Trotz Inkrafttretens des ersten gesamtdeutschen Transplantationsgesetzes im Dezember 1997 steigt die Anzahl terminal niereninsuffizienter Patienten auf der Warteliste, ebenso wie die Wartezeit auf eine Nierentransplantation (NTX). Verschiedene Programme existieren, um der Organknappheit zu begegnen. Im Eurotransplant Senior Programm (ESP) werden seit 1999 Nieren älterer verstorbener Spender (65+) an ältere Empfänger (65+) unabhängig von der Gewebeübereinstimmung auf lokaler Ebene übertragen. Unsere Studien konnten zeigen, dass die Transplantat- und Empfängerüberlebensraten sich nicht von denen nach Transplantation jüngerer Spendernieren in alte Empfänger unterscheiden. Transplantatverlust im ESP tritt meist als Tod mit funktionierendem Transplantat auf. Dies ist die Folge vermehrt vorkommender Komorbiditäten in dieser Empfängergruppe und unterstreicht die Notwendigkeit einer intensiven prä-operativen Evaluation sowie engmaschigen Nachsorge. Zudem konnten wir zeigen, dass die Grundannahme einer verminderten Immunkompetenz älterer Empfänger nicht zutrifft. Eine Änderung der Allokationsregeln von Eurotransplant wird deshalb diskutiert, die auch im ESP die Gewebetypisierung berücksichtigt. Der Anteil der Lebendnierenspende (LNTX) in Deutschland hat sich in den vergangenen Jahren auf ca. 19% verdreifacht. An unserer Klinik macht sie ca. 30% der durchgeführten NTX aus. Zudem wird an unserer Klinik deutschlandweit die laparoskopische Spendernierenentnahme am häufigsten durchgeführt. Folge einer hier durchgeführten prospektiven Studie zur präoperativen Bildgebung der renalen Gefäßarchitektur des Spenders ist der Verzicht auf invasive Methoden. In weiteren Untersuchungen konnten wir zeigen, dass die Akzeptanz von Lebendspendern mit erweiterten Spenderkriterien gute Möglichkeiten bieten NTX-Programme zu intensivieren. In einer Lebensqualitätsstudie untersuchten wir erstmalig für den deutschen Sprachraum die postoperativen Verläufe von Lebendnierenspendern und konnten neben einer grundsätzlichen Zufriedenheit auch besondere Bedürfnisse aufdecken. Verschiedene Studien zur Laparoskopie in der LNTX, Handhabung und Optimierung dieses neuen Verfahrens sowie dessen Anwendbarkeit bei anatomischen Besonderheiten konnten zeigen, dass diese Methode ein sicheres Verfahren darstellt. Anhand unserer Erfahrungen in der LNTX haben wir zudem Empfehlungen zur Evaluation und Nachbetreuung von Lebendnierenspendern erarbeitet. Insgesamt sind das ESP und die LNTX, hier besonders die laparoskopische Spendernierenentnahme, effektive Konzepte zur Erweiterung der Nierentransplantationsprogramme. / Despite the implementation of a transplantation law in 1997 the number of patients with end-stage renal disease in Germany is rising, as is the waiting time for a kidney transplantation (KTX). Different programs exist to counterbalance organ shortage. The Eurotransplant Senior Programm (ESP), initiated in 1999, allocates kidneys of deceased donors aged 65 and older (65+) irrespective of tissue matching locally to recipients 65+. Our studies revealed that graft- and patient survival in this program are comparable to that after transplantation of young donor-kidneys in old recipients. Graft loss is mostly due to recipient death, which is a consequence of the co-morbidities of the recipient. Meticulous evaluation and intensified follow-up in this recipient-group are most important. Furthermore, despite the assumption of a reduced immunologic response of old recipients we could show that they are very well immunocompetent. Therefore, a change in allocation rules at Eurotransplant is discussed, possibly involving HLA-matches in the ESP. Living donor kidney transplantation (LDKTX) has increased three-fold over the last years and features about 19% of all hat KTX in Germany. In our department LDKTX features about 30% of all KTX and our department also performs the most laparoscopic explantations of living kidney donors in Germany. With regard to the preoperative donor evaluation we could show in a prospective study that non-invasive methods for renal vessel imaging are better than the standard invasive approach. Further research proved that applying extended donor criteria renders good results for graft and recipient and thus is a viable option to increase LDKTX. In the first German study on donors Quality of Life we mostly found satisfied donors and also could detect specific donor demands. For the laparoscopic approach we performed different studies on the technique, its improvement and peculiarities, proving that laparoscopic organ retrieval is a safe method in LDKTX. ESP and LDKTX, especially the laparoscopic organ retrieval, are effective concepts to increase the number of kidney transplantations.

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La présente thèse poursuit l'objectif général de mieux comprendre l'expérience de la transplantation d'organe de la perspective de dyades comprenant un donneur et un receveur d'une donation vivante de rein. Pour ce faire, nous proposons une exploration en profondeur de la trajectoire de transplantation et des enjeux relationnels des donneurs et des receveurs. Un second objectif, qui s'est développé au cours de la recherche, est de contribuer à une meilleure compréhension des enjeux entourant la recherche qualitative impliquant des dyades. Cette thèse est présentée sous la forme de trois articles. Le premier article vise, par le biais de la méthode du méta-résumé, à dresser un portrait le plus complet possible du processus de donation tel qu'il avait été examiné à ce jour par les écrits empiriques qualitatifs disponibles, et à mettre en lumière les aspects qui avaient encore peu été appréhendés par les chercheurs, notamment l'importance de considérer conjointement au sein d'une même recherche des donneurs et des receveurs d'une donation vivante de rein. Le deuxième article a pour but d'explorer en profondeur l'expérience vécue pour des dyades de donneurs et de receveurs en contexte de donation vivante de rein, et en particulier la trajectoire de transplantation ainsi que les enjeux relationnels. Des entrevues qualitatives ont été menées auprès de cinq dyades (donc cinq donneurs et cinq receveurs). L'analyse phénoménologique interprétative des données recueillies propose un portrait de la trajectoire de transplantation, soit (a) l'expérience de la maladie du receveur, (b) l'expérience d'offrir et d'accepter un rein, (c) la période des tests, (d) la transplantation d'organe à proprement parler et finalement (e) la période post-transplantation. Un apport particulièrement significatif de l'analyse et de l'interprétation de nos données est la mise en relief que le processus de transplantation est mieux compris lorsque l'on considère le contexte social et interpersonnel plus large dans lequel évolue chaque dyade donneur-receveur, et en ce sens, la décision de donner ou d'accepter un rein peut être appréhendée comme un prolongement du rôle social auquel la personne adhère par rapport à autrui dans sa vie quotidienne. Le troisième article, qui a émergé des leçons acquises en réalisant la recherche effectuée dans l'article précédent, vise à décrire et discuter des défis éthiques et des impacts des décisions méthodologiques dans le cadre de recherches qualitatives impliquant des dyades de personnes se connaissant. Sur la base de nos propres défis empiriques et des écrits scientifiques disponibles, des réflexions et recommandations sont suggérées à différents stades d'un processus typique de recherche qualitative, soit (a) le recrutement, (b) le consentement à participer, (c) la collecte de données, (d) la validation des transcriptions par les participants, (e) l'analyse de données, et (f) la dissémination des résultats. Une réflexion en amont des enjeux entourant ces étapes est susceptible de faciliter l'entreprise de recherches qualitatives impliquant des dyades. En conclusion, les résultats de notre analyse soulignent l'importance du rôle social et du contexte interpersonnel plus large dans lequel évoluent les donneurs et les receveurs dans la façon dont ils parviennent à donner une signification à leur expérience. Enfin, si la recherche qualitative impliquant des dyades est en émergence, des défis éthiques et des décisions méthodologiques rigoureuses doivent être considérés en amont. / The global objective of this thesis is to help develop a better understanding of how living kidney transplantation donors and recipients experience the donation process as an interactive dyad. To address this objective, we suggest an in-depth exploration of the transplant trajectory and of the relational issues at play between donors and recipients in the context of a living kidney donation. A secondary objective, which developed along the way, is to contribute to a better understanding of how to conduct qualitative research with dyads. This thesis is comprised of three articles. The first article is a meta-summary that aimed at aggregating results pertaining to both donors and recipients of a living kidney donation to offer a complete picture of the donation process and to highlight avenues that warrant further research, namely looking at both donors and recipients as an interactive dyad within the same study. The objective of the second article was to provide a better understanding of how living kidney transplantation donors and recipients experience the donation process as an interactive dyad, and in particular the transplant trajectory and the relational issues involved. In-depth qualitative interviews were conducted with five dyads (five donors and five recipients). An interpretative phenomenological analysis of the data suggests that the transplant process can be naturally broken down into five phases of the transplant process: (a) the experience of the disease, (b) the experience of offering and accepting a kidney, (c) the screening period, (d) the surgery, and (e) the post-transplantation period. We found that for each donor-recipient dyad, the transplantation process reflects the unique larger social and interpersonal context within which the dyad evolves, and in this sense, the decision to donate or accept a kidney becomes a reflection of the social role one adheres to with respect to another being in everyday life. The third article emerged from the lessons we learned in conducting the research described in the second article and describes both the ethical challenges and methodological decisions involved in conducting qualitative research with dyads who have shared a common experience. Based on our experience and on the available literature, we offer reflections and recommendations that follow the typical chronology of the research process: (a) recruitment, (b) consent to participation, (c) data collection, (d) transcript validation by participants, (e) data analysis, and (f) result dissemination. Reflecting ahead upon issues at each of these stages is likely to be beneficial in conducting rigorous qualitative research involving dyads. In conclusion, our results underline the importance of the unique larger social and interpersonal context within which dyads evolve and achieve a sense of meaning with respect to their own experience of the donation process. Last, as qualitative research involving dyads continues to evolve, ethical challenges and rigorous methodological decisions should be reflected upon ahead of time.

The use of quality-of-life as an outcome measure provides detailed information about the effectiveness of medical treatments than morbidity or mortality rates alone. The use of quality-of-life data in the clinical setting can inform patients regarding treatment options, treatment benefits and costs. In competing health care markets, outcome measurement is regarded as important as it is concerned with the impact of health care practice and affects health policy decisions. Doessel (1978) conducted the first Australian study on the cost-effectiveness analysis of renal replacement therapies. The study was based on Klarman, Francis & Rosenthal's (1968) the study, where the output was measured in terms of the number of life years gained from kidney transplantation, and a twenty-five percent weight was allocated in an attempt to capture quality-of-life from kidney transplantation. Doessel (1978) used two sources of data: Australian data (Disney 1974) and European data (Gurland et al. 1973; Shiel et al. 1974). The study measured life years gained, and agreed with the Klarman et al. (1974) findings that transplantation is the most effective way to increase life expectancy of persons with chronic renal disease (Butler & Doessel 1989). The outputs of the alternative treatments were not reported in monetary terms; the study focused on life years gained as the output measure. Hence the importance of this current study, which includes a cost-effectiveness analysis for cadaver liver, and living kidney transplantation for end-stage liver and kidney disease patients. Calls to respect patient autonomy and to produce patient-centered outcomes have recently brought the patient’s point of view back into the center of clinical medicine (Sullivan 2003). Survival rates indicate one measure of outcome however they do not reflect patients’ perceptions of health benefit or experiences. Noting that patients’ psychosocial effect on functioning is of more concern to them than their physical Thesis Preamble iii ability, that more accurate knowledge of patients’ conditions be measured prior to transplantation (Tarter et al. 1991). Recently researchers advocated investigating transplant patients' states of health to assess the social benefit of these expensive health care services from their perspective (Joralemon & Fujinaga 1997). The current study's mixed method, bridges the gaps in treatment outcome measurements, as the mixed method applied (Creswell 1994; Sim & Sharp 1998) prospectively measured quality-oflife, determined health utility, quality-adjusted life years (QALYs) and incremental cost-effectiveness ratios (ICERs). The study reported the living donors experience of the donation process, described their needs; expressed using a new psychosocial model supporting future living kidney donor's during the donation process.