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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
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-
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.
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
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.
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 transplantationJune 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.