Building Bridges, Paediatric Palliative Care in Belgium: A secondary data analysis of annual paediatric liaison team reports from 2010 to 2014.

BACKGROUND: Although continuity of care in paediatric palliative care (PPC) is considered to be an essential element of quality of care, it's implementation is challenging. In Belgium, five paediatric liaison teams (PLTs) deliver palliative care. A Royal Decree issued in 2010 provides the legal framework that defines the PLTs' missions, as ensuring continuity of curative and palliative care between the hospital and home for children diagnosed with life-limiting conditions. This national study describes how PLTs ensure continuity of care by describing their activities and the characteristics of the children they cared for from 2010 to 2014. METHODS: Thematic analysis of open-ended questions was performed and descriptive statistics of aggregated data issued from annual reports, collected by the Belgian Ministry of Public Health through the Cancer Plan was used. A review panel of PLT members discussed the results and contributed to their interpretation. RESULTS: Between 2010 and 2014, 3607 children and young adults (0-21 years) were cared for by the 5 Belgian PLTs (mean of 721/per year). Of these children, 50% were diagnosed with an oncological disease, 27% with a neurological or metabolic disease. Four hundred and twenty eight (428) children had died. For 51% of them, death took place at home. PLT activities include coordination; communication; curative and palliative care; education; research and fundraising. Different perceptions of what constitutes a palliative stage, heterogeneity in reporting diagnosis and the current lack of specific valid indicators to report PPC activities were found. CONCLUSION: PLTs are offering highly individualised, flexible and integrated care from diagnosis to bereavement in all care settings. Improvements in data registration and implementation of outcome measures are foreseen.

Undiagnosed Autism Spectrum Disorder in a Child With Chronic Pain: A Case Report.

The literature acknowledges the presence of psychiatric comorbidities in pediatric chronic pain populations. Few studies have focused on comorbidity with autism spectrum disorders. We describe the case of a 10-year-old patient at the onset of his care by the chronic pain team. This boy had been experiencing refractory multifocal chronic pain for three years and had undergone multiple medical examinations that had not identified the cause of the pain or provided sufficient pain relief. During our consultations, the behavioral peculiarities (averted gaze, inhibition), the atypical description of this boy's pain (pain in the hair), and sensory peculiarities (intolerance to noise) led us to suspect an autism spectrum disorder. A multidisciplinary approach, including a thorough developmental history and evaluation by an autism resource center, confirmed this suspicion. The diagnosis of an underlying autism spectrum disorder allowed us to guide our management by integrating the specific sensory aspects of this boy. Concurrently, we facilitated the family's better understanding of the young boy's issues and addressed his social and communication difficulties. Through multidisciplinary care and the integration of these various aspects, our patient's clinical situation improved. Multidisciplinary management is essential in chronic pain teams.

[Crossed perspectives on pediatrics to adult health care transition in Belgium]. / Regards croisés sur la transition de la médecine pédiatrique à la médecine pour adultes en Belgique.

In Belgium, there is not yet a standardized procedure for supporting the transition of patients with chronic diseases from pediatrics to adult health care. However, the field increasingly calls for the development of multidisciplinary landmarks. By crossing perspectives of a pediatrician, two psychologists and an ethicist, we propose the key elements of a successful transition: 1. Start preparing for the transition early; 2. Promote the patient's knowledge, know-how and interpersonal skills; 3. Improve continuity of care and collaboration between patient, family, healthcare teams, patient associations and families; 4. Support parents; 5. Improve the skills of healthcare teams in the specificities of adolescent medicine; 6. Individualize the transition, respecting each person's pace and uniqueness; 7. Develop an interdisciplinary approach of the transition; 8. Develop collaboration with public authorities, national and international experts; 9. Develop research on this emerging field of study.

Title: Regards croisés sur la transition de la médecine pédiatrique à la médecine pour adultes en Belgique. Abstract: 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.

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

BACKGROUND: 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.

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

BACKGROUND: 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. METHODS: 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. RESULTS: 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. CONCLUSION: 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.

Face and Content Validity, Acceptability, and Feasibility of the Adapted Version of the Children's Palliative Outcome Scale: A Qualitative Pilot Study.

Objective: To assess the face and content validity, acceptability and feasibility of a French version of the Children's Palliative Outcome Scale (CPOS). Background: Instruments in French used to measure outcomes in pediatric palliative care are lacking. Methods: After forward-backward translation of the 12-item English CPOS to French, we conducted a qualitative pilot study. During semi structured interviews among children and parents, we used the CPOS, the Schedule for the Evaluation of Individual Quality of Life interview guide (SEIQoL) and the Quality of Life in Life-threatening Illness-Family Carer questionnaire (QOLLTI-F), in addition to three expert meetings with PLTs. Results: Fourteen children and adolescents (8-18 years) with life-limiting or life-threatening conditions cared for at home, in hospital or in respite care services, 19 parents, and 9 members of 4 pediatric liaison teams (PLTs) providing palliative care in a Belgian francophone region were included in the study. No families refused to participate. All children with verbal capacities chose to be interviewed in the presence of their parents and a PLT member. The children valued being given the opportunity to share their experiences. New QOL dimensions pertaining to social, emotional, and administrative health-care related issues were added to the original version of the 12-item CPOS, leading to a 22-item CPOS-2. Discussion: The CPOS-2 was perceived as relevant and easy to use by the principal stakeholders. Our study paves the way for a large-scale field study assessing its psychometric characteristics and its implementation in routine clinical care.

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.

Value of MR imaging of the brain in children with hypoxic coma.

BACKGROUND AND PURPOSE: The contribution of MR imaging to identify hypoxic-ischemic injuries has been studied mostly in neonates or adults. The purpose of this study was to describe the MR imaging findings of toddlers and older children with hypoxic coma and to analyze the prognostic value of an MR imaging scoring system. METHODS: The conditions of 40 children with hypoxic coma (age range, 6 weeks to 18 years) were clinically graded according to the pediatric risk of mortality score, and MR imaging studies were performed. Sixty-four MR imaging studies were distributed in five categories according to their timing relative to the hypoxic event: days 1 through 3, 4-7, 8-15, 16-50, and after day 50. These were evaluated retrospectively by using an eight-point scoring system based on two lesion categories assessing watershed areas and basal ganglia involvement, including signal intensity and morphologic features with respect to maturation-related norms. Two age groups (< or =1 year and >1 year) were considered. The surviving children were grouped according to neurologic outcome. RESULTS: The occurrence of watershed areas or basal ganglia involvement was not significantly different in association with age. Sixteen children died. Twelve children had moderate to severe sequelae resulting from neurodevelopmental disabilities, and 12 had good neurologic outcomes. There was no correlation between pediatric risk of mortality score and neurologic evolution. There was a strong correlation between first MR imaging score (P <.001) and neurologic outcome. The sensitivity of the first MR imaging score was high (96%), even when obtained during the first 3 days, with a specificity of 50% and a positive predictive value of 82%. Six patients with definite abnormal MR imaging findings experienced good neurologic outcomes. CONCLUSION: The MR imaging scoring system proposed in this study can be used to establish an early prognosis in a significant proportion of children with hypoxic coma. It is helpful, even during the first 3 days after the event. However, some patients with definite abnormal MR imaging findings may experience good neurologic evolution.

Predictive value of electrophysiology in children with hypoxic coma.

Assessment of prognosis of children in hypoxic coma is difficult. The value of clinical evaluation is often limited. The usefulness of electrophysiologic tests has been documented mostly in adults and neonates and in cases of traumatic coma. We reviewed retrospectively 39 consecutive children with nontraumatic hypoxic coma to assess the prognostic value of EEG, visual, and auditory evoked potentials. Correlation between electrophysiology and neurologic outcome after mean follow-up period of 30 months was significant (r(s) = 0.6, P < 0.001). In contrast there was no correlation between Pediatric Risk of Mortality score (PRISM) and outcome (r(s) = -0.42, P = 0.8). Combining magnetic resonance imaging with electrophysiology further enhanced their prognostic value (r(s) = 0.69, P < 0.001). Neuroimaging was highly sensitive but less specific, and electrophysiologic tests were highly specific but less sensitive. We conclude that early electrophysiology can contribute to predicting outcome in pediatric hypoxic coma.

Post-cardiac Arrest Syndrome in Children.

Although sustained return of spontaneous circulation (ROSC) can be initially established after resuscitation in children, many of the children do not survive to discharge because they developped a post cardiac arrest syndrome. The post-cardiac arrest syndrome includes systemic ischaemia/reperfusion response, post-cardiac arrest brain injury, postcardiac arrest myocardial dysfunction, and persistent precipitating pathology. The main cause of death after ROSC in children is brain injury. Physiopathology and management are reviewed in regards of pediatric specificities. Management according to ABCDE includes airway and ventilation management, oxygen therapy, hemodynamic management with early goal directed therapy and protection of the brain against secondary injury by therapeutic hypothermia, management of seizures and control of glycemia.

Safety and usefulness of invasive arterial blood pressure monitoring in purpura fulminans resuscitation.

BACKGROUND: Invasive blood pressure (BP) monitoring (IBPM) is recommended in the treatment of fluid-refractory septic shock, but has been suspected of inducing distal ischemia in children with purpura fulminans (PF). The aim of the study was to determine if IBPM increases the risk of limb and skin necrosis and alters outcome of children with PF. MATERIAL/METHODS: Children admitted with PF and suspected meningococcal sepsis to two PICUs were retrospectively studied. BP was invasively monitored in one unit (arterial catheter: AC group), but not in the second (controls). Treatment was otherwise in accordance with recent guidelines. Children from the two units were matched according to age and PRISM score value. Mortality and limb or skin necrosis rates were compared and catheter-related complications were analyzed. RESULTS: Among 156 children (1996-2004), 46 from each unit (median age: 25 months, median PRISM value: 19) could be matched. The mortality rate was 19.5% in the AC group and 21.7% in the control group (p=0.8). Nine children (6 survivors) in the AC group and 9 (8 survivors) of the controls had distal necroses (p=1). Fifty-three ACs were inserted in the AC-group children. Catheter-related complications were three hemorrhages or hematomas, one local thrombosis, and six transient distal ischemia; there were no major catheter-related complications. Distal necrosis incidence was not increased on limbs where catheters were inserted. CONCLUSIONS: In this series of children with PF and suspected meningococcal sepsis, BP was monitored by arterial catheter in one unit; this did not affect limb and skin necrosis and mortality rates.