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BACKGROUND AND OBJECTIVES: Children with medical complexity (CMC) often have multiple life-limiting conditions with no unifying diagnosis and an unclear prognosis and are at high risk for morbidity and mortality. Advance care planning (ACP) conversations need to be uniquely tailored to this population. Our primary objective for this study was to develop an in-depth understanding of the ACP experiences from the perspectives of both parents and health care providers (HCPs) of CMC. METHODS: We conducted 25 semistructured interviews with parents of CMC and HCPs of various disciplines from a tertiary pediatric hospital. Interview guide questions were focused on ACP, including understanding of the definition, positive and negative experiences, and suggestions for improvement. Interviews were conducted until thematic saturation was reached. Interviews were audio recorded, transcribed verbatim, coded, and analyzed using content analysis. RESULTS: Fourteen mothers and 11 HCPs participated in individual interviews. Interviews revealed 4 major themes and several associated subthemes (in parentheses): (1) holistic mind-set, (2) discussion content (beliefs and values, hopes and goals, and quality of life), (3) communication enhancers (partnerships in shared decision-making, supportive setting, early and ongoing conversations, consistent language and practice, family readiness, provider expertise in ACP discussions, and provider comfort in ACP discussions), and (4) the ACP definition. CONCLUSIONS: Family and HCP perspectives revealed a need for family-centered ACP for CMC and their families. Our results aided the development of a family-centered framework to enhance the delivery of ACP through a holistic mind-set, thoughtful discussion content, and promoting of conversation enhancers.

Background: Risk factors for severe outcomes of SARS-CoV-2 infection are not well established in children. We sought to describe pediatric hospital admissions associated with SARS-CoV-2 infection in Canada and identify risk factors for more severe disease. Methods: We conducted a national prospective study using the infrastructure of the Canadian Paediatric Surveillance Program (CPSP). Cases involving children who were admitted to hospital with microbiologically confirmed SARS-CoV-2 infection were reported from Apr. 8 to Dec. 31 2020, through weekly online questionnaires distributed to the CPSP network of more than 2800 pediatricians. We categorized hospital admissions as related to COVID-19, incidental, or for social or infection control reasons and determined risk factors for disease severity in hospital. Results: Among 264 hospital admissions involving children with SARS-CoV-2 infection during the 9-month study period, 150 (56.8%) admissions were related to COVID-19 and 100 (37.9%) were incidental infections (admissions for other reasons and found to be positive for SARS-CoV-2 on screening). Infants (37.3%) and adolescents (29.6%) represented most cases. Among hospital admissions related to COVID-19, 52 (34.7%) had critical disease, 42 (28.0%) of whom required any form of respiratory or hemodynamic support, and 59 (39.3%) had at least 1 underlying comorbidity. Children with obesity, chronic neurologic conditions or chronic lung disease other than asthma were more likely to have severe or critical COVID-19. Interpretation: Among children who were admitted to hospital with SARS-CoV-2 infection in Canada during the early COVID-19 pandemic period, incidental SARS-CoV-2 infection was common. In children admitted with acute COVID-19, obesity and neurologic and respiratory comorbidities were associated with more severe disease.

Key Points Question What is the diagnostic yield of genome sequencing in children with unexplained medical complexity and prior negative results of genetic testing? Findings In this cohort study that included 138 individuals from 49 families, genome sequencing detected all genomic variation previously identified by conventional genetic testing and resulted in a new diagnosis for 31% of patients. Meaning This study suggests that, because of its high yield, comprehensive nature, and increasingly competitive costs, genome sequencing is a potentially first-tier genetic test for children with unexplained medical complexity.

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Key Points Question How do bereaved family caregivers describe their experiences with advance care planning for children with medical complexity? Findings In this qualitative study that included 13 parents of children with medical complexity, participants emphasized the importance of involving trusted health care professionals and incorporating parental expertise to guide advance care planning. The relative shock parents experienced regarding the timing of the child’s death, despite recurrent experiences with life-threatening events, and the multiple losses they experienced when the child with a large health care team died were important themes. Meaning The perspectives of bereaved parents in this study revealed important themes that should be considered for future study of advance care planning for children with medical complexity.

To compare health care use and costs for youth with chronic health conditions before and after transfer from pediatric to adult health care services. METHODS:Youth born in Ontario, Canada, between April 1, 1989, and April 1, 1993, were assigned to 11 mutually exclusive, hierarchically arranged clinical groupings, including "complex" chronic conditions (CCCs), non-complex chronic conditions (N-CCCs), and chronic mental health conditions (CMHCs). Outcomes were compared between 2-year periods before and after transfer of pediatric services, the subjects' 18th birthday. RESULTS:Among 104 497 youth, mortality was highest in those with CCCs, but did not increase after transfer (1.3% vs 1.5%, P = .55). ($1774 [659-5977] vs $1545 [529-5128], P < .001). Emergency department visits increased only among youth with N-CCCs (P < .001). High-acuity emergency department visits increased CCCs (P = .04) and N-CCCs (P < .001), but not for CMHC (P = .59), who had the highest visit rate. Among the 11 individual conditions, costs only increased in youth with asthma (P < .001), and decreased (P < .05) in those with neurologic impairment, lupus, inflammatory bowel disease, and mood/affective disorders.CONCLUSIONS: Pediatric transfer to adult care is characterized by relatively stable short-term patterns of health service use and costs among youth with chronic conditions.

Vaccinationis a critical tool in the prevention of COVID‐19 infection for individuals and for communities. The mRNA vaccines contain polyethylene glycol (PEG) as a stabilizer. Currently, in North America, only the BNT162b2 (Pfizer‐BioNTech ) mRNA vaccine is approved for individuals aged 12–17. Most patients treated with contemporary regimens for acute lymphoblastic leukemia receive PEG‐asparaginase (PEG‐ASNase) and 10%–30% will develop allergic reactions. Optimizing access and safety for vaccine administration for these patients is critical. This report describes a process developed to support COVID vaccination in a cohort of adolescents and young adults with a history of PEG‐ASNase allergy.