Longterm followup of patients with alcoholic ... - Wiley Online Library

5 downloads 54763 Views 197KB Size Report
school diplomas, and more than 40% had bach- elor's degrees or higher. ... current condition as excellent or good, 10% rate it as fair ..... [ ]Vocational trade school.
Long-Term Follow-Up of Patients With Alcoholic Liver Disease Who Underwent Hepatic Transplantation Gregory Everson, Gayatri Bharadhwaj, Robert House, Michael Talamantes, Bahri Bilir, Roshan Shrestha, Igal Kam, Michael Wachs, Frederick Karrer, Barbara Fey, Cathy Ray, Tracy Steinberg, Cathy Morgan, and Thomas P. Beresford

A

lcohol-induced liver disease is the most common cause of cirrhosis in the United States, and an increasing number of patients with alcoholic liver disease (ALD) are undergoing hepatic transplantation. Early results from the University of Pittsburgh showed that the posttransplant survival of a series of patients with ALD did not differ from that of nonalcoholic recipients.1 ALD was a rare indication for hepatic transplantation before the National Institutes of Health consensus conference on liver transplantation in 1983.2 However, recent United Network for Organ Sharing (UNOS) statistics indicate that nearly 20% of patients currently undergoing transplantation in the United States have ALD.3 In 1990, a Michigan court ruled that alcoholism alone was not a contraindication to liver transplantation.4 The ruling also suggested that a period of abstinence from alcohol that exceeded expected patient survival should not be a prerequisite for listing a patient for transplantation. These concerns stimulated Lucey et al5 at Michigan to begin a systematic evaluation of liver transplantation in patients with ALD. Reported results suggest that the short-term outcome of liver transplantation in the alcoholic is equivalent to that in nonalcoholics.1,3,5,6-8 One-year patient and graft survival after liver transplantation is similar, and the alcoholic liver transplant recipient does not experience an increased number of postoperative complications or rates of retransplantation. Given the overall satisfactory medical outcome, the major issue confronting transplant centers is whether the alcoholic patient will return to alcohol dependence in the posttransplant period.9-11 Published reports suggest that abstinence rates in the early posttransplant period appear to be acceptable. For example, 90% of patients receiving transplants at University of Michigan remained abstinent from alcohol after 1 year of follow-up.5 A

recent editorial reported 1-year abstinence rates ranging from 93% to 83% from 6 liver transplant centers encompassing an experience with 258 patients who underwent liver transplantation for ALD.8 Despite these low rates of relapse to alcohol, the period of follow-up is too short for a disease activity (alcoholism) that is measured in decades. Longer follow-up periods are required to ultimately define overall relapse rates. Because of the ambiguities noted above, we have evaluated our own experience with liver transplantation in patients with ALD. The goals of our study were twofold: (1) to define patient and graft survival and rates of relapse to alcohol use and abuse in our patients undergoing liver transplantation for ALD, and (2) to determine which psychosocial variables are characteristic of the posttransplant alcoholic patient and increase the risk of relapse to alcoholism.

Methods Subjects. A total of 68 patients with ALD underwent hepatic transplantation at the University of Colorado Health Sciences Center, Denver, CO, between December 1, 1988, and September 30, 1996. There have been 14 deaths (Table 1). Forty-four of the survivors had at least 1 year of posttransplant follow-up, and 42 agreed to participate in the controlled study of psychosocial variables. The 2 patients who did not participate have no evidence of relapse to alcohol based on clinic notes and family interviews. A control group of 38 patients was matched to the study group, according to age and gender, and subjects were selected from the cohort of nonalcoholic patients receiving

From the University of Colorado Health Sciences Center, Denver, Colorado. Address reprint requests to Gregory T. Everson, MD, Director, Section of Hepatology, University of Colorado Health Sciences Center, 4200 E Ninth Ave, B-158, Denver, CO 80262. Copyright r 1997 by the American Association for the Study of Liver Diseases 1074-3022/97/0303-0012$3.00/0

Liver Transplantation and Surgery, Vol 3, No 3 (May), 1997: pp 263-274

263

264

Everson et al

Results Table 1. Causes of Death After Liver Transplantation in Patients Receiving Transplants for ALD Early postoperative deaths Infection Primary graft nonfunction Air embolism Late postoperative deaths Alcohol abuse* Lung cancer Coronary bypass, infection Myocardial infarction Peripheral vascular disease, infection Total

Outcome of the Cohort of Patients Receiving Transplants for ALD 3 2 1

4 1 1 1 1 14

*Return to pathological drinking was associated with the death of 4 patients. Causes of death were cryptococcal brain abscess (1), rejection caused by noncompliance with medications (2), and renal failure and infection related to noncompliance (1).

transplants between December 1, 1988, and December 31, 1995. The demographics of these two groups is shown in Table 2. Study Protocol. The medical records of all liver transplant recipients were reviewed to identify patients who met study criteria for ALD and to identify appropriate controls. Patients from both groups underwent a formal telephone interview with one of our study personnel (G.B.) according to a standardized form (see the Appendix). The information recorded from this interview was corroborated by a spouse, close friend, family member, or significant other at the initial interview or at a separate session. The information collected included demographics, marital status, employment and education, posttransplant use of alcohol, acceptance of alcoholism, behavioral consequences, emotional status, hope/self-esteem, and social relationships. All patients who received liver transplants for ALD underwent random screens of blood or urine for alcohol.

Table 2. Demographics of AD and Control Groups

Number of subjects Male Female Age (mean) Male Female Follow-up category .3 yr 2-3 yr 1-2 yr

AD

Control

42 32 10

38 29 9

53 53

53 52

26 6 10

25 13 0

Patient Survival. The survival of the 68 patients who underwent liver transplantation for ALD is compared with the survival of nonalcoholic adult patients (n 5 246) (Figs. 1 and 2). In this series, the survival of alcoholic patients was similar to that of nonalcoholic patients. However, decreased survival in patients with ALD may occur after prolonged follow-up. This decrease in long-term survival may be related at least in part to deaths caused by resumption of pathological alcohol intake. If deaths related to alcohol relapse are excluded, the survival curves of alcoholic and nonalcoholic patients are identical. The asterisks in Figure 1 indicate 4 patients who died as a result of resumption of pathological drinking. They died at 1.4, 3.3, 4.5, and 5.7 years after transplantation. The patient who died at 1.4 years was a man who died of cryptococcal brain abscess. However, this complication was directly attributable to resumption of pathological drinking and noncompliance with medical management. The other three alcohol-related deaths occurred in women who experienced progressive social isolation and demoralization and developed a reclusive disregard for their personal medical care. The patient who died at 5.7 years was a participant in our controlled study; the other 3 died before the controlled study was initiated. Rate of Retransplantation. Six patients underwent retransplantation, yielding an overall retransplantation rate of 9% (6/68). The indications for retransplantation were either primary graft nonfunction (n 5 3), hepatic artery thrombosis (n 5 2), or portal vein thrombosis (n 5 1). No patient underwent retransplantation for recurrent ALD. Rate of Return to Pathological Drinking. Detection of return to pathological alcohol consumption was based on a variety of clinical data, including positive urine screens, hospital admissions, or clinical assessment during outpatient evaluations. Return to pathological drinking was defined as alcohol intake of sufficient quantity to impair hepatic or cognitive function or to satisfy criteria for alcohol dependency. Sixty-two patients survived the early posttransplant period; 6 resumed pathological drinking (10%), and 4 of these died. The 2 survivors have been successfully rehabilitated and are currently abstinent with normal liver

Long-Term Follow-Up in ALD

265

Figure 1. The survival (Kaplan-Meier) of patients receiving transplants for ALD at the University of Colorado (December 1988 to September 1996). 95% confidence limits are indicated by dotted lines. *patients (n 5 4) who died related to relapse to pathological drinking.

function. Five additional patients returned to intermittent consumption of minimal (1 drink total) to moderate (1 drink per day) amounts of alcohol. Figure 3 shows the time course of return to pathological drinking, and Figure 4 shows the time course for resumption of any drinking. An encouraging finding was that most who relapsed to pathological drinking did so within the first 2 years after transplantation. However, late relapse may still occur. A worrisome finding was the tendency for an increasing number of alcoholic patients to drink small amounts of alcohol as time passed. Controlled Study of Psychosocial Variables Resumption of Alcohol Intake. Our study of the subset of 42 alcoholic-dependent (AD) patients

shed additional information on the rate of relapse to alcohol use. Fewer AD patients than controls reported return to any amount of alcohol use (17% [7/42] v 45% [17/38]; P , .01; Chi-squared, 7.49). Two AD patients and no controls had two or more positive responses to the CAGE questions, suggesting a return to pathological drinking. Both of the AD patients with positive CAGE questionnaire responses reported consuming more than 5 standard drinks at a sitting. Although no controls had positive CAGE questionnaire responses, 1 described drinking more than 5 standard drinks at a sitting. Thus, the posttransplant ‘‘heavy’’ drinking rate in AD patients was 5% (2/42) and in controls was 3% (1/38) (P 5 NS). In both groups, all remaining patients who reported return to alcohol consumption, 5 AD patients and 16 controls,

Figure 2. The survival (Kaplan-Meier) of adult nonalcoholics receiving transplants at the University of Colorado (December 1988 to September 1996). 95% confidence limits are indicated by dotted lines.

266

Everson et al

Figure 3. Time course of relapse to pathological drinking. Most who relapsed to heavy drinking did so within 2 years posttransplant.

defined intake as less than 2 drinks per sitting. In AD subjects who returned to drinking, none tried alcohol in the first 6 months, after transplantation, 2 began between 6 and 12 months, and 5 began between years 2 and 3. The two pathological drinkers in the AD group both relapsed to alcoholism between the second and third years. One died 5.7 years after transplantation, and 1 was successfully rehabilitated. AD patients were more likely to associate posttransplant consumption of alcohol as a hazard to the liver graft (31% [13/42] v 11% [4/38]; P , .05).

Figure 4. Time course of relapse to any amount of drinking. Relapse occurred both early and late posttransplant.

In addition, the AD group believed that having the transplanted liver made it easier to refrain from drinking alcohol (48% [20/42] v 21% [8/38]; P , .02). The transplant team’s educational emphasis on the harmful effects of alcohol on the liver occurred primarily before transplantation and was predominantly directed toward the AD group. Most of the AD group (86%) but few of the controls (16%) recalled preoperative counseling from the transplant team about the need for abstention after transplantation (P , .001). In contrast, in the

Long-Term Follow-Up in ALD

posttransplant period only 17% of AD patients and no controls reported that their physicians asked about alcohol use at regular follow-up visits. Marital Status, Employment, and Education. Patients in the AD group were less likely to be married at the time of our follow-up interview (study v control: 55% [23/42] v 92% [35/38]; P , .001, Chi-squared, 13.95) and more likely to have been either divorced (14% [6/42] v 3% [1/38]) or widowed (10% [4/42] v 3% [1/38]; P , .05; Chisquared, 5.38 for combined divorced and widowed). Four patients in the AD group and 1 of the controls reported that liver transplantation adversely affected their marriage (P 5 NS). Thirty of the 42 AD patients (71%) and 31 of 38 controls (82%) were employed at some point before transplantation (P 5 NS). The majority of the remaining patients were homemakers. At the follow-up interview, 33% of previously employed AD patients and 45% of controls were employed (P 5 NS). After transplantation, the unemployed groups tended to ascribe lack of employment to the transplant, but AD patients were less likely to do so than controls (AD v controls: 55% v 81%; P , .05). The educational level of both of our groups of patients was quite similar; nearly 90% had high school diplomas, and more than 40% had bachelor’s degrees or higher. Depressive Disorders or Conditions Mimicking Depression. Clinical depression may occur in recipients of

liver allografts for a number of reasons, including alcohol use, physical condition, mental or emotional stress, or a side effect of medications. One clinical concern was whether the AD recipient would be at increased risk of experiencing neuropsychiatric side effects of immunosuppressive or other medications. Transient depressive or demoralizing symptoms were reported by 62% of AD patients and 47% of controls (P 5 NS). In 17% of AD patients and 13% of controls, these depressive symptoms persisted for more than 1 month. The high frequency of depression in both groups suggests a need for continued and close monitoring of these patients. One case of severe depression in the AD group was clearly related to relapse to uncontrolled drinking and resulted in an attempted suicide. In our experience, depression tends to improve with a decrease or alteration in the immunosuppressive regimen. Despite the concerns raised by these data, we should emphasize that most recipients describe themselves as feeling better

267

than they did before transplantation; 90% rate their current condition as excellent or good, 10% rate it as fair, and none describe it as poor. Conditions Mimicking Anxiety. Most patients (47% of AD patients and 61% of controls) describe feeling jumpy or nervous after taking immunosuppressive medications (P 5 NS). Transient confusional episodes after patients left the hospital occurred in 26% of AD patients and 32% of controls (P 5 NS). Compliance to Immunosuppressive Medications. Patients often ascribe many posttransplant neuropsychiatric symptoms to immunosuppressive medications. In fact, 74% of AD patients and 92% of controls attributed unpleasant side effects to these medications. Despite these side effects, compliance to immunosuppressive therapy is extremely high. Of AD patients, 24% reported never missing a dose, 69% could recall missing only one dose, and only 7% missed two or more doses. Of controls, 19% never missed a dose, 76% missed only one dose, and only 5% missed two or more doses. Vaillant Prognostic Factors. George Vaillant’s longitudinal studies of alcoholic patients12 identified four prognostic factors predictive of long-term abstinence: (1) activities that structured time that might otherwise be spent drinking, (2) rehabilitation relationship with another person, (3) source of hope or improved self-esteem, and (4) noxious consequence of continued alcohol use. Our study addressed some components of these factors. Although more than 70% of AD patients were employed at some time before transplantation, many were unemployed after transplantation. The majority of AD patients (63%) identified someone from whom they could seek help to refrain from drinking. However, 38% could identify no one to call for help. The rehabilitation relationship with another person may diminish with time; 70% of AD patients identify a rehabilitation relationship less than 3 years after transplantation, but more than 3 years after transplantation only 40% identify such an individual. This is particularly noteworthy because 75% of AD patients who identify a person in a rehabilitation relationship consider that individual important in maintaining abstinence from alcohol. A source of hope or improved self-esteem serves as a clinical counterweight to the sense of guilt that often besets the recovering alcoholic. The latter guilt may often serve as a reason for relapse to

268

Everson et al

alcohol use. In our follow-up study we found that 24% of AD patients and 8% of controls reported a bothersome sense of guilt (P 5 NS). Sixty-two percent of AD patients and 66% of controls believed life was hopeful or at least easier after transplantation. Half (52%) of AD patients and 75% of controls believed their spiritual life had improved after transplantation. Attendance at Alcoholics Anonymous or increased religious involvement was viewed by 52% of AD patients as important in maintaining abstinence. Vaillant’s fourth factor, a specific noxious consequence to alcohol use (such as the disulfiram reaction), was not addressed by our study because none of our patients received disulfiram.

Discussion ALD is the most common cause of cirrhosis in the United States. Increasing numbers of patients with ALD are undergoing hepatic transplantation, and more are being referred to liver transplant centers.1,3 Given the limited supply of donor organs, most programs performing liver transplantation have developed an evaluation process that restricts transplant recipients to only those with the greatest likelihood of remaining abstinent to alcohol after transplantation.13 However, there are no uniform criteria for selection of these patients. Selection of Patients With ALD for Liver Transplantation The patients we describe in this report all went through a rigorous selection process. First, our referring physicians tend to refer patients who are likely to benefit from attempts at rehabilitation and who have reasonable social support. Our pretransplant evaluation includes an extensive workup by specific psychiatrists (T.B., R.H.) and a social worker (M.T.). In addition, random screens of blood and urine are performed in patients on the waiting list. Although we desire a period of abstinence before evaluation, a fixed interval (i.e., 6-month rule) is not an absolute requirement. Patients have been removed from the waiting list for positive screens, and others who have had biopsy-proven alcoholic hepatitis have not been offered transplantation. The latter circumstance has occurred when the clinical suspicion of active, ongoing alcohol abuse was high but corroborative history from the patient, family, or significant other

was lacking. Thus, one may conclude that we have chosen to perform transplants mainly in the ‘‘cream’’ of the alcoholic population. Results of our posttransplant follow-up must be interpreted in this context. Patient Survival Kumar et al1 at the University of Pittsburgh reported their experience with transplantation of 73 patients with ALD in 1990. The median period of follow-up was 18 months, and 1-year survival of the alcoholic group (74%) was no different than that of a matched nonalcoholic control population (67%). Lucey et al5 at the University of Michigan also found that survival 1 and 2 years after transplantation was similar between alcoholic (n 5 45) and nonalcoholic (n 5 111) groups (ALD v control, 1 year: 78% v 70%, P 5 NS; 2 years: 73% v 65%, P 5 NS). Indeed, the results from several small series1,5,6,7,8,14,15 indicate that the 1-year actuarial survival of patients receiving transplants for ALD is identical to that of nonalcoholics (Table 3). In contrast, an analysis of data collected by the UNOS liver transplant registry indicated that the diagnosis of ALD may be independently associated with an increased risk of death or retransplantation compared with other liver diseases, in particular primary biliary cirrhosis.3 The findings in our patient mimic the results from other centers but also indicate that not only short-term but also long-term survival (up to 7.5 years) is similar to that of nonalcoholic patients. However, we observed mortality that was directly related to resumption of pathological drinking in 4 cases. This observation suggests that recurrent disease in the alcoholic population may ultimately influence overall survival when large populations are studied. Relapse to Alcohol Intake Most published data have been restricted to the first year of follow-up after transplantation and indicate that few alcoholics relapse to alcohol use within that period. Published 1-year rates of relapse (Table 4) vary from 8% to 22%, although methods for monitoring and reporting relapse are highly variable between centers. Our data shed new information on the time course of relapse to any drinking and specifically addresses relapse to pathological drinking (Figs. 3 and 4). We observed a cumulative rate of relapse to any drinking of approximately 30%, with maximum follow-up of approximately 7.5 years. Patients may relapse as early as before the end of the first posttransplant

269

Long-Term Follow-Up in ALD

Table 3. Reported 1-Year Survival Rates in Patients With ALD and Controls Reference

Country or Institution

N

ALD

Control*

1 5 6 7 8

Pittsburgh Michigan Mayo Clinic Austria Five US Centers† Baylor Pacific Medical Center Cedars-Sinai (Los Angeles, CA) Colorado (1993 data)‡ University of California, San Francisco Great Britain France Colorado‡

73 45 30 58

74% 78% 88% 71%

67% 70% 87% —

68 29 43 30 43 24 75 68

89% 94% 86% 83% 100% 66% 80% 91%

— — — — — 56% 75% 87%

13 14 This report

*Controls vary between studies. In some series they represent a selected subgroup of the nonalcoholic transplant population; in others they represent the entire nonalcoholic group. †The data from Michigan were also included in this reference but were not relisted in this table. ‡The 30 patients evaluated in 1993 are part of the cohort of 68 in the current report.

year or even 4 to 5 years later. Fortunately, relapse to pathological drinking is rare (10%-15% of cases) and is normally detected with the first 2 posttransplant years. Nonetheless, relapse to pathological drinking is extremely serious; 4 of our 6 patients died as a direct result of relapse to alcoholism. Despite the concerns with relapse to alcohol

intake, we found in our controlled study that use of any alcohol after transplantation was actually much more common in the nonalcoholic group (ALD v control: 17% v 45%, P , .01) and that the ‘‘heavy‘‘ drinking rate was similar (ALD v control: 5% v 3%, P 5 NS). The cumulative increase in modest use of alcohol reflects the acceptability of alcohol use in

Table 4. Reported 1-Year Rates of Relapse to Alcohol Intake in Patients With ALD Reference

Country or Institution

N

Relapse

1 5

Pittsburgh* Michigan Pathological (n 5 2) Any (n 5 5) Mayo Clinic Austria* Five US Centers Baylor Pacific Medical Center Cedars-Sinai (Los Angeles, CA) Colorado† (1993 data) University of California, San Francisco Great Britain Colorado*†

52

11.5%

45 45 30 44

4.4% 11% 13% 15%

68 29 43 30 43 24 62

13% 17% 8% 9% 8% 22% 8.2%

6 7 8

14 This report

*These three centers calculated rates of relapse based on the patients who survived the initial postoperative period and who therefore had a chance to return to drinking. †The 30 patients evaluated in 1993 are part of the cohort of 68 in the current report.

270

Everson et al

our society. The reduced rates of use of alcohol after transplantation by those receiving transplants for ALD reflects two attitudes characteristic of the alcoholic group. First, alcoholics were more likely to associate alcohol intake as potentially harmful to the transplant (31% v 11%, P , .05). Second, alcoholics believed that having a transplanted liver made it easier to refrain from drinking (48% v 21%, P , .02). Social Stability and Risk Factors for Return to Alcoholism One concern with a disease that is measured in decades (alcoholism) is that studies of small numbers of patients for short periods do not give a true picture of the potential problem.12 For this reason we examined factors that have been proven to be of value in predicting relapse to alcoholism in nontransplant patients.13 Socially, the alcoholic group was more likely to be isolated, fewer were married, and more were divorced or widowed. In addition, despite similar levels of education, the alcoholic group was more likely to remain unemployed after transplantation (P 5 NS). In the early posttransplant period, most alcoholics maintained a relationship with someone who effectively supported their rehabilitation from alcoholism. In contrast, after 3 years posttransplant most could not identify such a supportive individual. In addition, a proportion of alcoholics (24%) experienced a bothersome sense of guilt that may counterbalance an enhancement of their self-esteem that may occur as a result of the transplant. All of these features indicate that the posttransplant alcoholic patient is at ongoing risk of relapse and needs adequate clinical, psychological, and social monitoring. In conclusion, current methods of evaluation select patients with ALD for liver transplantation who have an acceptably low rate of relapse to alcohol use. Survival in this subgroup of patients with ALD is similar to that of nonalcoholic patients. However, some patients with ALD experience return to pathological drinking and suffer morbidity and even mortality related to this relapse. Additional studies of large numbers of patients are needed to determine the ultimate longterm rate of relapse to pathological drinking. Our results suggest that most patients who relapse to pathological drinking do so within 2 years after transplantation. Finally, analysis of prognostic factors suggests that posttransplant alcoholics are at

risk for long-term relapse to alcohol. Close monitoring of these patients probably will be necessary to insure optimum outcome after liver transplantation.

References 1. Kumar S, Stauber RE, Gavaler JS, Basista MH, Dindzans VJ, Schade RR, et al. Orthotopic liver transplantation for alcoholic liver disease. Hepatology 1990;11:159164. 2. Consensus panel of the consensus development conference on liver transplantation, National Institutes of Health consensus development statement. Liver transplantation. June 20-23, 1983. Hepatology 1984; 49(suppl):107s-110s. 3. Belle SH, Beringer KC, Detre KM. An update on liver transplantation in the United States: Recipient characteristics and outcome. In: JM Cecka, PI Terasaki (eds). Clinical Transplants 1995:19-34. 4. Beresford TP, Turcotte JG, Merion R, Burtch G, Blow FC, Campbell D, et al. A rational approach to liver transplantation for the alcoholic patients. Psychosomatics 1990;31:241-254. 5. Lucey MR, Merion RM, Henley KS, Campbell DA, Turcotte JG, Nostrant TT, et al. Selection for and outcome of liver transplantation in alcoholic liver disease. Gastroenterology 1992;102:1736-1741. 6. Krom RAF. Liver transplantation and alcohol: Who should get transplants? Hepatology 1994;20:28s-32s. 7. Berlakovich GA, Steininger R, Herbst F, Barlan M, Mittlbock M, Muhlbacher F. Efficacy of liver transplantation for alcoholic cirrhosis with respect to recidivism and compliance. Transplantation 1994;58:560-565. 8. Beresford TP, Lucey MR. Alcoholics and liver transplantation: Facts, biases, and the future [editorial]. Addiction 1994;89:1043-1048. 9. Schenker S, Perkins HS, Sorrell MF. Should patients with end-stage alcoholic liver disease have a new liver? [editorial]. Hepatology 1990;11:314-319. 10. Moss AH, Siegler M. Should alcoholics compete equally for liver transplantation? JAMA 1991;265:1295-1301. 11. Sorrell MF, Donovan JP, Shaw BW. Transplantation in the alcoholic: a stalking horse for a larger problem. Gastroenterology 1992;102:1806-1808. 12. Vaillant G. The natural history of alcoholism. Cambridge, MA: Harvard University, 1983. 13. Lucey MR, Merion RM, Beresford TP. Liver transplantation and the alcoholic patient. Medical, surgical and psychosocial issues. New York: Cambridge University, 1994. 14. Byrd GL, O’Grady JF, Harvey FA, Calne RY, Williams R. Liver transplantation in patients with alcoholic cirrhosis: selection criteria and rates of survival and relapse. BMJ 1990;301:15-27. 15. Doffoel M, Fratte S, Vanlemmens C, Boudjema K, Ellero B, Whoehl-Laelge MJ, et al. Results of liver transplantation (LT) in 75 French patients with alcoholic cirrhosis (AC). Comparison with a non-alcoholic group [abs]. Hepatology 1992;16:50A18.

271

Long-Term Follow-Up in ALD

APPENDIX Posttransplant Follow-Up Interview GENERAL INFORMATION Study code number: Date: Name: Address: Phone: Interview done by: 1. 2. 3. 4. 5.

Study code number: Date: Age: Sex [ ]Male [ ]Female Diagnosis: [a] Preoperative Clinical diagnosis [b] Preoperative Psychiatric diagnosis [c] Postoperative Explant diagnosis 6. Date of transplant: 7. Number of days since transplant: 8. Informant: [a] Patient [b] Spouse [c] Living partner [d] Other family member [e] Other source MARITAL STATUS First I would like to ask you some questions concerning your marital status: 1. What is your marital status: a) [ ]Single [ ]Married (go to (e)) b) If single have you always been single? [ ]Yes (go to (d)) [ ]No [ ]Not applicable c) If no, which of these best applies to you? [ ]divorced [ ]widowed [ ]currently living with a significant companion [ ]not applicable d) If yes, is there currently a significant companion in your life? [ ]Yes [ ]No (go to 3) [ ]Not applicable If yes, do you and this person live in the same household? [ ]Yes [ ]No [ ]Not applicable

e) If married, which of the following applies to you? [ ]married and living with a spouse [ ]married but separated [ ]not applicable f) How many years have you been married to this person? years g) Is this a first marriage for you? [ ]Yes (go to 2) [ ]No [ ]Not applicable If no, which of the following applies to you? [ ]divorced and remarried [ ]widowed and remarried [ ]Not applicable 2. Has your marital status or significant relationship changed since your transplant? [ ]Yes [ ]No (go to 3) If yes, when? month year 3. Did your transplant cause any serious problems or difficulties in your relationship? [ ]Yes [ ]No If yes, what were they? EMPLOYMENT AND EDUCATION 1. What is your occupation? 2. Are you working in the same place you were before the transplant? [ ]Yes [ ]No [ ]Not applicable 3. How many days after the transplant did you get back to work? 4. Are there things at work that you did before your transplant that you cannot do now? [ ]Yes [ ]No [ ]Not applicable 5. If you are not working, is it because of the transplant? [ ]Yes [ ]No [ ]Not applicable If yes, explain how the transplant has affected your health: 6. What is your educational background? [ ]Less than 4 years of high school [ ]High school graduate—GED equivalent [ ]Vocational trade school [ ]Bachelor’s degree [ ]Master’s degree [ ]Doctorate or professional degree ACCEPTANCE OF ALCOHOLISM I would like to ask you some questions about alcohol use that I ask people who saw Dr. Beresford or Dr. House prior to the transplant. Whatever your experience may be, we can learn a lot from your participation. The next few questions are about alcohol use since your transplant.

272

Everson et al

1. Have you had any alcohol since your transplant? [ ]Yes [ ]No 2. Have you felt the need to cut down on your drinking? [ ]Yes [ ]No If yes, have you tried to cut down but drink again later? [ ]Yes [ ]No 3. Do you spend any money on buying alcohol? [ ]Yes [ ]No If yes, how much? $ Does the amount of money you spend on alcohol put a strain on your monthly budget? [ ]Yes [ ]No 4. Have you gotten annoyed or angry when people have talked about your drinking? [ ]Yes [ ]No 5. Have you felt guilty about your drinking? [ ]Yes [ ]No 6. Have you needed to have a drink first thing in the morning? [ ]Yes [ ]No If yes, did you experience any of the following symptoms? a) flush or blush—your face and hands felt hot and your face turned red? [ ]Yes [ ]No b) break out into hives? [ ]Yes [ ]No c) feel very sleepy? [ ]Yes [ ]No d) have nausea? [ ]Yes [ ]No e) have headaches, or head pounding or throbbing? [ ]Yes [ ]No f) have heart palpitations, where your heart beats so hard you could feel it? [ ]Yes [ ]No If yes to questions 2-6, 7. How soon after the transplant did you start drinking? [ ]30 days [ ]6 months [ ]1 year [ ]2 years [ ]more than 2 years 8. What kind of alcoholic beverages have you had since your transplant? Beer [ ]Yes [ ]No Wine [ ]Yes [ ]No Wine coolers [ ]Yes [ ]No Champagne [ ]Yes [ ]No Hard liquors [ ]Yes [ ]No If yes to hard liquors Vodka [ ]Yes [ ]No Gin [ ]Yes [ ]No Whiskey [ ]Yes [ ]No 9. If yes, did you feel you drank more than you wanted or intended? [ ]Yes [ ]No 10. Did you drink more often than you wanted to? [ ]Yes [ ]No

11. Can you give me the greatest or most amount of beverages you may have had in a single day? 12. Did you find yourself drinking more on the weekends or weekdays? 13. Do you feel your drinking resulted in any of the following? [ ]loss of working days [ ]violent behavior [ ]giving up or reducing important activities like sports or associating with friends or relatives? [ ]interfering with your working or taking care of school or household responsibilities? [ ]causing problems in any marriage/love relationships? [ ]being arrested? 14. Was there ever a time since your transplant when you drank almost every day, for a week or more? [ ]Yes [ ]No 15. When you started drinking after your transplant, did you ever become tolerant to alcohol, that is, you drank a great deal more in order to get an effect, or found that you could no longer get high on the amount you used to drink? [ ]Yes [ ]No If yes, a) What beverages and what quantity (in oz) b) How many did you need for an effect? c) Was this amount different from what you needed in the past for effect? [ ]Yes [ ]No d) How many did you need before you felt that you had enough? e) How many did you need before you passed out? 16. Do you think of alcohol being a risk for you? [ ]Yes [ ]No 17. Do you feel your alcohol intake has any effect on your posttransplant recovery? [ ]Yes [ ]No If yes, in what way: [ ]missed days at work [ ]missed social gatherings [ ]resulted in perspiration [ ]resulted in being put on disability [ ]lost your job 18. Who has been most supportive during your recovery? [ ]spouse or significant other [ ]parent [ ]child [ ]friend [ ]therapist [ ]clergy [ ]no support If yes to no support, did having fewer people in your life make it easier to drink? [ ]Yes [ ]No

Long-Term Follow-Up in ALD

Now, I would like to ask the support person some questions. Would you agree with most of what the patient just said? [ ]Yes [ ]No If No, please explain: Now, I would like to ask the patient some questions about family dynamics. 1. Have the members of your family (parents or sibling) ever had a drinking problem? [ ]Yes [ ]No 2. If yes, have any of them ever had liver disease? [ ]Yes [ ]No If yes, please explain what kind: BEHAVIORAL CONSEQUENCES The next set of questions are related to your liver and how it has affected your drinking. For some, a new liver makes it more difficult to refrain from drinking, and for others the presence of a new liver makes it easier to refrain from drinking. 1. Has it been easier or more difficult for you? [ ]easier [ ]more difficult [ ]neither 2. Were you counseled on the need for abstention from alcohol pretransplant? [ ]Yes [ ]No If yes, by whom? [ ]primary MD [ ]gastroenterologist [ ]psychiatrist [ ]surgical team 3. How often do you see your doctor? 4. Does he/she ask about your drinking? [ ]Yes [ ]No EMOTIONAL STATUS We understand that sometimes the recovery period from a liver transplant can be pretty rough. 1. Have you noticed any times you felt especially depressed or demoralized? [ ]Yes [ ]No If yes, for how long [ ]few days [ ]longer than a week [ ]longer than a month 2. Overall, how do you feel about yourself now compared to how you felt before the transplant? [ ]excellent [ ]good [ ]fair [ ]poor Others have sometimes felt that the medicines they must take for immune suppression have made them feel nervous or jumpy. 1. Have you ever felt this way? [ ]Yes [ ]No

273

2. Have you had periods of confusion since you left the hospital? [ ]Yes [ ]No We know that cyclosporine is important to prevent rejection of your new liver. Keeping your liver healthy is a positive outcome of cyclosporine. 1. Have you noticed any side effects from cyclosporine or any other medicine? [ ]Yes [ ]No If yes, please explain: 2. Have you ever missed any doses of cyclosporine? [ ]Yes [ ]No If yes, how many times? 3. Have you informed your doctor about this? [ ]Yes [ ]No HOPE/SELF-ESTEEM Sometimes life throws things our way that might make a person feel guilty. 1. Has this happened to you since the transplant? [ ]Yes [ ]No 2. Overall, would you say that life now is [ ]harder than before the transplant [ ]easier than before the transplant [ ]about the same as before the transplant SOCIAL RELATIONSHIPS 1. If you wanted to drink but knew you should not for health reasons, whom would you call to help you refrain from drinking? [ ]spouse or significant other [ ]parent [ ]friend [ ]child [ ]therapist [ ]no one [ ]other 2. How important has this person been in helping you stay abstinent from alcohol? [ ]very important [ ]somewhat important [ ]not important [ ]not applicable 3. Did your life change a lot after the transplant? [ ]Yes [ ]No 4. Did this change involve relationships? [ ]Yes [ ]No If yes, for the better or the worse? [ ]better [ ]worse [ ]not applicable 5. Did this change involve financial issues? [ ]Yes [ ]No If yes, for the better or worse? [ ]better [ ]worse [ ]not applicable 6. Did this change involve spiritual/religious issues? [ ]Yes [ ]No If yes, for the better or for the worse? [ ]better [ ]worse [ ]not applicable

274

Everson et al

Now I would like to ask some questions to those people who have been abstinent since the transplant. 1. What in your mind helped you to stay away from alcohol? [ ]improved working conditions [ ]improved housing [ ]improved marriage [ ]a session of advice and education about drinking at the start of the transplant

2. Which of the following have been helpful in maintaining sobriety? a) Attending Alcoholics Anonymous [ ]Yes [ ]No [ ]not applicable b) Increased religious involvement [ ]Yes [ ]No [ ]not applicable c) Have you received any treatment for alcoholism either pre or post transplant? [ ]Yes [ ]No If yes, please explain: