Comparison of clinical characteristics and healthcare resource use of pediatric chronic and non-chronic critically ill patients in intensive care units: a retrospective national registry study

Introduction: Chronic critically ill patients (CCI) in pediatric intensive care unit (PICU) are at risk of negative health outcomes, and account for a considerable amount of ICU resources. This study aimed to (a) describe the prevalence of CCI children, (b) compare their clinical characteristics and ICU resources use with non-CCI children, and (c) identify associated risk factors of CCI. Methods: A retrospective national registry study including 2015–2017 data from the eight Swiss PICUs of five tertiary and three regional hospitals, admitting a broad case-mix of medical and surgical patients, including pre- and full-term infants. CCI patients were identified using an adapted definition: PICU length of stay (LOS) ≥8 days and dependence on ≥1 PICU technology. Results: Out of the 12,375 PICU admissions, 982 (8%) were CCI children and compared to non-CCI children, they were younger (2.8 vs. 6.7 months), had more cardiac conditions (24% vs. 12%), and higher mortality rate (7% vs. 2%) (p < 0.001). Nursing workload was higher in the CCI compared to the non-CCI group (22 [17–27]; 21 [16–26] respectively p < 0.001). Factors associated with CCI were cardiac (aOR = 2.241) and neurological diagnosis (aOR = 2.062), surgery (aORs between 1.662 and 2.391), ventilation support (aOR = 2.278), high mortality risk (aOR = 1.074) and agitation (aOR = 1.867). Conclusion: the results confirm the clinical vulnerability and the complexity of care of CCI children as they were defined in our study. Early identification and adequate staffing is required to provide appropriate and good quality care

When parents face the death of their child: a nationwide cross-sectional survey of parental perspectives on their child's end-of life care.

BACKGROUND: Parents facing the death of their child have a strong need for compassionate professional support. Care services should be based on empirical evidence, be sensitive to the needs of the families concerned, take into account the heterogeneity within the medical field of paediatrics, and fit into the local health care system. We need to better understand the perspectives of parents facing the death of their child in order to guide further development and evaluation of specialised paediatric palliative and end-of-life (EOL) care services. METHODS: Questionnaire survey to assess the EOL care perspectives of a Swiss population-based sample of bereaved parents who had lost a child due to a cardiac, neurological or oncological condition, or during the neonatal period in the years 2011 or 2012. The parental perspective was assessed with a newly developed and tested instrument that was structured according to six evidence-based quality domains. Responses regarding parental experiences and perceived satisfaction are described. Differences between the four diagnostic groups are analysed using a generalized estimation equation to account for the dyadic data structure. RESULTS: Of 307 eligible families, 267 could be contacted and 135 (51%) consented to participate in this questionnaire survey. Our findings show positive parental experiences of their child's EOL care and high perceived satisfaction with the care their child received. Parents of a child with cancer rated their experiences highest in most of the six quality domains and reported the highest satisfaction with care. The lowest scores were mainly reported by parents from the neurology group, with the exception of the shared decision making domain, where parents of neonates reported significantly less positive experiences. CONCLUSIONS: Although positive in general, our study results suggest some areas for improvement. The integration of specialised paediatric palliative care has the potential to minimise lost opportunities to support and assist parents

Comparison of clinical characteristics and healthcare resource use of pediatric chronic and non-chronic critically ill patients in intensive care units: a retrospective national registry study

IntroductionChronic critically ill patients (CCI) in pediatric intensive care unit (PICU) are at risk of negative health outcomes, and account for a considerable amount of ICU resources. This study aimed to (a) describe the prevalence of CCI children, (b) compare their clinical characteristics and ICU resources use with non-CCI children, and (c) identify associated risk factors of CCI.MethodsA retrospective national registry study including 2015–2017 data from the eight Swiss PICUs of five tertiary and three regional hospitals, admitting a broad case-mix of medical and surgical patients, including pre- and full-term infants. CCI patients were identified using an adapted definition: PICU length of stay (LOS) ≥8 days and dependence on ≥1 PICU technology.ResultsOut of the 12,375 PICU admissions, 982 (8%) were CCI children and compared to non-CCI children, they were younger (2.8 vs. 6.7 months), had more cardiac conditions (24% vs. 12%), and higher mortality rate (7% vs. 2%) (p < 0.001). Nursing workload was higher in the CCI compared to the non-CCI group (22 [17–27]; 21 [16–26] respectively p < 0.001). Factors associated with CCI were cardiac (aOR = 2.241) and neurological diagnosis (aOR = 2.062), surgery (aORs between 1.662 and 2.391), ventilation support (aOR = 2.278), high mortality risk (aOR = 1.074) and agitation (aOR = 1.867).Conclusionthe results confirm the clinical vulnerability and the complexity of care of CCI children as they were defined in our study. Early identification and adequate staffing is required to provide appropriate and good quality care

Functional abdominal pain disorders and patient- and parent- reported outcomes in children with inflammatory bowel disease in remission

BACKGROUND: Chronic abdominal pain occurs frequently in pediatric patients with inflammatory bowel disease (IBD) in remission. AIMS: To assess the prevalence and factors associated with Functional Abdominal Pain Disorders among IBD children in remission (IBD-FAPD). METHODS: Patients with IBD for > 1 year, in clinical remission for ≥ 3 months were recruited from a National IBD network. IBD-FAPDs were assessed using the Rome III questionnaire criteria. Patient- or parent- reported outcomes were assessed. RESULTS: Among 102 included patients, 57 (56%) were boys, mean age (DS) was 15.0 (± 2.0) years and 75 (74%) had Crohn's disease. Twenty-two patients (22%) had at least one Functional Gastrointestinal Disorder among which 17 had at least one IBD-FAPD. Past severity of disease or treatments received and level of remission were not significantly associated with IBD-FAPD. Patients with IBD-FAPD reported more fatigue (peds-FACIT-F: 35.9 ± 9.8 vs. 43.0 ± 6.9, p = 0.01) and a lower HR-QoL (IMPACT III: 76.5 ± 9.6 vs. 81.6 ± 9.2, p = 0.04) than patients without FAPD, and their parents had higher levels of State and Trait anxiety than the other parents. CONCLUSIONS: Prevalence of IBD-FAPD was 17%. IBD-FAPD was not associated with past severity of disease, but with fatigue and lower HR-QoL

CHRONIC CRITICAL ILLNESS: CHILDREN' CARE CHARACTERISTICS AND FAMILIES' PSYCHOSOCIAL OUTCOMES AND NEEDS

Chronic critically ill (CCI) children in pediatric intensive care unit (PICU) are at risk of adverse health outcomes. They are highly exposed to life-sustaining technologies, and account for a considerable amount of PICU resources. When PICU hospitalization is prolonged or repeated, it can have a significant negative impact on the psychological health and the functioning of the whole family. There is a need for more evidence on CCI children's characteristics and resources use, as well as on family psychosocial health throughout a PICU hospitalization. This doctoral thesis aimed to address the lack of evidence in two studies. First, a national retrospective observational study was performed to describe the prevalence of CCI children, compare their clinical characteristics and PICU resources use with non-CCI children, and identify predictors of chronic critical illness. A national registry data including 12 375 patients' records from the eight Swiss PICUs were analyzed. PICU patients were identified as CCI children according to their PICU length of stay 8 days and dependence on 1 PICU technology. Prevalence rate of CCI children was 8%. Compared to non-CCI, CCI children were younger (6.7 vs 2.8 months), had more cardiac conditions (12% vs 24%), and higher mortality rate (2% vs 7%), respectively. Use of PICU technologies was significantly higher for the CCI group than for the non-CCI group, as well as nursing workload (Mdn=22 [IQR=17-27]; Mdn=21 [IQR=16-26] respectively, p<0.001). Cardiac and neurological diagnosis, surgical hospitalizations, need for respiratory support, high mortality risk, and agitation status were significantly associated with chronic critical illness (aORs between 1.07 and 2.28, p<0.001). Second, a prospective longitudinal study was conducted to evaluate and compare psychosocial outcomes and needs of CCI families during and after PICU hospitalization, and to identify predictors of poor family functioning. Data were collected during and after PICU hospitalization, in a convenience sample of CCI families from one of the eight PICUs in Switzerland, using several self-reported questionnaires. ln parallel, a qualitative descriptive study was performed to explore the specific psychosocial outcomes and needs of families. Data were collected after PICU hospitalization, in a purposive sample of CCI families selected from the quantitative sample, using semi-structured interviews. Then, based on quantitative and qualitative findings, convergent mixed-methods analyses were performed to identify convergence and divergence of CCI families' psychosocial outcomes and needs compared to PICU families. The study outcomes included family stress, PICU-related sources of stress, satisfaction of needs, family functioning, and perceived child's quality of life. A total of 199 mothers and fathers completed questionnaires, and 31 interviews with one or two parents were performed. Parental level of stress was high, with a median of 70 out of a maximum of 100 at the beginning of hospitalization [IQR=49-80], and remained unchanged at 71 one month after PICU discharge [IQR=40-80]. Parents described feeling on a roller coaster with an uninterrupted succession of negative and positive emotions. During PICU hospitalization, the sources of the higher stress scores were related to the parental raie (mean=3.2-3.3 [SD=1.1- 1.3]) and the child's appearance, behaviors and emotions (mean=2.8-2.9 [SD=0.8-0.9)) (maximum score=S). New sources of stress were identified over time and linked with family reorganization, social isolation and financial burden. Family satisfaction was high, while most unmet family needs were related to care coordination and the parental expertise. Scores on family functioning were low during the first days of PICU hospitalization (M=64 [SD=17)) and significantly lower after 30 days of hospitalization (M=55 [SD=17], p=0.002) (maximum score=100). Mothers reported more physical and emotional family dysfunction than fathers after PICU discharge. Pre-existing low child's quality of life and financial difficulties were associated with family dysfunction (coef=0.34, p<0.001; coef=-9.36, p=0.037, respectively). Numerous coping strategies developed by CCI families were highlighted, such as protection of their physical, psychological and social health, development of their empowerment, and the vision of a new future as family. These doctoral thesis findings highlight the importance of a) early identification of CCI children, b) recognition of additional challenges for CCI families, c) consideration of the child and family as a system, and d) needs of empowered CCI families. This thesis confirms the needs for implementing patient- and family-centered care approach, supported by family nursing skills and tools. -- Les enfants atteints d'une pathologie critique chronique (PCC) et admis dans une unité de soins intensifs pédiatriques (SIP) sont à haut risque d'évolutions défavorables. Ils sont fortement exposés aux technologies intensives et utilisent une part considérable des ressources des unités de SIP. Lorsque l'hospitalisation en SIP est prolongée ou répétée, elle peut avoir un impact négatif important sur la santé psychologique et le fonctionnement de toute la famille. Il est nécessaire d'approfondir les connaissances sur les caractéristiques cliniques des enfants PCC et sur leur utilisation des ressources de SIP, ainsi que sur la santé psychosociale de la famille, tout au long d'une hospitalisation en unité de SIP. Cette thèse de doctorat visait à pallier le manque d'évidences disponibles sur le sujet au travers de deux études. Premièrement, une étude nationale rétrospective observationnelle a été réalisée dans le but de mesurer la prévalence des enfants PCC, de comparer leurs caractéristiques cliniques et l'utilisation des ressources de SIP avec des enfants non-PCC, et d'identifier les facteurs associés à la pathologie critique chronique. Les données d'un registre national incluant 12'375 dossiers d'enfants provenant de huit unités de SIP ont été analysées. Les patients hospitalisés aux SIP étaient identifiés comme PCC lorsqu'ils avaient une durée de séjour 2:8 jours et une dépendance à 2:1 technologie intensive. Le taux de prévalence d'enfant PCC était de 8%. Par rapport aux enfants non-PCC, les enfants PCC étaient plus jeunes (6,7 vs 2,8 mois), présentaient plus de diagnostics cardiaques (12% vs 24%) et un taux de mortalité plus élevé (2% vs 7%), respectivement. L'utilisation des technologies intensives était significativement plus élevée dans le groupe PCC comparé au groupe non-PCC, ainsi que la charge de travail infirmière (médiane=22 [El=17-27]; médiane=21 [El=16-26] respectivement, p<0,001). Les diagnostics cardiaques et neurologiques, les hospitalisations chirurgicales, le besoin de soutien respiratoire, le risque de mortalité élevé et l'état d'agitation étaient associés à la pathologie critique chronique (aORs entre 1,07 et 2,28, p<0,001). Deuxièmement, une étude prospective longitudinale a été menée pour évaluer et comparer les résultats de santé psychosociale et les besoins des familles PCC pendant et après l'hospitalisation en SIP, et d'identifier les facteurs prédictifs à un meilleur fonctionnement familial. Les données ont été recueillies pendant et après l'hospitalisation en SIP, auprès d'un échantillon de convenance de familles PCC issues de l'une des huit unités de SIP de Suisse, sur la base de plusieurs questionnaires validés. Parallèlement, une étude qualitative descriptive a été réalisée afin d'explorer les spécificités de la santé psychosociale et des besoins des familles PCC. Les données ont été collectées après l'hospitalisation en SIP, auprès d'un échantillon raisonné de familles PCC sélectionnées à partir de l'échantillon quantitatif, au travers d'entretiens semi-structurés. Finalement, sur la base des résultats quantitatifs et qualitatifs, des analyses issues d'une méthode convergente mixte ont été réalisées afin d'identifier la convergence et la divergence des résultats de santé psychosociale et des besoins des familles PCC par rapport à ceux des familles non-PCC. Les outcomes des études comprenaient le stress familial, les sources de stress liées à l'hospitalisation, la satisfaction des besoins, le fonctionnement de la famille et la qualité de vie perçue de l'enfant. Au total, 199 mères et pères ont rempli des questionnaires, et 31 entretiens avec un ou deux parents ont été réalisées. Le niveau de stress des parents était élevé avec une médiane à 70 sur 100 en début d'hospitalisation [El=49-80] et maintenu à 71 un mois après la sortie de l'unité des SIP [El =40-80]. Les parents ont décrit le sentiment d'être sur des montagnes russes, avec une succession ininterrompue d'émotions négatives et positives. Pendant l'hospitalisation en unité de SIP, les sources qui provoquaient le stress le plus élevé étaient l'altération du rôle parental (moyenne=3,2-3,3 [ET=1,1-1,3]) et l'apparence physique, les comportements et les émotions de l'enfant (moyenne=2,8-2,9 [ER=0,8-0,9]) (score maximum=5). De nouvelles sources de stress ont été identifiées, apparaissant au fur et à mesure de l'hospitalisation et liées à la réorganisation familiale, l'isolement social et la charge financière. La plupart des besoins non satisfaits des familles étaient liés à la mauvaise coordination des soins et au manque de prise en compte du rôle et de l'expertise parentale. Le fonctionnement familial était fragile dès les premiers jours de l'hospitalisation (moyenne=64 [ET=17]) et significativement moins bon encore après 30 jours d'hospitalisation (moyenne=55 [ET=17], p=0,002) (score maximum=100). Les mères démontraient plus de dysfonctionnement physique et émotionnel que les pères après la sortie des SIP. Une qualité de vie de l'enfant déjà altérée avant l'hospitalisation et les difficultés financières étaient associés au dysfonctionnement familial (coef=0,34, p<0,001; coef=-9,36, p=0,037, respectivement). De nombreuses stratégies d'adaptation développées par les familles PCC ont été mises en évidence, telles que la protection de leur santé physique, psychologique et sociale, le développement de leur autonomie et la vision d'un nouvel avenir en tant que famille. Les résultats de cette thèse de doctorat soulignent l'importance a) de l'identification précoce des enfants atteints de PCC, b) de la reconnaissance des défis supplémentaires pour les familles PCC, c) de la prise en compte de l'enfant et de la famille en tant que système, et d) de la nécessité de familles avec un niveau élevé d'empowerment. Cette thèse confirme le besoin d'implanter une approche de soins centrée sur le patient et la famille, soutenue par des compétences et des outils de soins à la famille

Effectiveness and family experiences of interventions promoting partnerships between families and pediatric and neonatal intensive care units: a mixed methods systematic review protocol

This mixed methods systematic review examines the effectiveness and family experiences of interventions that promote partnerships between parents and the multidisciplinary health care team in pediatric and neonatal intensive care units. The hospitalization of a child or infant in an intensive care unit can have considerable negative effects on them and their family. Family members can experience increased stress, anxiety or depression and detrimental impacts on quality of life and family functioning. Interventions that promote families as health care partners may improve negative outcomes arising from intensive care hospitalization. The review will include family members of pediatric or neonatal patients hospitalized in an intensive care unit. It will focus on interventions that promote partnership between families and multidisciplinary health care teams in pediatric and neonatal intensive care units and the family's experiences of these interventions. The outcomes of interest are stress, anxiety, depression, quality of life, family functioning, family empowerment or satisfaction with family-centered care. The proposed review will follow the JBI methodology for convergent segregated mixed methods systematic reviews. It will search for published and unpublished studies from eight different sources. Studies will be reviewed by title and abstract and potentially eligible studies will have full text retrieved for further review. Studies meeting the inclusion criteria will be assessed on methodological quality and the data will be extracted. Separate quantitative and qualitative analysis and synthesis will be performed and an overall analysis will be presented. PROSPERO CRD42019137834

Relative contribution of NF-kappaB and AP-1 in the modulation by curcumin and pyrrolidine dithiocarbamate of the UVB-induced cytokine expression by keratinocytes.

Following ultraviolet B treatment, expression of tumour necrosis factor (TNF)-alpha, interleukin (IL)-6, and IL-8 by NCTC 2544 keratinocyte cell line was significantly enhanced both at the mRNA and protein level. The UVB also increased the IL-10 steady-state mRNAs level. Radiation-induced cytokine overexpression was accompanied by NF-kappaB and AP-1 transcription factors activation as assessed by electrophoretic mobility shift assays. To investigate in keratinocytes the relative contributions of those transcription factors on UVB-mediated cytokine induction, cell cultures were supplemented with curcumin and pyrrolidine dithiocarbamate (PDTC), agents known to modulate NF-kappaB and AP-1 activation. Both compounds significantly inhibited NF-kappaB activation by UVB, but AP-1 activation was unaffected by curcumin while PDTC further stimulated its activation. In parallel, curcumin decreased, in a dose-dependent manner, the UVB-mediated overexpression of all three pro-inflammatory cytokines and only exhibited a moderate enhancing influence on IL-10 expression. In turn, the inhibitory influence of PDTC on radiation-induced TNF-alpha and IL-6 expression is much lower and in contrast to curcumin, it stimulated IL-8. Taken together, our data indicated that control of proinflammatory cytokine expression induced by UVB in keratinocytes required the selective inhibition of NF-kappaB activation. Simultaneous AP-1 activation by agents like PDTC might, partially or totally, depending on cytokine-type, counterbalanced the inhibitory effect exerted on UVB-induced NF-kappaB activation in keratinocytes

Analyse du contexte clinique dans le développement et l'implantation d'une intervention de soutien pour les familles de patients atteints de lésions cérébrales acquises : une étude qualitative

Introduction: Acquired brain injuries (ABI) are among the leading causes of disability in adults. Supporting the families of patients with ABI is part of good practice, but this is not systematic in Switzerland. Preceding the implementation of a new intervention, an analysis of the contextual factors was carried out. Objectives: The objectives of this study were to describe the perspectives of interdisciplinary management teams concerning the support of these families and to explore the contextual resources and obstacles of the intervention. Methods: A descriptive qualitative research was conducted in a clinical neurosciences department of a tertiary reference hospital. Semi-structured interviews were conducted with a targeted sample of 8 care managers, following an interview guide based on the Calgary Models of Family Assessment and Intervention. Data were analyzed using the inductive and deductive content analysis method. Results: Four main categories of interrelated systems (family system, care system, environment and collaboration) and 15 subcategories emerged from the analysis. Interprofessional collaboration and characteristics of the work environment were two key aspects for participants. Discussion and conclusion: Participants felt that current care does not adequately consider families nor integrate them sufficiently. Concrete perspectives for improvement such as the systematic and structured integration of families from the acute phase of hospitalization, as well as the development of interprofessional collaboration are recommended to support families of individuals with ABI.Introduction : Les lésions cérébrales acquises (LCA) sont parmi les principales causes d’invalidité chez les adultes. Soutenir les familles des patients atteints de LCA fait partie des bonnes pratiques, mais cela n’est pas systématique en Suisse. En prévision de l’implantation d’une nouvelle intervention familiale, une analyse des facteurs contextuels a été effectuée. Objectifs : Cette étude avait pour objectifs de décrire les perspectives des cadres interdisciplinaires quant à l’accompagnement de ces familles et d’explorer les ressources ainsi que les obstacles liés au contexte de l’intervention. Méthodes : Une recherche qualitative descriptive a été conduite dans un département de neurosciences cliniques d’un hôpital de référence tertiaire. Des entrevues semi-structurées ont été menées auprès d’un échantillon ciblé de 8 cadres de soins, en suivant un guide d’entretien basé sur les Modèles de Calgary d’évaluation et d’intervention familiales. Les données ont été analysées selon la méthode d’analyse de contenu inductive et déductive. Résultats : Quatre catégories principales de systèmes inter reliés (système familial, système de soins, environnement et collaboration) et 15 sous-catégories ont émergées de l’analyse. La collaboration interprofessionnelle et les caractéristiques de l’environnement de travail étaient deux aspects importants pour les participants. Discussion et conclusion : Selon les participants, les soins actuels ne considèrent pas suffisamment les familles et ne les intègrent pas de manière satisfaisante. Des pistes d’amélioration concrètes comme l’intégration systématique et structurée des familles dès la phase aiguë d’hospitalisation, ainsi que le développement de la collaboration interprofessionnelle, sont recommandées pour soutenir les familles de patients atteints de LCA