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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]

Children with medical complexity (CMC) have complex chronic conditions with significant functional impairment, contributing to high caregiving demand. This study seeks to explore impacts of parental caregiving for CMC. Fifteen caregivers of CMC followed at a tertiary care hospital participated in semi-structured interviews. Interviews were concurrently analyzed using a qualitative description framework until thematic saturation was reached. Codes were grouped by shared concepts to clarify emergent findings. Four affected domains of parental caregiver experience with associated subthemes (in parentheses) were identified: personal (identity, physical health, mental health), family (marriage, siblings, family quality of life), social (time limitations, isolating lived experience), and financial (employment, medical costs, accessibility costs). Despite substantial challenges, caregivers identified two core determinants of personal resilience: others' support (hands-on, interpersonal, informational, material) and a positive outlook (self-efficacy, self-compassion, reframing expectations). Further research is needed to understand the unique needs and strengths of caregivers for this vulnerable population. [ABSTRACT FROM AUTHOR]

Background: Despite severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) vaccine approval in Canada for children six months to five years old, vaccine acceptance for this age group remains low compared with other age groups. This study aimed to assess vaccine acceptance among caregivers of children younger than five years old and to identify factors associated with SARS-CoV-2 vaccine hesitancy in Toronto. Methods: A multi-language self-administered survey was sent to caregivers of children attending 660 Toronto schools and two community health centres between April 5 to July 4, 2022. Data on socio-demographic characteristics, acceptance of routine childhood and influenza vaccines and current SARS-CoV-2 vaccine status for parents and older siblings were collected. Results: A total of 253 caregivers of children younger than five years old answered the survey. Although 234 (94%) of the responding caregivers were fully vaccinated against SARS-CoV-2 and more than 90% had their children older than five years receiving one dose of the vaccine, only 148 (59%) had intentions to vaccinate their child younger than five years old. Conclusion: These findings highlight the importance of interventions to increase vaccine confidence among caregivers of children aged younger than five years old. [ABSTRACT FROM AUTHOR]

Background: Children with medical complexity (CMC) are individuals with complex chronic conditions who have substantial health care needs, functional limitations, and significant use of health care. By nature of their health status, they have many care providers across multiple settings, making information sharing critical to their health and safety. Connecting2gether (C2), a weband mobile-based patient-facing platform, was codeveloped with families to support and empower parental caregivers, improve information sharing, and facilitate care delivery. C2 also provided a live platform coach to conduct parental feedback and coaching sessions, which included answering questions, providing advice on usage, and addressing technological issues. Objective: This study was conducted to understand the experience of parental caregivers using the C2 platform and the role of the live platform coach. This study is a subset of a larger study assessing the feasibility of C2 in the care of CMC. Methods: Parental caregivers (n=33) participated in biweekly sessions to provide feedback and receive real-time platform use support from a trained research team member acting as a live platform coach. Parental caregivers were asked about the utility and usability of C2's features. Questions, platform issues, and feedback were recorded on a standardized electronic data collection tool. A thematic analysis was performed to analyze parental comments, and codes were categorized into key themes. The number of comments corresponding with each code was quantified. Results: A total of 166 parental feedback and coaching sessions were conducted, with an average of 5 sessions per parental caregiver (range 1-7). There were 33 (85%) parental caregivers that participated in at least one coaching session. Technical issues and difficulties navigating C2 were addressed in real time during the sessions to encourage platform engagement. Four key themes were identified: (1) live platform coach, (2) barriers to platform usage and technical challenges, (3) platform requests and modifications, and (4) parent partnership and empowerment. Conclusions: Parental caregivers describe C2 as a valuable tool, acting as a facilitator for enhanced care coordination and communication. Parental caregiver feedback showed that the live platform coach was a critical tool in educating on platform use and addressing technological concerns. Further study of the use of the C2 platform and its role in the care of CMC is needed to understand the possible benefits and cost-effectiveness of this technology. [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]

Introduction: A provincial strategy to expand care coordination and integration of care for children with medical complexity (CMC) was launched in Ontario, Canada in 2015. A process evaluation of the roll-out examined the processes, mechanisms of impact, and contextual factors affecting the implementation of the Complex Care for Kids Ontario (CCKO) intervention strategy. Methods: This process evaluation was conducted and analyzed according to the United Kingdom Medical Research Council (UK-MRC) process evaluation framework. To evaluate the implementation of the CCKO intervention, a multi-method study design was used, including semi-structured interviews with 38 key informants and 10 families of CMC involved in CCKO. To further understand implementation details across regional sites, provincial-level implementation plans, and process documents were reviewed. Discussion: Strengths of CCKO included novel collaborations and partnerships between complex care teams, community partners and regional sites. Issues relating to communication and coordination across care sectors created challenges to holistic care coordination objectives. Provincial system fragmentation limited the ability of CCKO to provide seamless care coordination due to the multiple care sectors involved. Conclusion: This study adds to the understanding of the processes involved in a population-level care coordination intervention for CMC. Lessons learned through CCKO can help facilitate reproducibility and necessary adjustments of the intervention in different settings. [ABSTRACT FROM AUTHOR]

Genome sequencing (GS) has demonstrated high diagnostic yield in pediatric patients with complex, clinically heterogeneous presentations. Emerging evidence shows generally favorable experiences for patients and families receiving GS. As a result, implementation of GS in pediatrics is gaining momentum. To inform implementation, we conducted a qualitative study to explore the personal utility of GS for parents of children with medical complexity (CMC). GS was performed at an academic tertiary‐care center for CMC for whom a genetic etiology was suspected. Following the return of GS results, semi‐structured interviews were conducted with 14 parents about their child's diagnostic journey. Of the children whose parents were interviewed, six children received a diagnosis, two received a possible diagnosis, and six did not receive a diagnosis. A predominantly deductive thematic analysis approach to the interview data was used by applying Kohler's personal utility framework to understand affective, cognitive, behavioral and social impacts of GS. Both the diagnosed and undiagnosed groups experienced enhanced emotion‐focused coping (affective). The diagnosed group experienced favorable utility related to knowledge of condition (cognitive) and communication with relatives (behavioral). A domain beyond Kohler's framework related to the presence or absence of GS impact on medical management was also described by parents. The deployment of GS late in the diagnostic odyssey and the limited knowledge available for the rare genetic disorders diagnosed in this cohort appeared to diminish the perceived utility of GS. As GS capabilities continue to evolve at a rapid pace and become available earlier in the diagnostic journey, it is important to consider the impact and timing of testing on parents of CMC. [ABSTRACT FROM AUTHOR]

Aim: To identify the highest‐priority clinical research areas related to children with neurological impairment and medical complexity among clinicians and caregivers. Method: A modified, three‐stage Delphi study using online surveys and guided by a steering committee was completed. In round 1, clinicians and family caregivers suggested clinical topics and related questions that require research to support this subgroup of children. After refinement of the suggestions by the steering committee, participants contributed to 1 (family caregivers) or 2 (clinicians) subsequent rounds to develop a prioritized list. Results: A diverse international expert panel consisting of 49 clinicians and 12 family caregivers provided 601 responses. Responses were distilled into 26 clinical topics comprising 126 related questions. The top clinical topics prioritized for research were irritability and pain, child mental health, disorders of tone, polypharmacy, sleep, aspiration, behavior, dysautonomia, and feeding intolerance. The clinician expert panel also prioritized 10 specific research questions. Interpretation: Study findings support a research agenda for children with neurological impairment and medical complexity focused on addressing clinical questions, prioritized by an international group of clinicians and caregivers. This original article is commented by Becker‐Barroso on page 145 of this issue. [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]

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. [ABSTRACT FROM AUTHOR]

Children with medical complexity (CMC) are a growing population, yet training in complex care varies across pediatric residency programs. The purpose of this study was 1) to evaluate the effectiveness of a curriculum for pediatric residents in improving performance in a simulated clinical scenario, and 2) to explore residents' perceived self-efficacy in caring for CMC. A randomized controlled trial was conducted supplemented by qualitative inquiry. Pediatric residents from 2 residency programs were randomly assigned to participate in interactive modules on: 1) clinical assessment, care planning, and technological dependency or 2) noncomplex care topics. The primary outcome was mean score on an Observed Structured Clinical Examination (OSCE) of tracheostomy care. Semistructured interviews were conducted postintervention and analyzed using qualitative content analysis. Ninety-four eligible residents were randomized. Residents who attended all modules and the OSCE and consented to participate (intervention [n = 20] and control [n=24]) were included in the final analysis. At baseline, few (9%) reported being comfortable caring for CMC. There was no significant difference in mean OSCE score between intervention and control groups (39.0 ± 1.1 vs 38.0 ± 1.0, P =.48). Qualitative analysis revealed 3 emerging themes related to resident self-efficacy: building a system of care, navigating uncertainty, and professional identity formation. A standardized complex care curriculum delivered in a classroom setting did not lead to improved performance in an OSCE station despite increased resident-reported self-efficacy in approaching care for CMC. These findings highlight the need for multidimensional educational interventions and assessments in complex care. [ABSTRACT FROM AUTHOR]

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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]