Background Ifosfamide is a major anti-cancer drug in children with well-known renal toxicity. Understanding the mechanisms underlying this toxicity could help identify children at increased risk of toxicity. Methods The IFOS01 study included children undergoing ifosfamide-based chemotherapy for Ewing sarcoma or rhabdomyosarcoma. A fully evaluation of renal function was performed during and after chemotherapy. Proton nuclear magnetic resonance (NMR) and conventional biochemistry were used to detect early signs of ifosfamide-induced tubulopathy. The enzymatic activity of aldehyde dehydrogenase (ALDH) was measured in the peripheral blood lymphocytes as a marker of ifosfamide-derived chloroacetaldehyde detoxification capacity. Plasma and urine concentrations of ifosfamide and dechloroethylated metabolites were quantified. Results The 15 participants received a median total ifosfamide dose of 59 g/m 2 (range: 24–102), given over a median of 7 cycles (range: 4–14). All children had acute proximal tubular toxicity during chemotherapy that was reversible post-cycle, seen with both conventional assays and NMR. After a median follow-up of 31 months, 8/13 children presented overall chronic toxicity among which 7 had decreased glomerular filtration rate. ALDH enzymatic activity showed high inter- and intra-individual variations across cycles, though overall activity looked lower in children who subsequently developed chronic nephrotoxicity. Concentrations of ifosfamide and metabolites were similar in all children. Conclusions Acute renal toxicity was frequent during chemotherapy and did not allow identification of children at risk for long-term toxicity. A role of ALDH in late renal dysfunction is possible so further exploration of its enzymatic activity and polymorphism should be encouraged to improve the understanding of ifosfamide-induced nephrotoxicity.

Comme pour les patients, les besoins des proches aidants évoluent tout au long de la maladie, nécessitant de ce fait des propositions d’aide tout au long du parcours de soins du patient. En plus des dispositifs de soutien déjà présents, trois dispositifs spécifiques ont été créés : un accueil téléphonique, une consultation proche aidant et une consultation de prévention des facteurs de risque de cancer. Ces dispositifs visent à participer à la prévention de l’épuisement du proche aidant et constituent à ce titre une démarche de soins de répit.

Introduction :En Belgique comme dans d’autres pays, les aidants proches sortent doucement de l’ombre. Ils assurent diverses tâches, souvent complexes, pour aider, accompagner, soutenir de manière régulière ou continue un proche malade ou dépendant. Aujourd’hui, leur investissement n’est que partiellement reconnu.Objectifs :Au-delà d’un travail de sensibilisation sociétale et politique, nous nous sommes interrogés, en tant que professionnels de la santé en pédiatrie, sur ce qui pourrait être mis en oeuvre pour soutenir les parents-aidants plus précocement et de manière durable sur leur parcours afin de traiter voire de prévenir l’état d’épuisement qui les guette.Méthodes :Pour ce faire, nous avons décidé de mener une recherche participative pour co-construire avec des représentants de tous les acteurs concernés un projet de dispositif novateur dans le système de santé. Cette recherche s’est déroulée en Wallonie (Belgique), sur une période de 2 ans.Résultats :Les principaux résultats traduisent la perception des professionnels et des parents-aidants concernant les besoins de ces derniers ainsi que les réponses à y apporter sous la forme d’un panel de services coordonnés le plus complet et varié possible, tout en tenant compte d’un besoin identitaire émergent auquel nous souhaitons répondre par des ateliers d’éducation thérapeutique.Discussion :Pour bénéficier de répit, les parents doivent préalablement être soutenus dans une démarche de réflexion quant à leur identité de parents et de proches aidants.Conclusion :Cette recherche développe une nouvelle approche décentrée de la maladie ou de la personne malade et centrée sur l’aidant.

Depuis quelques années, les soins palliatifs pédiatriques (SPP) s’organisent aussi bien à travers des mesures politiques, avec la création d’équipes spécifiques, qu’à travers des formations centrées sur les particularités en pédiatrie. Nous avons souhaité d’évaluer dans quelles mesures ces évolutions sont reflétées dans les publications référencées sur ce sujet.

Inclusion in early clinical trials raises many questions from a practical but also from an ethical point of view. The aim of this work is to show that the inclusion outweighs the simple opening criterias of a trial. We highlight the benefit by including a paediatric palliative care team in these difficult discussions. (C) 2019 Published by Elsevier Masson SAS.

However, the Pediatric Palliative Care is organized both through political measures with the creation of specific teams, and through pediatric-specific training. We wanted to evaluate to what extent these evolutions are reflected in the publications referenced on this subject. (C) 2019 Elsevier Masson SAS. All rights reserved.

Our home care unit (HCU) developed the administration of IV chemotherapy at home for some pediatric oncologic patients.We conducted a retrospective monocentric analysis, leading to identify patients with at least one sequence of chemotherapy at home in 2015.Two hundred and forty four sequences of home chemotherapy have been administered in 2015. We identified two situations for home IV chemotherapy. Pediatric oncologist of day hospital prescribes the sequence. The chemotherapy is delivered at hospital for the first day. HCU takes over for the next days at home. For a sequence replacing a conventional hospitalization, the attending physician examines the patient, and confirm the clinical validation. The pediatric oncologist of HCU checks lab exams, and prescribes the chemotherapy. For both situations, IV chemotherapy is prepared by our hospital pharmacy, delivers at home or at day hospital, and HCU team manages home material and organizes hospitalization.This kind of organization allows setting up home IV CT for more and more patients. It allows to limit daily hospitalization for some patients living far from the hospital, and whose therapies lead to several hospitalizations.

Background/objective > Our home-care unit (HCU) is specialized for pediatric cancer patients and hos a strong palliative core activity. We believe that the introduction of home-core services can influence the place of palliative core and of death as well as the length of hospitalization. We aimed at describing characteristics and care course of patients treated in our HCU, and tried to identify some factors contributing to home care at the end of life. Dawn/methods > We conducted a retrospective, observational, monocentric study about patients in pediatric onco-hematology, treated at least one day in our home-care unit, who died between July 1st 2013 and December 31st 2015. Statistical analysis was descriptive and analytic. Results > A total of 74 patients known by our HCU died during study period. Eight were excluded. Forty-three out of 66 patients died at home. During the last 3 months of life, oncology patients have significantly less classical hospitalization, when compared to hematology patients. The implication of general physicians (GP) and nurses and information given to the family increase the possibility for home death. No significant association was found between ages at death, distance between home and hospital, other life conditions and place of death. Conclusions > Our HCU has a strong palliative care activity and a high rate of children dying at home. Good collaborations between our pediatric onco-hematology team and our HCU as well as between our HCU and caregivers optimize palliative care.

Notre service d'hospitalisation à domicile (HAD) est spécialisé pour les enfants atteints de cancer et possède une activité palliative importante. Cette étude décrit les caractéristiques des patients suivis en fin de vie par l'HAD, afin de comprendre les facteurs pouvant influencer le lieu de décès. Nous avons mené une étude observationnelle rétrospective monocentrique sur les patients pédiatriques d'onco-hématologie, traités au moins un jour en HAD lors des 3 derniers mois de vie, et décédés entre le 1er juillet 2013 et le 31 décembre 2015. L'analyse statistique était descriptive et analytique. Soixante-quatorze patients suivis en HAD sont décédés au cours de cette période, parmi lesquels 8 ont été exclus. Quarante-trois patients parmi ces 66 (65 %) sont décédés à domicile. Lors des 3 derniers mois de vie, les patients d'oncologie ont moins de jours d'hospitalisation conventionnelle que les patients d'hématologie. L'implication des médecins généralistes, des infirmières libérales et les informations délivrées aux familles étaient plus importantes dans le groupe des patients décédés à domicile. Aucune association significative n'a été retrouvée entre l'âge du patient, sa pathologie, l'éloignement du domicile par rapport à l'hôpital et le lieu de décès. Notre service d'HAD a une activité majeure en soins palliatifs et un nombre important de patients décède à domicile. Une collaboration efficiente entre l'équipe d'onco-hématologie et le service d'HAD, ainsi qu'entre l'HAD et les soignants libéraux permet d'optimiser les soins palliatifs. Our home-care unit (HCU) is specialized for pediatric cancer patients and has a strong palliative care activity. We believe that the introduction of home-care services can influence the place of palliative care and of death as well as the length of hospitalization. We aimed at describing characteristics and care course of patients treated in our HCU, and tried to identify some factors contributing to home care at the end of life. We conducted a retrospective, observational, monocentric study about patients in pediatric onco-hematology, treated at least one day in our home-care unit, who died between July 1st 2013 and December 31st 2015. Statistical analysis was descriptive and analytic. A total of 74 patients known by our HCU died during study period. Eight were excluded. Forty-three out of 66 patients died at home. During the last 3 months of life, oncology patients have significantly less classical hospitalization, when compared to hematology patients. The implication of general physicians (GP) and nurses and information given to the family increase the possibility for home death. No significant association was found between ages at death, distance between home and hospital, other life conditions and place of death. Our HCU has a strong palliative care activity and a high rate of children dying at home. Good collaborations between our pediatric onco-hematology team and our HCU as well as between our HCU and caregivers optimize palliative care.

Dans la grande majorité des situations cliniques d’enfants en soins palliatifs, et en particulier d’enfants en situation de handicap ou polyhandicap, de nombreux acteurs sont impliqués. Alors que chacun a son champ de compétence, celui de la famille est le plus difficile à faire exister et reconnaître. Dans cet article, nous voulons partager notre réflexion, avec un regard critique sur nous, soignants et en sortant du regard habituel sur les familles. Après le constat d’asymétrie des logiques de soignants et de la famille, nous développons les différentes compétences familiales et leurs évolutions dans le parcours long des soins palliatifs pédiatriques. Reconnaître cette compétence des familles favorise non seulement son développement, mais facilite la collaboration et la prise en charge complexe que sont les soins palliatifs d’enfants polyhandicapés.

Context. - The regional resource teams of pediatric palliative care, like any adult mobile palliative care team in France, have to realize an annual report including several indicators that are often imposed by the regional public health authorities. Our regional resource team of pediatric palliative care raised the question of the relevance and performance of the "active list'' (number of patients) as indicator of the clinical activity.Methodology. - All the situations met by our regional resource team of pediatric palliative between 2011 and 2012 were analyzed and then classified.Results. - Four levels of intervention were identified: The first level consists in answering the questions from the professionals: e.g. symptom management, ethical questions and issues, etc. At this level, the regional resource team of pediatric palliative does not meet the child nor his/her family. It often acts by specific interventions, such as telephone calls or meetings between teams. The second level corresponds to the intervention in collaboration with the specialized reference team. The regional resource team of pediatric palliative then meets the child and his family. The regional resource team of pediatric palliative provides support for professionals and the family on the questions of anticipation, clinical worsening, and/or ethical issues when realizing or omitting therapeutic acts. The hospital team remains the reference team. The third level involves the regional resource team of pediatric palliative in collaboration with the reference team but becomes progressively itself the reference team for the child, his family and other caregivers. This may occur in home-care based situations. This level includes that regional resource team of pediatric palliative often coordinates the home-care providers (nurses, general practitioner, etc.) and that its main activity is to support the families and the child. At this level, the regional resource team of pediatric palliative is called if needed as the first line team. Finally, the fourth level can be summed up as all situations for which the regional resource team of pediatric palliative is the only involved team, e.g. bereavement support.Conclusion. - The approach and the identification of the four levels describe more specifically the clinical activity of the regional resource teams of pediatric palliative in their various assumptions of responsibilities. Further on, it identifies more precisely the implication of all teams involved. Thinking in levels of implication is innovative and adjusted with clinical reality. The levels of intervention may change during the care pathway of each child. This tool for evaluation of the clinical activity finds an interest within our network of all regional resource teams of pediatric palliative. Perhaps its use could also be relevant for other palliative care networks or mobile teams. (C) 2017 Elsevier Masson SAS. All rights reserved.

Background:Clinicians, researchers and politicians are seeking to better assess caregiver's needs. Challenges exist in broadly implementing this so as to provide appropriate support. The aim of this review was to compile self-administered instruments for assessment of caregiver's needs that are deemed to be scientifically robust.Methods:The Medline database was searched for publications reporting self-administered instruments assessing caregiver's needs with acceptable psychometric properties. These instruments were analyzed in terms of the development context, target population, concept, purpose, structure, content and psychometric properties. The dimensions of the needs were listed and categorized.Results:A total of nine self-administered instruments were analyzed. They averaged 32 items, they were specifically developed for a targeted subpopulation of caregivers and dedicated to epidemiological research. Response devices were based on Likert scales. The main dimensions of the needs identified were 'Health and Care', 'Psychological - Emotional Support', 'Information-Knowledge', 'Social Life-Work-Finance'. None was specifically geared toward caregivers for the elderly, children or teenagers. In the absence of transcultural validation, no instrument was directly usable in Europe.Conclusions:Assessing caregivers' needs is a key part in providing caregivers with appropriate support. The development of self-administered instruments constitutes a complex field that is still underexplored at the international level; strict specifications with psychometric validation are essential. To be efficient, the instrument should be integrated in a larger process including: upstream, recognition, identification and assessment of the overall situation of the caregiver; and downstream, guidance, establishment and follow-up of a suitable action plan.

Objectives. - To identify palliative care practices in home care professionals taking care of children and teenagers at the end of their life and understand the difficulties.Method. - National multicentric and retrospective study conducted in 2015, addressed to all 309 French hospitals at home services and two focus groups.Results. - Eighty-nine responded (response rate: 29%). At the time of the survey, among 369 children hospitalized at home, 14% of them were at the end-of-life. More than two hospitals at home services out of five have at least one professional with paediatric expertise. Yet 35% of them sometimes refuse home based hospitalization for paediatric palliative care. When taking care of a child's end-of-life, 86% set up a formal recommendation document to the emergency services and 84% set up anticipated medical prescriptions, which were delivered in 60%. And 54% of the hospital at home services have already appealed to a regional resource team of pediatric palliative care. Focus groups met 14 professionals. According to them, the limits of home care did not in the presence of particular symptoms or in the technical care but were conditioned by the child's wishes and his relatives, carers the capacity (including emotional) anticipation, continuity of care and coordination of professionals.Conclusions. - Despite a consensus of home professionals the opportunity to accompany children at end-of-life at home, there is a diversity of practices and access to healthcare inequality. (C) 2016 Elsevier Masson SAS. All rights reserved.

INTRODUCTION:Our home care unit (HCU) developed the administration of IV chemotherapy at home for some pediatric oncologic patients.METHODS:We conducted a retrospective monocentric analysis, leading to identify patients with at least one sequence of chemotherapy at home in 2015.RESULTS:Two hundred and forty four sequences of home chemotherapy have been administered in 2015. We identified two situations for home IV chemotherapy. Pediatric oncologist of day hospital prescribes the sequence. The chemotherapy is delivered at hospital for the first day. HCU takes over for the next days at home. For a sequence replacing a conventional hospitalization, the attending physician examines the patient, and confirm the clinical validation. The pediatric oncologist of HCU checks lab exams, and prescribes the chemotherapy. For both situations, IV chemotherapy is prepared by our hospital pharmacy, delivers at home or at day hospital, and HCU team manages home material and organizes hospitalization.CONCLUSIONS:This kind of organization allows setting up home IV CT for more and more patients. It allows to limit daily hospitalization for some patients living far from the hospital, and whose therapies lead to several hospitalizations.

Purpose. - Approach the ways of acculturation of palliative care in nursing and medical teams by the regional resources teams of paediatric palliative care, identify their activities in supporting children and their families, describe their intervention sites, as well as highlight the problems encountered by professionals in these teams.Methods. - National retrospective study, conducted in 2015 among all the 22 regional resources teams of paediatric palliative care by self-administered questionnaire, in partnership with the Federation of regional resources teams of paediatric palliative care.Results. - Fifteen questionnaires were usable (68% response rate). The regional resources teams of paediatric palliative care are small, with a mean of 2.7 FTEs based on 5.1 different professionals, with a majority on part-time work. In 2014, 51% of all interventions were performed in collaboration with the hospital-based reference team of the child. Fifty-two percent of their activity concerned children with neurological diseases or multiple disabilities. The paediatric team's acculturation to the palliative care approach and the management of the sick child and his proxies occupied more than half of the working time (37% and 30%, respectively). The training of adult palliative care teams to the particular paediatric palliative care aspects corresponds to 11% of the overall activity of regional resources teams of paediatric palliative care. More than 20% of overall activity concerned training programs and research projects. Their in-hospitals activity, most often occurred in oncohaematology and least often in palliative care units and maternity. Nearly three quarters of all regional resources teams of paediatric palliative care considered to have few solicitation by sanitary and medico-social structures.Conclusion. - Regional resources teams of paediatric palliative care have a cross-regional activity with interhospital and city hospital activity, including medicosocial care structures. (C) 2016 Elsevier Masson SAS. All rights reserved.

Nearly 40% of children with Anaplastic Large cell lymphomas will relapse after a first-line strategy with short-pulse chemotherapy and reach a second remission in 30% to 60% with second line therapies including maintenance treatment with vinblastine or allogeneic hematopoietic stem-cell transplantation. The authors report a heavily pretreated case in second relapse who was maintained in third remission for 8 years with monthly vinblastine. He relapsed 16 weeks after discontinuation. This case demonstrates that monthly treatment with vinblastine may be sufficient to maintain a minimal disease. Oral compounds are now available and should be discussed in such situations.

Les soins a domicile en oncologie pediatrique et particulierement dans des situations palliatives sont encore relativement peu developpes. Nous essayons d’illustrer par un cas clinique l’interface, l’application et l’interpretation de la loi Leonetti dans ce champ de soins palliatifs pediatriques a domicile. Des reflexions autour de la notion de « futilite » et de « traitement deraisonnable » dans ce cas d’une chimiotherapie palliative et le questionnement autour des « directives anticipees » en pediatrie a travers la demarche de non-reanimation.