates that patients’ experience was relatively low. Table 3 shows the rank order of individual symptom experience overall and for each of the three dimensions. Among the individual symptoms, fatigue had the highest score followed by ascites and/or
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Table 2 Descriptive statistics of the study variables (n ¼ 129) Variables
Mean
SD
Actual range
Possible range
Symptom experience Psychological distress Quality of life Health-functioning Socioeconomic Psychological-spiritual Family
41.67 28.65 18.10 16.40 18.36 17.77 22.36
24.71 18.82 2.77 3.81 3.40 4.02 3.77
3–129 1–78 9.6–24.6 7.8–26.5 8.1–27.5 1.0–24.6 10.8–30
0–162 0–84 0–30 0–30 0–30 0–30 0–30
Table 3 Mean (SD) score of overall and dimensional symptom experience (n ¼ 129) Rank
Overalla
Dimension of symptom experience Frequencyb
Intensityb
Distressb Fatigue (1.5671.01) Muscle cramps (1.1371.11) Ascites/edema (1.0271.09) Change of appearance (0.9871.02) Dry mouth (0.9870.85)
1 2
Fatigue (5.1672.94) Ascites/edema (3.3673.38)
Fatigue (1.9571.13) Ascites/edema (1.2271.24)
3
Muscle cramps (3.3673.17)
4
Dry mouth (3.0872.61)
Change of appearance (1.1271.24) Dry mouth (1.0870.97)
Fatigue (1.6670.97) Muscle cramps (1.1571.11) Ascites/edema (1.1171.11) Dry mouth (1.0270.89)
5
Muscle cramps (1.0871.04)
Bruising (0.9970.88)
6
Change in appearance (3.0572.99) Bruising (2.9572.50)
Bruising (1.0770.98)
7 8
Decrease in memory (2.5772.78) Anorexia (2.5773.20)
Dark urine (1.0071.19) Decrease in memory (0.9171.01)
9
Dark urine (2.3672.63)
Anorexia (0.8871.14)
Change of appearance (0.9570.97) Anorexia (0.8771.10) Decrease in memory (0.8570.95) Dark urine (0.7870.92)
10 11
Itching (2.2672.73) SOB/dyspnea (2.2072.95)
Itching (0.8171.02) SOB/dyspnea (0.7471.04)
12 13 14 15
Dyspepsia (1.9972.44) Drowsiness (1.6272.38) RUQ pain (1.3572.18) Nausea/vomiting (1.2472.08)
Dyspepsia (0.6770.84) Drowsiness (0.5370.80) RUQ pain (0.4370.71) Nausea/vomiting (0.4370.74)
16 17 18
Bodily pain (1.0972.31) Tarry stools (0.9471.97) Urinary difficulty (0.5371.58)
Bodily pain (0.3370.73) Tarry stools (0.2770.57) Urinary difficulty (0.2070.59)
a
Itching (0.7470.93) SOB/dyspnea (0.7170.96) Dyspepsia (0.6870.85) Drowsiness (0.5370.82) RUQ pain (0.4770.79) Nausea/vomiting (0.4170.70) Bodily pain (0.3870.81) Tarry stools (0.3370.73) Urinary difficulty (0.1870.55)
Bruising (0.8870.78) Anorexia (0.8171.06) Decrease in memory (0.8170.91) SOB/dyspnea (0.7571.00) Itching (0.7170.91) Dyspepsia (0.6470.80) Dark urine (0.5970.70) Drowsiness (0.5570.86) RUQ pain (0.4470.75) Nausea/vomiting (0.4070.68) Bodily pain (0.3870.83) Tarry stools (0.3370.75) Urinary difficulty (0.1670.48)
Possible range: 0–9. Possible range: 0–3. SOB, Shortness of Breath; RUQ, right upper quadrant.
b
edema, muscle cramps, dry mouth, and change in appearance. In terms of symptom frequency, fatigue was most frequent followed by ascites and/or edema, change in appearance, dry mouth, and muscle cramps. For symptom intensity, fatigue was also most intense followed by muscle cramps, ascites and/or edema, dry mouth, and bruising. For symptom distress, fatigue was
also most distressing followed by muscle cramps, ascites and/or edema, change in appearance, and dry mouth. Examining the relationships between symptom experience and demographic and clinical variables showed, a significant difference for symptom experience according to Child-Pugh classification (F ¼ 44:780, po0:001) (Table 4). Post hoc test revealed that Child C class
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Table 4 Correlates of symptom experience, psychological distress, and QOL in participants (n ¼ 129) Variables
Classification
N
Symptom experiencea Mean (SD)
Age
31–40 41–50 51–60 61–
Gender
Men Women
Marital status
Never married Married Widowed
Level of Education
No education Elementary school Middle school High school College/University
Employment status
10 43 47 29
43.50 40.72 42.91 40.45
t or F (p)
Psychological distressb Mean (SD)
t or F (p)
QOLc Mean (SD)
t or F (p)
(23.02) (22.82) (25.73) (27.30)
0.101 (0.959)
38.50 27.35 28.09 28.10
(23.05) (19.25) (17.20) (19.22)
1.004 (0.394)
16.91 18.66 17.86 18.08
(3.13) (2.97) (2.57) (2.77)
1.332 (0.267)
104 25
42.12 (25.77) 39.84 (20.02)
0.412 (0.681)
28.67 (19.28) 28.56 (17.16)
0.032 (0.979)
18.25 (2.84) 17.50 (2.46)
1.204 (0.231)
3 117 9
32.00 (4.58) 42.48 (25.26) 34.44 (18.35)
0.674 (0.512)
31.33 (28.54) 28.80 (18.87) 25.78 (17.06)
0.137 (0.872)
15.74 (5.38) 18.16 (2.77) 18.09 (1.55)
1.114 (0.332)
2 14 26 45 42
35.50 35.57 39.92 41.02 45.79
(9.19) (19.95) (28.33) (19.52) (29.07)
0.568 (0.686)
29.50 25.57 27.38 28.91 30.14
(24.75) (19.78) (21.36) (18.01) (18.27)
0.187 (0.945)
17.10 18.14 17.29 18.25 18.48
(0.74) (2.68) (1.95) (2.94) (3.08)
0.839 (0.503)
Unemployed Employed
65 64
45.51 (20.63) 37.78 (27.88)
1.791 (0.076)
31.58 (17.23) 25.67 (20.01)
1.800 (0.074)
17.12 (2.76) 19.10 (2.42)
4.338 (o0.001)
Monthly Income
p$910 $910–$1820 $1820–$2730 X$2730
36 21 29 43
41.11 46.76 41.97 39.47
(20.90) (28.04) (29.40) (22.97)
0.413 (0.744)
29.83 33.38 26.10 27.07
(19.51) (18.34) (18.57) (18.79)
0.763 (0.517)
17.38 17.56 18.59 18.64
Child-Pugh Classification
Child A Child B Child C
49 45 35
25.59 (17.22) 40.71 (13.70) 65.43 (26.20)
44.780 (o0.001)
22.80 (20.05) 26.62 (16.60) 39.46 (15.32)
Etiology of LC
LC-Bd LC-Ce LC-Af
105 11 12
39.90 (23.66) 54.73 (34.76) 43.67 (21.88)
1.860 (0.160)
Status with or without HCCg
LC without HCC LC with HCC
76 53
42.62 (23.93) 40.32 (25.96)
0.518 (0.644)
(2.55) (2.47) (2.81) (2.96)
1.955 (0.124)
9.517 (o0.001)
18.64 (2.95) 18.70 (2.38) 16.58 (2.46)
8.003 (o0.001)
27.01 (18.77) 38.64 (17.28) 32.83 (19.02)
2.276 (0.107)
18.12 (2.85) 17.54 (2.73) 18.59 (2.20)
0.413 (0.663)
31.28 (18.46) 24.89 (18.88)
1.916 (0.064)
17.79 (2.92) 18.55 (2.50)
1.547 (0.135)
a
possible range: 0–162. possible range: 0–84. c possible range: 0–30. d LC-B: LC from hepatitis B. e LC-C: LC from hepatitis C. f LC-A: LC from alcohol. g HCC: Hepatocellular carcinoma. b
patients had more severe symptom experience than those in Child A class (t ¼ 7:873, po0:001) and than those in Child B class (t ¼ 5:068, po0:001). Child B class patients had significantly more severe symptoms than Child A class patients (t ¼ 4:700, po0:001).
3.2.2. Psychological distress Measures of psychological distress showed a mean score 28.65 (SD ¼ 18.82) indicating mild to moderate levels of anxiety and depression. Significant difference for psychological distress scores was found according to the Child-Pugh classification (F ¼ 9:517, po0:001). Child C class patients were more anxious and depressed
than those in Child A class (t ¼ 4:127, po0:001) and than those in Child B class (t ¼ 3:548, po0:001). 3.2.3. QOL The mean score for QOL was low (M ¼ 18:10, SD ¼ 2.77). In the four domains of QOL, the mean score for health functioning was the lowest (M ¼ 16:40, SD ¼ 3.81), that for family was the highest (M ¼ 22:36, SD ¼ 3.77). Analyzing the correlates of QOL for the participants, employment status (t ¼ 4:338, po0:001) and Child-Pugh classification (F ¼ 8:003, po0:001) each showed a significant relationship with QOL. Patients who were employed reported better QOL than those not employed, and post hoc tests revealed that
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Child C class patients reported poorer QOL than those in Child A class (t ¼ 4:127, po0:001) and than those in Child B class (t ¼ 3:548, p ¼ o0:001). As a result of examining the difference in QOL between LC without HCC group and LC with HCC group, there was no significant difference (t ¼ 1:547, p ¼ 0:124). Detailed information about QOL according to the demographic and clinical variables is presented in Table 4. 3.3. Predictors of QOL To select independent variables for entry into the analysis, preliminary steps were conducted. First, correlations between potential predictors (demographic variables, clinical variables, symptom experience, and psychological distress) and QOL measures were examined. Second, correlations between selected variables were examined for high correlations to avoid the problem of multicollinearity. Correlations ranged from 0.005 to 0.646. Therefore, it was assumed that the major variables were independent of one another and multicollinearity was not a problem. The result of the stepwise multiple regression analysis in predicting QOL is presented in Table 5. Psychological distress, employment status, and overall symptom experience were significant predictors of QOL, and explained 29.8% of the total variance (F ¼ 17:723, po0:001). Psychological distress was the most significant predictor, which separately accounted for 20.1% of variance of QOL, followed by employment status (7.0%), and symptom experience (2.7%). Beta weights show that lower psychological distress, being employed, and have lower symptom experience predicted better QOL.
4. Discussion The overall symptom experience score was relatively mild. Unfortunately, it is difficult to compare with other studies because there is no study that explored overall symptom experience in patients with LC. That overall
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symptom experience score was relatively low may be caused by characteristics of the disease itself. Chronic liver disease tends to be naturally asymptomatic because the liver can compensate even when only 10% of total liver function is maintained (Kim, 2000). Thus, unpleasant symptoms could be problematic in the later stages. Examination of the rank order of symptoms within each dimension of symptom experience showed important findings. For example, the frequency of muscle cramps was not high, but the intensity and distress of muscle cramps were high, on the other hand, the frequency of dark urine was high, but the intensity and distress were low. This results support Lenz et al. (1997)’s Theory of Unpleasant Symptoms that symptoms have multidimensional aspects, so that measurement of symptoms should be assessed multidimensionally. Portenoy et al. (1994) also emphasized that symptom frequency, severity, and distress together yield clinical insight that cannot be captured by a symptom checklist alone. Patients in this study experienced mild to moderate level of psychological distress. More than 80% of participants were hepatitis B virus positive and are therefore contagious. These patients might be relatively socially isolated. Patients’ poor prognosis, symptom distress, and social isolation may cause anxiety or depression. Aghanwa and Denis (2002) reported that about 55% of LC patients developed diagnosable psychiatric morbidity. This prevalence was higher than that of hypertensive patients (15%), and COPD patients (30%). The psychiatric conditions were depressive episodes, generalized anxiety disorder, delirium and adjustment disorder. The high prevalence of psychological distress can be a contributory factor to deteriorating medical condition, therefore psychological assessment and intervention for patients with LC is strongly recommended. The QOL scores (M ¼ 18:10, SD ¼ 2.77) in this study were relatively lower than the mean score 20.70 reported for a sample of 349 hemodialysis patients by Ferrans and Powers (1992), 21.46 for a sample of 131 cancer patients by Rustoen et al. (1999), 22.33 for a sample of
Table 5 Predictors of QOL (n ¼ 129) Predicting variables
Standardized b coefficient
t-value
R2 change
(constant) Psychological distress Employment status Symptom experience
19.350 0.251 0.253 0.218
2.542 3.270 2.204
0.201 0.070 0.027
F 17.723*
*po0:001, R: 0.546, R2: 0.298, Adjusted R2: 0.282. Independent variables: age, gender, employment status, monthly income, Child-Pugh score, etiology of LC, status with or without HCC, time since diagnosis, symptom experience, psychological distress.
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52 breast cancer patients by Hughes (1993). Thus, there is a critical need to be concerned about enhancing QOL in patients with LC. Our finding of the highest level of QOL in the family domain and the lowest in the health and functioning domain is consistent with previous studies (Hughes, 1993; Rustoen et al., 1999). The results of the stepwise multiple regression analysis show that patients who had the least psychological distress, had a job, and had lower symptom experience had better QOL. Among predictors, psychological distress such as anxiety and depression (20.1%) was the strongest factor predicting QOL in patients with LC. Singh et al. (1997) also found that depression was strongly and negatively associated with QOL. Depressive mood can interfere with patients’ ability to function in their roles and perform daily activities and thus inhibits the achievement of higher QOL (Yan and Sellick, 2004). The findings suggest the importance of interventions designed to decrease psychological distress and thereby improve QOL. Employment status was found to be the second predictor of QOL. In the present study, most of the participants were men (80.6%) with a mean age of 53.61 (SD ¼ 9.29) considered to be the most productive time in their lives, therefore employment status can be directly associated with their role function at home or at work. Thus, we can assume that role function in participants might be a critical factor contributing to level of QOL. The other explanation is that because QOL in this study was measured with global QOL instrument. Previous research on QOL in patients with LC measured HRQL refers to QOL associated with health conditions. Global QOL assess respondents’ subjective well-being with general measure of how happy and/or satisfied they are with their life as a whole (Wilson and Cleary, 1995). Ferrans (1990) defined QOL is ‘a person’s sense of well-being that stems from satisfaction or dissatisfaction with areas of life that are important to him/her.’ Thus, employment status was thought to be a significant factor predicting QOL in this population. That symptom experience was a predictor of QOL supports findings by others (Redeker et al., 2000; Sarna, 1993; Sousa et al., 1999; Yan and Sellick, 2004), but these other studies report a higher proportion of QOL (4.0%; 53%; 4.29%; 12%) being explained by symptom distress as compared to only 2.7% in the present study. In this study, symptom experience scores were very strongly correlated with psychological distress (r ¼ 0:646, po0:001). These statistical results might influence a weak predictability of symptom experience on QOL. Although predictability was low, this result indicates effective symptom management is essential to improve QOL in patients with LC. In previous studies on QOL in patients with LC, disease severity (Child-Pugh score) and age were found
to be significant factors related to QOL, however, these variables did not predict QOL in this study. In terms of Child-Pugh score, the mean score was very strongly correlated with symptom experience (r ¼ 0:611, po0:001), therefore, this statistical results might influence predictability of Child-Pugh score. This study also had a small variation in age distribution. Most participants (69.7%) were in 40’s and 50’s, young participants below forty accounted for only 7.8%. To identify the effect of age in this group, further study should include multiple age groups with stratified sampling. Gender, etiology of LC, and duration of disease had little impact on QOL, findings that are consistent with the results in previous studies (Gralnek et al., 2000; Wiesinger et al., 2001; Younossi et al., 2000a, b, 2001a, b). There is an interesting finding in this study, the existence of HCC did not show a significant relationship with the level of QOL. This is unexpected as previous research has reported that HRQL impairment in HCC is greater than in severity-matched patients with cirrhosis without cancer (Bianchi et al., 2003). This might result from the difference in distribution of ChildPugh classification in the two groups. The group of cirrhotic patients without HCC had more Child C class (severe group) patients. Child C class patients may suffer from several complications of LC. Complications of LC such as ascites, variceal bleeding and encephalopathy, although not immediately life-threatening, may greatly interfere with patients’ functioning, social interaction, and sense of well-being (Arguedas et al., 2003). On the other hand, patients with HCC can maintain or enhance their health status by specific treatments for cancer such as transhepatic arterial chemoembolization (TACE) or radiofrequency ablation (RFA) if they conserve their liver function. These findings must be considered within the limitations of this study. First, the cross-sectional nature of this study is a major limitation in understanding the context or what the results really mean. The present study has a very skewed sample; most of the participant were men (80.6%), married (90.7%), and were suffering from HBV infection-related cirrhosis (82.2%). These skewed sample characteristics might impact results of the study. Thus, repetitive studies in various patients with LC are suggested. A second limitation may be related to measurement of symptom experience. There is no standardized instrument measuring symptom experience in patients with LC. In the future, development of symptom experience scale is needed, and repetitive studies on symptom experience in this population are suggested. Third, because psychological distress, employment status, and symptom experience explained only 29.8% of the total variance in QOL, future study is needed to identify other variables that may be related to QOL. These may include personality, functional status, and social support.
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5. Conclusion The results of this study conclude that the level of QOL in patients with LC was impaired, and their poor QOL was influenced by psychological distress, employment status, and symptom experience. To improve QOL in patients with LC, interventions designed to decrease psychological distress are essential, and care planning needs to embrace an approach to symptom management that includes attention to associated psychological factors and situational factors. Carefully selected and focused nursing interventions will result in improved QOL in patients with LC. Based on results of this study, the following studies are suggested: (1) studies with longitudinal design to identify the causality of symptom experience, psychological distress, and QOL in patients with LC; (2) a study to development of an effective symptom management program including psychological approach; (3) experimental studies to test effects of symptom management programs.
Acknowledgements The authors acknowledge with gratitude the editorial suggestions of Dr. Margaret Storey, the most competent assistance of Professor Ok-Soo Kim, and the cooperation of Dr. Kwang-Hyup Han, MD, patients, and clerical staff of the outpatient clinic where these data were gathered.
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