Marion Siebelink

Tolerance of Organ Transplant Recipients to Physical Activity during a High-Altitude Expedition : Climbing Mount Kilimanjaro

Background It is generally unknown to what extent organ transplant recipients can be physically challenged. During an expedition to Mount Kilimanjaro, the tolerance for strenuous physical activity and high-altitude of organ transplant recipients after various types of transplantation was compared to non-transplanted controls. Methods Twelve organ transplant recipients were selected to participate (2 heart-, 2 lung-, 2 kidney-, 4 liver-, 1 allogeneic stem cell- and 1 small bowel-transplantation). Controls comprised the members of the medical team and accompanying family members (n = 14). During the climb, cardiopulmonary parameters and symptoms of acute mountain sickness were recorded twice daily. Capillary blood analyses were performed three times during the climb and once following return. Results Eleven of the transplant participants and all controls began the final ascent from 4700 meters and reached over 5000 meters. Eight transplant participants (73%) and thirteen controls (93%) reached the summit (5895m). Cardiopulmonary parameters and altitude sickness scores demonstrated no differences between transplant participants and controls. Signs of hyperventilation were more pronounced in transplant participants and adaptation to high-altitude was less effective, which was related to a decreased renal function. This resulted in reduced metabolic compensation. Conclusion Overall, tolerance to strenuous physical activity and feasibility of a high-altitude expedition in carefully selected organ transplant recipients is comparable to non-transplanted controls.

Pediatric Deceased Donation-A Report of the Transplantation Society Meeting in Geneva

The Ethics Committee of The Transplantation Society convened a meeting on pediatric deceased donation of organs in Geneva, Switzerland, on March 21 to 22, 2014. Thirty-four participants from Africa, Asia, the Middle East, Oceania, Europe, and North and South America explored the practical and ethical issues pertaining to pediatric deceased donation and developed recommendations for policy and practice. Their expertise was inclusive of pediatric intensive care, internal medicine, and surgery, nursing, ethics, organ donation and procurement, psychology, law, and sociology. The report of the meeting advocates the routine provision of opportunities for deceased donation by pediatric patients and conveys an international call for the development of evidence-based resources needed to inform provision of best practice care in deceased donation for neonates and children.

Children's opinions about organ donation: a first step to assent?

BACKGROUND Parents have to decide about organ donation after the death of their child. Although most parents probably would like to respect their childs intentions, parents often are not aware of their childs wishes. This requires insight into childrens opinions about donation. METHODS An internet survey that investigated whether Dutch children in the age range of 12 through 15 years had heard about organ donation, what their opinions were on donation and whether the topic had been discussed at home. Questionnaire response rate 38%. RESULTS Around 99% of 2016 responders had heard about organ donation and about the possibility of becoming a donor, 75% preferred to decide for themselves about donation, 43% had discussed organ donation more than once at home, 66% were willing to donate. The willingness to donate was positively associated with age and socio-economic status. CONCLUSION This survey indicates that these children at 12 through 15 years of age are capable and willing to think about organ donation. Thought should be given about how to raise awareness and how to enable parents and children to develop some sort of health literacy concerning the concept of organ donation. Children and their parents should be given adequate opportunities to receive appropriate information, suited to their psychological and moral developmental status.

Could minors be living kidney donors? A systematic review of guidelines, position papers and reports

The purpose of this study is to systematically review guidelines, position papers, and reports on living kidney donation by minors. We systematically searched the databases such as Medline, Embase, ISI Web of knowledge, Google scholar as well as the websites of various bioethics committees, transplant organizations and societies. Guidelines were included if they provided recommendations for or against living kidney donation by minors. Data were analyzed using qualitative content analysis. We included 39 documents in this study. Twenty seven of these endorse an absolute prohibition of living kidney donation by minors, because of concerns regarding the decision‐making capacity of minors, the impartiality of parental authorization, the best interests of the minor, and the necessity of the donation. Twelve guidelines, however, would exceptionally allow living kidney donation by minors, provided that adequate safeguards are put in place, including an assessment of the minors autonomy and maturity, authorization by an independent body, assuring that the anticipated psychosocial benefits outweigh the medical and psychosocial risks for the donor and the restriction to situations of last resort. A more adequate medical and psychosocial follow‐up of living kidney donors may likely contribute to a more unified approach towards living kidney donation by minors.

Psychosocial impact of pediatric living‐donor kidney and liver transplantation on recipients, donors, and the family: a systematic review

Living‐donor kidney and liver transplantation intend to improve pediatric recipients’ psychosocial well‐being, but psychosocial impact in recipients strongly depends upon the impact on the donor and the quality of family relations. We systematically reviewed quantitative and qualitative studies addressing the psychosocial impact of pediatric living‐donor kidney and liver transplantation in recipients, donors, and the family. In accordance with the PRISMA guidelines, we systematically searched the databases Medline, Web of Knowledge, Cinahl, Embase, ERIC, and Google Scholar. We identified 23 studies that satisfied our inclusion criteria. Recipients had improved coping skills and satisfactory peer relationships, but also reported anxiety and depressive symptoms, worried about the future, and had a negative body image. Similarly, donors experienced increased self‐esteem, empowerment, and community awareness, but also complained of postoperative pain and a lack of emotional support. With respect to family impact, transplantation generated a special bond between the donor and the recipient, characterized by gratitude and admiration, but also raised new expectations concerning the recipients lifestyle. As psychological problems in recipients were sometimes induced by feelings of guilt and indebtedness toward the donor, we recommend more research on how gift exchange dynamics function within donor–recipient relationships, enrolling donors and recipients within the same study.

Key factors in paediatric organ and tissue donation : an overview of literature in a chronological working model

There is a growing shortage of size‐matched organs and tissues for children. Although examples of substandard care are reported in the literature, there is no overview of the paediatric donation process. The aim of the study is to gain insight into the chain of events, practices and procedures in paediatric donation. Method; a survey of the 1990–2010 literature on paediatric organ and tissue donation and categorization into a coherent chronological working model of key events and procedures. Studies on paediatric donation are rare. Twelve empirical studies were found, without any level I or level II‐1 evidence. Seventy‐five per cent of the studies describe the situation in the United States. Literature suggests that the identification of potential donors and the way in which parental consent is requested may be substandard. We found no literature discussing best practices. Notwithstanding the importance of looking at donation care as an integrated process, most studies discuss only a few isolated topics or sub‐processes. To improve paediatric donation, more research is required on substandard factors and their interactions. A chronological working model, as presented here, starting with the identification of potential donors and ending with aftercare, could serve as a practical tool to optimize paediatric donation.

Children as donors: a national study to assess procurement of organs and tissues in pediatric intensive care units

A shortage of size‐matched organs and tissues is the key factor limiting transplantation in children. Empirical data on procurement from pediatric donors is sparse. This study investigated donor identification, parental consent, and effectuation rates, as well as adherence to the national protocol. A national retrospective cohort study was conducted in all eight Dutch pediatric intensive care units. Records of deceased children were analyzed by an independent donation officer. Seventy‐four (11%) of 683 deceased children were found to be suitable for organ donation and 132 (19%) for tissue donation. Sixty‐two (84%) potential organ donors had been correctly identified; the parental consent and effectuation rate was 42%. Sixty‐three (48%) potential tissue donors had been correctly identified; the parental consent and effectuation rate was 27%. Correct identification increased with age (logistic regression, organs: P = .024; tissues: P = .011). Although an overall identification rate of 84% of potential organ donors may seem acceptable, the variation observed suggests room for improvement, as does the overall low rate of identification of pediatric tissue donors. Efforts to address the shortage of organs and tissues for transplantation in children should focus on identifying potential donors and on the reasons why parents do not consent.

Key factors in paediatric organ and tissue donation

There is a growing shortage of size‐matched organs and tissues for children. Although examples of substandard care are reported in the literature, there is no overview of the paediatric donation process. The aim of the study is to gain insight into the chain of events, practices and procedures in paediatric donation. Method; a survey of the 1990–2010 literature on paediatric organ and tissue donation and categorization into a coherent chronological working model of key events and procedures. Studies on paediatric donation are rare. Twelve empirical studies were found, without any level I or level II‐1 evidence. Seventy‐five per cent of the studies describe the situation in the United States. Literature suggests that the identification of potential donors and the way in which parental consent is requested may be substandard. We found no literature discussing best practices. Notwithstanding the importance of looking at donation care as an integrated process, most studies discuss only a few isolated topics or sub‐processes. To improve paediatric donation, more research is required on substandard factors and their interactions. A chronological working model, as presented here, starting with the identification of potential donors and ending with aftercare, could serve as a practical tool to optimize paediatric donation.

Heart valve donation in two small infants

The shortage of small donor heart valves forces surgeons to use mechanical heart valves as the second-best option for valve replacement in infants. This shortage of small donor heart valves originates primarily in the unawareness of physicians of the possibility of heart valve donation in infants [2]. In view of the current shortage of small donor heart valves we report here on two cases of heart valve donation in small infants in an attempt to increase physicians’ awareness of the problem. Case 1 was a 6-month-old male infant who developed a septic shock during screening for orthotopic liver transplantation for end-stage liver failure due to biliary atresia. He was admitted to the pediatric intensive care unit, where he eventually died of ongoing sepsis. In light of their son’s possible liver transplantation the parents had studied the matter of donation extensively and requested that his heart valves be harvested for donation. They were aware that bacterial cultures would have to be performed and that the valves would have to be discarded if a micro-organism was cultured. Cultures remained negative, and 8-weeks later the pulmonary valve was successfully implanted in a 5-weekold male infant. Case 2 was a 5-week-old male infant with a history of severe neonatal epilepsy who was admitted to the pediatric intensive care unit because of respiratory failure. Severe brain damage without the possibility of meaningful recovery was diagnosed on the basis of the clinical picture and electroencephalograms (EEG’s). Intensive care was withdrawn, and the infant died. Having become aware of the possibility of tissue donation in infants by the parents of the infant described in case 1, we asked the parents to consider heart valve donation. They agreed under the condition that the heart would be returned in time for the funeral. After consultation with the Bio Implant ServicesFoundation (BIS-Foundation), which is the intermediary in the donation and allocation of human tissues for The Netherlands, Belgium, Germany, Slovenia and Austria, we were able to provide this guarantee. Ten weeks later the aortic valve was successfully implanted in a 10-day-old female infant. Most people who die are able to donate tissue, and in this respect tissue donation differs substantially from organ donation. Organ donation remains primarily restricted to the Intensive Care Unit (ICU), despite the recent development of non-heart-beating organ donation. For this reason, the pool of potential tissue donors is much larger than the pool of potential organ donors. However, despite this large pool, shortage of donor tissues exists [1, 2]. Tissue donation involves the cornea, skin, bone and heart valves. In children, tissue donation is limited to the cornea (in children over 2 years of age) and heart valves. Because of size and maturation issues, the donation of skin, cartilage and bone is only possible in individuals over 16 years of age. In infants the main indications for valve replacement are critical aortic valve stenosis and right outflow tract abnormalities (i.e. pulmonary atresia, truncus arteriosus and severe tetralogy of Fallot). In critical aortic stenosis, the Ross procedure is the operative technique of choice: the patient’s own pulmonary valve serves as an autograft for the stenotic aortic valve, and an appropriately sized pulmonary or aortic valve allograft is used to replace the pulmonary valve [5]. Autografts are preferred because they J. K. Kieboom (*) Department of Pediatrics, Beatrix Children’s Hospital, University Medical Center Groningen, P.O. Box 30.001, 9700 RB Groningen, The Netherlands e-mail: j.k.w.kieboom@bkk.umcg.nl Tel.: +31-50-3614294 Fax: +31-50-3614235

Literature overview highlights lack of paediatric donation protocols but identifies common themes that could guide their development

Paediatric donation is a unique and extremely sensitive process that requires specific knowledge and competencies. Most countries use protocols for organ and tissue donation to ensure optimal care for the donor and family, but these mainly focus on adults. However, the donation process for children differs from adults in many ways. An overview of the literature was performed to identify protocols for the paediatric population.