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

Long-Term Effects of Haematopoietic Stem Cell Transplantation after Pediatric Cancer: A Qualitative Analysis of Life Experiences and Adaptation Strategies

Haematopoietic stem cell transplantation (HSCT) improves the survival rate of children and adolescents with malignant and non-malignant conditions; however, the physical, psychological and social burden of such a procedure is considerable both during and after treatment. The present qualitative study investigated the long-term effects of HSCT after pediatric cancer. Thirty adolescent and young adult (AYA) survivors (Mage = 23.61 years, SD = 5.21) participated in individual interviews and were invited to speak about their life experiences following their treatment and strategies they use to deal with their past medical experiences and the long-term sequelae. Our results showed the presence of ongoing physical and psychosocial consequences of their past illness and its treatments with wide ranging psychosocial impacts, such as affected self-image, social withdrawal, sense of lack of choice, and need for specific attention. Different strategies were reported to overcome these consequences, such as talking about illness, giving a sense to their past medical experiences, and developing meaningful social relationships. Clinical and research implications are also discussed

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

Maladie chronique, adolescence et risque de non-adhésion : un enjeu pour l'éducation des patients ! Le cas des adolescents transplanté

La non-adhésion au traitement, appelée également non-compliance, voire mauvaise observance thérapeutique 2, figure parmi les enjeux majeurs de santé publique. . En effet, la non-adhésion aux prescriptions médicales a souvent des conséquences importantes, en termes de morbidité, voire de mortalité, pour les personnes malades. Elle engendre par ailleurs des coûts élevés, qui sont supportés par les systèmes de santé. Qualifiée parfois « d’échec ou de démission thérapeutique » par les soignants, la non-adhésion représente pour ces derniers une source de préoccupation importante. Si la non-adhésion concerne des patients de tous les âges, c’est à l’adolescence qu’elle semble la plus fréquente et que les problèmes, du fait de l’intrication des processus identitaires et d’autonomisation dans toutes les sphères de la vie de l’adolescent, sont les plus complexes. Alors que ces deux dernières décennies sont marquées par des avancées technologiques sans précédent (transplantation d’organes, guérison de certains types de cancer, apparition de traitements efficaces et d’outils de surveillance dans le cadre de maladies métabolique, etc.), les espoirs et progrès thérapeutiques continuent de se heurter aux défis personnels et interpersonnels que pose la question de l’adhésion au traitement chez les adolescents vivant avec une maladie chronique. (Alvin et al., 2003). Le présent dossier technique se propose d’identifier les différentes composantes qui entrent en jeu dans le processus d’adhésion ou de non-adhésion thérapeutique chez les adolescents. Notre revue de littérature s’est intéressée plus particulièrement au cas des adolescents transplantés. Le dossier se termine par des recommandations pour la pratiques, visant à permettre aux soignants d’adapter leurs pratiques aux besoins que rencontrent les adolescents dans la période de transition d’un service pédiatrique vers un service de soins pour adultes

Enfants : mieux vivre avec une maladie ou un handicap

L'acquisition de compétences psychosociales, en particulier l'estime de soi, par l'enfant malade ou handicapé, relève d'une responsabilité partagée. Tout en nommant les difficultés de l'enfant, il est important de porter sur lui un regard qui lui signifie ses possibilités. Les compétences psychosociales peuvent faire l'objet d'interventions éducatives, dans les différents milieux de vie de l'enfant, qui sont d'autant plus efficaces qu'il n'y a pas de rupture de communication ou de conflit d'objectifs entre les différents intervenants. Toute intervention devrait être précédée d'un recueil d'information sur ce que vit l'enfant, ce qu'il sait et ce qu'il désire