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Objectives Due to their medical and technology dependence, families of children with medical complexity (CMC) have significant costs associated with care. Financial impact on families in general have been described, but detailed exploration of expenses in specific categories has not been systematically explored. Our objective was to describe out-of-pocket (OOP) expenses incurred by caregivers of CMC and to determine factors associated with increased expenditures. Methods This is a secondary observational analysis of data primary caregiver-reported OOP expenses as part of a randomized control trial conducted in Ontario, Canada. Caregivers completed questionnaires reporting OOP costs. Descriptive statistics were utilized to report OOP expenses and a linear regression model was conducted. Results 107 primary caregivers of CMC were included. The median (IQR) age of participants was 34.5 years (30.5 to 40.5) and 83.2% identified as the mother. The majority were married or common-law (86.9%) and 50.5% were employed. The participant's children [median (IQR) age 4.5 (2.2 to 9.7); 57.9% male] most commonly had a neurological/neuromuscular primary diagnosis (46.1%) and 88% utilized medical technology. Total OOP expenses were $8,639 CDN annually (IQR = $4,661 to $31,326) with substantial expenses related to childcare/homemaking, travel to appointments, hospitalizations, and device costs. No factors associated with greater likelihood of OOP expenses were identified. A P-value of <0.05 was considered significant. Conclusion Caregivers of CMC incur significant OOP expenses related to the care of their children resulting in financial burden. Future exploration of the financial impact on caregiver productivity, employment, and identification of resources to mitigate OOP expenses will be important for this patient population. [ABSTRACT FROM AUTHOR]

Background There are limited data on the viral dynamics of severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) in children. Understanding viral load changes over the course of illness and duration of viral shedding may provide insight into transmission dynamics to inform public health and infection-control decisions. Methods We conducted a prospective cohort study of children aged 18 years and younger with polymerase chain reaction–confirmed SARS-CoV-2 between 1 February 2022 and 14 March 2022. SARS-CoV-2 testing occurred on daily samples for 10 days; a subset of participants completed daily rapid antigen tests (RATs). Viral RNA trajectories were described in relation to symptom onset and resolution. The associations between both time since symptom onset/resolution and non-infectious viral load were evaluated using a Cox proportional hazards model. Results Among 101 children aged 2 to 17 years, the median time to study-defined non-infectious viral load was 5 days post–symptom onset, with 75% meeting this threshold by 7 days and 90% by 10 days. On the day of and day after symptom resolution, 43 (49%) and 52 (60%) of 87 had met the non-infectious thresholds, respectively. Of the 50 participants completing a RAT, positivity at symptom onset and on the day after symptom onset was 67% (16/24) and 75% (14/20). On the first day where the non-infectious threshold was met, 61% (n = 27/44) of participant RAT results were positive. Conclusions Children often met the study-defined non-infectiousness threshold on the day after symptom resolution. The RATs were often negative early in the course of illness and should not be relied on to exclude infection. Clinical Trials Registration. clinicaltrials.org; NCT05240183. [ABSTRACT FROM AUTHOR]

Les symptômes cliniques attribués au reflux gastro-œsophagien pathologique chez les nourrissons nés à terme et en santé sont non spécifiques et rappellent des comportements adaptés à l'âge. Le présent point de pratique analyse les données probantes sur la prise en charge médicale recommandée de cette affection courante. Les recommandations à jour en vue de la prise en charge de ce type de reflux comprennent les modifications à l'alimentation, telles que l'épaississement des aliments ou l'évitement des protéines du lait de vache. Les données probantes à l'égard d'une prise en charge pharmacologique, y compris les traitements antiacides ou les agents procinétiques, sont limitées et démontrent que leurs risques sont souvent supérieurs à leurs éventuels avantages en raison des importantes préoccupations liées à l'innocuité et aux effets secondaires. Les traitements antiacides ne doivent pas être utilisés systématiquement chez les nourrissons présentant un reflux gastro-œsophagien pathologique. Ils sont plus susceptibles d'être utiles pour soigner des symptômes évocateurs d'une œsophagite érosive. Les données probantes sur la prise en charge des symptômes attribués à ce type de reflux chez les nourrissons de moins d'un an qui sont nés à terme et sont autrement en santé sont exposées, et la surprescription de médicaments est déconseillée dans cette population. Les conseils préventifs sur la résolution naturelle des symptômes de reflux sont recommandés. [ABSTRACT FROM AUTHOR]

Clinical symptoms attributed to gastro-esophageal reflux disease (GERD) in healthy term infants are non-specific and overlap with age-appropriate behaviours. This practice point reviews the evidence for medically recommended management of this common condition. Current recommendations to manage GERD include feeding modifications such as thickening feeds or avoiding cow's milk protein. There is limited evidence for pharmacological management, including acid suppressive therapy or prokinetic agents, with the risks of such treatments often outweighing possible benefits due to significant safety and side effect concerns. Acid-suppressive therapy should not be routinely used for infants with GERD and is most likely to be useful in the context of symptoms that suggest erosive esophagitis. Evidence for managing symptoms attributed to GERD in otherwise healthy term infants less than 1 year of age is presented, and the over-prescription of medications in this population is discouraged. Anticipatory guidance regarding the natural resolution of reflux symptoms is recommended. [ABSTRACT FROM AUTHOR]

Paediatric health care providers (HCPs) play an important role in optimizing bone health. Early intervention is essential to maximize the accrual of peak bone mass in adolescence and young adulthood and to reduce osteoporosis and fracture risk later in life. Children and adolescents with chronic health conditions may have several risk factors for poor bone health, including underlying inflammatory conditions, reduced weight-bearing activity, delayed puberty, and inadequate intake of calcium and vitamin D. Some medications—particularly glucocorticoids—can compromise bone mass and place a child at risk for fragility fractures. This practice point describes a targeted approach to identifying bone health risk factors in children and youth with chronic health conditions, highlights office initiatives aimed at optimizing bone mass accrual, and links HCPs to useful web-based tools and medical references. Indications for referral to a bone health specialist and bone-specific pharmacotherapeutic interventions are also reviewed. [ABSTRACT FROM AUTHOR]

Les professionnels de la santé des enfants jouent un rôle important dans l'optimisation de la santé osseuse. Il est essentiel d'intervenir rapidement pour maximiser le pic de masse osseuse à l'adolescence et au début de l'âge adulte et d'ainsi réduire le risque d'ostéoporose et de fractures plus tard dans la vie. Les enfants et les adolescents ayant une affection chronique peuvent présenter plusieurs facteurs de risque de mauvaise santé osseuse, notamment des maladies inflammatoires sous-jacentes, des activités avec mise en charge limitées, un retard pubertaire et un apport insuffisant de calcium et de vitamine D. Certains médicaments, et particulièrement les glucocorticoïdes, peuvent compromettre la masse osseuse et exposer l'enfant à un risque de fractures de fragilisation. Le présent point de pratique décrit une approche ciblée pour déterminer les facteurs de risque liés à la santé osseuse chez les enfants et les adolescents ayant une affection chronique, expose les mesures à prendre en cabinet pour optimiser l'acquisition de la masse osseuse et propose des outils en ligne utiles et des références médicales à l'intention des professionnels de la santé des enfants. Les indications pour diriger les patients vers un spécialiste de la santé osseuse et pour procéder à des interventions pharmacologiques visant les os sont également abordées. [ABSTRACT FROM AUTHOR]

Background and Objectives Children with medical complexity (CMC) are defined by complex, chronic multi-system disease with significant medical fragility. Limited research exists on dental care in CMC, which is an important part of oral health and overall health. Objectives of this study were to (1) determine the frequency and type of dental visits at a tertiary paediatric hospital of all CMC between 2015 and 2020 and (2) identify the factors associated with dental visits. Methods A retrospective chart review of the electronic records of CMC who were seen at a paediatric hospital from 2015 to 2020 was completed. The number and type of dental visits, demographic and clinical information were reviewed. Poisson regression models were used to test the association between the outcome (number of dental visits) and potential factors associated with receiving dental care. Results Four hundred and eighty-seven CMC (mean age=7.3 ± 4.6 years, 43.7% female) were included in this study. CMC were seen by dentists at the hospital 4.4 ± 3.8 times since 2015, which is approximately once per year over a 5-year period. Dental visits were mostly preventative (66.4% of all visits). CMC had more dental visits if they had dental care funding compared to no funding if they were living in a community with a population >100,000 people and if they were being followed by a greater number of sub-specialists. Conclusions This study highlights the importance of funding, access to paediatric dental specialists, and care coordination support to improve access to dental care for CMC to optimize oral health. [ABSTRACT FROM AUTHOR]

Children with medical complexity (CMC) have extremely high health care needs. Given their chronic complex diagnoses and involvement of multiple care providers, they are often over medicalized and seen as a list of diagnoses rather than as a child. Parents of CMC are extraordinary caregivers and advocates for their children. Parental values and perspectives are critical drivers of medical decision making, therefore highlighting the importance of collaboration between all members of the medical team. For health care providers (HCPs) to holistically guide and support families, an all encompassing, big picture understanding of CMC and their family is needed, and care maps are one such vehicle to provide this insight. Care maps are a parent-created tool that can be used to provide a holistic view of the child and demonstrate the complexity of life and interrelatedness of services for CMC. Previous research has shown that care maps have been used as a resource to promote parental reflection and identify parental priorities of care. Promotion of care maps by HCPs as a valuable tool in understanding the child and family's goals may help improve holistic understanding and promote collaborative care. [ABSTRACT FROM AUTHOR]

Objectives Parents of children with medical complexity are often expected to implement complicated plans of care, such as enteral tube feeding, to support the health of their child. Enteral feeding can have psychosocial implications for the parent, child, and family. Blenderized tube feeding (BTF) refers to the administration of pureed food and drinks through a feeding tube. Little is known regarding parents' experiences with BTF. Therefore, the purpose of this qualitative study was to understand the lived experience of BTF from the parent's perspective. Methods This qualitative study was a grounded theory analysis utilizing semi-structured interviews of parents who provided at least 50% of their child's diet through BTF. Participants were recruited using purposive sampling from the Complex Care Program at a tertiary care paediatric centre. Interviews were conducted until thematic saturation was achieved. Themes were identified using constant comparative analysis of transcribed interviews. Results Parents (n=10) felt that BTF positively affected the experience of tube feeding and enhanced their child's health and wellbeing. Parents described BTF as a means of self-empowerment and a mechanism to normalize feeding and care for the entire family. Despite reporting BTF as more time consuming than formula feeding, all parents were satisfied with having made the change, and planned on continuing the diet. Conclusion BTFs can improve the experience of tube feeding and positively address some of the negative psychosocial implications of enteral tube feeding, providing a sense of normalcy and control for parents caring for a child with medical complexity. [ABSTRACT FROM AUTHOR]

Objectives To determine whether a change in clinical management (e.g. new tracheostomy or adenotonsillectomy) occurred following a polysomnogram (PSG) in children with medical complexity (CMC) and to explore whether families' goals of care (regarding results and treatment implications) were discussed prior to the completion of a PSG. Methods All CMC enrolled in a complex care program at the Hospital for Sick Children, Canada, who underwent a baseline PSG from 2009 to 2015 were identified. Exclusion criteria included (1) PSGs for ventilation titration and (2) PSGs outside the study time frame. Health records were retrospectively reviewed to determine demographics, medical histories, families' wishes, PSG results, and their impact on clinical care. Descriptive statistics were used to summarize results. Results Of 145 patients identified, 96 patients met inclusion criteria. Fifty (52%) were male. Median age was 3 years. Forty-eight (50%) were diagnosed with clinically significant (i.e. moderate to severe obstructive sleep apnea, central sleep apnea, and/or hypoventilation) sleep-related breathing disorders. Of those diagnosed, 9 (19%) had surgery, 25 (52%) underwent respiratory technology initiation, and 3 (6%) underwent both. In the remaining 11 (23%) patients, treatment was either considered too risky or did not align with the families' wishes. Only 3 of 96 patients had clear documentation of their families' wishes prior to PSG completion. Conclusion Recognizing the burden of medical tests for both the child and the health care system, a process of shared-decision making that includes clarifying a family's wishes may be prudent prior to conducting a PSG. [ABSTRACT FROM AUTHOR]

The COVID-19 pandemic has had dramatic effects on the lives of children globally. However, socially vulnerable children have been particularly impacted. Certain populations have increased vulnerabilities, including children and youth experiencing homelessness. Increased infection risk due to congregant living and challenges with physical distancing are contributing factors. An urgent need exists for a wholistic approach to care with unique cross-sectoral partnerships across disciplines. A recognition of the unintended consequence of the COVID-19 pandemic on this population is urgently required by all those supporting children. Families should receive direct support in clinical settings to identify their social needs. Partnership with community agencies and advocacy for appropriate isolation facilities for patients experiencing homelessness are critical. [ABSTRACT FROM AUTHOR]

The start of a parenting journey in the neonatal intensive care unit (NICU) presents many stressors to parents. Previous research has shown parents of infants admitted to the NICU experience heightened stress, anxiety, and depression. Mental health support varies across Canadian NICUs with mixed results. One promising intervention that has not been explored in the NICU is Acceptance and Commitment Therapy (ACT), a behavioural therapy that has had positive mental health-related outcomes in similar parental populations. ACT differs from previous mental health interventions such as traditional Cognitive Behavioural Therapy (CBT) as it involves mindfulness and acceptance to increase psychological flexibility. Increased psychological flexibility is linked to greater emotional well-being, a higher quality of life, and decreased stress, anxiety, and depression. There is a need for research investigating the utility of ACT in improving mental health outcomes for parents of preterm infants. [ABSTRACT FROM AUTHOR]

Un nourrisson est à haut risque d'allergie alimentaire si lui ou un membre de sa famille immédiate présente une affection atopique (comme l'eczéma). Il faut promouvoir et soutenir l'allaitement, quels que soient les enjeux reliés à la prévention des allergies alimentaires, mais chez les nourrissons dont la mère ne peut pas allaiter ou choisit de ne pas le faire, il n'est pas recommandé d'utiliser une préparation en particulier (p. ex. les préparations hydrolysées) pour prévenir les allergies alimentaires. Lorsque les préparations à base de lait de vache sont introduites dans l'alimentation d'un nourrisson, il faut s'assurer de maintenir une ingestion régulière (pas nécessairement plus de 10 mL par jour) pour éviter la perte de tolérance. Chez les nourrissons à haut risque, des données concluantes indiquent que l'introduction précoce d'aliments allergènes (vers l'âge de six mois, mais pas avant l'âge de quatre mois) peut prévenir les allergies alimentaires courantes, notamment les allergies aux arachides et aux œufs. Lorsqu'un aliment allergène a été introduit, il est important d'en maintenir une ingestion régulière (p. ex. quelques fois par semaine) pour maintenir la tolérance. Il est possible d'introduire les aliments allergènes courants sans faire de pause de quelques jours entre chaque nouvel aliment. Par ailleurs, le risque d'une grave réaction lors de la première exposition est très faible chez le nourrisson. Il n'est pas recommandé de procéder au dépistage préventif en cabinet avant d'introduire des aliments allergènes. Aucune recommandation ne peut être formulée pour l'instant sur le rôle des modifications à l'alimentation de la mère pendant la grossesse ou l'allaitement, ou sur les suppléments de vitamine D, d'oméga 3, de prébiotiques ou de probiotiques pour prévenir les allergies alimentaires. [ABSTRACT FROM AUTHOR]

Infants at high risk for developing a food allergy have either an atopic condition (such as eczema) themselves or an immediate family member with such a condition. Breastfeeding should be promoted and supported regardless of issues pertaining to food allergy prevention, but for infants whose mothers cannot or choose not to breastfeed, using a specific formula (i.e. hydrolyzed formula) is not recommended to prevent food allergies. When cow's milk protein formula has been introduced in an infant's diet, make sure that regular ingestion (as little as 10 mL daily) is maintained to prevent loss of tolerance. For high-risk infants, there is compelling evidence that introducing allergenic foods early—at around 6 months, but not before 4 months of age—can prevent common food allergies, and allergies to peanut and egg in particular. Once an allergenic food has been introduced, regular ingestion (e.g. a few times a week) is important to maintain tolerance. Common allergenic foods can be introduced without pausing for days between new foods, and the risk for a severe reaction at first exposure in infancy is extremely low. Pre-emptive in-office screening before introducing allergenic foods is not recommended. No recommendations can be made at this time about the role of maternal dietary modification during pregnancy or lactation, or about supplementing with vitamin D, omega 3, or pre- or probiotics as means to prevent food allergy. [ABSTRACT FROM AUTHOR]

Grâce aux progrès de la médecine et aux innovations en technologies de la santé, de nombreux enfants atteints d'affections au pronostic réservé vivent désormais plus longtemps. Ces enfants sont souvent qualifiés d'« enfants ayant des problèmes médicaux complexes », parce qu'ils ont des affections chroniques, utilisent davantage les soins de santé et sont dépendants de la technologie. La complexité de leurs soins et leur fragilité intrinsèque entraînent des risques plus élevés d'erreurs de médication, autant dans un contexte ambulatoire qu'hospitalier. Le taux élevé de fragmentation des soins, de mauvaise communication et de polypharmacie chez les enfants ayant des problèmes médicaux complexes accroissent les possibilités d'erreurs, particulièrement au moment de changer de milieu de soins et de praticiens. Il n'existe pas de données sur les facteurs qui contribuent à un risque plus élevé d'erreurs de médication dans cette population et sur les meilleures mesures pour les éviter. Le présent point de pratique fournit des directives cliniques aux professionnels de la santé afin de s'assurer d'une utilisation sécuritaire des médicaments auprès des enfants ayant des problèmes médicaux complexes et s'attarde sur des stratégies pratiques applicables à la fois en soins ambulatoires et hospitaliers. [ABSTRACT FROM AUTHOR]

Due to advances in medical care and innovations in health technology, many children with life-limiting conditions are now living longer. These children are often referred to as 'children with medical complexity (CMC)', and they are characterized by chronic conditions, increased health care utilization, and technology dependence. Their complexity of care and inherent fragility lead to higher risk for medication errors, both in-community and in-hospital. High rates of care fragmentation, miscommunication, and polypharmacy in CMC increase opportunities for error, particularly as children transition between health care settings and practitioners. Data on the factors contributing to higher risk of medication errors in this population and how they can be effectively addressed are lacking. This practice point provides clinical guidance for health care professionals to ensure medication safety when caring for CMC, with focus on practical strategies for outpatient and inpatient care. [ABSTRACT FROM AUTHOR]