The Concept of Psychosocial Adjustment
Previous studies have presented substantial evidence that OLT improves QOL. However, the term “QOL” is very broad and includes physical and mental status, as well as psychosocial adaptation.1 Although several studies of psychosocial functioning in post-OLT patients have used only measures of psychological or mental health status, it is obvious from the term “psychosocial” that more than just intrapsychic processes are involved. The concept includes interactions between the individual and other individuals and the institutions that make up his or her sociocultural environment. Such interactions are usually achieved through loosely prescribed behavioral patterns. termed “roles.” The functional efficiencies of an individual's role behavior (e.g., spouse, parent, professional) tend to be highly correlated with judgments concerning his or her level of psychosocial adjustment.9 Further, it has been consistently observed in many major diseases that the nature of the patient's psychosocial adjustment can be just as important as the status of his or her physical disease in determining the quality of an illness experience.9 There is a small body of literature on the effects of OLT on QOL,10 but few studies have specifically focused on the assessment of the psychosocial adjustment of OLT recipients to their new life conditions.
Overall PAIS Score
The PAIS has been used to evaluate outcomes of coronary artery bypass surgery,11 hemodialysis,12 diabetes retinopathy,13 bone marrow transplantation,14 and heart transplantation.15 In these studies, pretreatment global PAIS scores ranged from 31.313 to 58.5,11 and posttreatment scores ranged from 23 to 34. The posttreatment scores for the study by Pinson et al. ranged from 24 to 31.16 Two studies previously showed an improvement in certain PAIS domain scale scores and the total score after liver transplantation using bivariate correlations on cross-sectional samples ranging from pretransplantation to 5 years after.17, 18 In a study of 19 heart transplant patients, Walden et al. found a PAIS global score of approximately 54 before surgery, improving to approximately 34 at a mean of 30 months after transplant.15
Comparing our sample's overall PAIS score with those of other groups of patients studied by the author of the questionnaire,6, 9 we observed that patients submitted to OLT reported better functioning than patients undergoing hemodialysis or patients with chronic heart disease. Nevertheless, our patients showed a higher mean score (poorer functioning) than the norm-group of patients with hypertension.9 Our sample also showed a better overall functioning than the recipients of different types of solid organ transplantations presented in a previous study16 and another sample of patients after allogenic bone marrow transplantation.19 In the studies by Jenkins et al.20 and Caccamo et al.,21 no data about the overall PAIS score were given. To our knowledge, no other studies have administered the PAIS to posttransplant patients.
Factors Associated With Poorer Outcome
In our study, a substantial proportion of patients (23%) reported poor adjustment to OLT, although the only factor associated with overall poor adjustment was female gender. Gender differences in psychosocial functioning were also found in studies with bone marrow transplantation survivors.19, 22 In our previous study, women reported higher psychiatric morbidity and a higher percentage of medical problems than men, and a lower percentage of women were active.22
In the present study, women showed a greater dysfunction in health care orientation (domain I), sexual relations (domain IV), extended family relationships (domain VI), and psychological distress (domain VII). Given the lack of scientific evidence for these phenomena, the following conclusions are drawn from our clinical experience. The health care orientation dimension of the PAIS addresses the nature of the respondent's attitude to health care and whether this attitude will promote a positive or a negative adjustment to the OLT. In our study women seemed to suffer more from their illness state. This may be because, in our milieu, while men with a severe illness take support from their spouse or partner for granted, sick women are expected to care not only for themselves, but for their husband (or partner) and their children as well; they are also responsible for domestic chores. After transplantation, female patients are no longer regarded as sick and are expected to gradually return to nonpatient status.23 This imbalance is also reflected in the state's pensions and benefits system. Male transplant patients are considered permanently disabled and do not need to work because they receive a pension from the Spanish National Health Service, but female transplant patients are expected to continue to perform their family duties. The nonfulfillment of a woman's role at home may produce real domestic conflict. Furthermore, whereas male transplant patients expect to be cared for by the female members of their family, the reverse is not the case: Women may not receive the care they require unless they have daughters.
Greater problems with sexuality in women than in men has already been described in previous studies done in bone marrow transplant patients by other authors and also by our group.22, 24, 25 Decrease in sexuality in women after OLT may have a variety of causes: loss of body image due to hypertrichosis and Cushing's syndrome caused by prolonged immunotherapy, hypoestrogenism, and fear of relapse.19 In addition, many women do not like to show their surgical scars.
Another remarkable finding of our study is that the unemployment rate in our patients had not changed 1 year after OLT, similar to previous studies performed in the United States and the UK (Table 1).26, 27 There are two main explanations for this phenomenon in our setting. First, patients with permanent disability due to OLT receive adequate economic coverage from the Spanish National Health Service. Second, given that transplant patients tend to be relatively old (mean age, > 50) and will need frequent medical follow-up visits, it is very difficult for them to obtain employment. Analyzing the different domains separately, we were able to obtain more information about the psychosocial functioning of OLT patients with specific characteristics. We observed that older patients and patients who underwent OLT at later stages of their lives also reported a greater impact on sexuality.
As in previous research carried out in bone marrow transplantation by other authors28, 29 and also by our group,22 older age at OLT was found to be associated with poorer post-OLT outcome. Although in our previous study in bone marrow transplants we also found that quality of life and psychosocial distress improved with the passage of time,22 in the present study time since OLT was not significantly associated with psychosocial functioning.
There seems to be no doubt that liver transplantation improves QOL, but special attention should be paid to women recipients, who seem to have more difficulty than men in adjusting to the psychosocial consequences of the operation. Female patients may be in particular need of psychological intervention after OLT. Support, perhaps in the form of patient groups, could be offered to recently transplanted patients.
Although this study has shed light on a number of psychosocial aspects of OLT, its retrospective status means that the results can be regarded only as preliminary. Prospective studies are now required to establish how to identify patients at increased risk and to explore the best means of intervention to relieve immediate distress and to prevent long-term problems.