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Children with medical complexity (CMC) are a medically fragile subset of children who rely on parental caregivers for substantial care needs. Caregivers of CMC often experience adverse health outcomes such as depression and anxiety, sleep deprivation, financial hardships, and social isolation. Caregivers of CMC are at risk of premature mortality, which is thought to be mediated by chronic and elevated stress, as well as psychiatric morbidity risk. Access to mental health care, where the needs of both the caregiver and child are considered, can enable caregivers to meet high caregiving demands and improve both child and caregiver outcomes. We describe the Caring for the Caregiver (C4C) model, a novel integrated stepped care model consisting of collaboration between a psychiatrist and a pediatric complex care program. This model provides support in 3 steps: 1) early identification of distress, 2) social work assessment, intervention and psychotherapy, and 3) psychiatric care, including diagnosis or medication initiation, for caregivers of CMC. This innovative model will be the first to embed support for the mental health needs of caregivers of CMC within a pediatric team, facilitating access to psychiatric care and serving as a foundation for future integrated stepped care models.

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.

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.

Objective Children with medical complexity (CMC) are hypothesized to have unique housing and accessibility needs due to their medical fragility and medical technology dependency; however, research on prevalence and types of housing need in CMC is limited. The objective was to describe housing need in families of CMC, and to compare housing need across CMC, children with one chronic condition (Type 1 diabetes; CT1D) and healthy children (HC). Methods This cross-sectional descriptive study assessed housing suitability, adequacy, affordability, stress, stability, and accessibility using survey methodology. Participants were caregivers of CMC, CT1D and HC at a tertiary-care pediatric hospital. The association of housing need outcomes across groups was analyzed using logistic and ordinal logistic regression models, adjusting for income, educational attainment, employment status, community type, immigration status, child age, and number of people in household. Results Four hundred ninety caregivers participated. Caregivers of CMC reported increased risk of housing-related safety concerns (aOR 3.1 [1.3–7.5]), using a common area as a sleeping area (5.6 [2.0–16.8]), reducing spending (4.6 [2.3–9.5]) or borrowing money to afford rent (2.9 [1.2–6.7]), experiencing housing stress (3.3 [1.8–6.0]), and moving or considering moving to access health/community services (15.0 [6.4–37.6]) compared to HC. Conclusions CMC were more likely to experience multiple indicators of housing need compared to CT1D and HC even after adjusting for sociodemographic factors, suggesting an association between complexity of child health conditions and housing need. Further research and practise should consider screening for and supporting housing need in CMC.

R!sum! 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.

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.

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.

BACKGROUND The Connecting2gether (C2) platform is a web and mobile–based information-sharing tool that aims to improve care for children with medical complexity and their families. A key feature of C2 is secure messaging, which enables parental caregivers (PCs) to communicate with their child’s care team members (CTMs) in a timely manner. OBJECTIVE The objectives of this study were to (1) evaluate the use of a secure messaging system, (2) examine and compare the content of messages to email and phone calls, and (3) explore PCs’ and CTMs’ perceptions and experiences using secure messaging as a method of communication. METHODS This is a substudy of a larger feasibility evaluation of the C2 platform. PCs of children with medical complexity were recruited from a tertiary-level complex care program to use the C2 platform for 6 months. PCs could invite CTMs involved in their child’s care to register on the platform. Messages were extracted from C2, and phone and email data were extracted from electronic medical records. Quantitative data from the use of C2 were analyzed using descriptive statistics. Messaging content codes were iteratively developed through a review of the C2 messages and phone and email communication. Semistructured interviews were completed with PCs and CTMs. Communication and interview data were analyzed using thematic analysis. RESULTS A total of 36 PCs and 66 CTMs registered on the C2 platform. A total of 1861 messages were sent on C2, with PCs and nurse practitioners sending a median of 30 and 74 messages, respectively. Of all the C2 messages, 85.45% (1257/1471) were responded to within 24 hours. Email and phone calls focused primarily on clinical concerns and medications, whereas C2 messaging focused more on parent education, proactive check-ins, and nonmedical aspects of the child’s life. Four themes emerged from the platform user interviews related to C2 messaging: (1) connection to the care team, (2) efficient communication, (3) clinical uses of secure messaging, and (4) barriers to use. CONCLUSIONS Overall, our study provides valuable insight into the benefits of secure messaging in the care of children with medical complexity. Secure messaging provided the opportunity for continued family teaching, proactive check-ins from health care providers, and casual conversations about family and child life, which contributed to PCs feeling an improved sense of connection with their child’s health care team. Secure messaging can be a beneficial additional communication method to improve communication between PCs and their care team, reducing the associated burden of care coordination and ultimately enhancing the experience of care delivery. Future directions include the evaluation of secure messaging when integrated into electronic medical records, as this has the potential to work well with CTM workflow, reduce redundancy, and allow for new features of secure messaging.

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.

ImportanceChildren with medical complexity (CMC) have chronic conditions and high health needs and may experience fragmented care.ObjectiveTo compare the effectiveness of a structured complex care program, Complex Care for Kids Ontario (CCKO), with usual care.Design, Setting, and ParticipantsThis randomized clinical trial used a waitlist variation for randomizing patients from 12 complex care clinics in Ontario, Canada, over 2 years. The study was conducted from December 2016 to June 2021. Participants were identified based on complex care clinic referral and randomly allocated into an intervention group, seen at the next available clinic appointment, or a control group that was placed on a waitlist to receive the intervention after 12 months.InterventionAssignment of a nurse practitioner–pediatrician dyad partnering with families in a structured complex care clinic to provide intensive care coordination and comprehensive plans of care.Main Outcomes and MeasuresCo-primary outcomes, assessed at baseline and at 6, 12, and 24 months postrandomization, were service delivery indicators from the Family Experiences With Coordination of Care that scored (1) coordination of care among health care professionals, (2) coordination of care between health care professionals and families, and (3) utility of care planning tools. Secondary outcomes included child and parent health outcomes and child health care system utilization and cost.ResultsOf 144 participants randomized, 141 had complete health administrative data, and 139 had complete baseline surveys. The median (IQR) age of the participants was 29 months (9-102); 83 (60%) were male. At 12 months, scores for utility of care planning tools improved in the intervention group compared with the waitlist group (adjusted odds ratio, 9.3; 95% CI, 3.9-21.9; P P = .01).Conclusions and RelevanceThe CCKO program improved the perceived utility of care planning tools but not other outcomes at 1 year. Extended evaluation periods may be helpful in assessing pediatric complex care interventions.Trial RegistrationClinicalTrials.gov Identifier: NCT02928757

ObjectiveThe primary objective was to quantify psychosocial risk in family caregivers (FCs) of children with medical complexity (CMC) during the COVID-19 pandemic using the Psychosocial Assessment Tool (PAT). The secondary objectives were to compare this finding with the average PAT score of this population before the COVID-19 pandemic and to examine potential clinical predictors of psychosocial risk in FCs of CMC.DesignCross-sectional study.ParticipantsFCs of CMC were recruited from the Long-Term Ventilation Clinic at The Hospital for Sick Children, Toronto, Ontario, Canada. A total of 91 completed the demographic and PAT questionnaires online from 10 June 2021 through 13 December 2021.Main outcome measuresMean PAT scores in FCs were categorised as ‘Universal’ low risk, ‘Targeted’ intermediate risk or ‘Clinical’ high risk. The effect of sociodemographic and clinical variables on overall PAT scores was assessed using multiple linear regression analysis. Comparisons with a previous study were made using Mann-Whitney tests and χ2analysis.ResultsMean (SD) PAT score was 1.34 (0.69). Thirty-one (34%) caregivers were classified as Universal, 43 (47%) as Targeted and 17 (19%) as Clinical. The mean PAT score (1.34) was significantly higher compared with the mean PAT score (1.17) found prior to the COVID-19 pandemic. Multiple linear regression analysis demonstrated an overall significant model, with the number of hospital admissions since the onset of COVID-19 being the only variable associated with the overall PAT score.ConclusionFCs of CMC are experiencing significant psychosocial stress during the COVID-19 pandemic. Timely and effective interventions are warranted to ensure these individuals receive the appropriate support.

ObjectivesDecisions to pause all non-essential paediatric hospital activities during the initial phase of the COVID-19 pandemic may have led to significant delays, deferrals and disruptions in medical care. This study explores clinical cases where the care of children was perceived by hospital clinicians to have been negatively impacted because of the changes in healthcare delivery attributing to the restrictions placed resulting from the COVID-19 pandemic.Design and settingThis study used a mixed-methods approach using the following: (1) a quantitative analysis of overall descriptive hospital activity between May and August 2020, and utilisation of data during the study period was performed, and (2) a qualitative multiple-case study design with descriptive thematic analysis of clinician-reported consequences of the COVID-19 pandemic on care provided at a tertiary children’s hospital.ResultsHospital-level utilisation and activity patterns revealed a substantial change to hospital activity including an initial reduction in emergency department attendance by 38% and an increase in ambulatory virtual care from 4% before COVID-19 to 67% between May and August 2020. Two hundred and twelve clinicians reported a total of 116 unique cases. Themes including (1) timeliness of care, (2) disruption of patient-centred care, (3) new pressures in the provision of safe and efficient care and (4) inequity in the experience of the COVID-19 pandemic emerged, each impacting patients, their families and healthcare providers.ConclusionBeing aware of the breadth of the impact of the COVID-19 pandemic across all of the identified themes is important to enable the delivery of timely, safe, high-quality, family-centred paediatric care moving forward.

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., Graphical Abstract

BackgroundChildren with medical complexity (CMC) require the expertise of many care providers spanning different disciplines, institutions, and settings of care. This leads to duplicate health records, breakdowns in communication, and limited opportunities to provide comprehensive, collaborative care. The objectives of this study were to explore communication challenges and solutions/recommendations from multiple perspectives including (i) parents, (ii) HCPs – hospital and community providers, and (iii) teachers of CMC with a goal of informing patient care.MethodsThis qualitative study utilized an interpretive description methodology. In-depth semi-structured interviews were conducted with parents and care team members of CMC. The interview guides targeted questions surrounding communication, coordination, access to information and roles in the health system. Interviews were conducted until thematic saturation was reached. Interviews were audio-recorded, transcribed verbatim, and coded and analyzed using thematic analysis.ResultsThirty-two individual interviews were conducted involving parents (n = 16) and care team members (n = 16). Interviews revealed 2 main themes and several associated subthemes (in parentheses): (1) Communication challenges in the care of CMC (organizational policy and technology systems barriers, inadequate access to health information, and lack of partnership in care) (2) Communication solutions (shared systems that can be accessed in real-time, universal access to health information, and partnered contribution to care).ConclusionParents, HCPs, and teachers face multiple barriers to communication and information accessibility in their efforts to care for CMC. Parents and care providers in this study suggested potential strategies to improve communication including facilitating communication in real-time, universal access to health information and meaningful partnerships.

Background Enhanced health and safety measures, such as symptom screening, physical distancing, cohorting, masking, and asymptomatic testing for children have been introduced into schools to prevent SARS-CoV-2 transmission. Although asymptomatic testing has been considered a measure to reduce in-school transmission, it has not been broadly implemented or evaluated. To address this, a pilot project with public health, school boards, and hospital-based testing partners was established to assess the feasibility of offering on-site and low barrier SARS-CoV-2 polymerase chain reaction (PCR) testing across schools in the Toronto region. Objectives The primary objective of this study was to assess the feasibility of offering on-site and low barrier PCR asymptomatic testing across schools in the Toronto region. Design/Methods A six-week testing pilot across the Greater Toronto Area took place. Schools were selected to participate in expanded testing to determine case prevalence in high-risk settings of school-based SARS-CoV-2. Students and staff were excluded if they had tested positive for COVID-19 in the last 3 months. Different testing opportunities were offered based on the testing partner and school preference including location and modality. Descriptive methods were used to assess the uptake of testing and case positivity by individuals recommended to be tested. Results Eighteen schools participated in the pilot testing. All students and staff were invited to participate in asymptomatic testing. Testing was offered to 9282 students and 1000 staff, and testing uptake was 29% (2729 students) and 54% (544 staff), respectively. Forty-eight percent of tests (1645) were oral nasal tests, 18% (622) were NP swab tests and 33% (1120) were saliva tests. Of the saliva tests, 52% (590) were on-site saliva tests and 48% (530) were take-home saliva kits. The staff and student positivity rate for on-site testing was 1.9% and 4.9% for tests completed at the COVID-19 Assessment Center at SickKids. Conclusion Results from this pilot project demonstrate that on-site PCR testing uptake remained low despite offering in-school testing, specialized support, and reduced barriers by using non-invasive testing with the use of saliva/oral nasal/PCR testing kits. Results highlight the challenges of asymptomatic testing and the balance of resource utilization for low case counts. Future studies should examine alternate means of symptomatic testing.

Background The Connecting2gether (C2) platform is a secure online information-sharing tool that aims to improve care for children with medical complexity (CMC) and their families. A key feature of C2 is secure messaging which enables parents to communicate with their child’s care team members (CTMs) in a timely manner. Objectives (1) Evaluate the use of a secure messaging system, (2) Examine and compare the content of messages to email and phone calls, and (3) Explore parent and CTMs’ perceptions and experience using secure messaging as a method of communication. Design/Methods This study is a sub-study of a larger feasibility evaluation of the C2 platform. Parents of CMC were recruited from a tertiary level complex care program to use the C2 platform for 6 months. Parents could invite CTMs involved in their child’s care to register on the platform. Secure messages were extracted from C2 usage reports, and phone and email documentation from the electronic medical record. Quantitative data from C2 usage reports were analyzed using descriptive statistics. Messaging content codes were iteratively developed through review of the C2 messages. Semi-structured interviews were completed with parents and CTMs. Communication and interview data were analyzed using thematic analysis. Results 36 parents and 43 care team members, including HCPs and family members, registered on the C2 platform. Participants sent a total of 1853 messages on C2 with parents and nurse practitioners sending a mean of 33.1 and 87.4 messages, respectively. 85.5% of all C2 messages were responded to within 24 hours. Email and phone calls focused primarily on clinical concerns and medications, whereas C2 messaging focused more on education, proactive check-ins, and non-medical aspects of the child’s life (Figure 1). Four themes emerged from the participant interviews related to C2 messaging: Connection to Care Team, Efficient Communication, Clinical Uses of Secure Messaging, and Barriers to Use (Figure 2). Conclusion Overall, our study provides valuable insight into the benefits of secure messaging in the care of CMC. Secure messaging provided the opportunity for continued patient education, proactive check-ins from HCPs, and casual conversations about family and child life, which contributed to parents feeling an improved sense of connection with their child’s health care team. Secure messaging can be a beneficial additional communication method to improve communication between parents and their care team, reduce the associated burden of care coordination, and ultimately, improve the experience of care delivery.

Background Given the nature of their child’s underlying condition, parents of children with medical complexity (CMC) are relied upon to act as the primary care coordinator for their child. Tools like a care map have been shown to be effective in supporting patients and families, however, the use of an online care map that can be edited in real time has not been used and evaluated. Objectives The aims of this study were to: 1) determine the requirements and design features of a co-created online platform supporting care map creation, 2) use the platform for the development of a shareable standardized parent created care map, and 3) explore the utility and feasibility of an online care map from multiple perspectives including (i) parents, (ii) health care providers (HCPs), and (iii) non-HCPs. Design/Methods This qualitative study utilized interpretive description. Purposive sampling guided participant selection. In phase 1, the requirements and design features for a care map creation tool situated in an online patient and family facing platform were identified through semi-structured interviews with parents and HCPs/non-HCPs of CMC. This data was used to co-create the care map feature. In phase 2, parents used this online platform to create, update, and share care maps. Semi-structured interviews with parents and HCPs/non-HCPs of CMC were conducted to explore care map creation and utility. Results In phase 1, thirty-two interviews with parents (n=16) and HCPs/non-HCPs (n=16) were conducted. Four primary themes related to the requirements and design features for an online care map were identified and included: 1) useful features, 2) suggestions, 3) sharing, and 4) future use, which informed development of the online tool. In phase 2, thirty-six parents were on boarded to the online platform with n=25 (69%) choosing to create a care map. Semi-structured interview data with parents (n=15) and HCPs/non-HCPs (n=13) demonstrated four primary themes to inform the future use of online care maps: 1) clinical usage of care maps, 2) benefits of use, 3) challenges for usage, and 4) suggestions to improve usability. Conclusion Parents have valuable feedback informing the co-creation of an online platform to create and share care maps. Parents reported uncertainty in the clinical usage of care maps, however, HCPs found them very informative. Further research is needed to understand the importance of education and clarity of roles in the use of a care map for clinical care of CMC.

Background COVID-19 testing for symptomatic individuals is a key public health measure for infection prevention and control. However, COVID-19 testing can be uncomfortable without appropriate supports and can lead to testing hesitancy amongst certain populations such as children with medical complexity (CMC) and those with underlying neurological and respiratory conditions. To support COVID-19 testing, a specialized initiative was developed for CMC and their families onsite at The Hospital for Sick Children to enhance testing uptake, reduce barriers to access, and support a safe and accommodated testing environment for families. Multiple modalities of testing were involved and could be completed in their personal vehicle, with specialized support from nurses and child life if needed. Objectives The objectives of our study were to investigate the characteristics of CMC and their families who underwent COVID-19 testing through our program, evaluate indications for testing, and collect case positivity rates. Design/Methods Prospective data, including testing and population characteristics, were collected from December 2020-August 2021 through a centralized system, and was analyzed using descriptive methods. Results 335 children (Table 1) with medical complexity came to the COVID-19 Assessment Center for testing. Of those who were tested 88% (294) had neurodevelopmental conditions with highly challenging behaviours (e.g. autism, developmental delay), and 12% (28) were classified as CMC (i.e. those with active use of medical technology e.g. tracheostomy, G-tube etc.). Of those tested, 6% (21) tested positive for COVID-19. Sixty percent (199) were tested due to having symptoms consistent with COVID-19, 27% (90) had a COVID-19 exposure, 8% (26) were exposed and tested as part of outbreak management and 5% were of an unknown criteria. The majority of completed tests (74%) were nasopharyngeal (NP) swabs, 18% completed saliva tests and 6% completed anterior nares/throat swab tests. Thirteen percent (43) of families requested additional supports such as extra nurses, child life specialists or other accommodations. All patients had a dedicated paediatric nurse and received testing in their personal vehicle. Conclusion CMC and their families face unique barriers to COVID-19 testing. A specialized testing centre for CMC was able to support families by providing unique opportunities for testing, revealing a 6% COVID-19 positivity rate. NP swabs that can be painful were supported through in-vehicle testing with dedicated pediatric nurses. Robust health and safety measures, including a coordinated testing approach, are necessary to ensure accessible testing opportunities for CMC and their families. Further research is needed to be able to support this unique population.

BackgroundPaediatric inflammatory multisystem syndrome (PIMS) is a rare but serious condition temporally associated with SARS-CoV-2 infection. Using the Canadian Paediatric Surveillance Program (CPSP), a national surveillance system, we aimed to 1) study the impact of SARS-CoV-2 linkage on clinical and laboratory characteristics, and outcomes in hospitalized children with PIMS across Canada 2) identify risk factors for ICU admission, and 3) establish the minimum national incidence of hospitalizations due to PIMS and compare it to acute COVID-19.MethodsWeekly online case reporting was distributed to the CPSP network of more than 2800 pediatricians, from March 2020 to May 2021. Comparisons were made between cases with respect to SARS-CoV-2 linkage. Multivariable modified Poisson regression was used to identify risk factors for ICU admission and Minimum incidence proportions were calculated.FindingsIn total, 406 PIMS cases were analyzed, of whom 202 (49· 8%) had a positive SARS-CoV-2 linkage, 106 (26· 1%) had a negative linkage, and 98 (24· 1%) had an unknown linkage. The median age was 5· 4 years (IQR 2· 5–9· 8), 60% were male, and 83% had no identified comorbidities. Compared to cases with a negative SARS-CoV-2 linkage, children with a positive SARS-CoV-2 linkage were older (8· 1 years [IQR 4· 2–11· 9] vs. 4· 1 years [IQR 1· 7–7· 7]; pInterpretationWhile PIMS is rare, almost 1 in 3 hospitalized children required ICU admission and respiratory/hemodynamic support, particularly those ≥ 6 years and with a positive SARS-CoV-2 linkage.FundingFinancial support for the CPSP was received from the Public Health Agency of Canada.

The objective of the study was to assess clinical mental and physical health outcomes of siblings of children with chronic health condition(s) compared with siblings of healthy children or normative data.We searched Ovid MEDLINE, Embase, Cochrane Central Register of Controlled Trials, PsycINFO, and CINAHL through August 9, 2021. We included English-language studies that reported clinically diagnosable mental or physical health outcomes among siblings of children (18 years old) with a chronic health condition, included a comparison group, and used an experimental or observational study design. Two reviewers extracted data and independently assessed risk of bias using the Newcastle Ottawa Scale.Of 9899 screened studies, 34 were included; 28 studies reported on mental health, 3 reported on physical health, and 3 reported on mortality. Siblings of children with chronic conditions had greater depression rating scale scores than their comparison groups (standardized mean difference = 0.53; 95% CI = 0.38-0.68; P .001 [6 studies]), whereas anxiety scores were not substantially increased (standardized mean difference = 0.21; 95% CI = -0.02 to 0.43; P = .07 [7 studies]). The effects for confirmed psychiatric diagnoses (7 studies), mortality (3 studies), or physical health outcomes (3 studies) could not be meta-analyzed given the limited number of studies and between-study heterogeneity.Siblings of children with chronic health conditions may be at an increased risk of depression. Our findings suggest the need for targeted interventions to support the psychological well-being of siblings of children with chronic health conditions.

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.

Resume Contexte: Les facteurs de risque de complications graves de l’infection par le SRAS-CoV-2 n’ont pas ete bien etablis chez les enfants. Nous avons voulu decrire les hospitalisations pediatriques associees au SRAS-CoV-2 au Canada et identifier les facteurs de risque de maladie grave. Methodes: Nous avons procede a une etude prospective nationale en utilisant l’infrastructure du Programme canadien de surveillance pediatrique (PCSP). Les hospitalisations d’enfants ayant contracte une infection par le SRAS-CoV-2 confirmee en laboratoire de microbiologie ont ete rapportees du 8 avril au 31 decembre 2020 au moyen de questionnaires hebdomadaires en ligne distribues au reseau du PCSP, qui compte plus de 2800 pediatres. Nous avons categorise les hospitalisations comme suit : liees a la COVID-19, infections decouvertes fortuitement, ou hospitalisations pour des raisons sociales ou de controle des infections, et degage les facteurs de risque associes a la gravite de la maladie chez les patients hospitalises. Resultats: Sur les 264 hospitalisations d’enfants ayant contracte le SRAS-CoV-2 au cours de la periode de l’etude de 9 mois, 150 (56,8 %) ont ete associees a la COVID-19 et 100 (37,9 %) etaient des cas decouverts fortuitement (admission pour d’autres raisons et decouverte fortuite du SRAS-CoV-2 par depistage positif). Les nourrissons (37,3 %) et les adolescents (29,6 %) representaient la majorite des cas. Parmi les hospitalisations liees a la COVID-19, 52 patients (34,7 %) etaient atteints d’une forme grave de la maladie, dont 42 (28,0 % des cas lies a la COVID-19) ont eu besoin d’une forme d’assistance respiratoire ou hemodynamique, et 59 (39,3 %) presentaient au moins 1 comorbidite sous-jacente. Les enfants atteints d’obesite, de maladies neurologiques chroniques ou de maladies pulmonaires chroniques, a l’exclusion de l’asthme, etaient plus susceptibles de presenter une forme grave ou critique de la COVID-19. Interpretation: Parmi les enfants hospitalises au Canada chez lesquels on a diagnostique une infection par le SRAS-CoV-2 au debut de la pandemie de COVID-19, la decouverte fortuite du SRAS-CoV-2 a ete frequente. Chez les enfants hospitalises pour une COVID-19 aigue, l’obesite et les comorbidites neurologiques et respiratoires ont ete associees a une gravite accrue.

Background Complex Care for Kids Ontario (CCKO) is a multi-year strategy aimed at expanding a hub-and-spoke model to deliver coordinated care for children with medical complexity (CMC) across Ontario. Objective This paper aims to identify the facilitators, barriers and lessons learned from the implementation of the Ontario CCKO strategy. Method Alongside an outcome evaluation of the CCKO strategy, we conducted a process evaluation to understand the implementation context, process and mechanisms. Semi-structured interviews were conducted with 38 healthcare leaders, clinicians and support staff from four regions involved in CCKO care delivery and/or governance. Results Facilitators to CCKO implementation were sustained engagement of system-wide stakeholders, inter-organizational partnerships, knowledge sharing and family engagement. Barriers to CCKO implementation were resources and funding, fragmentation of care, aligning perspectives between providers and clinical staff recruitment and retention. Conclusion A flexible approach is required to implement a complex, multi-centre policy strategy. Other jurisdictions considering such a model of care delivery would benefit from attention to contextual variations in implementation setting, building cross-sector engagement and buy-in, and offering continuous support for modifications to the intervention as and when required.

Length of stay (LOS) is an important issue for many healthcare organizations. In-patients with extreme LOS account for a disproportionately large percentage of hospital costs. Our analysis of over 15,000 pediatric hospital discharges at The Hospital for Sick Children (Toronto, Canada) between 2015 and 2016 revealed that the vast majority of patients with extreme LOS were discharged directly home, with only a minority receiving home-based services. Patients with the greatest LOS were accounted for by primarily four subspecialty services. Although this report outlines an analysis of pediatric in-patients, our findings and implications are relevant for all jurisdictions and populations as many acute care hospitals often "hold" patients with complex, chronic illness as in-patients for extended periods because alternate appropriate services may not exist or be available. Our case study highlights three key areas to improve quality of care for patients with extreme LOS: alternate levels of care, system resources and transitions to home.

Objective 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. Methods A randomized controlled trial was conducted supplemented by qualitative inquiry. Pediatric residents from two residency programs were randomly assigned to participate in interactive modules on: (a) clinical assessment, care planning and technological dependency or (b) non-complex care topics. The primary outcome was mean score on an Observed Structured Clinical Examination (OSCE) of tracheostomy care. Semi-structured interviews were conducted post-intervention and analyzed using qualitative content analysis. Results 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=0.48). Qualitative analysis revealed three emerging themes related to resident self-efficacy: building a system of care, navigating uncertainty and professional identity formation. Conclusion 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.

Background Children with medical complexity (CMC) are a priority pediatric population, with high resource use and associated costs. Genome-wide sequencing is increasingly organized for CMC early in life as a diagnostic test. Polypharmacy becomes common as CMC age. Clinically relevant pharmacogenetic (PGx) information can be extracted from existing genome sequencing (GS) data via GS-PGx profiling. The role of GS-PGx profiling in the CMC population is unclear. Methods Prescribed medications were extracted from care plans of 802 eligible CMC enrolled in a structured Complex Care Program over a 10-year period. Drug-gene associations were annotated using curated Clinical Pharmacogenetics Implementation Consortium data. GS-PGx profiling was then performed for a subset of 50 CMC. Results Overall, 546 CMC (68%) were prescribed at least one medication with an established PGx association. In the GS-PGx subgroup, 24 (48%) carried variants in pharmacogenes with drug-gene guidelines for one or more of their current medications. All had findings of potential relevance to some medications, including 32 (64%) with variants in CYP2C19 that could affect their metabolism of proton-pump inhibitors. Conclusion GS-PGx profiling at the time of diagnostics-focused genetic testing could be an efficient way to incorporate precision prescribing practices into the lifelong care of CMC. Impact Polypharmacy and genetic test utilization are both common in children with medical complexity. The role of repurposing genome sequencing data for pharmacogenetic profiling in children with medical complexity was previously unclear. We identified a high rate of medication use with clinically relevant drug-gene associations in this priority pediatric population and demonstrated that relevant pharmacogenetic information can be extracted from their existing genome sequencing data. Pharmacogenetic profiling at the time of diagnostics-focused genetic testing could be an efficient way to incorporate precision prescribing practices into the lifelong care of children with medical complexity.

BackgroundPublic health restrictions are an essential strategy to prevent the spread of COVID-19; however, unintended consequences of these interventions may have led to significant delays, deferrals and disruptions in medical care. This study explores clinical cases where the care of children was perceived to have been negatively impacted as a result of public health measures and changes in healthcare delivery and access due to the COVID-19 pandemic.MethodsThis study used a qualitative multiple case study design with descriptive thematic analysis of clinician-reported consequences of the COVID-19 pandemic on care provided at a children’s hospital. A quantitative analysis of overall hospital activity data during the study period was performed.ResultsThe COVID-19 pandemic has resulted in significant change to hospital activity at our tertiary care hospital, including an initial reduction in Emergency Department attendance by 38% and an increase in ambulatory virtual care from 4% before COVID-19, to 67% in August, 2020. Two hundred and twelve clinicians reported a total of 116 unique cases. Themes including (1) timeliness of care, (2) disruption of patient-centered care, (3) new pressures in the provision of safe and efficient care and (4) inequity in the experience of the COVID-19 pandemic emerged, each impacting patients, their families and healthcare providers.ConclusionBeing aware of the breadth of the impact of the COVID-19 pandemic across all of the identified themes is important to enable the delivery of timely, safe, high-quality, family-centred pediatric care moving forward.What’s newCOVID-19 disrupted typical paediatric care delivery.This study demonstrates the breadth of its’ impact on the delivery of timely, safe, equitable and patient and family centered care, highlighting considerations for paediatric providers as we move forward.

BackgroundDescriptions of the COVID-19 pandemic’s indirect consequences on children are emerging. We aimed to describe the impacts of the pandemic on children with medical complexity (CMC) and their families.MethodsA one-time survey of Canadian paediatricians using the Canadian Paediatric Surveillance Program (CPSP) was conducted in Spring 2021.ResultsA total of 784 paediatricians responded to the survey, with 70% (n=540) providing care to CMC. Sixty-seven (12.4%) reported an adverse health outcome due to a COVID-19 pandemic-related disruption in healthcare delivery. Disruption of the supply of medication and equipment was reported by 11.9% of respondents (n=64). Respondents reported an interruption in family caregiving (47.5%, n=252) and homecare delivery (40.8%, n=218). Almost 47% of respondents (n=253) observed a benefit to CMC due to COVID-19 related changes in healthcare delivery, including increased availability of virtual care and reduction in respiratory illness. Some (14.4%) reported that CMC were excluded from in-person learning when their peers without medical complexity were not.ConclusionCanadian paediatricians reported that CMC experienced adverse health outcomes during the COVID-19 pandemic, including disruptions to family caregiving and community supports. These results highlight the need for healthcare, community and education policymakers to collaborate with families to optimize their health.“What This Study Adds”Children with medical complexity experienced adverse health outcomes related to the direct and indirect effects of the COVID-19 pandemic.The COVID-19 pandemic has interrupted family caregiving, homecare support, access to education, and key supports for CMC and their families.Canadian paediatricians observed benefits associated with structural changes relating to the COVID-19 pandemic, including the expansion of virtual care and the reduced incidence of respiratory illness

Objective: To evaluate the immediate and sustained knowledge retention and sense of self-efficacy of homecare nurses following completion of a standardized competency-based tracheostomy education course. Safe discharge of children requiring tracheostomy with or without ventilation relies on the competence of homecare nurses. Study Design: Pragmatic, randomized controlled trial of 44 homecare nurses. Participants were randomized into the intervention group (n=21), which received the tracheostomy course, or the control group (n=23), which received an enterostomy and vascular access course. Multiple-choice question (MCQ) knowledge assessments and self-efficacy questionnaires were administered to both groups pre-course and post-course at 6 week, 3 month, 6 month, and 12 month follow-ups. Results: Twenty participants in the intervention group and 19 in the control group were included. Four withdrew from the study and two crossed over from the control into the intervention arm. The change in mean self-efficacy scores (total score = 100) was significantly higher in the intervention group than in the control group at 6 weeks (intervention (mean ± SD): 18.6±14.5; control: 6.6±20.4; p=0.04) and 3 months (intervention: 19.6±14.2; control: 5.2±17.0; p=0.007), and trended higher at 6 months (intervention: 18.0±14.5; control: 6.9±24.1; p=0.1) and 12 months (intervention: 16.9±15.0; control: 16.8±20.5; p=1.0). The change in mean MCQ assessment scores (total score = 20) trended higher in the intervention group than in the control group at 6 weeks (intervention (mean ± SD): 1.8±2.2; control: 1.6, ±2.9; p=0.8). Conclusions: Homecare nurses who attended the tracheostomy course demonstrated a higher sense of self-efficacy at long-term follow-up.

Primary Subject area Complex Care Background The Connecting2gether (C2) platform is a secure online information-sharing tool that aims to improve care for Children with Medical Complexity (CMC) and their families. A key feature of C2 is secure messaging that enables parents to communicate with their child’s healthcare providers (HCPs) in an easy and timely manner. Objectives The objectives of this project are to (1) describe the usage of the secure messaging system; and (2) conduct a thematic comparative evaluation of the secure messaging tool, and email and phone calls. Design/Methods This study is a sub-component of a larger project investigating the overall feasibility and acceptability of the C2 platform. Parents of CMC were recruited from a tertiary level Complex Care program to use the C2 platform for a period of 6 months. Messaging data was extracted from C2 usage reports, and phone and email documentation was extracted from the patient’s electronic medical record. Codes were developed iteratively through comprehensive review of the C2 messages. Message, phone, and email data were then coded by two investigators using thematic analysis. Quantitative data from C2 usage reports were analyzed using descriptive statistics. Results Thirty-four parents and 90 care team members, including HCPs, family, and patient information coordinators were registered on the platform. 4027 messages were exchanged on C2. On average, parents sent 33.4 messages and received 66.4 messages on C2. Of all messages on C2, 32.6% were related to comments, questions, and concerns about the platform itself and its features. Figure 1 demonstrates the thematic content of messages related to care, and highlights the differences in messaging content between the 3 forms of communication. Email and phone content focused primarily on clinical care whereas C2 messaging content also emphasized other aspects of care including education, provision of resources, and personal support. Conclusion This study demonstrates the role that a secure messaging system can have for parents of CMC in being active members of their child’s care. Phone and email were mostly used to discuss medications or clinical issues, whereas C2 enabled the discussion of the patient as a whole. The use of secure messaging can therefore complement other forms of communication between providers and families, instead of replacing them. Further research is needed to understand clinical outcomes associated with the use of secure messaging in order to understand its role in improving patient care and overall caregiver and provider experience.

Primary Subject area Complex Care Background Children with medical complexity (CMC) have medical fragility, complex chronic disease necessitating specialized care, functional disability, and/or high technology dependence. Housing is an important social determinant of health, yet research on prevalence and types of housing need in CMC is limited. Housing need encompasses unstable (frequent moves), inaccessible (lack of ramps/lifts), inadequate (major repairs needed), unsuitable (not enough bedrooms), or unaffordable housing. Given the association between housing and health, housing need may be an important consideration when caring for CMC. Objectives The primary objective was to describe the prevalence of and factors related to housing need in CMC. The secondary objective was to compare housing need between CMC, children with one chronic condition (Type 1 diabetes; CT1D) and healthy children (HC) to understand the relationship between chronic conditions and housing need. Design/Methods This was a cross-sectional descriptive study. Housing affordability, adequacy, suitability, stability, and accessibility were evaluated through surveys administered to caregivers of CMC, CT1D, and HC at a tertiary-care paediatric hospital using convenience sampling. The association of binary outcomes of housing need between groups was analyzed using logistic regression models, adjusting for sociodemographic factors (income, education, employment, geography, immigration status). Results 453 caregivers participated (Table 1). Compared to caregivers of HC, caregivers of CMC had higher odds of reporting one or more moves in the last two years (1.3 times), having safety concerns (3 times), using a common area as a bedroom (5.2 times), and experiencing housing stress (3.2 times), after sociodemographic factors were adjusted for (Table 2). Families of CT1D also had elevated odds of some indicators of housing need compared to HC, although to a lesser extent than CMC. 62.2% of CMC indicated they had to reduce spending on basics in order to afford their rent/mortgage, compared to 35.9% of CT1D and 25.2% of HC. Nearly two-thirds of CMC (60.2%) reported a need for accessibility accommodations in their home. Of those who installed accommodations, 62.9% felt the installations were a financial burden (cost ranged from $800-$80,000). Conclusion Families of CMC had higher odds of reporting unstable, inadequate, unsuitable, and stressful housing compared to HC even after sociodemographic factors were accounted for, suggesting an association between complexity of child health conditions and housing need. Access to appropriate housing may improve the health of CMC. Health care providers can screen for housing need, become familiar with housing interventions, and advocate for improved resources to address housing need in CMC.