J Clin Epidemiol Vol. 44, No. 10, pp. Printed in Great Britain
IMPACT
1079-1083,
1991
0895-4356/91$3.00+ 0.00 Pergamon
OF LIVER DISEASE TRANSPLANTATION
ON DAILY LIVING CANDIDATES
RALPH E. TARTER,‘* JOANN SWITALA,’ AMELIA ARRIA’
Press plc
IN
and DAVID H. VAN THIEL*
‘Western Psychiatric Institute and Clinic, 3811 O’Hara Street, Pittsburgh,
PA 15213 and 2Department of Surgery, University of Pittsburgh, 5C Falk Clinic, Pittsburgh, PA 15213, U.S.A. (Received I February 1991)
Abstract-The impact of different types of liver diseases on life quality in transplantation candidates was assessed. For all disease types, psychosocial impairment exceeded physical impairment. Among the various disease conditions, differences on the pattern and severity of life quality disturbances were observed. Liver disease
Psychosocial
Life quality
of life quality could be determined. Information
INTRODUCTION
Frequently, quality of life is compromised by chronic disease. This is particularly true if the condition is far advanced and therefore also is life-threatening. The effect of liver diseases with respect to their impact on daily living and functional behavioral capacity has not been
This paucity of studied systematically. information may be due to the relatively low prevalence of chronic non-alcoholic liver diseases in the population, thereby making it difficult for most investigators to accrue a sufficiently large sample for investigation. The limited data available indicate that individuals with biopsy proven chronic cholestatic disease experience a significant impairment in their daily routines [ 11,however, the specific sequelae of the various types of liver diseases upon life quality remains unknown. Whether the quality on life impairment experienced by individuals with chronic liver disease is different in kind and degree is not yet known. The liver transplantation program at the University of Pittsburgh has provided the opportunity to study a large number of patients with chronic advanced liver disease such that the impact of their disease and its specific type *Author for correspondence. CE Ml&F
from a consecutive series of prospective liver transplant candidates using a standardized and quantitative self-report measure of disease impact on daily functioning was obtained. This study was initiated because in addition to ensuring biological survival, liver transplantation should restore the individual to an optimal quality of life if possible. It is, therefore, important to document the dimensions of life quality disturbance in candidates for the procedure and to determine whether or not disease specific impairments exist so that their post-surgical improvement can be monitored and, where appropriate, physical rehabilitation and psychosocial interventions can be implemented. The purpose of this study was to determine the impact of different types of liver disease on quality of life in transplantation candidates. METHODS
Subjects
The patient sample consisted of 306 adult prospective liver transplant candidates admitted to Presbyterian University Hospital of the University of Pittsburgh Health Sciences Center. The mean age of the group was 41 (S = 10) years. The sample consisted of 128 males and 178 females. The specific liver disease diagnosis
1079
1080
RALPH
E. TARTERet al.
Table 1. Characteristics of the liver disease groups on key biochemical indices of illness severity Prothrombin x (s)
Albumin R (s) Laennec’s (n = 38) Primary biliary cirrhosis (PBC) (n = 79) Chronic active hepatitis/ post necrotic cirrhosis (CAC/PNC) (n = 58) Hepatitis B+ (n = 26) Hepatitis Non-A-Non-B (n = 27) Cryptogenic (n = 15) Primary sclerosing cholangitis (PSC) (n = 52) Alnha-l antitrvnsin (n = 11)
time
Bilirubin (total) x (s)
2.9 (0.50) 3.1 (0.80)
15.4 (2.16) 14.0 (2.11)
5.6 (5.36) 11.6 (7.38)
2.6 (0.76)
15.4 (3.74)
5.0 (6.26)
2.1 2.9 3.4 3.2
(0.55) (0.55) (1.18) (0.71)
15.8 (1.98) 14.3 (2.68) 14.5 (1.97) 13.2 (1.20)
5.8 (6.26) 6.7 (9.28) 5.2 (7.81) 10.0 (11.6)
2.7 (0.91)
14.5 (2.05)
3.0 (2.86)
was based on a comprehensive medical examination, including biochemical assessment of liver function and injury, CT scan of the abdomen with particular attention being given to the liver and portal circulation, and an examination of histopathology following percutaneous liver biopsy. Only cases with chronic liver disease in which the duration of the liver disease exceeded 3 years were included in the study. Table 1 summarizes the severity of liver injury determined biochemically while Table 2 describes the clinical ratings of severity of liver dysfunction. Except for the expected higher bilirubin levels in the patients with primary biliary cirrhosis and primary sclerosing cholangitis the groups were essentially equivalent with respect to liver disease severity on the biochemical measures. It should be noted that the Child’s ratings were not available for all the subjects. On these ratings, variability among the groups is evident with proportionally more subjects having hepatitis B and cryptogenic cirrhosis being represented with severe Child’s scores. Primary sclerosing cholangitis subjects were most represented in the least severe ratings followed by patients with alpha-l antitrypsin disease. None of the subjects were overtly encephalopathic at the time of their examinations. To have included grossly encephalopathic subjects would have confounded the results due to the presence of mental confusion and impaired
motivation. This study was approved by the IRB at the University of Pittsburgh; all of the subjects agreed to voluntarily participate and signed an informed consent form. Procedure
Each patient completed the Sickness Impact Profile [2]. The percent of impairment is obtained on 12 different primary scales which characterize physical and psychosocial dysfunction. Two subscales, physical dysfunction and psychosocial dysfunction provide derived summary scores from the 12 primary scales. In addition, an overall index of disease severity is derived by summing the impairment scores across the 12 primary dimensions of functioning. A score of zero indicates the absence of an adverse impact of disease upon life functioning, while at the other extreme a score of 100 indicates total disability. The SIP has been shown to be a sensitive measure of health status and, although used as a self-report, to be valid for quantitating the effects of chronic disease on functional behavioral capacity [3,4]. RESULTS
The analyses compared severity of impairments on the SIP across disease type as well as on each dimension within each disease. Table 3 presents the percent impairment and the
Table 2. Distribution of subjects according to Child’s score
Laennec’s PBC Chronic active hepatits Hepatitis B Hepatitis non-A-non-B Cryptogenic PSC Alpha-l antitrypsin
Child’s A
Child’s B
Child’s C
n
n
(%I
n
‘:;; (41) (22) (38) (33) (38) (33j
II 11 15 12 5 6 5 3
3 9 9
W)
:s; (22) (11)
: 0 18 3
(23) (0) (49) (33)
9 28 17 4 5 3 14 .3
(33j
Impact of Liver Disease
1081
Table 3. Percent impairment among different diagnostic groups and their rankings on each dimension of the Sickness Impact Profile Cryptogenie
PSC
Alpha- 1
30 (7) 17.51 25 (8) i4.51 47 (8) 1121 25 (6) i4.51 40 (5.5) 1111 28 (5) I61 30 (8) i7.51 21 (8) PII 24 (8) i2.51 38 (8) DOI 34 (6) [91 24 (7.5) l2.51
31 (8) [81 22 (7) I41 34 (4) [91 29 (8) 161 30 (6) [71 35 (7.5) PO1 28 (7) [51 20 (7) I31 19 (7) [21 36 (5.5) vu 39 (8) [I21 17 (4) Ul
19 (3) PI 11 (I) 12.51 29 (2) HO.51 17 (3) l6.51 29 (4) [10.5] 23 (3.5) [91 17 (3.5) i6.51 11 (2) i2.51 5 (1.5) VI 30 (4) [I21 16 (1.5) i4.51 16 (2) 14.51
17 (2) 16.51 20 (6) P.51 26 (1) U 11 13 (1) 131 16 (1) 14.51 20 (1) L8.51 17 (3.5) 16.51 11 (2) I21 7 (3) [II 28 (2.5) [I21 16 (1.5) 1101 16 (2) 14.51
16 (5)
24 (8)
22 (7)
12 (2)
13 (3)
22 (5)
24 (6)
28 (8)
27 (7)
14 (1.5)
16 (3)
23 (5.5)
23 (5.7)
28 (8)
27 (7)
16 (2.5)
16 (2.5)
CAH/ PNC
Hep. B+
i2.51 5 (1.5) Ul 23 (1) [10.5] 17 (3) [81 16 (2) i6.51
22 (5.5) [51 19 (5) I31 37 (5) [I21 20 (4) I41 30 (5.5) I91 35 (7.5) m 26 (6) [71 17 (6) I21 13 (4) PI 36 (5.5) 1111 29 (5) PI 24 (7.5) [61
22 (5.5) I61 12 (2) HI 38 (6) I111 27 (7) [71 40 (7.5) [I21 31 (6) [I81 20 (5) i4.51 16 (5) [21 18 (6) [31 37 (7) UOI 36 (7) I91 20 (6) l4.51
14 (4)
11 (1)
19 (6)
Psychosocial
19 (4)
14 (1.5)
Total
19 (4)
15 (1)
Social interaction
Laennec
PBC
20 (4)
16 (1)
WI
Ambulation Sleep Eating Work Home management Mobility Body movement Communication Recreation Alertness Emotion
Physical
1
14 (4) L2.51 39 (7) u21 22 (5) [91 22 (3) [91 22 (2) [91 14 (2) L2.51 14 (4) 12.51 14 (5) 12.51 28 (2.5) [1 II 20 (4) L6.51 18 (5) I51
L6.51 12 (2) [41 30 (3) [I21 15 (2) [51 21 (2) I91 23 (3.5) [IO.51 11 (1) L2.51
11 (2)
Hep. Non-A-Non-B
*Scores in parentheses are the rank scores; tied scores were averaged. Scores in brackets are the rank scores within each group across scales; tied scores are averaged.
ranking of severity for the various types of disease is noted in parentheses. The least overall impairment in life quality (15%) was observed in patients with PBC whereas the greatest impairment (28%) was observed in patients with Non-A and Non-B hepatitis. The rankings within disease type are presented in the brackets beneath the percent impairment score. It is interesting to note that for every disease type, the psychosocial impact of their disease was perceived as being more severe than the physical consequences of their disease. It is also noteworthy that the disparity between the perceived severity of the physical and psychosocial manifestations was not the same for the various diseases studied. Sleep was overall the most severely disrupted aspect of daily living, however, among individuals with cryptogenic cirrhosis, sleep disorders ranked only ninth among the 12 primary scales. In this latter group, problems maintaining alertness were the most severe perceived manifestation of the hepatic disease. Ability to ambulate showed marked variability among the various disease groups. It was the least impaired aspect of daily
functioning experienced by patients with Laennet’s cirrhosis and in patients with cirrhosis due to chronic hepatitis B infection, but was among the most severe areas of disability in patients with cirrhosis due to alpha-l antitrypsin deficiency. Alertness obtained a mean rank of 8.3 across disease groups; however, it ranked as the 4.5 and 6.5 most impaired area in the PSC and Laennec patients respectively, whereas it is the most severe aspect of impairment in the patients with cryptogenic cirrhosis. These results underscore the differences in severity manifestation among patients with different liver diseases with respect to their impact in specific aspects of daily living. The data were analyzed next to determine whether scores on the Sickness Impact Profile are related to clinical ratings of liver disease severity. Table 4 summarizes the group mean scores for physical and psychosocial impairment according to Child’s rating of liver disease severity. Analysis of variance did not reveal significant differences in mean SIP ratings within each group according to Child’s ratings, indicating that physical and psychosocial
1082
RALPH
E. TARTERet al.
Table 4. Mean Sickness Impact Profile scores according to Child’s index Child’s A R (s)
Child’s B .F (s)
2
Child’s C (s)
Physical impairment
Laennec’s PBC Chronic active hepatits Hepatitis B + Hepatitis Non-A-Non-B Cryptogenic PSC Alpha- 1 antitrypsin
4.3 8.2 11.3 0.0 21.0 N/A 7.9 18.0
(5.9) (7.41 ({;-;i (26:7) (8.3) (10.6)
17.0 8.6 13.8 11.2 33.0 25.3 12.0 7.0
(15.3)
20.2 12.4
(19.5) (13.7)
18.5 19.2 38.6 20.0 12.9 7.7
It:.!; (30:6)
I:!::; (4.3) (30.8) (35.6) (9.2) (10.4)
13.6 17.5 20.1 18.9 17.8 23.5 7.6 19.0
(10.7) (12.7) (16.6) (14.8) (21.5) (18.1) (9.2) (16.5)
22.6 15.6 24.2 23.2 19.6 25.0 11.8 23.3
(23.0) (9.2) (23.1) (16.0) (17.8) (25.5) (17.3) (25.4)
Psychosocial impairment
Laennec’s PBC Chronic active hepatits Hepatitis Bf Hepatitis Non-A-Non-B Cryptogenic PSC Alpha-l antitrypsin
5.3 15.4 15.9 12.5 31.0
(7.6) (11.7) (18.4) (9.2) 128.8) N/A‘ ’ (15.7) 16.4 (17.0) 23.3
impact of disease are not associated with liver disease severity indexed medically. DISCUSSION
This report is the first large scale examination of the differential impact of liver diseases on life quality in adults. Interestingly, across all liver disease types studied there is reported greater psychosocial disability than physical disability. The magnitude of this difference is variable, ranging from a 2% greater impairment for psychosocial functioning seen in patients with sclerosing cholangitis to a difference of 8% among patients with cirrhosis due to chronic hepatitis B infection. Another pertinent observation that can be made from these data concerns the relatively moderate degree of life quality impact that chronic liver diseases have on daily living. Although mean scores for each group reflect the adverse impact of the disease in question on life quality, it is important to note that the findings are somewhat inconsistent with the presence of chronic advanced liver disease having the potential for a fatal outcome. Despite the imminent threat to survival, severe deleterious changes in life quality as measured by the Sickness Impact Profile were not evident. Nor is clinical rating of severity, using medical criteria, associated with magnitude of psychosocial or physical impairment. The absence of a difference on the SIP scores according to severity of Child’s index is noteworthy. This negative result needs to be interpreted cautiously because the Child’s scores
were not available on all of the subjects. Hence, the possibility remains that a true difference may indeed exist, but because of insufficient cases, was not detected. Alternatively, it is possible that the medical and behavioral measures of disease severity reflect separate, and not necessarily related, consequences. It is not possible to unequivocally support one conclusion over the other to explain the obtained results. However, when the data are collapsed across disease type to yield three groups of Child’s scores having group sizes of 47, 83, and 68, the mean percent of subjects having a Child’s index A is 3 1%, Child’s index B is 44%, and Child’s index C is 43 %. These results would tend to suggest that, apart from the gradation of change from the Child’s score from A to B there is no systematic relationship between medical and behavioral measures of disease severity. It is additionally interesting to note that Laennec’s cirrhosis had rather inconspicuous effects on the key aspects of life quality assessed. This disease is particularly important for consideration because of the medical and public policy controversy surrounding the question of appropriateness of such patients for liver transplantation. In our sample, the patients with Laennec’s cirrhosis ranked fourth among the eight disease types assessed with respect to the degree of physical, psychosocial or total dysfunction. These findings suggest that chronic alcoholics with advanced liver diseases do not experience physical or psychosocial disability in a way that is greatly different from other liver disease conditions. It should be emphasized, however, that these results have no prognostic
Impact of Liver Disease
value with respect to detecting individuals who either will remain sober following transplantation or survive the surgical procedure. It should be noted that the prognosis for survival of liver transplantation is comparable in alcoholics and non-alcoholics [5]. The results obtained are necessarily limited by the measure employed. It should be noted that the Sickness Impact Profile has been used to document physical and behavioral disability in other chronic diseases and also shown to be a good indicator of overall quality of life [6,7]. None the less, the findings are restricted to self-report and hence the subject’s own impression of disability. Recent evidence has shown, however, that patients undergoing liver transplantation tend to report more severe deficit about their condition compared to a knowledgeable informant [8]. Thus, if there is reporting bias, it is likely to have been skewed in the direction of a conservative interpretation of the results. Finally, it should be pointed out that monitoring the physical and behavioral effects of chronic liver disease has substantial ramifications for the medical management of these patients. The capacity of the person to remain alert, communicate, attend to appetitive needs and drives may importantly influence their disease course and treatment compliance. Hence, quantitative information about the physical and psychosocial status of these patients may assist in decision making regarding
1083
the patient’s appropriateness for hepatic transplantation and monitoring their post-surgery course. Current ongoing research in our laboratory is directed at determining the degree to which pre-transplantation psychosocial and physical status might predict the long term outcome following surgery. Acknowledgemenrs-This study was supported by grants NIH 5ROl AM32556 and ROl AA 06601-03.
REFERENCES 1.
Hegedus AM, Van Thiel DH, Schade RR, Gavaler JS, Starzl TE. Nemopsychiatric characteristics associated with primary biliary cirrhosis. Int J Psych Med 1984; 14: 303-314. 2. Gilson BS, Gilson J, Bergner M, Bobbitt RA, Kresell S, Pollard WE, Vesselago M. The Sickness Impact Profile: Development of an outcome measure of health care. Am J Public Health 1975; 65(12): 1304-1310. 3. Beraner M. Bobbitt R. Pollard W. Martin D. Gilson B. fhe Sickness Impact Profile: Validation of a health status measure. Med Care 1978; 14: 5767. 4. Pollard W, Bobbitt B, Bergner M, Martin D, Gilson B. The Sickness Imoact Profile: Reliabilitv of a health status measure. Med Care 1978; 19: 14c155. 5. Starzl TE, Van Thiel DH, Tzakis AG, Shunzaburo I, Todo S, Wallis Marsh J, Staschak S, Stieber A, Gordon RD. Orthotopic liver transplantation for alcoholic cirrhosis. J Am Med Assoc 1988; 260: 2542-2544. 6. Hart L, Evans R. The functional status of ESRD patients as measured by the Sickness Impact Profile. J Chron Dis 1987; 4O(Suppl. 1): 17s-130s. I. Evans R. Quality of Life Assessment and the Treatment of End-stage Renal Disease. Seattle, WA: Battelle Human Affairs Research Centers; 1990. 8. Tarter R, Switala J, Arria A, Plail J, Van Thiel D. Quality of life before and after orthotopic hepatic transplantation. Arch Intern Med 1991; in press.
IMPACT
1079-1083,
1991
0895-4356/91$3.00+ 0.00 Pergamon
OF LIVER DISEASE TRANSPLANTATION
ON DAILY LIVING CANDIDATES
RALPH E. TARTER,‘* JOANN SWITALA,’ AMELIA ARRIA’
Press plc
IN
and DAVID H. VAN THIEL*
‘Western Psychiatric Institute and Clinic, 3811 O’Hara Street, Pittsburgh,
PA 15213 and 2Department of Surgery, University of Pittsburgh, 5C Falk Clinic, Pittsburgh, PA 15213, U.S.A. (Received I February 1991)
Abstract-The impact of different types of liver diseases on life quality in transplantation candidates was assessed. For all disease types, psychosocial impairment exceeded physical impairment. Among the various disease conditions, differences on the pattern and severity of life quality disturbances were observed. Liver disease
Psychosocial
Life quality
of life quality could be determined. Information
INTRODUCTION
Frequently, quality of life is compromised by chronic disease. This is particularly true if the condition is far advanced and therefore also is life-threatening. The effect of liver diseases with respect to their impact on daily living and functional behavioral capacity has not been
This paucity of studied systematically. information may be due to the relatively low prevalence of chronic non-alcoholic liver diseases in the population, thereby making it difficult for most investigators to accrue a sufficiently large sample for investigation. The limited data available indicate that individuals with biopsy proven chronic cholestatic disease experience a significant impairment in their daily routines [ 11,however, the specific sequelae of the various types of liver diseases upon life quality remains unknown. Whether the quality on life impairment experienced by individuals with chronic liver disease is different in kind and degree is not yet known. The liver transplantation program at the University of Pittsburgh has provided the opportunity to study a large number of patients with chronic advanced liver disease such that the impact of their disease and its specific type *Author for correspondence. CE Ml&F
from a consecutive series of prospective liver transplant candidates using a standardized and quantitative self-report measure of disease impact on daily functioning was obtained. This study was initiated because in addition to ensuring biological survival, liver transplantation should restore the individual to an optimal quality of life if possible. It is, therefore, important to document the dimensions of life quality disturbance in candidates for the procedure and to determine whether or not disease specific impairments exist so that their post-surgical improvement can be monitored and, where appropriate, physical rehabilitation and psychosocial interventions can be implemented. The purpose of this study was to determine the impact of different types of liver disease on quality of life in transplantation candidates. METHODS
Subjects
The patient sample consisted of 306 adult prospective liver transplant candidates admitted to Presbyterian University Hospital of the University of Pittsburgh Health Sciences Center. The mean age of the group was 41 (S = 10) years. The sample consisted of 128 males and 178 females. The specific liver disease diagnosis
1079
1080
RALPH
E. TARTERet al.
Table 1. Characteristics of the liver disease groups on key biochemical indices of illness severity Prothrombin x (s)
Albumin R (s) Laennec’s (n = 38) Primary biliary cirrhosis (PBC) (n = 79) Chronic active hepatitis/ post necrotic cirrhosis (CAC/PNC) (n = 58) Hepatitis B+ (n = 26) Hepatitis Non-A-Non-B (n = 27) Cryptogenic (n = 15) Primary sclerosing cholangitis (PSC) (n = 52) Alnha-l antitrvnsin (n = 11)
time
Bilirubin (total) x (s)
2.9 (0.50) 3.1 (0.80)
15.4 (2.16) 14.0 (2.11)
5.6 (5.36) 11.6 (7.38)
2.6 (0.76)
15.4 (3.74)
5.0 (6.26)
2.1 2.9 3.4 3.2
(0.55) (0.55) (1.18) (0.71)
15.8 (1.98) 14.3 (2.68) 14.5 (1.97) 13.2 (1.20)
5.8 (6.26) 6.7 (9.28) 5.2 (7.81) 10.0 (11.6)
2.7 (0.91)
14.5 (2.05)
3.0 (2.86)
was based on a comprehensive medical examination, including biochemical assessment of liver function and injury, CT scan of the abdomen with particular attention being given to the liver and portal circulation, and an examination of histopathology following percutaneous liver biopsy. Only cases with chronic liver disease in which the duration of the liver disease exceeded 3 years were included in the study. Table 1 summarizes the severity of liver injury determined biochemically while Table 2 describes the clinical ratings of severity of liver dysfunction. Except for the expected higher bilirubin levels in the patients with primary biliary cirrhosis and primary sclerosing cholangitis the groups were essentially equivalent with respect to liver disease severity on the biochemical measures. It should be noted that the Child’s ratings were not available for all the subjects. On these ratings, variability among the groups is evident with proportionally more subjects having hepatitis B and cryptogenic cirrhosis being represented with severe Child’s scores. Primary sclerosing cholangitis subjects were most represented in the least severe ratings followed by patients with alpha-l antitrypsin disease. None of the subjects were overtly encephalopathic at the time of their examinations. To have included grossly encephalopathic subjects would have confounded the results due to the presence of mental confusion and impaired
motivation. This study was approved by the IRB at the University of Pittsburgh; all of the subjects agreed to voluntarily participate and signed an informed consent form. Procedure
Each patient completed the Sickness Impact Profile [2]. The percent of impairment is obtained on 12 different primary scales which characterize physical and psychosocial dysfunction. Two subscales, physical dysfunction and psychosocial dysfunction provide derived summary scores from the 12 primary scales. In addition, an overall index of disease severity is derived by summing the impairment scores across the 12 primary dimensions of functioning. A score of zero indicates the absence of an adverse impact of disease upon life functioning, while at the other extreme a score of 100 indicates total disability. The SIP has been shown to be a sensitive measure of health status and, although used as a self-report, to be valid for quantitating the effects of chronic disease on functional behavioral capacity [3,4]. RESULTS
The analyses compared severity of impairments on the SIP across disease type as well as on each dimension within each disease. Table 3 presents the percent impairment and the
Table 2. Distribution of subjects according to Child’s score
Laennec’s PBC Chronic active hepatits Hepatitis B Hepatitis non-A-non-B Cryptogenic PSC Alpha-l antitrypsin
Child’s A
Child’s B
Child’s C
n
n
(%I
n
‘:;; (41) (22) (38) (33) (38) (33j
II 11 15 12 5 6 5 3
3 9 9
W)
:s; (22) (11)
: 0 18 3
(23) (0) (49) (33)
9 28 17 4 5 3 14 .3
(33j
Impact of Liver Disease
1081
Table 3. Percent impairment among different diagnostic groups and their rankings on each dimension of the Sickness Impact Profile Cryptogenie
PSC
Alpha- 1
30 (7) 17.51 25 (8) i4.51 47 (8) 1121 25 (6) i4.51 40 (5.5) 1111 28 (5) I61 30 (8) i7.51 21 (8) PII 24 (8) i2.51 38 (8) DOI 34 (6) [91 24 (7.5) l2.51
31 (8) [81 22 (7) I41 34 (4) [91 29 (8) 161 30 (6) [71 35 (7.5) PO1 28 (7) [51 20 (7) I31 19 (7) [21 36 (5.5) vu 39 (8) [I21 17 (4) Ul
19 (3) PI 11 (I) 12.51 29 (2) HO.51 17 (3) l6.51 29 (4) [10.5] 23 (3.5) [91 17 (3.5) i6.51 11 (2) i2.51 5 (1.5) VI 30 (4) [I21 16 (1.5) i4.51 16 (2) 14.51
17 (2) 16.51 20 (6) P.51 26 (1) U 11 13 (1) 131 16 (1) 14.51 20 (1) L8.51 17 (3.5) 16.51 11 (2) I21 7 (3) [II 28 (2.5) [I21 16 (1.5) 1101 16 (2) 14.51
16 (5)
24 (8)
22 (7)
12 (2)
13 (3)
22 (5)
24 (6)
28 (8)
27 (7)
14 (1.5)
16 (3)
23 (5.5)
23 (5.7)
28 (8)
27 (7)
16 (2.5)
16 (2.5)
CAH/ PNC
Hep. B+
i2.51 5 (1.5) Ul 23 (1) [10.5] 17 (3) [81 16 (2) i6.51
22 (5.5) [51 19 (5) I31 37 (5) [I21 20 (4) I41 30 (5.5) I91 35 (7.5) m 26 (6) [71 17 (6) I21 13 (4) PI 36 (5.5) 1111 29 (5) PI 24 (7.5) [61
22 (5.5) I61 12 (2) HI 38 (6) I111 27 (7) [71 40 (7.5) [I21 31 (6) [I81 20 (5) i4.51 16 (5) [21 18 (6) [31 37 (7) UOI 36 (7) I91 20 (6) l4.51
14 (4)
11 (1)
19 (6)
Psychosocial
19 (4)
14 (1.5)
Total
19 (4)
15 (1)
Social interaction
Laennec
PBC
20 (4)
16 (1)
WI
Ambulation Sleep Eating Work Home management Mobility Body movement Communication Recreation Alertness Emotion
Physical
1
14 (4) L2.51 39 (7) u21 22 (5) [91 22 (3) [91 22 (2) [91 14 (2) L2.51 14 (4) 12.51 14 (5) 12.51 28 (2.5) [1 II 20 (4) L6.51 18 (5) I51
L6.51 12 (2) [41 30 (3) [I21 15 (2) [51 21 (2) I91 23 (3.5) [IO.51 11 (1) L2.51
11 (2)
Hep. Non-A-Non-B
*Scores in parentheses are the rank scores; tied scores were averaged. Scores in brackets are the rank scores within each group across scales; tied scores are averaged.
ranking of severity for the various types of disease is noted in parentheses. The least overall impairment in life quality (15%) was observed in patients with PBC whereas the greatest impairment (28%) was observed in patients with Non-A and Non-B hepatitis. The rankings within disease type are presented in the brackets beneath the percent impairment score. It is interesting to note that for every disease type, the psychosocial impact of their disease was perceived as being more severe than the physical consequences of their disease. It is also noteworthy that the disparity between the perceived severity of the physical and psychosocial manifestations was not the same for the various diseases studied. Sleep was overall the most severely disrupted aspect of daily living, however, among individuals with cryptogenic cirrhosis, sleep disorders ranked only ninth among the 12 primary scales. In this latter group, problems maintaining alertness were the most severe perceived manifestation of the hepatic disease. Ability to ambulate showed marked variability among the various disease groups. It was the least impaired aspect of daily
functioning experienced by patients with Laennet’s cirrhosis and in patients with cirrhosis due to chronic hepatitis B infection, but was among the most severe areas of disability in patients with cirrhosis due to alpha-l antitrypsin deficiency. Alertness obtained a mean rank of 8.3 across disease groups; however, it ranked as the 4.5 and 6.5 most impaired area in the PSC and Laennec patients respectively, whereas it is the most severe aspect of impairment in the patients with cryptogenic cirrhosis. These results underscore the differences in severity manifestation among patients with different liver diseases with respect to their impact in specific aspects of daily living. The data were analyzed next to determine whether scores on the Sickness Impact Profile are related to clinical ratings of liver disease severity. Table 4 summarizes the group mean scores for physical and psychosocial impairment according to Child’s rating of liver disease severity. Analysis of variance did not reveal significant differences in mean SIP ratings within each group according to Child’s ratings, indicating that physical and psychosocial
1082
RALPH
E. TARTERet al.
Table 4. Mean Sickness Impact Profile scores according to Child’s index Child’s A R (s)
Child’s B .F (s)
2
Child’s C (s)
Physical impairment
Laennec’s PBC Chronic active hepatits Hepatitis B + Hepatitis Non-A-Non-B Cryptogenic PSC Alpha- 1 antitrypsin
4.3 8.2 11.3 0.0 21.0 N/A 7.9 18.0
(5.9) (7.41 ({;-;i (26:7) (8.3) (10.6)
17.0 8.6 13.8 11.2 33.0 25.3 12.0 7.0
(15.3)
20.2 12.4
(19.5) (13.7)
18.5 19.2 38.6 20.0 12.9 7.7
It:.!; (30:6)
I:!::; (4.3) (30.8) (35.6) (9.2) (10.4)
13.6 17.5 20.1 18.9 17.8 23.5 7.6 19.0
(10.7) (12.7) (16.6) (14.8) (21.5) (18.1) (9.2) (16.5)
22.6 15.6 24.2 23.2 19.6 25.0 11.8 23.3
(23.0) (9.2) (23.1) (16.0) (17.8) (25.5) (17.3) (25.4)
Psychosocial impairment
Laennec’s PBC Chronic active hepatits Hepatitis Bf Hepatitis Non-A-Non-B Cryptogenic PSC Alpha-l antitrypsin
5.3 15.4 15.9 12.5 31.0
(7.6) (11.7) (18.4) (9.2) 128.8) N/A‘ ’ (15.7) 16.4 (17.0) 23.3
impact of disease are not associated with liver disease severity indexed medically. DISCUSSION
This report is the first large scale examination of the differential impact of liver diseases on life quality in adults. Interestingly, across all liver disease types studied there is reported greater psychosocial disability than physical disability. The magnitude of this difference is variable, ranging from a 2% greater impairment for psychosocial functioning seen in patients with sclerosing cholangitis to a difference of 8% among patients with cirrhosis due to chronic hepatitis B infection. Another pertinent observation that can be made from these data concerns the relatively moderate degree of life quality impact that chronic liver diseases have on daily living. Although mean scores for each group reflect the adverse impact of the disease in question on life quality, it is important to note that the findings are somewhat inconsistent with the presence of chronic advanced liver disease having the potential for a fatal outcome. Despite the imminent threat to survival, severe deleterious changes in life quality as measured by the Sickness Impact Profile were not evident. Nor is clinical rating of severity, using medical criteria, associated with magnitude of psychosocial or physical impairment. The absence of a difference on the SIP scores according to severity of Child’s index is noteworthy. This negative result needs to be interpreted cautiously because the Child’s scores
were not available on all of the subjects. Hence, the possibility remains that a true difference may indeed exist, but because of insufficient cases, was not detected. Alternatively, it is possible that the medical and behavioral measures of disease severity reflect separate, and not necessarily related, consequences. It is not possible to unequivocally support one conclusion over the other to explain the obtained results. However, when the data are collapsed across disease type to yield three groups of Child’s scores having group sizes of 47, 83, and 68, the mean percent of subjects having a Child’s index A is 3 1%, Child’s index B is 44%, and Child’s index C is 43 %. These results would tend to suggest that, apart from the gradation of change from the Child’s score from A to B there is no systematic relationship between medical and behavioral measures of disease severity. It is additionally interesting to note that Laennec’s cirrhosis had rather inconspicuous effects on the key aspects of life quality assessed. This disease is particularly important for consideration because of the medical and public policy controversy surrounding the question of appropriateness of such patients for liver transplantation. In our sample, the patients with Laennec’s cirrhosis ranked fourth among the eight disease types assessed with respect to the degree of physical, psychosocial or total dysfunction. These findings suggest that chronic alcoholics with advanced liver diseases do not experience physical or psychosocial disability in a way that is greatly different from other liver disease conditions. It should be emphasized, however, that these results have no prognostic
Impact of Liver Disease
value with respect to detecting individuals who either will remain sober following transplantation or survive the surgical procedure. It should be noted that the prognosis for survival of liver transplantation is comparable in alcoholics and non-alcoholics [5]. The results obtained are necessarily limited by the measure employed. It should be noted that the Sickness Impact Profile has been used to document physical and behavioral disability in other chronic diseases and also shown to be a good indicator of overall quality of life [6,7]. None the less, the findings are restricted to self-report and hence the subject’s own impression of disability. Recent evidence has shown, however, that patients undergoing liver transplantation tend to report more severe deficit about their condition compared to a knowledgeable informant [8]. Thus, if there is reporting bias, it is likely to have been skewed in the direction of a conservative interpretation of the results. Finally, it should be pointed out that monitoring the physical and behavioral effects of chronic liver disease has substantial ramifications for the medical management of these patients. The capacity of the person to remain alert, communicate, attend to appetitive needs and drives may importantly influence their disease course and treatment compliance. Hence, quantitative information about the physical and psychosocial status of these patients may assist in decision making regarding
1083
the patient’s appropriateness for hepatic transplantation and monitoring their post-surgery course. Current ongoing research in our laboratory is directed at determining the degree to which pre-transplantation psychosocial and physical status might predict the long term outcome following surgery. Acknowledgemenrs-This study was supported by grants NIH 5ROl AM32556 and ROl AA 06601-03.
REFERENCES 1.
Hegedus AM, Van Thiel DH, Schade RR, Gavaler JS, Starzl TE. Nemopsychiatric characteristics associated with primary biliary cirrhosis. Int J Psych Med 1984; 14: 303-314. 2. Gilson BS, Gilson J, Bergner M, Bobbitt RA, Kresell S, Pollard WE, Vesselago M. The Sickness Impact Profile: Development of an outcome measure of health care. Am J Public Health 1975; 65(12): 1304-1310. 3. Beraner M. Bobbitt R. Pollard W. Martin D. Gilson B. fhe Sickness Impact Profile: Validation of a health status measure. Med Care 1978; 14: 5767. 4. Pollard W, Bobbitt B, Bergner M, Martin D, Gilson B. The Sickness Imoact Profile: Reliabilitv of a health status measure. Med Care 1978; 19: 14c155. 5. Starzl TE, Van Thiel DH, Tzakis AG, Shunzaburo I, Todo S, Wallis Marsh J, Staschak S, Stieber A, Gordon RD. Orthotopic liver transplantation for alcoholic cirrhosis. J Am Med Assoc 1988; 260: 2542-2544. 6. Hart L, Evans R. The functional status of ESRD patients as measured by the Sickness Impact Profile. J Chron Dis 1987; 4O(Suppl. 1): 17s-130s. I. Evans R. Quality of Life Assessment and the Treatment of End-stage Renal Disease. Seattle, WA: Battelle Human Affairs Research Centers; 1990. 8. Tarter R, Switala J, Arria A, Plail J, Van Thiel D. Quality of life before and after orthotopic hepatic transplantation. Arch Intern Med 1991; in press.
