The Quality of Life of Children Facing Life-Limiting Conditions and That of Their Parents in Belgium: A Cross-Sectional Study

Paediatric palliative care (PPC) aims to improve children’s quality of life, but this outcome is rarely measured in clinical care. PPC is provided in Belgium through six transmural paediatric liaison teams (PLTs) ensuring continuity of care for children with life-limiting or life-threatening conditions (LLC/LTC). This study aims to measure the quality of life (QoL) of children with LLC/LTC followed-up by PLTs and the QoL of their parents. Methods: During interviews, an original socio demographic questionnaire, the Children palliative outcome scale—version 2 (CPOS-2), the Fragebogen für Kinder und Jugendliche zur Erfassung der gesundheitsbezogenen Lebensqualität (KINDL) and the Quality of life in life-threatening Illness-Family caregiver (QOLLTI-F) were filled in by PLT members. Statistics were used to investigate significant differences between scores. Results were discussed and interpreted with six PLTs. Results: 73 children aged 1–18 were included in the study. Especially for items focusing on emotional items, children reported their QoL as higher than their parents did. The QoL scores were not significantly associated with the child’s condition’s severity. Conclusions: This study provides, for the first time, an overview of the QoL of children and parents followed-up by PLTs in Belgium

Access to paediatric palliative care in children and adolescents with complex chronic conditions: a retrospective hospital-based study in Brussels, Belgium

Background: Paediatric complex chronic conditions (CCCs) are life-limiting conditions requiring paediatric palliative care, which, in Belgium, is provided through paediatric liaison teams (PLTs). Like the number of children and adolescents with these conditions in Belgium, their referral to PLTs is unknown. Objectives: The aim of the study was to identify, over a 5-year period (2010-2014), the number of children and adolescents (0-19 years) living with a CCC, and also their referral to PLTs. Methods: International Classification of Disease codes (ICD-9) corresponding to a CCC, as described by Feudtner et al, and national registration numbers were extracted from the databases of all hospitals (n=8) and PLTs (n=2) based in the Brussels region. Aggregated data and pseudonymised national registration number were transmitted to the research team by a Trusted Third Party (eHealth). Ages and diagnostic categories were calculated using descriptive statistics. Results: Over 5 years (2010-2014) in the Brussels region, a total of 22 721 children/adolescents aged 0-19 years were diagnosed with a CCC. Of this number, 22 533 were identified through hospital registries and 572 through PLT registries. By comparing the registries, we found that of the 22 533 children/adolescents admitted to hospital, only 384 (1.7%) were also referred to a PLT. Conclusion: In Belgium, there may be too few referrals of children and adolescents with CCC to PLTs that ensure continuity of care

Pandemic A/H1N1v influenza 2009 in hospitalized children: a multicenter Belgian survey

<p>Abstract</p> <p>Background</p> <p>During the 2009 influenza A/H1N1v pandemic, children were identified as a specific "at risk" group. We conducted a multicentric study to describe pattern of influenza A/H1N1v infection among hospitalized children in Brussels, Belgium.</p> <p>Methods</p> <p>From July 1, 2009, to January 31, 2010, we collected epidemiological and clinical data of all proven (positive H1N1v PCR) and probable (positive influenza A antigen or culture) pediatric cases of influenza A/H1N1v infections, hospitalized in four tertiary centers.</p> <p>Results</p> <p>During the epidemic period, an excess of 18% of pediatric outpatients and emergency department visits was registered. 215 children were hospitalized with proven/probable influenza A/H1N1v infection. Median age was 31 months. 47% had ≥ 1 comorbid conditions. Febrile respiratory illness was the most common presentation. 36% presented with initial gastrointestinal symptoms and 10% with neurological manifestations. 34% had pneumonia. Only 24% of the patients received oseltamivir but 57% received antibiotics. 10% of children were admitted to PICU, seven of whom with ARDS. Case fatality-rate was 5/215 (2%), concerning only children suffering from chronic neurological disorders. Children over 2 years of age showed a higher propensity to be admitted to PICU (16% vs 1%, p = 0.002) and a higher mortality rate (4% vs 0%, p = 0.06). Infants less than 3 months old showed a milder course of infection, with few respiratory and neurological complications.</p> <p>Conclusion</p> <p>Although influenza A/H1N1v infections were generally self-limited, pediatric burden of disease was significant. Compared to other countries experiencing different health care systems, our Belgian cohort was younger and received less frequently antiviral therapy; disease course and mortality were however similar.</p

One CGIAR and the Integrated Agri-food Systems Initiative: From short-termism to transformation of the world’s food systems

Agri-food systems are besieged by malnutrition, yield gaps, and climate vulnerability, but integrated, research-based responses in public policy, agricultural, value chains, and finance are constrained by short-termism and zero sum thinking. As they respond to current and emerging agri-food system challenges, decision makers need new tools that steer toward multi-sector, evidence-based collaboration. To support national agri-food system policy processes, the Integrated Agri-food System Initiative (IASI) methodology was devel oped and validated through case studies in Mexico and Colombia. This holistic, multi-sector methodology builds on diverse existing data resources and leverages situation analysis, modeled predictions, and scenarios to synchronize public and private action at the national level toward sustainable, equitable, and inclusive agri-food systems. Culminating in collec tively agreed strategies and multi-partner tactical plans, the IASI methodology enabled a multi-level systems approach by mobilizing design thinking to foster mindset shifts and stakeholder consensus on sustainable and scalable innovations that respond to real-time dynamics in complex agri-food systems. To build capacity for these types of integrated, con text-specific approaches, greater investment is needed in supportive international institu tions that function as trusted in-region ‘innovation brokers.’ This paper calls for a structured global network to advance adaptation and evolution of essential tools like the IASI methodol ogy in support of the One CGIAR mandate and in service of positive agri-food systems transformation

Réflexions interdisciplinaires pour l’accompagnement de demandes d’euthanasie de mineurs en Belgique

Cadre de la recherche : En Belgique, l’euthanasie a été ouverte aux mineurs en février 2014. La demande à mourir doit être formulée par le mineur. Elle doit recevoir l’accord des parents. Elle est réglementée par un processus d’évaluation et d’accompagnement interdisciplinaire pour des situations de souffrance physique constante, insupportable et inapaisable ne présentant aucune autre solution raisonnable dans le contexte d’une affection incurable. Objectifs : Partager les réflexions et recommandations sur l’accompagnement des enfants, de leurs familles et des équipes dans le cadre des demandes d’euthanasie. Elles visent à pointer les éléments que cet accompagnement a en commun avec tout processus de soin, mais également ceux qui le caractérisent proprement. Méthodologie : Dès 2014, l’équipe mobile de soins palliatifs pédiatriques de l’Hôpital Universitaire des Enfants Reine Fabiola (HUDERF) de l’Hôpital Universitaire de Bruxelles (HUB) de l’Université Libre de Bruxelles (ULB) s’est réunie régulièrement de manière interdisciplinaire afin d’examiner et de discuter les différents aspects de la loi.Résultats : Le résultat de ce dialogue ouvre un champ de réflexions et de balises pour assurer un soin adapté et réglementé. Il vise à favoriser l’accompagnement de l’ensemble des personnes mobilisées par l’émergence d’une demande d’euthanasie. Il ne s’agit pas de définir un cadre strict, mais de proposer des repères généralisables et capables d’y assurer un soin dynamique, non linéaire, collaboratif et compréhensif.Conclusions :  L’euthanasie est un processus de soin et d’accompagnement allant aux rythmes multiples des personnes dont il a la responsabilité. Les balises de ce cheminement trouvent place à travers une constellation humaine et interdisciplinaire. Contribution : L’euthanasie de mineur en Belgique est une pratique rare, peu étudiée mais jamais anodine. Cet article interroge l’exceptionnelle singularité de ces processus de soin et les ressources interdisciplinaires nécessaires pour l’accompagner.Research framework: In Belgium, euthanasia was made available to minors in February 2014. The request to die must be expressed by the minor and receive parental consent. It is regulated by an interdisciplinary process and support for situations of constant, unbearable and unappeasable physical suffering presenting no other reasonable solution in the context of an incurable condition. Objectives: Share reflections and recommendations on support for children, their families and teams in the context of euthanasia requests. They aim to point out the elements that this support has in common with any care process, but also those that characterize it specifically. Methodology: Since 2014, the pediatric palliative care mobile team of the Queen Fabiola University Children's Hospital (HUDERF) of the Brussels University Hospital (HUB) of the Université Libre de Bruxelles (ULB) has met regularly on an interdisciplinary basis to examine and discuss the various aspects of the law. Results: The outcome of this dialogue opens up a field of reflection and guidelines for ensuring appropriate, regulated care. Its aim is to support all those involved in the emergence of a request for euthanasia. The aim is not to define a strict framework, but to propose generalizable benchmarks capable of ensuring dynamic, non-linear, collaborative and comprehensive care. Conclusions: Euthanasia is a process of care and accompaniment that follows the multiple rhythms of the people for whom it is responsible. A human and interdisciplinary constellation is needed to guide this process. Contribution: Euthanasia of minors in Belgium is a rare practice, little studied but never trivial. This article examines the exceptional singularity of this care process and the interdisciplinary resources needed to support it.Marco de la investigación: En Bélgica, la eutanasia se puso a disposición de los menores en febrero de 2014. La petición de morir debe ser expresada por el menor y recibir el consentimiento paterno. Se regula mediante un proceso interdisciplinar y se apoya en situaciones de sufrimiento físico constante, insoportable e inabordable que no presenten otra solución razonable en el contexto de una enfermedad incurable. Objetivos: Compartir reflexiones y recomendaciones sobre el apoyo a los niños, sus familias y equipos en el contexto de las solicitudes de eutanasia. Pretenden señalar los elementos que este apoyo tiene en común con cualquier proceso asistencial, pero también los que lo caracterizan específicamente. Metodología: Desde 2014, el equipo móvil de cuidados paliativos pediátricos del Hospital Infantil Universitario Reina Fabiola (HUDERF) del Hospital Universitario de Bruselas (HUB) de la Universidad Libre de Bruselas (ULB) se reúne periódicamente de forma interdisciplinar para examinar y debatir los distintos aspectos de la ley. Resultados: El resultado de este diálogo abre un campo de reflexión y directrices para garantizar una asistencia adecuada y regulada. Su objetivo es apoyar a todos los implicados en la aparición de una solicitud de eutanasia. No se trata de definir un marco estricto, sino de proponer puntos de referencia generalizables capaces de garantizar una atención dinámica, no lineal, colaborativa e integral. Conclusiones: La eutanasia es un proceso de atención y acompañamiento que sigue los múltiples ritmos de las personas de las que se responsabiliza. Se necesita una constelación humana e interdisciplinaria para guiar este proceso. Contribución: La eutanasia de menores en Bélgica es una práctica rara, poco estudiada pero nunca trivial. Este artículo examina la singularidad excepcional de este proceso asistencial y los recursos interdisciplinarios necesarios para apoyarlo

Réflexions interdisciplinaires pour l’accompagnement de demandes d’euthanasie de mineurs en Belgique

Research framework: In Belgium, euthanasia was made available to minors in February 2014. The request to die must be expressed by the minor and receive parental consent. It is regulated by an interdisciplinary process and support for situations of constant, unbearable and unappeasable physical suffering presenting no other reasonable solution in the context of an incurable condition. Objectives: Share reflections and recommendations on support for children, their families and teams in the context of euthanasia requests. They aim to point out the elements that this support has in common with any care process, but also those that characterize it specifically. Methodology: Since 2014, the pediatric palliative care mobile team of the Queen Fabiola University Children's Hospital (HUDERF) of the Brussels University Hospital (HUB) of the Université Libre de Bruxelles (ULB) has met regularly on an interdisciplinary basis to examine and discuss the various aspects of the law. Results: The outcome of this dialogue opens up a field of reflection and guidelines for ensuring appropriate, regulated care. Its aim is to support all those involved in the emergence of a request for euthanasia. The aim is not to define a strict framework, but to propose generalizable benchmarks capable of ensuring dynamic, non-linear, collaborative and comprehensive care. Conclusions: Euthanasia is a process of care and accompaniment that follows the multiple rhythms of the people for whom it is responsible. A human and interdisciplinary constellation is needed to guide this process. Contribution: Euthanasia of minors in Belgium is a rare practice, little studied but never trivial. This article examines the exceptional singularity of this care process and the interdisciplinary resources needed to support it

Réflexions interdisciplinaires pour l’accompagnement de demandes d’euthanasie de mineurs en Belgique

Cadre de la recherche : En Belgique, l’euthanasie a été ouverte aux mineurs en février 2014. La demande à mourir doit être formulée par le mineur. Elle doit recevoir l’accord des parents. Elle est réglementée par un processus d’évaluation et d’accompagnement interdisciplinaire pour des situations de souffrance physique constante, insupportable et inapaisable ne présentant aucune autre solution raisonnable dans le contexte d’une affection incurable. Huit ans après être entrée dans la loi, avec seulement quatre cas enregistrés en Belgique, elle demeure très rare. Pourtant, des questions à son propos sont régulièrement présentes au sein des équipes de soin. En tant qu’acte de soin, du chevet des patients et de leurs familles jusqu’aux échelles institutionnelles, sociétales et politiques, l’euthanasie appelle une réflexion, une coordination et une réalisation interdisciplinaire pour permettre au soin de demeurer humain. Ce travail doit prendre place en équipe pour assurer la concertation, la prévision et la constitution des balises qui structureront l’accompagnement de ces projets de soin. Objectifs : Partager les réflexions et recommandations sur l’accompagnement des enfants, de leurs familles et des équipes dans le cadre des demandes d’euthanasie. Elles visent à pointer les éléments que cet accompagnement a en commun avec tout processus de soin, mais également ceux qui le caractérisent proprement. Ces recommandations sont complétées par des observations d’un éthicien spécialisé en éthique clinique, pédiatrie et soins palliatifs. Méthodologie : Dès 2014, l’équipe mobile de soins palliatifs pédiatriques de l’Hôpital Universitaire des Enfants Reine Fabiola (HUDERF) de l’Hôpital Universitaire de Bruxelles (HUB) de l’Université Libre de Bruxelles (ULB) s’est réunie de manière interdisciplinaire avec divers intervenants de l’hôpital des enfants, lors d’une dizaine de réunions, afin d’examiner et de discuter les différents aspects de la loi. Résultats : Le résultat de ce dialogue ouvre un champ de réflexions et de balises pour assurer un soin adapté et réglementé. Il vise à favoriser l’accompagnement de l’ensemble des personnes mobilisées par l’émergence d’une demande d’euthanasie. Il ne s’agit pas de définir un cadre strict, mais de proposer des repères généralisables et capables d’y assurer un soin dynamique, non linéaire, collaboratif et compréhensif. Conclusions :  L’euthanasie de mineur en Belgique est une pratique rare, mais jamais anodine. Sa question interroge l’exceptionnelle singularité de tout processus de soin de fin de vie et les ressources interdisciplinaires nécessaires pour l’accompagner.Research Framework: In Belgium, euthanasia was made available to minors in February 2014. The request to die must be expressed by the minor and must receive the consent of the parents. It is regulated by an interdisciplinary evaluation process and support for situations of constant, unbearable and unappeasable physical suffering with no other reasonable solution in the context of an incurable condition. Eight years after its entry into the law, with only four cases registered in Belgium, it remains very rare. However, questions on the subject are regularly asked by the care teams. As an act of care, from the patient’s bedside and their families to the institutional, societal and political levels, euthanasia requires interdisciplinary reflection, coordination and implementation to ensure that care remains humane. This work must therefore be undertaken as a team to assure consultation, planning and the establishment of guidelines that will structure the support of these care projects. Objectives: To share reflections and recommendations on the care of children, their families and teams in the context of requests for euthanasia. They aim to point out the elements that this support has in common with any care process, but also those that characterize it specifically. These recommendations are supplemented by the observations of an ethicist specializing in clinical ethics, pediatrics and palliative care. Methodology: Starting in 2014, the pediatric palliative mobile care team of the Queen Fabiola Children’s University Hospital (HUDERF) of the Brussels University Hospital (HUB) of the Free University of Brussels (ULB) has met in an interdisciplinary manner with various stakeholders of the children’s hospital in about ten meetings to review and discuss the different aspects of the law. Results: The result of this dialogue opens up a field of reflection and guidelines for ensuring appropriate and regulated care. It aims to promote the support of all those mobilized by the emergence of a request for euthanasia. It is not a question of defining a strict framework, but rather of proposing generalizable benchmarks capable of assuring dynamic, non-linear, collaborative and comprehensive care. Conclusions: Euthanasia of minors in Belgium is a rare practice, yet never trivial. Its question challenges the exceptional singularity of any end-of-life care process and the interdisciplinary resources needed to accompany it.Marco de la investigación: En Bélgica, la eutanasia está legalmente permitida para los menores desde febrero de 2014. Su solicitud debe ser expresada por el menor. Debe recibir el acuerdo de los representantes legales. Se regula mediante una valoración y un proceso de evaluación y acompañamiento interdisciplinar para situaciones de afectación incurable que presenten un sufrimiento físico constante, insoportable e inasumible sin otra solución razonable. Ocho años después de su regulación legal, con sólo cuatro casos registrados, sigue siendo muy poco frecuente. Sin embargo, esta problemática está regularmente presente en los equipos asistenciales. Como acto asistencial, desde la cabecera del enfermo y su familia hasta los niveles institucional, social y político, la eutanasia exige una reflexión, una coordinación y una puesta en práctica interdisciplinarias para que la asistencia siga siendo humana. Por lo tanto, este trabajo debe realizarse en equipo para garantizar la concertación, la planificación y el establecimiento de directrices que estructuren el apoyo a estos proyectos de cuidados. Objetivos: Compartir reflexiones y recomendaciones sobre el seguimiento de los niños, sus familias y los equipos en el contexto de las solicitudes de eutanasia. Éstas pretenden señalar los elementos que este acompañamiento tiene en común con cualquier proceso asistencial, pero también los que lo caracterizan específicamente. Estas recomendaciones se enriquecen con las observaciones de un especialista en ética clínica, pediatría y cuidados paliativos. Metodología: Desde 2014, el equipo móvil de cuidados paliativos pediátricos del Hospital Universitario Infantil Reina Fabiola (HUDERF) del Hospital Universitario de Bruselas (HUB) de la Universidad Libre de Bruselas (ULB) se ha reunido de forma interdisciplinar con diversas partes interesadas del hospital infantil, durante una decena de encuentros, para examinar y debatir los diversos aspectos de la ley. Resultados: El resultado de este diálogo abre un campo de reflexiones y orientaciones para garantizar unos cuidados adaptados y regulados. Su objetivo es promover el apoyo a todos los implicados en la aparición de una solicitud de eutanasia. No se trata de definir un marco estricto, sino de ofrecer puntos de referencia generalizables y capaces de garantizar una atención dinámica, no lineal, colaborativa e integral. Conclusiones: La eutanasia de menores en Bélgica es una práctica poco frecuente, pero nunca trivial. Su temática cuestiona la singularidad excepcional de cualquier proceso de atención al final de la vida y los recursos, especialmente interdisciplinares, necesarios para acompañarlo

Le futur des soins intensifs pédiatriques

Paediatric intensive care is born 40 years ago. It has been shown that admission of critically ill children in intensive care (ICU) where no paediatric intensivists worked increased significantly the mortality and the length of stay. The recognition of Paediatric Intensive Care (PICU) does not exist in Belgium and children are admitted in both adult and paediatric intensive care units. It is mandatory to recognise the PICU specificity and the usefulness of a fellowship in paediatric intensive care. Development of molecular biology and genetics will permit in the near future to understand reversible and irreversible cellular processes of the majority of problems responsible for mortality in critical care and to allow the development of new diagnostic and therapeutic techniques. Rapid development of information will permit the creation of multicenter databases including all PICU's data. The final goal is an intelligent tool for making decision process. Telemedecine is born which permits a virtual consultation of the patient. Technological progress must not impair the wellbeing of the child and its family. The PICU of the future must be "parents admitted". PICU profile is progressively changing, the way of taking care of the critically ill child and its family is also changing and improving. An ethical reflexion among the health care providers' team and a dialogue with parents will blossom.info:eu-repo/semantics/publishe

Regards croisés sur la transition de la médecine pédiatrique à la médecine pour adultes en Belgique

En Belgique, il n’existe pas encore de procédure standardisée d’accompagnement du transfert de la pédiatrie vers la médecine pour adultes des jeunes patients présentant une maladie chronique. Pourtant, le sujet appelle avec prégnance le développement de balises pluridisciplinaires. C’est en croisant les regards d’une pédiatre, de deux psychologues et d’un éthicien que nous proposons quelques éléments clés d’une transition réussie : 1) Préparer la transition de manière précoce ; 2) Promouvoir le savoir, savoir-faire et savoir-être du patient ; 3) Améliorer la continuité des soins et la collaboration entre le patient, sa famille, les équipes soignantes, les associations de patients et de familles ; 4) Accompagner les parents dans cette transition ; 5) Améliorer les compétences des équipes soignantes sur les spécificités de la médecine des adolescents ; 6) Individualiser la transition, respecter le rythme et la singularité de chacun ; 7) Développer une approche interdisciplinaire de cette transition ; 8) Développer une collaboration avec les pouvoirs publics et les experts nationaux et internationaux ; et 9) Développer la recherche dans ce nouveau champ disciplinaire

Self-requested euthanasia for children in Belgium.

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