Orthotopic liver transplantation (LTx) has become a routine procedure in the treatment of end-stage liver disease. During the waiting period for transplantation, the patient's family members are also highly affected. We examined the course of distress and quality of life (QOL) in 47 patients awaiting LTx and distress in 24 caregivers at baseline and in intervals of 4–6 weeks, using The Hospital Anxiety and Depression Scale (HADS) and the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQ-C30). All subscales of the EORTC QLQ-C30, except emotional functioning, were lower than normal at baseline. Little change in patients' QOL was observed during the waiting period. In the HADS, there were significantly higher anxiety scores in caregivers than in patients both at baseline and after 1–2 months and the third assessment, with the difference after 3–5 months reaching almost significance. Caregivers' anxiety levels increased significantly. Relatives showed more depression than patients only at month 1–2 and a significant increase in depression from baseline to month 1–2. In patients, depression scores remained relatively stable throughout all visits. Our results emphasize the importance of evaluation of psychic stress especially in relatives during the waiting period for LTx.
During recent years, orthotopic liver transplantation (LTx) has become a routine procedure in the treatment of end-stage liver disease.
The indications for LTx are diverse: alcoholic liver disease, hepatitis C and B virus infection, cryptogenic cirrhosis, primary sclerosing cholangitis, primary biliary cirrhosis, autoimmune hepatitis and to a constantly wider extent non-alcoholic steatohepatitis are amongst the diagnoses of transplanted patients in the USA (Charlton et al., 2011).
Steady improvements in graft and patient survival have been achieved over the past two decades. One-year adjusted patient and graft survival rates were 87.9% and 82.3%, respectively, for deceased donor liver transplants in 2005 (Health Resources and Services Administration, 2007). With significant improvements in survival and a more recent plateau of these gains, focus on outcome measures has shifted towards inclusion of patient-reported quality of life (QOL). Hence, patient-reported outcomes are being increasingly emphasized in recent years and have become an integral component of several clinical trials (Atherton and Sloan, 2006). Numerous studies in the field show a long-term improvement in QOL of patients after LTx (Duffy et al., 2010), while others have failed to do so (Aadahl et al., 2002). However, as the demand for donor organs exceeds their availability, patients have to face increasing waiting times. According to the annual report of EUROTRANSPLANT, as per Dec. 31st, 2010, 137 Austrian patients are on the active liver transplant waiting list (Superior Health Council, 2011). According to this data, 65.6% of patients of all included countries were transplanted in the first 5 months of being placed on the waiting list, with the rest waiting considerably longer. The waiting period for the transplant is a process of experiencing confinement, disciplining the self and surrendering one's self to accept resources for health (Baker and McWilliam, 2003). Patients exhibit a significant limitation in their psychological well-being and show higher levels of anxiety (Goetzmann et al., 2006). Physical impairment often requires help in daily living. Primary caregivers can help in day-to-day activities, assist in taking medication, communicate with the medical team and provide emotional support (Benning and Smith, 1994). Some studies have shown that medical outcome and compliance are highly influenced by the psychosocial environment of the patient (Bunzel and Laederach-Hofmann, 2000).
Most of the studies in the field have focused on QOL of the patients both before and after transplantation, although during that period, the transplant recipient's family members are also highly affected by performing emotional and instrumental caregiving tasks (Cohen et al., 2007 and Rodrigue et al., 2010), and the prevalence of depression in primary caregivers is high (Miyazaki et al., 2010 and Goetzinger et al., 2012). QOL of the caregivers may suffer during that process, though there seems to be evidence that some caregivers also experience benefits, such as gaining a new life perspective, and feeling wanted or needed (Meltzer and Rodrigue, 2001). On the contrary, a recent paper (Rodrigue et al., 2011) reported that in caregivers caregiving strain and mood disturbances are just as prominent in the months and years following LTx as they were during the pre-LTx waiting-period. As shown in an extensive review (Jay et al., 2009), the Hospital Anxiety and Depression Scale (HADS) is one of the most commonly used instruments in measuring anxiety and depression in transplantation patients.
The aim of our study was to focus on the pre-LTx waiting period, to measure the course of distress and quality of life in patients, and to relate it to the level of distress in primary caregivers during the waiting period for orthotopic LTx.
