Neonatal donation: are newborns too young to be recognized?

Neonatal organ and tissue donation is not common practice in the Netherlands. At the same time, there is a transplant waiting list for small size-matched organs and tissues. Multiple factors may contribute to low neonatal donation rates, including a lack of awareness of this option. This study provides insight into potential neonatal organ and tissue donors and reports on how many donors were actually reported to the procurement organization. We performed a retrospective analysis of the mortality database and medical records of two largest neonatal intensive care units (NICUs) in the Netherlands. This study reviewed records of neonates with a gestational age >37 weeks and weight >3000g who died in the period from January 1, 2005 through December 31, 2016. During the study period, 259 term-born neonates died in the two NICUs. In total, 132 neonates with general contra-indications for donation were excluded. The medical records of 127 neonates were examined for donation suitability. We identified five neonates with documented brain death who were not recognized as potential organ and/or tissue donors. Of the remaining neonates, 27 were found suitable for tissue donation. One potential tissue donor had been reported to the procurement organization. In three cases, the possibility of donation was brought up by parents.Conclusion: A low proportion (2%) of neonates who died in the NICUs were found suitable for organ donation, and a higher proportion (12%) were found suitable for tissue donation. We suggest that increased awareness concerning the possibility of neonatal donation would likely increase the identification of potential neonatal donors. What is Known: • There is an urgent need for very small organs and tissues from neonatal donors What is New: • A number of neonates who died in the NICU were suitable organ or/and tissue donors but were not recognized as donors. • Knowledge on neonatal donation possibilities is also important for proper counseling of parents who sometimes inquire for the possibility of organ and tissue donation.

Lack of knowledge and experience highlights the need for a clear paediatric organ and tissue donation protocol in the Netherlands.

AIM: This study explored the attitudes of medical professionals to organ and tissue donation in paediatric intensive care units (PICUs) and neonatal intensive care units (NICUs) in the Netherlands. It also examined their compliance with the existing Dutch donation protocol and assessed whether a paediatric donation protocol was needed. METHODS: We invited 966 professionals working in all eight PICUs and the two largest NICUs to complete an online survey from December 2016 until April 2017. RESULTS: A quarter (25%) took part and they included PICU intensivists, neonatologists, nurses and other health and allied professionals. Most were female and nurses. More than half (54%) of the PICU respondents considered paediatric organ donation to be very important and 53% supported tissue donation. In contrast, only 22% of the NICU respondents believed that both neonatal organ and tissue donation were very important. Familiarity and compliance with the existing national donation protocol were low. PICU nurses had significantly less experience than PICU intensivists and felt less comfortable with the donation process. None of the NICU respondents had prior donation experience. CONCLUSION: Paediatric intensive care units and NICU professionals lack specialised knowledge and experience on organ and tissue donation. A comprehensive and clear paediatric donation protocol is clearly needed.

Rationale and design of TransplantLines: a prospective cohort study and biobank of solid organ transplant recipients.

INTRODUCTION: In the past decades, short-term results after solid organ transplantation have markedly improved. Disappointingly, this has not been accompanied by parallel improvements in long-term outcomes after transplantation. To improve graft and recipient outcomes, identification of potentially modifiable risk factors and development of biomarkers are required. We provide the rationale and design of a large prospective cohort study of solid organ transplant recipients (TransplantLines). METHODS AND ANALYSIS: TransplantLines is designed as a single-centre, prospective cohort study and biobank including all different types of solid organ transplant recipients as well as living organ donors. Data will be collected from transplant candidates before transplantation, during transplantation, at 3 months, 6 months, 1 year, 2 years and 5 years, and subsequently every 5 years after transplantation. Data from living organ donors will be collected before donation, during donation, at 3 months, 1 year and 5 years after donation, and subsequently every 5 years. The primary outcomes are mortality and graft failure. The secondary outcomes will be cause-specific mortality, cause-specific graft failure and rejection. The tertiary outcomes will be other health problems, including diabetes, obesity, hypertension, hypercholesterolaemia and cardiovascular disease, and disturbances that relate to quality of life, that is, physical and psychological functioning, including quality of sleep, and neurological problems such as tremor and polyneuropathy. ETHICS AND DISSEMINATION: Ethical approval has been obtained from the relevant local ethics committee. The TransplantLines cohort study is designed to deliver pioneering insights into transplantation and donation outcomes. The study design allows comprehensive data collection on perioperative care, nutrition, social and psychological functioning, and biochemical parameters. This may provide a rationale for future intervention strategies to more individualised, patient-centred transplant care and individualisation of treatment. TRIAL REGISTRATION NUMBER: NCT03272841.

Education on organ donation and transplantation in primary school; teachers' support and the first results of a teaching module.

Organ and tissue donation can also involve children. Because of its sensitivity, this topic requires careful decision making. Children have the ability to carefully reflect on this subject and enjoy participating in family discussions about it. Therefore, what children need is proper information. When schools are used to educate children about this subject, information about teacher support for this type of lesson along with its effects on the depth of family discussions is important. METHODS: A questionnaire was sent to all 7,542 primary schools in the Netherlands. The goal was to gather information on teachers' perspectives about a neutral lesson devoted to organ and tissue donation, and also on the best age to start giving such a lesson. The second part of our study examined the effects of a newly developed lesson among 269 primary school pupils. The school response was 23%. Of these, 70% were positive towards a lesson; best age to start was 10-11 years. Pupils reported 20% more family discussions after school education and enjoyed learning more about this topic. There is significant support in primary schools for a school lesson on organ and tissue donation. Educational programs in schools support family discussions.

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.

Estudio exploratorio en línea sobre las opiniones de los padres respecto de la donación de órganos: de las decisiones individuales a las conversaciones en familia / An online explorative study towards parents opinions about organ donation: from individual decisions to family discussions

Introducción. Muchos factores influyen sobre las decisiones de los padres acerca de la donación de órganos de sus hijos. Uno de tantos factores puede ser una conversación previa en un contexto no crítico. La pregunta que surge es si los padres han considerado este tema con respecto a ellos mismos y si han hablado del tema entre sí o con sus hijos. Métodos. Encuesta exploratoria inicial realizada a través de Internet para investigar estas charlas, las opiniones de los padres sobre brindar clases en la escuela acerca de la donación, el umbral de edad para que un niño decida respecto de la donación y los factores determinantes que influyen en estos aspectos. Se envió el cuestionario a 14 000 miembros del panel. Se seleccionó a los encuestados que tenían hijos menores de 16 años. Resultados. La tasa de respuesta del cuestionario fue del 35%. De los 1146 encuestados con hijos, el 84% habían conversado sobre este tema con su pareja y, en promedio, el 46,5% habían conversado con sus hijos de 10 a 16 años de edad. No se halló una relación con la religión y el nivel educativo de los padres. El 69% de los padres tuvieron una opiniónpositiva acerca de dar clases en la escuela sobre la donación de órganos. A la mayoría de los niños se les permitió decidir por sí mismos a los 15-16 años. Conclusión. Las conversaciones en familia sobre la donación son frecuentes entre los miembros de la pareja, sin embargo, es posible mejorar las charlas con los niños. Si se quisiera, podrían ofrecerse factores desencadenantes de estas conversaciones a través de la información pública y de la enseñanza, lo que también ayudaría a educar sobre esta cuestión de salud.(AU)

Background: Parental decisions about organ donation by their child are influenced by many factors. One of these factors may be a previous discussion under non-crisis circumstances. The question then arises whether parents have thought about this topic for themselves and discussed it with each other or with their child. Methods: An initial exploratory Internet survey to explore these discussions, parental opinions about school lessons on donation, the age threshold for a child to decide about donation, and determinants that influence these aspects. Questionnaire was sent to 14,000panel members. We selected respondents with children younger than 16 years old. Results: Questionnaire response rate was 35%. Of all 1146 respondents with children, 84% had discussed the topic with their partner and, on average, 46.5% had discussed this with their child aged 10-16 years old. Religion and educational level of the parents were not related. Sixty-nine percent of parents were positive towards school lessons. Most of the children were allowed to decide for themselves at the age of 15/16 years old. Conclusion: Family discussions between spouses about donation do occur frequently, however, discussion with children can be improved. If desired, triggers for beginning these conversations could be provided through public information and school education, which would also contribute to health literacy on this subject.(AU)

Estudio exploratorio en línea sobre las opiniones de los padres respecto de la donación de órganos: de las decisiones individuales a las conversaciones en familia / An online explorative study towards parents' opinions about organ donation: from individual decisions to family discussions

Introducción. Muchos factores influyen sobre las decisiones de los padres acerca de la donación de órganos de sus hijos. Uno de tantos factores puede ser una conversación previa en un contexto no crítico. La pregunta que surge es si los padres han considerado este tema con respecto a ellos mismos y si han hablado del tema entre sí o con sus hijos. Métodos. Encuesta exploratoria inicial realizada a través de Internet para investigar estas charlas, las opiniones de los padres sobre brindar clases en la escuela acerca de la donación, el umbral de edad para que un niño decida respecto de la donación y los factores determinantes que influyen en estos aspectos. Se envió el cuestionario a 14 000 miembros del panel. Se seleccionó a los encuestados que tenían hijos menores de 16 años. Resultados. La tasa de respuesta del cuestionario fue del 35%. De los 1146 encuestados con hijos, el 84% habían conversado sobre este tema con su pareja y, en promedio, el 46,5% habían conversado con sus hijos de 10 a 16 años de edad. No se halló una relación con la religión y el nivel educativo de los padres. El 69% de los padres tuvieron una opiniónpositiva acerca de dar clases en la escuela sobre la donación de órganos. A la mayoría de los niños se les permitió decidir por sí mismos a los 15-16 años. Conclusión. Las conversaciones en familia sobre la donación son frecuentes entre los miembros de la pareja, sin embargo, es posible mejorar las charlas con los niños. Si se quisiera, podrían ofrecerse factores desencadenantes de estas conversaciones a través de la información pública y de la enseñanza, lo que también ayudaría a educar sobre esta cuestión de salud.

Background: Parental decisions about organ donation by their child are influenced by many factors. One of these factors may be a previous discussion under non-crisis circumstances. The question then arises whether parents have thought about this topic for themselves and discussed it with each other or with their child. Methods: An initial exploratory Internet survey to explore these discussions, parental opinions about school lessons on donation, the age threshold for a child to decide about donation, and determinants that influence these aspects. Questionnaire was sent to 14,000panel members. We selected respondents with children younger than 16 years old. Results: Questionnaire response rate was 35%. Of all 1146 respondents with children, 84% had discussed the topic with their partner and, on average, 46.5% had discussed this with their child aged 10-16 years old. Religion and educational level of the parents were not related. Sixty-nine percent of parents were positive towards school lessons. Most of the children were allowed to decide for themselves at the age of 15/16 years old. Conclusion: Family discussions between spouses about donation do occur frequently, however, discussion with children can be improved. If desired, triggers for beginning these conversations could be provided through public information and school education, which would also contribute to health literacy on this subject.

An online explorative study towards parents' opinions about organ donation: from individual decisions to family discussions.

BACKGROUND: Parental decisions about organ donation by their child are influenced by many factors. One of these factors may be a previous discussion under non-crisis circumstances. The question then arises whether parents have thought about this topic for themselves and discussed it with each other or with their child. METHODS: An initial exploratory Internet survey to explore these discussions, parental opinions about school lessons on donation, the age threshold for a child to decide about donation, and determinants that influence these aspects. Questionnaire was sent to 14,000 panel members. We selected respondents with children younger than 16 years old. RESULTS: Questionnaire response rate was 35%. Of all 1146 respondents with children, 84% had discussed the topic with their partner and, on average, 46.5% had discussed this with their child aged 10-16 years old. Religion and educational level of the parents were not related. Sixty-nine percent of parents were positive towards school lessons. Most of the children were allowed to decide for themselves at the age of 15/16 years old. CONCLUSION: Family discussions between spouses about donation do occur frequently, however, discussion with children can be improved. If desired, triggers for beginning these conversations could be provided through public information and school education, which would also contribute to health literacy on this subject.

An online explorative study towards parents opinions about organ donation: from individual decisions to family discussions. / An online explorative study towards parents opinions about organ donation: from individual decisions to family discussions.

BACKGROUND: Parental decisions about organ donation by their child are influenced by many factors. One of these factors may be a previous discussion under non-crisis circumstances. The question then arises whether parents have thought about this topic for themselves and discussed it with each other or with their child. METHODS: An initial exploratory Internet survey to explore these discussions, parental opinions about school lessons on donation, the age threshold for a child to decide about donation, and determinants that influence these aspects. Questionnaire was sent to 14,000 panel members. We selected respondents with children younger than 16 years old. RESULTS: Questionnaire response rate was 35

. Of all 1146 respondents with children, 84

had discussed the topic with their partner and, on average, 46.5

had discussed this with their child aged 10-16 years old. Religion and educational level of the parents were not related. Sixty-nine percent of parents were positive towards school lessons. Most of the children were allowed to decide for themselves at the age of 15/16 years old. CONCLUSION: Family discussions between spouses about donation do occur frequently, however, discussion with children can be improved. If desired, triggers for beginning these conversations could be provided through public information and school education, which would also contribute to health literacy on this subject.

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: 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'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 child's intentions, parents often are not aware of their child's wishes. This requires insight into children's 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.