Marie Krantz

The essence of living parental liver donation – donors’ lived experiences of donation to their children

Abstract:  The use of living parental liver donors will continue and probably increase because of lack of cadaveric livers for paediatric transplantation and the excellent graft survival of parental livers. Therefore, it is important for the health care professionals involved in living parental liver donation to understand the experience of being a liver donor. The aim of this study was to investigate the expressed deeper feelings of parents who donated a part of their liver to their own child. The study took the form of in‐depth interviews with 11 donors. All donors were biological parents of the recipient, nine fathers and two mothers. The interpretive phenomenology method was used, and interpretive analysis was carried out in three interrelated processes in line with Benner. Data collection was guided by the researchers preliminary understanding of the donor experience from being involved in the surgery and care of the donors as well as the paediatric recipients. However, the research question was approached from the perspective of holistic care for the donor. In this study, the essence of living parental liver donation was found to be the struggle for holistic confirmation. There were three categories leading to this central theme; the total lack of choice, facing the fear of death and the transition from health to illness. There was total agreement among the respondents that there is no choice when it comes to the question of donation. The findings in this study stress the importance of organizing the parental liver donation programme with as much focus on the donor as on the child. Based on the results of this study, several clinical implications are suggested for the formation of guidelines for living parental liver donation.

Transplanted children's experiences of daily living: Children's narratives about their lives following transplantation

Abstract:  Transplantation is often an appropriate choice of treatment for children with end‐stage renal, liver, heart or lung disease. Over the last decade, mortality and morbidity figures have been relatively stable and quality of life fairly good in children who have undergone organ transplantation. Few studies however, have focused on the experiences of transplantation from the childs perspective. The childs view is an important factor when evaluating the ‘true’ outcome and quality of life after transplantation. The aim of the present study was to illuminate the meaning of transplanted childrens experiences of daily living. Unstructured interviews were carried out with 18 children and adolescents, aged 4–18 yr, who had undergone organ transplantation. Their narratives were transcribed and interpreted using a phenomenologic–hermeneutic method inspired by the philosophy of Ricoeur. Two main themes emerged: Being satisfied with life, with the themes: being able to live a normal life; someone who cares; coping with ones new life; and being dissatisfied with life, with the themes: not being able to live a normal life; lacking someone who cares; not being respected; existential thoughts. Most of the children and adolescents were of the opinion that they lived a normal life while the rest strived to achieve a normal life. Social support and mental support were of great importance and, when lacking, had negative consequences. Multi‐disciplinary co‐operation between healthcare professionals and between the healthcare system, the school and the family is crucial in order to optimize the outcome and quality of life after organ transplantation in children.

Survival of patients evaluated for intestinal and multivisceral transplantation – the Scandinavian experience

Abstract Objective. The current treatment of choice for patients with intestinal failure is parenteral nutrition, whereas medical therapy or resection is preferred for patients with neuroendocrine pancreatic tumors (NEPT) along with liver metastasis. As the survival of patients undergoing intestinal and multivisceral transplantation is improving, the discussion for expansion of treatment options has become a subject of debate. The aim was to investigate the outcome for patients referred for intestinal and multivisceral transplantation and to determine which patient group are the ones most likely to benefit the most from transplantation. Methods. The authors included all patients evaluated for intestinal and multivisceral transplantation at the Sahlgrenska University Hospital and The Queen Silvia Childrens Hospital center between February 1998 and November 2009. Patients were classified according to proposed treatment strategy, and the outcome was evaluated. Results. A total of 43 adults and 19 children with either intestinal failure or NEPT with liver metastases were evaluated for transplantation. Of these patients, 15 adults and 5 children were transplanted. Transplantation was lifesaving for most children – all the children survived after transplantation, but 70% (4/6) died while awaiting transplantation. Among the adult patients with intestinal failure, the survival rate for patients considered to be stable on parenteral nutrition was higher than the transplanted adult patients. The survival rate of patients with NEPT was similar to the results seen among patients transplanted for intestinal failure. Conclusion. The results confirm the poor prognosis of patients with intestinal failure awaiting transplantation and indicate that different transplantation criteria may be applied for adults and children, especially when early transplantation is the preferred treatment. The role of multivisceral transplantation in patients with NEPT remains uncertain.

Stable long‐term renal function after pediatric liver transplantation

Herlenius G, Hansson S, Krantz M, Olausson M, Kullberg‐Lindh C, Friman S. Stable long‐term renal function after pediatric liver transplantation.
Pediatr Transplantation 2010: 14:409–416.

Chronic kidney disease--a common and serious complication after intestinal transplantation.

Background. Chronic kidney disease after organ transplantation is a serious complication that negatively impacts on long-term patient survival. We describe long-term renal function after intestinal transplantation by serial measurements of glomerular filtration rates (GFR) with 51Chromium EDTA clearance. Materials and Methods. Ten patients with at least 6 months survival form the basis of this report. Glomerular filtration rate measurements were performed at baseline, 3 months posttransplantation, and yearly thereafter. Median follow-up time for the cohort was 1.5 years (0.5–7.8 years). Tacrolimus (Prograf) was discontinued in four patients because of impaired renal function. These four patients were switched to sirolimus (Rapamune) at 11, 18, 24, and 40 months posttransplantation. Results. Median baseline GFR was 67 (22–114) mL/min/1.73 m2. In the adult patients, GFR 3 months posttransplantation had decreased to 50% of the baseline. At 1 year, median GFR in the adult patients was reduced by 72% (n=5). Two patients developed renal failure within the first year and required hemodialysis. One of the pediatric patients fully recovered her renal function, the second pediatric patient lost 20% of her baseline GFR at 6 months posttransplantation. Glomerular filtration rate calculated with the modified diet in renal disease formula consistently overestimated GFR by approximately 30% compared with measured GFR. Conclusion. Chronic kidney disease and renal failure are common after intestinal transplantation. These two factors significantly contribute to poor long-term survival rates. Measurements of GFR may help to identify those individuals at risk for developing chronic kidney disease to implement renal sparing strategies.

Impaired intention-to-treat survival after listing for liver transplantation in children with biliary atresia compared to other chronic liver diseases: 20 years' experience from the Nordic countries.

Biliary atresia (BA) is the most common indication for LT in children. We investigated whether this diagnosis per se, compared to other chronic liver diseases (OCLD), had an influence on patient survival. Data from 421 Scandinavian children, 194 with BA and 227 with OCLD, listed for LT between 1990 and 2010 were analyzed. The intention‐to‐treat survival and influencing risk factors were studied. Patients with BA had higher risk of death after listing than patients with OCLD. The youngest (<1 year) and smallest (<10 kg) children with the highest bilirubin (>510 μmol/L), highest INR (>1.6), and highest PELD score (>20) listed during 1990s had the worst outcome. Given the same PELD score, patients with BA had higher risk of death than patients with OCLD. For adolescents, low weight/BMI was the only prognostic marker. Impaired intention‐to‐treat survival in patients with BA was mainly explained by more advanced liver disease in younger ages and higher proportion of young children in the BA group rather than diagnosis per se. PELD score predicted death, but seemed to underestimate the severity of liver disease in patients with BA. Poor nutritional status and severe cholestasis had negative impact on survival, supporting the “sickest children first” allocation policy and correction of malnutrition before surgery.

Parental experience with living donor liver transplantation.

In the August 2004 issue of Pediatric Transplantation, Prof Otte and colleagues critically review our study regarding parental experience with living donor liver transplantation. We regret if we have misled the readers, leading to some of the interpretations pointed out by Otte et al. after reading the manuscript and wish to give some necessary clarifications in order to avoid further misunderstandings or misinterpretations. Regarding the methods, some of the conclusions drawn by Otte et al. might be due to the application of qualitative research methodology, using human science research methodology traditionally used rarely in transplantation medicine. The method includes focusing on the parental donors lived experience of donating a piece of their liver to their own child. A clinical nurse specialist in paediatric care conducted the interviews. The reviewers argue that this investigation would have gained objectivity from being performed by an independent psychologist. On the contrary, from the phenomenological point of view, it is neither desired to learn the specific personal perspective nor the depersonalized objective perspective, rather, the perspective of the subjects experience as such. The illumination of the meaning is dependent upon the questions we ask in the present moment from our own position within history. What appears true in a certain context at a certain time may actually be false in another context or at another time. We understand that the use of this method may seem confusing as the human science approach is different from the traditional natural science approach. There are two basic classical worldviews. The first is that everything in the world, including people, are best understood by being divided into isolated parts or variables (atomism) and/or reduced to the smallest, often physical common denominator (reductionism). The second classical view is that the world is structured in patterns of internal interacting parts, where the whole influences the parts and the parts the whole (holism). The description of the method is based on the second classical view mentioned above. A paradigm shows itself indirectly in the research problems that are chosen, the method that are used and the criteria against which resultant knowledge is judged. A study based on the method of interpretive phenomenology is never able to replicate as it is always contextual and is therefore hardly comparable with research designs involving questionnaires and psychological instruments. The overall aim of this research is the description and elucidation of the lived world in a way that expands our understanding of human experience. As the reviewers points out this manuscript describes the experiences of 11 donors. We agree that this is a very small sample when considering a quantitative research design. However, in a qualitative research design, the sample size is quiet accurate and might even be considered as large as this research does not generally seek to enumerate. Not being familiar with the lived experience of parental living liver donors the statements about the donors experienced feelings might understandably seem shocking. These subjectively experienced deeper feelings were not reported or shown during the care of these donors or in evaluation procedures using standardized questionnaires. When using a different scientific approach the understanding of human experience expands and might also involve unexpected results such as in this study. The donors were of course grateful for the survival of their children and viewed the donation itself as a hope for the future of their child. Otte et al. imply that the main conclusion in our paper is a serious and ethically criticisable violation of the donor autonomy. Parents involved in our study had a clear option to decline donation and were clearly informed about different options. We use similar procedure as described by the reviewers. Before donation we perform a thorough assessment of the presumed donor and give extensive information about the procedure, risks, the expected outcome for the Pediatr Transplantation 2004: 8: 522–524