Raising awareness of unspecified living kidney donation: An ELPAT

Background: Living donor kidney transplantation (LDKT) is the preferred treatment for patients with end-stage renal disease and unspecified living kidney donation is morally justified. Despite the excellent outcomes of LDKT, unspecified kidney donation (UKD) is limited to a minority of European countries due to legal constraints and moral objections. Consequently, there are significant variations in practice and approach between countries and the contribution of UKD is undervalued. Where UKD is accepted as routine, an increasing number of patients in the kidney exchange programme are successfully transplanted when a 'chain' of transplants is triggered by a single unspecified donor. By expanding the shared living donor pool, the benefit of LDKT is extended to patients who do not have their own living donor because a recipient on the national transplant list always completes the chain. Is there a moral imperative to increase the scope of UKD and how could this be achieved? Methods: An examination of the literature and individual country practices was performed to identify the limitations on UKD in Europe and recommend strategies to increase transplant opportunities. Results: Primary limitations to UKD, key players and their roles and responsibilities were identified. Conclusions: Raising awareness to encourage the public to volunteer to donate is appropriate and desirable to increase UKD. Recommendations are made to provide a framework for increasing awareness and engagement in UKD. The public, healthcare professionals, policy makers and society and religious leaders have a role to play in creating an environment for change

Should health care professionals encourage living kidney donation?

Living kidney donation provides a promising opportunity in situations where the scarcity of cadaveric kidneys is widely acknowledged. While many patients and their relatives are willing to accept its benefits, others are concerned about living kidney programs; they appear to feel pressured into accepting living kidney transplantations as the only proper option for them. As we studied the attitudes and views of patients and their relatives, we considered just how actively health care professionals should encourage living donation. We argue that active interference in peoples’ personal lives is justified - if not obligatory. First, we address the ambiguous ideals of non-directivity and value neutrality in counselling. We describe the main pitfalls implied in these concepts, and conclude that these concepts cannot account for the complex reality of living donation and transplantation. We depict what is required instead as truthful information and context-relative counselling. We then consider professional interference into personal belief systems. We argue that individual convictions are not necessarily strong, stable, or deep. They may be flawed in many ways. In order to justify interference in peoples’ personal lives, it is crucial to understand the structure of these convictions. Evidence suggests that both patients and their relatives have attitudes towards living kidney donation that are often open to change and, accordingly, can be influenced. We show how ethical theories can account for this reality and can help us to discern between justified and unjustified interference. We refer to Stephen Toulmin’s model of the structure of logical argument, the Rawlsian model of reflective equilibrium, and Thomas Nagel’s representation of the particularistic position

Fatigue One to Five Years after Lung Transplantation

PURPOSE: The knowledge is scarce regarding how recovery and well-being after lung transplantation is affected by various symptoms. Thus, little is known about self-management support for these recipients. Since fatigue is a symptom that severely impair well-being, the aim of this study was to explore associations between fatigue and influencing factors as perceived self-efficacy, social and psychological well-being, and recovery. METHODS: Cross-sectional, multi-center cohort study. Lung recipients (n=117) due for an annual follow-up one to five years after transplantation were screened with The Multidimensional Fatigue Inventory-20, Self-Efficacy for Managing Chronic Disease scale, Postoperative Recovery Profile questionnaire and the Organ Transplant Symptom and Well-being Instrument. RESULTS: Totally, 56% reported high general fatigue regardless of follow-up time. Regardless of time after transplantation patients reported high levels of fatigue. Lung recipients at the four-year follow-up reported most severe fatigue in all dimensions except for mental fatigue. There was no relationship between lung function (FEV1) and any of the five dimensions of fatigue. There was a weak relationship between mental fatigue and the grade of Bronchiolitis obliterans syndrome (rs-.202*). A strong negative correlation (range -.66- -.73; p<0.001) was found between four out of five dimensions of fatigue (general, physical fatigue, reduced activity and reduced motivation) and self-efficacy. A high level of fatigue was related to impaired self-efficacy. There was a strong relationship between all dimensions of fatigue and both mental and social well-being. Regardless of follow-up time, those reporting being fully or almost fully recovered were significantly less fatigued. CONCLUSION: A high level of fatigue is related to impaired self-efficacy causing a risk of impaired self-management ability and an increased demand for self-management support. Self-perceived recovery might be a matter of the lung recipient's experienced fatigue. Fatigue should be a preferred target of interventions in clinical practice due to its association to self-efficacy and recovery

Fear of Graft Rejection after Heart Transplantation

PURPOSE: Perceived Threat of the Risk of Graft Rejection (PTRGR) is prominent in organ transplant recipients' lives. When asked about what they fear most, the commonest response is graft rejection. A reasonable assumption is that this perceived threat is also relevant for heart recipients and involves various psychological reactions, such as efforts to cope with the perceived threat. There are no published data on heart recipients' PTRGR. Therefore, the aim of the present study was to explore the perceived threat of the risk of graft rejection and its relationship to psychological general well-being and self-efficacy one to five years after heart transplantation. METHODS: A total of 79 heart recipients due for their yearly follow-up one to fiveyears after heart transplantation were included. The key instrument used was the Perceived Threat of the Risk of Graft Rejection (PTGR) covering three factors. The meaning of the first factor, graft-related threat (GRT), is a perception that the primary disease will return, leaving one as ill as before the transplantation and facing re-transplantation. The second factor, intrusive anxiety (IA), means being constantly aware of the risk of graft rejection and thinking about it all the time. It also means experiencing great anxiety, which is elevated when taking immunosuppressive medication or undergoing a biopsy. Finally, the third factor, lack of control (LOC), involves perceptions that the threat of the risk of graft rejection is beyond one's control, revealing the degree of belief that one can control and protect oneself from the threat. Additional instruments used were the Psychological General Well-being (PGWB) and Self-efficacy in chronic illness. RESULTS: Heart recipients younger than 50 years reported more graft related threat than those older than 50 years. Further, those who had experienced one or more graft rejection reported less graft related threat. Patients with good psychological well-being reported both less intrusive anxiety and higher control than those with poor psychological well-being. CONCLUSION: Fear of graft rejection, especially intrusive anxiety seems related to psychological general well-being after heart transplantation. Successful experience from graft rejection might reduce the graft related threat