**3. Factors influencing QOL measurements: Age, gender, expectancies, cause of liver disease, differences between men and women and mode of administration**

Persons with severe liver disease often have a poor quality of life before liver transplantation (van den Plas, 2003). This poor quality of life is related to chronic disease and a decline in health caused by poor liver function (Marchesini, 2001). Medical treatments may be of some help in limiting symphtoms in cirrhosis and its complications (Hussain, 2001; Younossi, 2001; Girgrah, 2003; Gutteling, 2008). However, a more complete return of quality of life and health must usually wait until after recovery from a successful liver transplantation procedure (Castaldo, 2009). In addition, cross-cultural issues have to take into account (Hunt, 1986).

Currently, liver transplantation is the treatment of choice in selected cases of acute and chronic liver failure and HRQOL reached is in general satisfactory, although below the level of the general population (Cleemput, 2007). Balanced results have been measured one year post- transplant (Takinella, 2010). Results, however, must be interpreted with caution as QOL improvements may have been overstated due to variables such as selection bias, exclusion of severely ill and deceased patients, too many short-term studies and suboptimal methodology (Younossi, 1998).

In the studies published about QOL after liver transplantation in the nineties, only generic instruments were used (Levy, 1995). It is only recently that QOL data have been obtained through specific liver disease questionnaires (Jay, 2009). We will mention some studies that have identified factors known to enhance QOL.

For example, patients with a history of alcoholism or who were regular drug users can be accepted in a transplant program only, after rehabilitation (Lucey, 2002; Gangeri, 2002). However, some studies observed that they have a greater incidence of psychiatric disease or psychological disorders which are responsible for a reduction in their QOL (Dew, 2000; 2001). Recent publications have addressed this problem, as a transplant candidates, alcoholic patients may be considered as a transplant candidates after psychiatric assessment. The detection of urinary ethylglucuronide allows the detection of alcohol consumption in alcoholic liver disease patients awaiting liver transplantation, (Erim, 2007), although fully consensued recommendations have not been achieved, the general recommendation is to dedicate more time assessing patients and increasing communication within the multidisciplinary transplant team (Kotlyar, 2008).

The differences in QOL between male and female patients continue to be a subject of research (Cowling, 2004; Lowry, 2010). QOL assessed gender differences have been detected in chronic illnesses: e.g. women scoring lower levels of QOL (Vazquez, 2004). The same results were obtained when assessing chronic HCV-related liver diseases. Teixeira et al. 2006, using the SF-36 or the specific LDQOL instrument found statistically significant differences. They tested differences in the following domains: liver disease symptoms, concentration, memory, worrying about the disease and sexual problems. Russell et al 2008, with the administration of, SF-36 the Center for Epidemiologic Studies Depression Scale (CES-D), and Beck Anxiety Inventory Scale, observed similar results.

Gifford. et al, in Australia, using the generic instrument SF-12, observed a reduction of QOL for women between 15 and 71 years of age (Gifford, 2003). While the reasons for the lower QOL in women have not yet been clearly defined, the findings indicate that social and cultural problems associated to the disease may be implicated. Interestingly, these observations have been repeated for different chronic conditions, backgrounds or geographic origins. In Spain this has been corroborated by Ferrer et al using the CLDQ (Ferrer, 2006 ).

The main concern among men is related to their professional activities; they are worried about not being able to provide for their families. Although there are different circumstances implicated in symptoms or in alteration in the QOL, the way that patients react to the diagnosis or treatments and its consequences are different in both genres (Gifford, 2005).

In our experience in the Liver Transplant Unit, we observed, using the generic NHP that three months after liver transplant women were scoring higher than men, but after six

Currently, liver transplantation is the treatment of choice in selected cases of acute and chronic liver failure and HRQOL reached is in general satisfactory, although below the level of the general population (Cleemput, 2007). Balanced results have been measured one year post- transplant (Takinella, 2010). Results, however, must be interpreted with caution as QOL improvements may have been overstated due to variables such as selection bias, exclusion of severely ill and deceased patients, too many short-term studies and suboptimal

In the studies published about QOL after liver transplantation in the nineties, only generic instruments were used (Levy, 1995). It is only recently that QOL data have been obtained through specific liver disease questionnaires (Jay, 2009). We will mention some studies that

For example, patients with a history of alcoholism or who were regular drug users can be accepted in a transplant program only, after rehabilitation (Lucey, 2002; Gangeri, 2002). However, some studies observed that they have a greater incidence of psychiatric disease or psychological disorders which are responsible for a reduction in their QOL (Dew, 2000; 2001). Recent publications have addressed this problem, as a transplant candidates, alcoholic patients may be considered as a transplant candidates after psychiatric assessment. The detection of urinary ethylglucuronide allows the detection of alcohol consumption in alcoholic liver disease patients awaiting liver transplantation, (Erim, 2007), although fully consensued recommendations have not been achieved, the general recommendation is to dedicate more time assessing patients and increasing communication within the

The differences in QOL between male and female patients continue to be a subject of research (Cowling, 2004; Lowry, 2010). QOL assessed gender differences have been detected in chronic illnesses: e.g. women scoring lower levels of QOL (Vazquez, 2004). The same results were obtained when assessing chronic HCV-related liver diseases. Teixeira et al. 2006, using the SF-36 or the specific LDQOL instrument found statistically significant differences. They tested differences in the following domains: liver disease symptoms, concentration, memory, worrying about the disease and sexual problems. Russell et al 2008, with the administration of, SF-36 the Center for Epidemiologic Studies Depression Scale

Gifford. et al, in Australia, using the generic instrument SF-12, observed a reduction of QOL for women between 15 and 71 years of age (Gifford, 2003). While the reasons for the lower QOL in women have not yet been clearly defined, the findings indicate that social and cultural problems associated to the disease may be implicated. Interestingly, these observations have been repeated for different chronic conditions, backgrounds or geographic origins. In Spain this has been corroborated by Ferrer et al using the CLDQ

The main concern among men is related to their professional activities; they are worried about not being able to provide for their families. Although there are different circumstances implicated in symptoms or in alteration in the QOL, the way that patients react to the diagnosis or treatments and its consequences are different in both genres (Gifford, 2005).

In our experience in the Liver Transplant Unit, we observed, using the generic NHP that three months after liver transplant women were scoring higher than men, but after six

methodology (Younossi, 1998).

(Ferrer, 2006 ).

have identified factors known to enhance QOL.

multidisciplinary transplant team (Kotlyar, 2008).

(CES-D), and Beck Anxiety Inventory Scale, observed similar results.

months men were improving progressively whereas women were not, not correlating with clinical results (data not published). These facts may corroborate the usual role of women in family life.

The weight of the stigma felt by liver disease sufferers in the past is still present nowadays (Scambler, 1998; 2009; Zickmund, 2004). Stigma is defined as the opinion of a dominant group with a preformed judgement about attitudes or situations considered socially unacceptable. Stigma is found in all levels of society (Zickmund, 2003).

One explanation is that drug use, a risk factor for AIDS and chronic HCV-related liver disease, projects a negative image of these diseases (Kanwal, 2005). In the past, before the discovery of the hepatitis C virus in 1989, this situation was observed in cirrhosis patients who, despite not being drinkers, were always asked about their drinking habits and were sometimes labelled as alcoholics. Another reason is that people living with a carrier are afraid of being infected ( Marcellin, 2007).

Women have reported experiencing greater stigma than men. The presence of this stigma can affect self-esteem and cause alteration in the QOL (Strauss, 2006).

The pre-transplant physician/patient relationship and the coordination with other members of the transplantation team are vital. At this stage, the medical information that patients receive and the attitudes of the medical team is highly significant (Cordoba, 2003; Zickmund, 2004; Flamme, 2008). Knowing about experiences of other patients with the same health problems is also positive. Information supplied to the patient and his/her family members as well as psychological and social support induces behavioural changes, which may be reflected in an improved physiological process (van der Plas, 2003).

Realizing that social and/or psychological factors play a significant role in patients' HRQOL, transplant teams could take advantage of information collected so far and implement new programs (Rodger, 1999; Pieber, 2006; van den Berg, 2006; DiMartini, 2011.)


Table 4. Modes of administration of questionnaires of HRQOL (Hays, 2009)

Effects on the properties of questionnaires of HRQOL related to the mode of administration have been studied (Table 4) (Hays, 2009; Gundy, 2010). Significant differences were detected in measurements –after adjustment- researchers found that, for the Emotional Functioning (EF) scale, patients who had completed the written questionnaire at home had significantly lower levels of (EF) compared to those interviewed over the telephone.


Table 5. Scoring severity of liver disease MELD (Malinchoc, 2000; Kamath, 2001) and Child-Pugh (Pugh, 1973). MELD score was developed to determine the severity of liver disease based on the patient's serum bilirubin, serum creatinine, and the international normalized ration (INR).It has been proposed to replace the Child-Turcotte-Pugh (CTP) score as a "more objective" measure of chronic liver disease severity
