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1.
Pediatr Res ; 2024 May 15.
Artículo en Inglés | MEDLINE | ID: mdl-38750294

RESUMEN

BACKGROUND: Nasogastric tube (NGT) feeding is used for children unable to tolerate adequate nutrition orally to sustain growth and development. This vulnerable population is at risk of gaps in care because they often lack a medical home due to the transitional nature of the technology. This study explores perspectives and challenges of family caregivers (FCs) of children requiring NGTs transitioning from hospital to home. METHODS: Semi-structured qualitative interviews were conducted with FCs at the Hospital for Sick Children and Children's Hospital of Eastern Ontario. Research ethics approval was obtained (SK REB# 1000064641, CHEO REB# 19/133X). Written informed consent was obtained. RESULTS: Thirteen interviews revealed FCs feeling overwhelmed and uncomfortable with first communication of the NGT but learned to manage NGTs with training and virtual care support over time. Initial transition home was described as challenging due to physical, emotional, and financial strain associated with constant management of NGTs. CONCLUSIONS: Our study describes the importance of emotional support and additional time for decision making during initial communication to FCs of their child's NGT need, and access to specialized healthcare professionals after transitioning home. Future programs should focus on personalized education and psychosocial support for FCs of children with NGTs at home. IMPACT: This study delves into the challenges faced by family caregivers (FCs) of children requiring nasogastric tube (NGT) feeding when returning home from the hospital. There is a pressing need for more time for FC decision-making and emotional support during the initial communication of the need for an NGT for their child. In addition, FCs require ongoing 24/7 support including access to healthcare professionals specialized in NGT care after the initial transition home. The study highlights the need for personalized education and psychosocial supports for FCs of children with NGTs to improve their experiences at home.

2.
Clin Infect Dis ; 2023 Dec 12.
Artículo en Inglés | MEDLINE | ID: mdl-38084906

RESUMEN

BACKGROUND: There are limited data on the viral dynamics of 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 18 years and younger with PCR confirmed SARS-CoV-2 between February 1, 2022 and March 14, 2022. SARS-CoV-2 testing occurred on daily samples for 10 days; a subset of participants completed daily rapid antigen testing (RAT). 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. FINDINGS: 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 of 87 (49%) and 52 (60%) had met the non-infectious thresholds, respectively. Of the 50 participants completing 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. INTERPRETATION: Children often met the study-defined non-infectiousness threshold on the day after symptom resolution. RAT tests were often negative early in the course of illness and should not be relied on to exclude infection. CLINICAL TRIALS REGISTRATION: NCT05240183.

3.
Pediatr Res ; 93(4): 905-910, 2023 03.
Artículo en Inglés | MEDLINE | ID: mdl-36167815

RESUMEN

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.


Asunto(s)
Pruebas Genéticas , Farmacogenética , Niño , Humanos , Mapeo Cromosómico
4.
Pediatr Res ; 94(5): 1744-1753, 2023 11.
Artículo en Inglés | MEDLINE | ID: mdl-37277605

RESUMEN

BACKGROUND: Paediatric inflammatory multisystem syndrome (PIMS) is a rare condition temporally associated with SARS-CoV-2 infection. Using national surveillance data, we compare presenting features and outcomes among children hospitalized with PIMS by SARS-CoV-2 linkage, and identify risk factors for intensive care (ICU). METHODS: Cases were reported to the Canadian Paediatric Surveillance Program by a network of >2800 pediatricians between March 2020 and May 2021. Patients with positive versus negative SARS-CoV-2 linkages were compared, with positive linkage defined as any positive molecular or serologic test or close contact with confirmed COVID-19. ICU risk factors were identified with multivariable modified Poisson regression. RESULTS: We identified 406 children hospitalized with PIMS, including 49.8% with positive SARS-CoV-2 linkages, 26.1% with negative linkages, and 24.1% with unknown linkages. The median age was 5.4 years (IQR 2.5-9.8), 60% were male, and 83% had no comorbidities. Compared to cases with negative linkages, children with positive linkages experienced more cardiac involvement (58.8% vs. 37.4%; p < 0.001), gastrointestinal symptoms (88.6% vs. 63.2%; p < 0.001), and shock (60.9% vs. 16.0%; p < 0.001). Children aged ≥6 years and those with positive linkages were more likely to require ICU. CONCLUSIONS: Although rare, 30% of PIMS hospitalizations required ICU or respiratory/hemodynamic support, particularly those with positive SARS-CoV-2 linkages. IMPACT: We describe 406 children hospitalized with paediatric inflammatory multisystem syndrome (PIMS) using nationwide surveillance data, the largest study of PIMS in Canada to date. Our surveillance case definition of PIMS did not require a history of SARS-CoV-2 exposure, and we therefore describe associations of SARS-CoV-2 linkages on clinical features and outcomes of children with PIMS. Children with positive SARS-CoV-2 linkages were older, had more gastrointestinal and cardiac involvement, and hyperinflammatory laboratory picture. Although PIMS is rare, one-third required admission to intensive care, with the greatest risk amongst those aged ≥6 years and those with a SARS-CoV-2 linkage.


Asunto(s)
COVID-19 , SARS-CoV-2 , Humanos , Masculino , Niño , Preescolar , Femenino , COVID-19/epidemiología , COVID-19/terapia , Canadá/epidemiología , Síndrome de Respuesta Inflamatoria Sistémica/diagnóstico , Síndrome de Respuesta Inflamatoria Sistémica/epidemiología
5.
Pediatr Blood Cancer ; : e30534, 2023 Jun 30.
Artículo en Inglés | MEDLINE | ID: mdl-37391864

RESUMEN

BACKGROUND: Approximately 70% of children diagnosed with a medulloblastoma will become long-term survivors. Medulloblastoma therapy frequently causes long-term morbidities in survivors, which places a considerable burden on parental caregivers. We aimed to explore the experience of parental caregivers caring for medulloblastoma survivors. METHODS: We conducted a qualitative study using grounded theory thematic analysis. We used semi-structured parental caregiver interviews to explore family experiences, social circumstances, and family-reported impact within families of children who had survived medulloblastoma. Parental caregivers were recruited from specialized survivor clinics at two large quaternary centers in Toronto, Canada. RESULTS: Sixteen of 22 eligible families participated, and 20 parental caregiver interviews were completed. Survivors were a median age of 6 years (range: 1-9 years) at diagnosis, and were 9.5 years (range: 5-12 years) from treatment at the time of the interview. Three major themes and associated subthemes emerged: (i) parental caregivers described significant long-term challenges associated with their child's survivorship. Subthemes included medical treatment sequelae, school issues and behavioral concerns, and surveillance and access to care. (ii) Parental caregivers recognized the impact that their child's quality of life (QOL) had on both their personal and family QOL. Subthemes included parental QOL, parental mental health and coping, spousal relationships, and effects on the family unit as a whole. (iii) Parental caregivers reported experiencing conflicting emotions related to their child's survivorship status and long-term effects. Subthemes included feeling happiness with concurrent worry, fear, and stress, as well as concerns about the future. CONCLUSIONS: Parental caregivers of medulloblastoma survivors experience long-term challenges, with personal and family impacts. Further work is needed to improve care models and support systems for families with a child who has survived medulloblastoma.

6.
Healthc Q ; 25(4): 49-55, 2023 Jan.
Artículo en Inglés | MEDLINE | ID: mdl-36826241

RESUMEN

To address severe adult in-patient capacity pressures during the COVID-19 pandemic, 15 community hospitals were mandated to close their in-patient paediatric units (167 beds) and transfer paediatric in-patients to a single paediatric tertiary hospital. The tertiary hospital increased bed capacity through a surge plan activation, while community hospitals redeployed resources to fill the gaps in adult care. Also, 530 patients were transferred solely to increase adult bed capacity during the closure. Several factors enabled the system to function collaboratively. Closures increased the potential adult in-patient capacity by 6,740 bed days and demonstrated an unprecedented system-wide approach to the provision of integrated paediatric care across the region.


Asunto(s)
COVID-19 , Adulto , Humanos , Niño , Pandemias , Capacidad de Camas en Hospitales , Atención a la Salud , Hospitales , Unidades de Cuidados Intensivos , Capacidad de Reacción
7.
J Pediatr ; 250: 83-92.e8, 2022 11.
Artículo en Inglés | MEDLINE | ID: mdl-35810772

RESUMEN

OBJECTIVE: 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. STUDY DESIGN: 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. RESULTS: 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. CONCLUSION: 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.


Asunto(s)
Depresión , Hermanos , Humanos , Niño , Adolescente , Ansiedad , Enfermedad Crónica , Evaluación de Resultado en la Atención de Salud , Estudios Observacionales como Asunto
8.
Dev Med Child Neurol ; 64(2): 200-208, 2022 02.
Artículo en Inglés | MEDLINE | ID: mdl-34462917

RESUMEN

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.


Asunto(s)
Investigación Biomédica , Consenso , Países Desarrollados , Enfermedades del Sistema Nervioso , Cuidadores , Niño , Comorbilidad , Técnica Delphi , Familia , Humanos , Enfermeras Practicantes , Médicos , Participación de los Interesados
9.
BMC Pediatr ; 22(1): 496, 2022 08 23.
Artículo en Inglés | MEDLINE | ID: mdl-35999625

RESUMEN

BACKGROUND: Descriptions 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. METHODS: A one-time survey of Canadian paediatricians using the Canadian Paediatric Surveillance Program (CPSP) was conducted in Spring 2021. RESULTS: A 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. CONCLUSION: Canadian paediatricians reported that CMC experienced adverse health outcomes during the COVID-19 pandemic, including disruptions to family caregiving and community supports. They also describe benefits related to the pandemic including the expansion of virtual care. These results highlight the need for healthcare, community and education policymakers to collaborate with families to optimize their health.


Asunto(s)
COVID-19 , COVID-19/epidemiología , Canadá/epidemiología , Niño , Humanos , Pandemias , Pediatras , Encuestas y Cuestionarios
10.
J Genet Couns ; 31(2): 523-533, 2022 04.
Artículo en Inglés | MEDLINE | ID: mdl-34674352

RESUMEN

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.


Asunto(s)
Comunicación , Padres , Secuencia de Bases , Niño , Humanos , Padres/psicología , Investigación Cualitativa , Enfermedades Raras
11.
Paediatr Child Health ; 27(3): 141-146, 2022 Jun.
Artículo en Inglés | MEDLINE | ID: mdl-35712035

RESUMEN

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.

12.
Paediatr Child Health ; 27(4): 232-242, 2022 Jul.
Artículo en Inglés, Inglés | MEDLINE | ID: mdl-35859678

RESUMEN

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.

13.
Paediatr Child Health ; 27(4): 232-242, 2022 Jul.
Artículo en Inglés, Inglés | MEDLINE | ID: mdl-35859683

RESUMEN

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.

14.
Paediatr Child Health ; 27(8): 451-453, 2022 Dec.
Artículo en Inglés | MEDLINE | ID: mdl-36756238

RESUMEN

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.

15.
Paediatr Child Health ; 27(8): 503-511, 2022 Dec.
Artículo en Inglés, Francés | MEDLINE | ID: mdl-36583075

RESUMEN

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.

16.
CMAJ ; 193(38): E1483-E1493, 2021 09 27.
Artículo en Inglés | MEDLINE | ID: mdl-34580141

RESUMEN

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.


Asunto(s)
COVID-19/epidemiología , Hospitalización , Índice de Severidad de la Enfermedad , Enfermedad Aguda , Adolescente , COVID-19/diagnóstico , COVID-19/etiología , COVID-19/terapia , Prueba de COVID-19 , Canadá/epidemiología , Niño , Preescolar , Comorbilidad , Femenino , Humanos , Hallazgos Incidentales , Lactante , Recién Nacido , Masculino , Estudios Prospectivos , Vigilancia en Salud Pública , Factores de Riesgo
17.
Pediatr Blood Cancer ; 68(11): e29295, 2021 11.
Artículo en Inglés | MEDLINE | ID: mdl-34398511

RESUMEN

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.


Asunto(s)
Antineoplásicos/efectos adversos , Asparaginasa/efectos adversos , Vacunas contra la COVID-19/uso terapéutico , COVID-19/prevención & control , Hipersensibilidad a las Drogas/complicaciones , Polietilenglicoles/efectos adversos , Leucemia-Linfoma Linfoblástico de Células Precursoras/complicaciones , Adolescente , Adulto , Vacuna BNT162 , COVID-19/complicaciones , Vacunas contra la COVID-19/administración & dosificación , Vacunas contra la COVID-19/efectos adversos , Niño , Hipersensibilidad a las Drogas/etiología , Humanos , Leucemia-Linfoma Linfoblástico de Células Precursoras/tratamiento farmacológico , Adulto Joven
18.
BMC Health Serv Res ; 21(1): 300, 2021 Apr 01.
Artículo en Inglés | MEDLINE | ID: mdl-33794885

RESUMEN

BACKGROUND: Children 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. METHODS: This 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. RESULTS: Thirty-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). CONCLUSION: Parents, 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.


Asunto(s)
Comunicación , Padres , Niño , Hospitales , Humanos , Investigación Cualitativa
19.
Paediatr Child Health ; 26(1): 1-3, 2021 Feb.
Artículo en Inglés | MEDLINE | ID: mdl-33537103

RESUMEN

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.

20.
Paediatr Child Health ; 26(8): 504-505, 2021 Dec.
Artículo en Inglés | MEDLINE | ID: mdl-34987678

RESUMEN

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

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