Preoperative expectations and postoperative quality of life in liver transplant survivors☆☆☆

Article Outline

• Abstract
• Methods
  • Interview
  • Questionnaires
  • Sickness impact profile
  • Functional assessment of cancer therapy-general
  • External reference group
  • Statistical methods
• Results
  • Patient characteristics
  • Assessment of the current state: Back to normal (interview question 1)
  • Impairment of QOL in specific areas
  • Influence of clinical and sociodemographic parameters on QOL
  • Preoperative expectations, subjective estimates of the current status, and overall QOL (interview question 2)
  • Impact of information provided (interview question 3)
• Discussion
• Conclusion
• Acknowledgements
• Supplier
• References
• Copyright

Abstract 

Holzner B, Kemmler G, Kopp M, Dachs E, Kaserbacher R, Spechtenhauser B, Vogel W, Sperner-Unterweger B. Preoperative expectations and postoperative quality of life in liver transplant survivors. Arch Phys Med Rehabil 2001;82:73-9. Objective: To assess normalization in the lives of liver transplant patients and the impact of preoperative expectations on postoperative quality of life (QOL). Design: A semistructured interview, 2 QOL questionnaires, and chart reviews of medical histories. Setting: Internal medicine department at Innsbruck university hospital, Austria. Participants: Fifty-five patients (32 men, 23 women) with liver transplants. Interventions: The Sickness Impact Profile (SIP) and Functional Assessment of Cancer Therapy-General. Results: Patients' preoperative expectations of a normal life style posttransplantation were predominantly optimistic (60%), but postoperatively only 40% thought that their expectations had been realized. The patients' SIP values showed significant impairments in nearly every area of life when compared with the values of a healthy control group. Only “complications during the hospitalized phase” had a statistically significant impact among the sociodemographic and clinical parameters on postoperative QOL. The lowest QOL scores were found among patients whose expectations of a return to normal life style had not been realized. Conclusion: Unmet life-style expectations after liver transplantation may lead to increased stress, which affects QOL long term. This finding is of clinical relevance; therapeutic measures, particularly professional pretransplant counseling, are indicated. © 2001 by the American Congress of Rehabilitation Medicine and the American Academy of Physical Medicine and Rehabilitation

Keywords:  Liver transplantation, Quality of life, Rehabilitation, Treatment outcome

WITH LIVER TRANSPLANTATION becoming more or less a routine procedure in the treatment of end-stage chronic liver disease, the criteria for evaluating treatment outcomes have changed noticeably. The relevant question is no longer whether and how long a patient will survive, but rather with what restrictions on quality of life (QOL) is such a treatment procedure associated. Interest in QOL as an outcome variable in transplantation surgery is marked by an increasing number of publications on this subject; there were 117 publications between 1989 and 1993¹, ² and 222 published studies between 1994 and June 1999.³, ⁴, ⁵, ⁶, ⁷, ⁸, ⁹

In the past, a restriction on QOL was often put on the same level with impairment in psychologic, physical, and social functioning. Instruments such as the Sickness Impact Profile (SIP)¹⁰, ¹¹, ¹², ¹³ or the Nottingham Health Profile¹⁴, ¹⁵ reflect this concept. The scales used in these instruments are unipolar (from “no impairment” to “maximum impairment”); healthy individuals without impairment serve as the reference standard and are expected to register the highest scores on the respective scales.¹⁶, ¹⁷ In some of the newer QOL instruments, such as the European Organization for Research and Treatment of Cancer QLQ-30,¹⁸ or the Functional Assessment of Cancer Therapy-General (FACT-G),¹⁹ the emphasis is on subjective experience, which can be assessed by bipolar scales (eg, very dissatisfied to very satisfied). Healthy individuals are no longer considered the absolute measurement standard.

Reports unanimously show that although there is an improvement in the QOL of patients after liver transplantation,³, ²⁰, ²¹, ²², ²³ their functional level continues to be impaired.²⁴, ²⁵ In the rehabilitation of liver transplantation patients, their subjective feelings that their lives have returned to normal is of particular relevance. Beyond this, it is of interest to know if subjective expectations before liver transplantation influence the QOL after the transplant. For instance, patients who had expected to “return to normal life” but did not might experience a greater impairment in their QOL than patients who had no such expectations.²⁶

In this study, the following questions were addressed: (1) Are there areas in which the lives of liver transplantation patients have not normalized?; (2) Is there any association between QOL and the subjective assessment “feeling normal/not normal”?; and (3) What influence do preoperative expectations have on postoperative QOL?

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Methods 

The study was performed between February and July, 1997, at the Department of Internal Medicine, at Innsbruck University Hospital. Between 1987 and 1997, 62 German-speaking patients had liver transplants at the hospital's transplantation surgery unit. Fifty-five were included in the study: 7 patients returned incomplete questionnaires.

Inclusion criteria were a minimum of 18 years of age; chronic liver disease; a minimum interval of 1 year between transplantation and study; informed consent; and no other severe illness at the time of the study.

All patients had waited at least 3 months between their first contact with the Department of Internal Medicine and transplantation. Before surgery, information was given to patients by a standardized procedure that covered all relevant aspects of somatic concern. Immunosuppressive therapy was started on the day of transplantation, usually with a triple-drug treatment of cyclosporine A (2.5mg/kg of body weight twice daily), azathioprine (about 1.5mg/kg of body weight once daily), and prednisolone (about 3-5mg/kg of body weight once daily). Prednisolone was reduced early after the transplant and withdrawn, usually within the first 2 years of treatment. Single-drug therapy with cyclosporine A was implemented from 3 to 5 years posttransplant.

Clinical data, such as severity of illness before transplantation, duration of hospitalization, and medical complications during the hospital stay, as well as in the follow-up outpatient phase, were obtained from the patients' medical records. Medical complications (ie, surgical complications, drug intolerance, drug interactions, infections) were classified by the degree of severity—“none,” “minor,” “moderately severe,” “severe,” or “life-threatening.” These ratings were assigned by the physicians in charge of liver transplantation and who were responsible for providing medical postoperative care.

The study consisted of a brief telephone interview with every patient, always by the same interviewer), and completion by patients of QOL questionnaires (FACT-G, SIP), which were mailed to them.

Interview 

In the short, structured interview, participants were first asked about their subjective perceptions of “back to normal” (Would you say that through transplantation your life has normalized again?). Response categories were “yes,” “with some limitations,” and “no.” For analysis, the categories were summarized as: “yes” → “back to normal,” “with limitations,” and “no” → “not back to normal.”

Participants were then asked about preoperative expectations (Before transplantation, did you expect that your life would normalize after the surgery?) Response categories were: “positive expectations,” “negative expectations,” and “no expectations at all.”

Finally, participants were asked to evaluate the information given to them about the consequences of liver transplantation (To what extent were you informed about the consequences of the transplantation surgery you were to undergo? Would you consider this information adequate?). Response categories were: “yes,” “partly,” and “no.”

The reasons given for the answers to questions 1 through 3 were also recorded.

Questionnaires 

The choice of the QOL inventories used in this study reflects the 2 main aspects of QOL: functional impairment and subjective experience of (possibly restricted) well-being. The first aspect, transplantation-induced impairments experienced by patients, was assessed by the SIP,²⁷ which has been extensively used. The second, subjective well-being, was measured by the FACT-G, a well-established, widely used questionnaire that is targeted to various other chronic illesses as well as to cancer.

Sickness impact profile 

The SIP is a behaviorally based health status measure used extensively in clinical trials, including studies with liver transplant patients, since its development in the 1970s.²⁷ It has 136 items that can be aggregated into 12 categories representing specific areas of activity. Four categories define a physical dimension (ambulation, mobility, body care, movement), 4 categories make up a psychosocial dimension (communication, alertness behavior, emotional behavior, social interaction), and 5 categories are independent (sleep and rest, eating, work/occupation, home management, recreation/pastimes). A percentage score is obtained for the various categories and dimensions as well as for the overall SIP score, expressed on a scale from 0 to 100.²⁸ Patients with higher scores have more severe health-related functional limitations.

We used the German version of the instrument, the reliability and validity of which has been established by Huetter and Wuertenberger.²⁹

Functional assessment of cancer therapy-general 

The FACT-G¹⁹ is the core questionnaire of a collection of QOL inventories that focus on chronic illness Functional Assessment of Chronic Illness Therapy.³⁰ It is an internationally used and psychometrically tested generic QOL questionnaire, with test-retest reliabilities ranging from .82 to .92 and internal consistencies of subscales ranging from .65 to .89.¹⁹

The FACT-G is a self-assessment instrument of 29 items (5-point Likert scale) that patients can complete in 10 minutes. In addition to an overall QOL score (sum of all items), there are subscales for “physical well-being” (7 items), “social well-being” (7 items), “emotional well-being” (6 items), “functional well-being” (7 items), and relationship with doctors (2 items).

To facilitate comparisons between scales, transformed FACT-G subscores were calculated by converting the original values linearly to a range from 0 to 100 (0 = worst QOL, 100 = best QOL).

External reference group 

The SIP values of liver transplant patients were compared with published SIP scores of 594 healthy subjects.³¹ This sample served as our reference group and was comparable in its sociodemographic data with our sample of liver transplant survivors.

Statistical methods 

Comparisons between patients and the controls concerning QOL data were made by Student's t test for independent samples because only means and standard deviations were available for the latter group.

A multiple linear regression analysis (stepwise backward elimination of independent variables) was performed to study the impact of sociodemographic and clinical parameters on total QOL. The effects of group (“normalized,” “not normalized”) and expectation on overall QOL were assessed by a 2-way analysis of variance (ANOVA). All calculations were performed by using SPSS, version 6.0 for Windows.^a

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Results 

Patient characteristics 

Fifty-five patients were included (32 men, 23 women; average age, 51.9 ± 11.9yr). Further demographic and clinical variables are presented in tables 1 and 2.

Table 1: Sociodemographic Data

Table 2: Clinical Data

Abbreviations: B-Ci, hepatitis B cirrhosis; C-Ci, hepatitis C cirrhosis; α1-AT-Ci, alpha-1 antitrypsin cirrhosis; PBC, primary biliary cirrhosis; HH-Ci, hereditary hemochromatosis; Al-Ci, alcoholic cirrhosis.

The mean duration between first diagnosis and transplantation was 6.5 years. Patients were hospitalized for the surgery for an average of 46.9 days. The average time since surgery was 4.7 years. Sociodemographic and clinical data for the 7 patients who returned incomplete questionnaires did not differ markedly from the 55 study patients.

Assessment of the current state: Back to normal (interview question 1) 

The subjective assessments of patients about “return to normal life” after the transplantation yielded the following results: 40% regarded themselves as able to lead a normal life, whereas 60% did not (42% stated they had “limitations,” 18% replied “no”).

The reasons given for the negative assessments were both physical and psychosocial. Seventeen patients cited diminished capacity for work, side-effects of drugs, fatigue, gastrointestinal problems, and illnesses such as osteoporosis. Eighteen patients cited psychologic distress, occupational handicaps, early retirement, or depression as impairments.

Impairment of QOL in specific areas 

Results of the SIP comparison of liver transplant patients with the group of healthy controls are presented in table 3. The overall SIP score was 9.9, with deficits in the psychosocial dimension (9.4) being greater than those in the physical dimension (4.7).

Table 3: Comparison of SIP Data: Liver Transplant Recipients Versus Healthy Control Group

Abbreviation: NS, not significant.

NOTE. Control group cited from Wirnsberger et al.³¹

Compared with the reference group (table 3), the patients show significantly more impairments (p < .001) in almost every area of life. Particularly severe deficits were in the categories “work” (42.3), “recreation/pastimes” (22.1), “alertness behavior” (15.3), “sleep and rest” (14.9), and “social interaction” (10.4). These coincide with the reasons given for “lack of normalization,” such as “dimished capacity for work,” “fatigue,” and “occupational impairments.” The only differences that were not significant were those of “impairment in mobility” and “emotional behavior,” with the latter showing a trend level of significance.

QOL subscores from the FACT-G are summarized in table 4.

Table 4: QOL Data (FACT-G): Liver Transplant Recipients (n = 55)

The lowest scores were in the social (72.07; range, 0-100) and the functional domains (73.61; range, 0-100). Slightly higher values were found in the FACT-G subscales “emotional” and “physical.”

Influence of clinical and sociodemographic parameters on QOL 

The influence of the following sociodemographic and clinical variables on the patients' postoperative QOL (FACT-G) was investigated by using multiple linear regression: age, gender, educational status, time elapsed since transplantation, severity of illness before transplantation, duration of hospital stay, medical complications during inpatient and/or outpatient treatment, relapse, and number and severity of recurrent infections.

The only factor with a statistically significant influence on the FACT-G total score (p = .02) was “complications during hospitalized phase.” Severe complications during inpatient treatment were associated with a poorer QOL after transplantation. No other variables had a significant influence on the FACT-G total score.

Preoperative expectations, subjective estimates of the current status, and overall QOL (interview question 2) 

Thirty-three patients (60%) said they had expected to be able to lead a “normal” life after transplantation; 20 patients (36.4%) had no such expectations. Only 2 patients (3.6%) claimed to have had no expectations at all.

Table 5 shows the comparison between pretransplantation expectations and subjective estimates of the current status.

Table 5: Preoperative Expectations Versus Assessment of Current Status

NOTE. Two patients denied having any expectations about their postoperative lifestyle.

Only one third of the patients who had expected to return to a normal life style actually rated themselves as living a normal life.

Figure 1 shows the relation between global QOL (FACT-G) and the expectations and outcome regarding normalization of life.

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• Fig. 1. 

  Effects of preoperative expectations and current status on overall QOL.

A 2-way ANOVA with “expectations” and “outcome” (currently normal, currently not normal) as independent variables showed that outcome had a statistically highly significant influence (currently not normal: 81.6 ± 12.8; currently normal: 98.8 = 9.4; ANOVA, F_1,46) = 28.59, p < .001) on overall QOL for the total sample.

The influence of expectations on overall QOL was not significant for the group as a whole; however, there was a statistically significant interaction between expectations and outcome (F_1,46 = 5.11, p = .029). For this reason, separate analyses were performed for patients who assessed their condition as being “back to normal” and for those who did not. In the former group, no influence of preoperative expectations on overall QOL were observed. In the latter group, patients whose preoperative optimistic expectations were unfulfilled claimed to have a lower QOL in comparison with those who never expected that their lives would be “back to normal” after transplantation (Mann-Whitney U test, p < .023).

A 2-way ANOVA of the combined influence of preoperative expectations and actual outcome on impairments in overall QOL, as assessed by SIP, showed that only outcome had a significant influence (F_1,49 = 4.368, p = .042); expectations of outcome did not (F_1,49 = 0.574, p = .452). There was no interaction between these 2 factors. The mean total SIP score ± standard deviation for patients who considered their current status as being normal was 6.20 ± 8.28; for patients who did not assess their condition as normal, the mean score was 12.29 ± 9.96.

Impact of information provided (interview question 3) 

Thirty-three patients (60%) regarded the quality of information provided preoperatively as satisfactory; 7 (12.7%) felt they had not been adequately informed; 14 (25.5%) described the information as “moderately adequate”; and 1 patient (2%) had no opinion. Statistical analysis showed that patients who felt they had been adequately informed had significantly lower values in the SIP total score (p < .05) (ie, less impairment in their QOL in comparison with those who said that they had not received adequate information before transplantation). Analysis of the FACT-G total scores yielded similar results without reaching statistical significance.

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Discussion 

In this study, we attempted to identify factors that have a long-term influence on the postoperative QOL of liver transplant patients. We investigated the impact of sociodemographic and clinical parameters, paying special attention to preoperative expectations.

The QOL of liver transplant patients has been reported to be generally poorer than that of healthy individuals.¹, ⁴, ¹⁴, ²¹ Our results agree with those previously reported. The physical and psychosocial functional abilities assessed with SIP remained well below that of the reference group in nearly all areas. Thus, it is of interest to investigate factors responsible for this situation.

Slightly more problems were reported in the psychosocial dimension (communication, alertness behavior, emotional behavior, social interaction) than in basic physical abilities (ambulation, mobility, body care/movement).³² In the area of psychosocial functions, there was a great disparity between healthy subjects and our study's patients in subjectively experienced attention and ability to concentrate. This concurs with reported deficits in cognitive functions after liver transplantation.²³, ³³, ³⁴

The most prominent problems were in the areas of work and recreation and pastime. For example, patients experienced limitations in the amount of work they could do or in the variety of recreational activities they could pursue. Similar results were found by Littlefield et al²⁴ and Adams et al.¹¹ It is possible that when complex activities are involved, limitations in the physical and in the cognitive-emotional areas tend to proliferate. These findings are in agreement with patients' statements concerning normalization.

A study³ of the influence of sociodemographic and pre- or perioperative clinical factors showed that they were only minimally associated with long-term QOL. This is not surprising because there was on average a 5-year interval between transplantation and QOL assessment. Even at this late point in time, it was possible to establish a correlation between severity of complications during hospital stay and current QOL (more severe complications were associated with a poorer QOL). Certainly, this association is not causal. Rather, it can be presumed that severity of medical complications correlates with poorer physical condition and with protracted rehabilitation.

The severity of complications during a hospital stay is an interesting additional prognostic factor that could be used in planning for rehabilitation. Compared with patients who have a regular course of hospital stay, those with considerable complications should probably be offered a more intensive postoperative care program consisting of additional psychosocial support and more frequent follow-up visits.³⁵

The most important aspect of this study is the consideration of possible effects of preoperative expectations. Preoperative expectations of patients with favorable outcomes had little influence on postoperative QOL, but patients with less satisfactory outcomes were quite severely affected by these expectations. More precisely, patients whose preoperative optimistic expectations remained unfulfilled claimed to have a markedly lower QOL compared with those who from the beginning did not expect that their lives would be “back to normal” after transplantation.

Considering the earlier-mentioned facts, it should be noted that 60% of the patients expected to lead a normal life after surgery, but only 40% of that group said their expectations had been fulfilled. Why, then, do patients have such optimistic expectations about life after liver transplantation? The following reasons should be considered.

First, patients may expect not only survival, but also a cure by undergoing a major surgical intervention that is so carefully planned. Second, patients may fail to understand the information provided to them about the surgery and its aftermath. It can also be expected that psychologic defense mechanisms lead to an optimistic interpretation of the information.³⁶, ³⁷ Consequently there is the possibility that patients underestimate the limitations even after undergoing transplantation surgery.

Optimistic expectations regarding postoperative life can be of short-term help in that they can serve as a coping mechanism within the context of the surgery and the associated hospital stay. However, our results show that, eventually, such optimism has a negative effect if reality does meet expectations. Unfulfilled expectations result in disappointment and dissatisfaction that can lead to increased stress, which, in turn, affects long-term QOL.²⁶ This finding is of considerable clinical import and has specific therapeutic consequences.

Several oncology centers have already considered these consequences. Halhuber³⁸ described a procedure in which patients are given preoperative psychologic counseling to facilitate postoperative adaptation. This shortened the hospital stay duration and helped reduce postoperative stress. Surman³⁹ called this psychologic preparation “preoperative learning.”

In the matter of patients with chronic disease awaiting liver transplants, there is usually enough time between first contact with the hospital and transplantation to perform such a counseling procedure. In our study, this time always exceeded 3 months.

Certain limitations of our study must be considered when interpreting the results. The cross-sectional design might result in a biased recall of events. In particular, this may apply to the expectations patients claimed they had before the surgery. Thus, some respondents, experiencing significant difficulties after transplantation, might have been reluctant to report that they had expected to return to normal activities. However, because interviews were by telephone, which provides visual anonymity, such intentional distortion of expectations should have been diminished in a socially desirable direction. This is further supported by the fact that patients usually responded without hesitation to the question about preoperative expectations.

A further caveat concerns the use of a reference group of subjects in good health. This group served only as an approximate basis for “normalcy,” expressed in terms of SIP scores, to assess the patients' impairment in certain life domains. Being comparable with the patient group in basic sociodemographic characteristics such as age and gender, the reference group should be able to fulfill this purpose. However, such a group cannot fully replicate a matched control group.

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Conclusion 

Our findings indicate the need for adequate preoperative psychocologic measures to counteract unrealistic expectations of patients undergoing liver transplantation. Further studies, preferably prospective intervention studies, are needed to investigate in detail the effect of these measures on the patients' long-term QOL.

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Acknowledgements 

The authors are grateful for the thoughtful comments of W. Wolfgang Fleischhacker.

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Supplier 

a. SPSS Inc, 233 S Wacker Dr, 11th Fl, Chicago, IL 60606.

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    • Abstract
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