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Quality-of-Life Measures in
Liver Transplantation
Mark S. Roberts
End-stage liver disease produces substar~ial changes in the quality of
patients' lives. Mental capacities are impaired (in some cases producing
coma) by hepatic encephalopa~y; large amounts of fluid may accumulate
in He abdomen (ascites), with accompanying compromises in mobility,
respiration, and increased risk of infection. Increased venous back-
pressure produces excessive bleeding in Be esophagus and stomach.
Decreased liver function may produce serious malnutrition with effects
on multiple organ systems.
Therapeutic modalities used to treat these complications often involve
trade-offs among many quality-of-life dimensions. For example, venous
bypass procedures that lower excessive venous pressure decrease the
incidence of bleeding and the amount of ascites, but Hey may exacerbate
hepadc encephalopathy and increase He risk of cooing disorders. When
successful, liver transplantation alleviates virtually all of He complica-
tions of end-stage liver disease, but it has its own set of effects on a
patient's physical well-being and life-style. Although He National Insti-
Lutes of Heath ~H) Consensus Conference on He evaluation of liver
transplantation recommended transplantation as an effective ~erapeubc
modality in certain forms of end-stage liver disease, He report noted: "we
Editors' Note: lbe editors believed it would be instn~ciive to have an article in a field where the
quality-of-life work thus far was modest enough to be encompassed in a single short article. Dr.
Roberts has prepamd such a piece for us in liver transplantation, an area that presents special
difficulties for appraisals of quality of life.
45
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46
has. ROBERTS
lack systematically gathered information on quality of life among longtenn
survivors" ASH consensus development statement, 1984~.
The following is a brief review of methods Cat have been used to
evaluate the quality of life in liver transplant patients. Standard quality-
of-life measures may requnre the patients to answer many specific and
sometimes subtle questions about life-style, as weD as the patient's inter-
pretadon of the impact of their disease on that life-style. Because patients
with end-stage liver disease often have serious costive impairments, it
is not always possible to use patient-directed, subjective assessment tools.
QUALITY-OF-LIFE MEASURES
A computer-based literature search encompassing medical jounces
from 1966 to He present, caped MEDDLE, produced 13 articles that
dealt explicitly win quality-of-life assessment of patients who had sur-
vived liver transplantation. The assessment methods used were separated
into four categones: alterations in neuropsychiatric and neurophysiologic
testing; He rate of return to work, school, or prior social situation; the
presence or absence of psychopathology; and scores on specifically de-
signed quality-of-life measures.
Alterations in Neuropsychiatric Testing
~ a study of liver transplant candidates, Guthkelch et al. (1979) showed
that patients with end-stage liver disease exhibit significant abnormalities
On several neurophysiologic tests, including visual evoked potentials and
brain stem-evoked potentials even in the absence of clinical encephalopa-
thy. ScIabassi et al. (1983), working with a group of 170 transplant
candidates, demonstrated Hat me severity of these abnormalities co~Te-
lated win He severity of clinical encephalopa~y, when alterations in
mental functioning were apparent on exam~natior~. Hegedus et al. (1984)
fourth that these abnormalities and associated neuropsychiatric ~mpa~-
ments in memory, visual-spatial awareness and perception, and cognitive
capability persisted after transplantation and Mat they had a detrimental
impact on patients' activities of dally living.
More extensive testing was perfonned on a subset of He patients
mentioned above. In a prospective analysis of 15 patients tested on 30
separate measures of intelligence, memos, language, and other neuro-
psychiatnc functions bow before and six weeks after transplantation, Tar-
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A!EASURE:S IN lien< TRANSPLANTATION
47
tar et al. (1983, 1984) found no difference between these padents' scores
on me Minnesota Multiphasic Persons Inventory (MMPl), 16 Person-
ality Factor Questionnaire (16Pl;), and standard intelligence quotient (TQ)
tests and a matched group of patients suffering from Crohn's disease,
another chronic liver disorder. There were, however, sign~ficar~t im-
provements in scores on Me Sickness Impact Profile.
Ability to Return to Work, School, or Prior Social Situation
Among a group of transplant padents surviving more than one year,
Stat et al. (1979) measured improvements In Me quality of life by noting
whether the patient resumed to school or work. The investigators found
improvements In 22 of 26 pediatric and adult patients. In a consecutive
series of 70 Slant patients, Williams et al. (1987) devised a simple
~e-leve} scale indicating fun, partial, or no rehabilitation, depending
upon whether the patient had returned to work or school, was able to leave
Me hospital and live at home, or exhibited no improvement in function.
FuD rehabilitation was achieved by 30 percent to 50 percent of the sample,
and Me likelihood of success was found to correlate with pre~ansplant
condition: the sicker Me patient was prior to surgery, Me less likely the
patient was to achieve fun rehabilitation. Among IS long-tenn survivors
of 94 transplants, MacdougaB et al. (1980) found 2 patients who demon-
strated "improvement" through their reman to work.
More recently, as part of a larger prospective study of 65 transplant
patients given quesdonna~res six months before and at least six months
af er transplant, Tartar et al. (1988) reported significant improvements In
several measures assumed to be correlated with quality of life. These
measures included return to work or school, number of days spent in the
hospice, exercise tolerance, and financial status.
Presence of Psychopathology
In a descnption of detailed pomransplant psychiatric interviews win
patients who were wed enough bow before and after the transplant to
sustain a two to two and one-half hour interview, House et al. (1983)
noted an increased incidence of depression, anxiety, regression, depen-
dence, and anger, as weU as eight other psychological conditions. Ondy
the incidence of organic brain syndrome, presumably related to We poor
metabolic milieu, decreased after transplantation.
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48
Scores on Specific Quality-of-Life Questionnaires
MS. ROBE=S
Tyrnstra et hi. (1986) developed a three-level questionnaire indicating
serious, not senous, and no physical complaints and high, moderate, and
low global life satisfaction. Two observers scored the questionnaire for
eight transplant survivors. Seven of eight patients reported high or mod-
erate satisfaction; five of eight reported either no serious complaints or no
complaints. ZiteRi et al. (1987) evaluated several measures in 90 con-
secutive pediatric patients who survived transplantation. Quality-of-life
measures included the number of hospitalizations and hospital days, the
age-appropr~ateness of year In school, cognitive funchon~ng, and multiple
measures of behavioral adjustment. The average number of days spent in
Me hospital decreased by 22 days each year, 75 percent of the pediatric
patients exhibited increased grown rates, and 78 percent of padents were
found to be no more Wan one year behind their age-appropn ate grade
level. A unique aspect of this study involved the a~nin~strabon of a
quali~-of-life questionnaire to Me parents of the child, concerning motor
skins, school and home behavior, and relationships way parents and
siblings. Each question was scow on a five-po~nt scale. Many patients
improved an average of one to two points after transplantation.
The 1988 study by Tartar et al. descnbed above also stressed perfom~-
ance on several quality-of-life measures, both from the patients' and
families' perspective. The investigators reported substantial improve-
ments in the responses on the Sickness Impact Profile, the Social Behav-
ior Assessment Schedule, and several psychological instruments designed
to measure family heath and mechanisms for coping with stress.
CONCLUSIONS
A major difficulty in evaluating Me effect of liver transplantation on
Me quality of life of padents suffering from end-stage liver disease is me
inability of many pre~ansplant patients to complete evaluations that could
then be compared with pos~nsplantation scores. Such profound ~mpa~r-
ments of mental capacity in end-stage liver disease mean Mat a large
percentage of transplantation candidates cannot be evaluated by standard
quality-of-life measures that rely solely on subjective patient responses.
To circumvent this difficulty, seven investigators have used measurable,
neurophysiologic tests that Hey believe correlate with me degree of
mend impairment as a proxy for quality of life. The assumption is that
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MEASURM IN ~~ STATION
49
mental impairment itself implies a poor quality of life. Similarly, several
researchers have used the level of general function, measure by return to
Me work, school, or social position occupied before developing liver
disease, as estimates of quality of life.
Under me assumption that quality of life is a subjective, individual
perception of the value of a health state, we cannot expect validity in a
measure of quality of life taken when a patient's mental capacity is
impaired. Nevertheless, this review supports several statements regard-
ing the quality of life following liver transplantation.
First, measurements of We return to work or social position are, in
general, reliable, easy to measure, and, Al else held equal, must at least be
positively correlated with quality of life. (See the cautionary remarks on
this issue on page 13~.
Second, because of mentad impairment, coma, or seventy of illness, He
decision to transport is often made not by me patient, but rather by the
patient's family and physicians when the patient is deemed incompetent
to assess the risks and benefits. Therefore, the development of measures
of level of mental functioning, return to work, and me presence or absence
of mental illness may help the family make more informed decisions
regarding the best~erapeutic intervention for the patient. In these circum-
stances we must rely more heavily on clinical testing or on ratings as-
sumed to be proxies for quality of life.
Third, when the liver disease is not sufficiently advanced to produce
serious mental impairment, there is substantial evidence that several self-
and family-reported quality-of-life measures win show improvement over
He pretransplant state, but quality of life may not return to the level He
patient enjoyed prior to the development of liver disease.
REFERENCES
Guthkelch, A.N., Sclabassi, R.J., Van Thiel, D.H., Schade, R.R., Hirsch,
R.P., and Starzl, T.E. A preliminary review of neurophysiological
data in patients evaluated for liver transplantation. (Abstract) Hepa-
tology 3~5~:827, 1979.
Hegedus, A.M., Tartar, R.E., Van Thiel, D.H., Gavaler, I.S., Schade,
R.R., and Stark, T.E. Neuropsychia~ic status of liver transplantation
patients one year after successful liver transplantation. (Abstract)
Hepatology 4~5~:1085, 1984.
House, R., Dubovsky, S.~., and Penn, I. Psychiatric aspects of hepatic
transplantation. Transplantation36~2~:146-150, 1983.
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so
MeS. ROBE:=S
Macdoug~, B.R., Calne, R.Y., McMaster, P., and Williams, R. Survive
and rehabilitation after or~otopic liver transplantation. Lancet
1~82~:1326-132S, 1980.
National Institutes of Heady WHO consensus development statement:
Liver transplantation—June 20-23, 1983. Hepatology 4~:107s-
IlOs (Supplement), 1984.
Sciabassi, R.~., Gu~kelch, A.N., Van Thiel, D.H., Schade, R.R., Hirsch,
R.P., and Stanza, T.E. Neuropsycholog~cal assessment of liver trans-
plant candidates. (Abstract) Hepatology 3~5~:120, 1983.
StarzI, T.E., Koep, L.~., Schroter, G.P., Hood, I., Haignmson, C.G.,
Potter, K.A., and Weill, R., 34. The quality of life after liver trans-
plantation. Transplantadon Proceedings ~ ~:252-256, 1979.
Tartar, R.E., Hegedus, A.M., Gavaler, I.S.~., Schade, R.R., Van Thiel,
D.H., and Stanza, T.E. Acute effects of liver transplantation on neu-
ropsychological capacity as determined by studies performed pre-
transplantation and four to six weeks following surgery. (Abstract)
Hepatology 3~5~:830, 1983.
Tartar, R.E., Van Thiel, D.H., Hegedus, A.M., Schade, R.R., Gavaler,
I.S., and Stanza, T.E. Neuropsychia~ic status after liver transplanta-
tion. Journal of Laboratory and Clinical Medicine 103~5~:776-782,
1984.
Tartar, R.E., Erb, S., BiDer, P.A., Switala, J., and Van Thiel, D.H. The
quality of life following liver transplantation: A preliminary report.
Gastroenterology Clinics of North America 17(1):207-217, 1988.
Tyms=, T., Bucking, J., Roorda, J., van den Heuvel, W.J., and Gips,
C.H. The psycho-social impact of a liver transplant programme. Liver
6(5):302-309, 1986.
Williams, J.W., Vera, S., and Evans, L.S. Socioeconomic aspects of
hepadc transplantation. American Joumal of Gastroenterology
82(11):1115-1119, 1987.
ZiteDi, B.J., Garmer, J.C., Malatack, J.J., Urbach, A.H., Miller, J.W.,
Williams, L., Kirkpatrick, B., Brewing, M.K., and Ho, M. Pediatric
liver transplantation: Padent evaluation and selection, infectious
complications, and life-style after transplantation. Transplantation
Proceedings 19(4):3309-3316, 1987.
Representative terms from entire chapter:
liver disease
