Fatigue in pediatric liver transplant recipients and its impact on their quality of life.

The aim of the study was to investigate the occurrence of fatigue in 100 pediatric liver transplant recipients aged 2-18 years and its impact on their health-related quality of life (HRQL). HRQL and fatigue were measured using the PedsQL 4.0 Inventory and the PedsQL Multidimensional Fatigue Scale, which encompasses three subscales: general fatigue, sleep/rest fatigue, and cognitive fatigue. The impact of the different domains of fatigue and of clinical and sociodemographic factors on the HRQL was identified with stepwise multiple regression analyses. Parent proxy-reports were available for all 100 participants (2-18 years), and child self-reports were available for 71 patients (8-18 years). Across all domains, participants and their parents reported significantly more fatigue than healthy peers in a large PedsQL validation study. Thirty-seven percent of patients and 57% of parents scored clinically relevant levels of fatigue. In the multiple regression analyses, none of the clinical and sociodemographic factors contributed to the HRQL for child self-report. Only general and cognitive fatigue were significant predictors of patients' HRQL, explaining 66% of the variance in the PedsQL total score. For parent proxy-report, general and cognitive fatigue also significantly predicted child's HRQL. Further predictors were child's age and family income. The regression model explained 65% of the variance. These findings demonstrate the importance of assessing fatigue during regular follow-up examinations. Further research is urgently needed to better understand the underlying mechanisms of fatigue. Improvement of fatigue symptoms is essential for better HRQL, for cognitive functioning, and for school achievement.

Anterior vertical mini-incision vs. retroperitoneoscopic nephrectomy in living kidney donation: a prospective study on donors' quality of life and clinical outcome.

BACKGROUND: A fundamental goal in living kidney donation (LKD) is to maximize donor safety while minimizing post-operative impairments. We evaluated clinical outcome and health-related quality of life (QOL) comparing anterior vertical mini-incision donor nephrectomy (MIDN) and retroperitoneoscopic donor nephrectomy (RPDN). METHODS: Thirty-eight MIDN and 45 RPDN donors were analyzed. In a subsample (n = 18 MIDN; n = 32 RPDN), QOL was prospectively assessed with the WHOQOL-Bref questionnaire before and three months after LKD. RESULTS: Skin-to-skin time (169 vs. 116 min, p < 0.001) and hospital stay (6.6 vs. 4.9 d, p < 0.001) were significantly shorter in RPDN. In total, 26% of MIDN patients and 13% of RPDN patients developed post-operative complications (p = 0.14). While in MIDN the QOL domains physical health (p = 0.03) and psychological (p = 0.03) and the overall QOL facet (p = 0.003) were significantly lower three months post-LKD compared to baseline, there were no significant QOL decreases in RPDN. However, no significant post-operative QOL differences were found between groups. RPDN donors retrospectively reported significantly less post-operative pain (p = 0.007) and physical strain (p = 0.05) caused by LKD than MIDN donors. CONCLUSIONS: It may be possible to further reduce the surgical burden of LKD by introducing RPDN. Post-operative QOL was not significantly different between groups, but the QOL decrease appeared to be less pronounced in RPDN.

Influence of kinship on donors' mental burden in living donor liver transplantation.

In the context of living donor liver transplantation (LDLT), German transplantation law stipulates that donor candidates should primarily be relatives of the recipients or persons with distinct and close relationships. In this study, we investigated the influence of the relationship between the donor and the recipient on the donor's emotional strain before transplantation. Donors were categorized according to the following subgroups: (1) parents donating for their children, (2) children donating for their parents, (3) siblings, (4) spouses, (5) other relatives, and (6) nonrelatives. The sample consisted of 168 donor candidates. Anxiety (F = 2.8, P = 0.02), depression (F = 2.6, P = 0.03), and emotional quality of life (F = 3.1, P = 0.01) differed significantly according to the relationship between the donor and the recipient. In comparison with healthy controls, parents donating for their children were significantly less stressed before LDLT and demonstrated fewer anxiety (P < 0.01) and depression symptoms (P < 0.05). Adult children donating for their parents demonstrated the highest mental burden and the lowest emotional quality of life. However, this was not due to the responsibility of these children for their own families because differences between donors with children and donors without children could not be ascertained. This group should be given special attention before LDLT and during follow-up visits, and psychological help should be provided when it is necessary.

A prospective study on living related kidney donors' quality of life in the first year: choosing appropriate reference data.

Prospective studies on living kidney donors' quality of life (QoL) are still rare. Most existing studies compare healthy donors with the general population, including subjects with diseases. This is the first prospective study comparing living donors' QoL with reference data of both the general population and healthy individuals. We investigated QoL, anxiety, and depression in living kidney donors (n = 79) before donation and at two post-operative data points (three months and one yr). Subsequently, data from the donors were compared with the reference data. Our results show an impaired physical QoL three months post-donation. One yr after surgery, physical QoL had returned to the pre-operative level. Neither mental QoL nor anxiety or depression showed major changes across time. Pre-operative QoL was comparable to that of healthy individuals and higher than that in the general population. Donors' perception of the recipient's health showed moderate correlations with donors' mental outcome three months after donation. In conclusion, the impact on physical QoL seems to persist for at least three months after kidney donation. It could be demonstrated that in the context of living donation, healthy individuals provide more adequate reference data. Future research needs to determine the length and the nature of the post-operative QoL impairment and further explore possible influencing factors.

Mental and physical quality of life in actual living liver donors versus potential living liver donors: a prospective, controlled, multicenter study.

In a quasi-experimental design, we investigated the quality of life (QOL) in actual liver donors (n = 43) and potential liver donors (n = 33) before and 3 months after liver transplantation. This is the first study in this field combining a prospective design with an adequate control group. Potential donors served as a control group because they also had a relative in need of a liver transplant and were as emotionally involved with the recipient as actual donors, but they were not subjected to the donor operation. Groups did not differ in age, gender, marital status, donor-recipient relationship, urgency of transplantation, or recipient group (adult versus child). Actual donors showed decreased physical QOL, whereas potential donors were not affected. However, for both groups, a decrease in anxiety was found. Furthermore, actual donors showed a better mental QOL postoperatively than potential donors. The recipients of these 2 groups did not differ with respect to postoperative complications. Furthermore, the groups did not report a different caregiver burden, but actual donors showed higher self-esteem. Because of the surgery, the worsening of physical symptoms in actual donors was expected. It is remarkable, however, that although actual donors still showed a limited physical QOL 3 months after the operation, in both groups, a similar reduction in anxiety could be observed, and actual donors even demonstrated a better mental QOL postoperatively than potential donors. The latter might be due to a psychological benefit that actual donors derived from the fact that they were able to help the recipients.

Structured introduction of retroperitoneoscopic donor nephrectomy provides a high level of safety and reduces the physical burden for the donor compared to an anterior mini incision: A cohort study.

INTRODUCTION: A major goal in living donor kidney transplantation is to reduce the physical burden for the donor. Key-hole surgery for donor nephrectomy is a safe procedure, but concerns regarding donor safety during the learning phase might be the reason for surgeons' reluctance to change to a minimal invasive approach. MATERIAL AND METHODS: We analyzed the first 100 retroperitoneoscopic donor nephrectomies (RPDN) performed at our institution and compared the results to the last 50 mini incision donor nephrectomies (MIDN) regarding donor and recipient outcome, and analyzed the learning curves of RPDN. RESULTS: The learning phase of RPDN was very short with significantly shorter operative times compared to MIDN (118 vs. 175 min, p < 0.001) and significantly fewer surgical complications (p = 0.03). RPDN patients rated the physical burden (p = 0.01) as lower, and they felt less bothered by the surgical scar (p = 0.03). CONCLUSION: Introducing RPDN is safe, even during the learning phase of the surgeons. Changing surgical technique from MIDN to RPDN reduces the surgical burden of the procedure. Our study might encourage more transplant centres to adopt a minimally invasive approach.

Sense of coherence and social support predict living liver donors' emotional stress prior to living-donor liver transplantation.

The protection of the donors from physical or emotional harm has been a fundamental principle in living-donor liver donation from the beginning. Psychosomatic donor evaluation aims at the selection of eligible donors and the screening and exclusion of psychiatrically vulnerable donors. As clinical interviews may include subjective biases, efforts should be made to establish objective criteria for donor assessment. In recent research, protective factors have been reported to be a significant force behind healthy adjustment to life stresses and can be investigated as possible predictors of donors' eligibility. Being the central construct of Antonovsky's theory of salutogenesis, the sense of coherence is one of the most surveyed protective factors and a good predictor of individuals' stability when experiencing stress. Furthermore, family support has been shown to be a valuable protective resource in coping with stress. This study surveyed whether sense of coherence and social support predict donors' emotional strain prior to transplantation. Seventy-one donor candidates were included in the study during the donor evaluation prior to living-donor liver transplantation. Sense of coherence proved to be a significant predictor for all criterion variables, namely anxiety, depression and mental quality of life. In addition to this, donor candidates who were classified as eligible for donation in the psychosomatic interview had significantly higher values on sense of coherence total scores compared with rejected donors. In a multiple regression analysis, sense of coherence and social support together yielded a prediction of depression with an explained variance of 22% (R(2) = 0.22). Sense of coherence and social support can be implemented as self-rating instruments in the psychosomatic selection of donors and would help to further objectify donors' eligibility.

Donor quality of life up to two years after living donor liver transplantation: a prospective study.

BACKGROUND: There is a lack of longer-term prospective data on living liver donors' quality of life (QOL). This is the first prospective study examining QOL up to 2 years after donation. METHODS: A consecutive sample of living donors (n=40) was compared with a sample of potential donors (n=27) with respect to QOL, anxiety, and depression. Performing mixed-effects model analysis, both groups were assessed before transplantation, with and without simultaneous donation (T0), and at three postoperative data points: 3 months (T1), 1 year (T2), and 2 years (T3). Subsequently, both groups were compared with reference data of the general population and healthy individuals. RESULTS: At T1, living donors' physical QOL was impaired. At T2 and T3, physical QOL was slightly lower than the preoperative level but within the range of healthy individuals in both living donors and potential donors. Neither mental QOL nor depression showed significant changes across time, while anxiety decreased in both groups. Subgroup analysis of adult-to-adult (AA) donors and adult-to-pediatric (AP) donors revealed different trajectories of mental QOL, anxiety, and depression. AP donors experienced more preoperative psychological strain, which improved after donation, whereas AA donors showed unchanged anxiety and depression, and a slight decrease in mental QOL 2 years after surgery. Two AA donors, whose recipients had died, reported persisting depressive symptoms after donation. CONCLUSIONS: One and two years after donation, QOL is not substantially impaired in the majority of donors. Future research needs to provide an even longer prospective follow-up and should more rigorously explore risk factors for a negative donor outcome.

The factorial structure of the Chronic Liver Disease Questionnaire (CLDQ).

OBJECTIVE: The Chronic Liver Disease Questionnaire (CLDQ) is a disease-specific instrument designed to assess health-related quality of life in patients with chronic liver disease. The aim of this paper is to present the psychometric properties of a German version of this questionnaire. A special focus is placed on the analysis of the CLDQ's factorial structure. METHODS: Five hundred and twenty-four patients completed the CLDQ from May 1999 to October 2006. The results were subject to item analysis, reliability and validity assessments, and confirmatory and exploratory factor analysis. RESULTS: The distribution characteristics on the item and scale level were satisfactory. Internal consistency was good to excellent; retest reliability acceptable. Validity could be confirmed by characteristic subscale correlations with other quality-of-life scales. Confirmatory factor analysis could not sufficiently reproduce the original factor structure. Exploratory factor analysis suggested five out of six subscales of the original version and yielded a new subscale: leep." CONCLUSION: CLDQ's reliability and validity have been confirmed. In addition, the demonstrated practical administration of the questionnaire suggests that it should serve as a routine quality of life assessment of patients with chronic liver disease.

Psychological strain in urgent indications for living donor liver transplantation.

The ethical soundness of living donor liver transplantation (LDLT) in urgent indications is still under discussion. The aim of the survey was to investigate the psychological distress of donors in cases of hepatocellular carcinoma (HCC) or acute liver failure (ALF). In a prospective multicenter study (n = 123), health-related quality of life (QOL), anxiety, and depression were measured. The psychological distress of donors was correlated to the degree of urgency of the recipients' indication, which was classified as nonurgent, HCC, or ALF. During the donor evaluation prior to LDLT, the donors with recipients for HCC and ALF demonstrated significantly reduced mental QOL in comparison to donors for a nonurgent indication and to the German normative sample. Compared to healthy controls, anxiety and depression were significantly increased in donors for ALF. Three months after the transplantation, scores for mental QOL as well as for anxiety and depression improved and were within the normal range for the whole group as well as for the ALF donors. In conclusion, the psychological burden was temporary in nature. Our findings can be considered as arguments for the current practice to address family members as donors in cases of HCC and ALF.

Psychosocial aspects of pediatric living donor liver transplantation.

While the medical aspects of living donor liver transplantation (LDLT) have been investigated to a comparatively large degree, only in recent years have psychosocial aspects like donors' quality of life and attitude towards living donation been dealt with. In the course of a retrospective study, we examined 36 pediatric living liver donors at an average of 4.5 +/- 2.8 years postoperatively. The donation's impact on the family was considered "very high," "high," or "average" by 48% of the donors. The physical impact of the donation was regarded as being higher than the emotional impact. Subjective full recovery was achieved at an average of 4.5 months postoperatively. All patients stated that they would donate again. Donors' quality of life, as assessed with the 36-Item Short-Form Quality of Life Questionnaire (SF-36), was significantly higher than the German normative sample. Anxiety and depression, assessed with the Hospital Anxiety and Depression Scale-German version, were significantly lower compared to healthy controls. However, 14 patients (39%) described persistent, mostly physical, symptoms more than 1 yr postoperatively. In conclusion, the study's findings may enable clinicians to achieve a better understanding of living donors' situations, both pre- and postoperatively, and may help to assess the psychosocial risk of LDLT. Knowledge of possible ongoing problems may facilitate intervention at an early stage and should be included among the information given to potential living liver donors. Prospective studies using more specific instruments with an emphasis on the long-term psychosocial outcome of LDLT are needed for future research.