Evaluating a Transition Workbook for Childhood Cancer Survivors: a Pilot Study.

Many childhood cancer survivors (CCS) could benefit from improved knowledge about their cancer diagnosis, the treatments received, and associated risks during the period when they transition into adult aftercare. Interventions that support the transition from pediatric to adult care have showed high patient satisfaction. We developed an educational workbook, "Life After the Janeway," to support CCS transition into adult care. We evaluated its understandability, actionability, and overall acceptability, using an online survey based on the Agency for Healthcare Research and Quality's Patient Education Materials Assessment Tool for Printable Material (PEMAT-P). Ten participants completed the survey. The overall PEMAT-P score was 94.06 (SD ± 7.40). Mean scores for understandability and actionability were 92.83 (SD ± 8.79) and 98.15 (SD ± 5.24) respectively. Interrater reliability found strong agreement across survey items. Participants support efforts to improve transition and felt positive about the intervention. The workbook was shown to be understandable and actionable to likely users. The next steps will focus on delivering the workbook to CCS going through their transition of care and exploring developing the workbook in an electronic format.

Standardizing the categorizations of models of aftercare for survivors of childhood cancer.

BACKGROUND: With significant improvements in the survival rates for most childhood cancers, there is increased pressure to determine how follow-up or aftercare for survivors is best structured. MAIN BODY: Previous work in this area has not been consistent in how it categorizes models of aftercare, which risks confusion between studies and evaluations of different models. The adoption of a standardized method for classifying and describing different models of aftercare is necessary in order to maximize the applicability of the available evidence. We identify some of the different ways models of aftercare have been classified in previous research. We then propose a revised taxonomy which allows for a more consistent classification and description of these models. The proposed model bases the classification of models of aftercare on who is the lead provider, and then collects data on five other key features: which other providers are involved in providing aftercare, where care is provided, how are survivors engaged, which services are provided, and who receives aftercare. CONCLUSION: There is a good deal of interest in the effectiveness of different models of aftercare. Future research in this area would be assisted by the adoption of a shared taxonomy that will allow programs to be identified by their structural type.

Scholarly training objectives and requirements for paediatric residents in Canada.

In the absence of national standards for scholarly requirements, paediatric resident training varies significantly across Canadian programs. This variability may contribute to significant differences in trainee experiences and productivity. A panel of coordinators of paediatric resident research programs from across Canada met in 2014, to share experiences and identify barriers to successful resident scholarly activity. A survey of all programs was completed in 2015. A scoping review and series of meetings led to the development of a proposed list of expectations, timelines for successful completion and consequences for not completing a scholarly project. We propose a harmonized list of scholarly competencies and activities for paediatric residents in Canada to accomplish before completing their training. We also propose that programs implement standardized timelines and consequences in the event that a resident does not meet their program's scholarly expectations.

Consolidated principles for screening based on a systematic review and consensus process.

BACKGROUND: In 1968, Wilson and Jungner published 10 principles of screening that often represent the de facto starting point for screening decisions today; 50 years on, are these principles still the right ones? Our objectives were to review published work that presents principles for population-based screening decisions since Wilson and Jungner's seminal publication, and to conduct a Delphi consensus process to assess the review results. METHODS: We conducted a systematic review and modified Delphi consensus process. We searched multiple databases for articles published in English in 1968 or later that were intended to guide population-based screening decisions, described development and modification of principles, and presented principles as a set or list. Identified sets were compared for basic characteristics (e.g., number, categorization), a citation analysis was conducted, and principles were iteratively synthesized and consolidated into categories to assess evolution. Participants in the consensus process assessed the level of agreement with the importance and interpretability of the consolidated screening principles. RESULTS: We identified 41 sets and 367 unique principles. Each unique principle was coded to 12 consolidated decision principles that were further categorized as disease/condition, test/intervention or program/system principles. Program or system issues were the focus of 3 of Wilson and Jungner's 10 principles, but comprised almost half of all unique principles identified in the review. The 12 consolidated principles were assessed through 2 rounds of the consensus process, leading to specific refinements to improve their relevance and interpretability. No gaps or missing principles were identified. INTERPRETATION: Wilson and Jungner's principles are remarkably enduring, but increasingly reflect a truncated version of contemporary thinking on screening that does not fully capture subsequent focus on program or system principles. Ultimately, this review and consensus process provides a comprehensive and iterative modernization of guidance to inform population-based screening decisions.

Hospitalizations due to self-poisoning at a Canadian paediatric hospital.

BACKGROUND: Adolescent self-harm by drug ingestion (i.e., self-poisoning) is a serious mental health issue. In Newfoundland and Labrador (NL), paediatricians suspected an increase in the number of adolescents hospitalized due to self-poisoning in the province. Our primary aim was to evaluate the number of hospital admissions of adolescents for self-poisoning between 2008 and 2013 to determine whether there was indeed an increase in hospitalizations. We also wanted to examine the characteristics of these admissions to better understand this patient population. METHOD: A retrospective chart review was conducted to identify cases of self-poisoning admitted to the only paediatric hospital in NL over a 6-year period. A data abstraction form was developed to collect patient demographic information and details about these incidences of self-poisoning. RESULTS: A total of 156 patient admissions were identified; 97 (62.2%) first time admissions and 59 (37.8%) recurrent admissions. The number of admissions for self-poisoning increased over the study period from 2.1% of total hospital admissions in 2008 to 6.5% in 2013. Mean (SD) age at the time of admission was 15.4 years, 122 patients (78.2%) were female and 86.5% had at least 1 previous mental health diagnosis. The most common drugs ingested were analgesics (38.0%) and antidepressants (32.2%), with 73 patients (48.7%) ingesting multiple drugs. CONCLUSIONS: The study contributes to the growing recognition of adolescent self-poisoning as a serious paediatric mental health issue. It also confirmed that an increase in adolescent hospitalizations due to self-poisoning has occurred in NL. Further research is warranted to identify effective prevention strategies for this serious problem.

The unseen high-cost users: children and youth with mental illness.

Often neglected from discussions of high-cost healthcare users are children and youth with mental health issues. But when considered from the perspective of all of the various public and community services they require, and their impact on families, these children should be considered in initiatives to improve care for frequent healthcare users. For children with mental illness, because of the fragmented services they receive, there are clear opportunities for gains in patient care through better clinical and social care integration, even without significant additional investments. A key barrier to improving care for these children and youth is better understanding their care pathways. We conclude by describing a new multidisciplinary research project, which is taking an inter-sectorial view of how youth and their families access mental health services across the four Atlantic Canadian provinces, to provide the knowledge basis to improve care for these vulnerable, high-cost patients.

Community-associated methicillin-resistant Staphylococcus aureus in a pediatric emergency department in Newfoundland and Labrador.

BACKGROUND: First-generation cephalosporins and antistaphylococcal penicillins are typically the first choice for treating skin and soft tissue infections (SSTI), but are not effective for infections caused by methicillin-resistant Staphylococcus aureus (MRSA). It is currently unclear what percentage of SSTIs is caused by community-associated MRSA in different regions in Canada. OBJECTIVES: To determine the incidence of MRSA in children presenting to a pediatric emergency department with SSTI, and to determine which antibiotics were used to treat these infections. METHODS: All visits to a pediatric emergency department were reviewed from April 15, 2010 to April 14, 2011. Diagnoses of cellulitis, abscess, impetigo, folliculitis and skin infection (not otherwise specified) were reviewed in detail to determine whether a culture was taken and which antibiotic was prescribed. RESULTS: There were 367 cases of SSTI diagnosed over the study period. Forty-five (12.3%) patients had lesions that were swabbed for culture and sensitivity. S aureus was the most common organism found, with 14 (66%) methicillin-sensitive cases and seven (33%) methicillin-resistant cases. Of the seven cases of MRSA identified, only one patient had clear risk factors for hospital-acquired MRSA. First-generation cephalosporins were initially prescribed for 280 (76%) patients. CONCLUSIONS: The overall incidence of MRSA in the population presenting to a pediatric emergency department in Newfoundland and Labrador appeared to be low, although only a small percentage of infections were cultured. At this time, there appears to be no need to change empirical antibiotic coverage, which remains a first-generation cephalosporin.

HISTORIQUE: Les céphalosporines de première génération et les pénicillines antistaphylococciques sont généralement le traitement de première intention des infections des tissus cutanés et des tissus mous (ITCM), mais ne sont pas efficaces contre les infections causées par le Staphylococcus aureus résistant à la méthicilline (SARM). On ne sait pas quel pourcentage d'ITCM est causé par un SARM d'origine non nosocomiale dans diverses régions du pays. OBJECTIFS: Déterminer l'incidence de SARM chez les enfants qui consultent à une salle d'urgence pédiatrique en raison d'une ITCM, ainsi que les antibiotiques utilisés pour traiter ces infections. MÉTHODOLOGIE: Les chercheurs ont analysé toutes les visites à la salle d'urgence effectuées entre le 15 avril 2010 et le 14 avril 2011. Ils ont examiné attentivement les diagnostics de cellulite, d'abcès, d'impétigo, de folliculite et d'infection cutanée (non autrement spécifiée) pour déterminer si une culture avait été effectuée et quel antibiotique avait été prescrit. RÉSULTATS: Au total, 367 cas d'ITCM ont été diagnostiqués pendant la période de l'étude. Quarante-cinq patients (12,3 %) avaient des lésions qui avaient fait l'objet d'une analyse de culture et de sensibilité. Le S aureus était l'organisme le plus observé, 14 cas (66 %) étant sensibles à la méthicilline et sept (33 %) étant résistants à la méthicilline. Dans les sept cas de SARM, un seul patient présentait des facteurs de risque évidents de SARM d'origine nosocomiale. Des céphalosporines de première génération avaient d'abord été prescrites à 280 patients (76 %). CONCLUSIONS: L'incidence globale de SARM au sein de la population qui consulte à une salle d'urgence pédiatrique de Terre-Neuve-et-Labrador semble faible, même si seulement un petit pourcentage de ces infections a fait l'objet d'une culture. À l'heure actuelle, il ne semble pas nécessaire de modifier la couverture antibiotique empirique, soit une céphalosporine de première génération.

Poor access to timely pain reduction interventions for pediatric patients with supracondylar humerus fracture.

OBJECTIVE: The purpose of this study was to describe the use of analgesic interventions in children with acute supracondylar fractures presenting to a pediatric emergency department (ED) and to explore the relationship between timely interventions and severity of injury. METHODS: This was a retrospective cohort study. Structured chart reviews were conducted on all eligible cases of acute supracondylar humerus fracture presenting to a single pediatric ED over a 5-year period ending in December 2009. Two interventions were studied: administration of a systemic analgesic and placement of an immobilizing backslab. Criteria for timeliness were administration of an analgesic within 30 minutes from triage and placement of a backslab before radiography. Cases were dichotomized as nonsevere or severe based on whether the fracture was treated with casting alone or with another orthopedic intervention (closed reduction in the ED or any procedure in the operating room). RESULTS: Of 160 eligible cases, 116 were classified as nonsevere and 44 as severe. The proportions receiving a timely analgesic were 3% and 11%, respectively, in these groups (P = 0.04 for difference). For backslab application, 16% and 61% received timely treatment in the nonsevere and severe groups, respectively (P = 0.000 for difference). CONCLUSIONS: Children presenting to a pediatric ED with a painful injury had low access to early systemic analgesics and backslab immobilization. Many factors may have played a role, including lack of mandated documentation of a formal pain score and lack of a medical directive allowing triage nurses to administer analgesics in the institution studied.

Young adults with eating disorders perspectives on educational resources to support the transition into adult medicine: a thematic analysis.

BACKGROUND: Eating disorders (EDs) commonly develop in adolescence and can be a chronic condition. Once patients reach the age when it is no longer permitted or appropriate for them to be seen in a children's healthcare setting, they will need to transition into adult-focused care. This transition period can be challenging, with increased risks of negative health outcomes and disruptions in care. Appropriate educational resources could be an effective support for patients during this transition. Our objectives were to engage patients about the value of developing educational supports and determine how these supports should be structured to be most useful to young adults with EDs. METHODS: Patients who had transitioned out of a hospital-based ED program between 2017 and 2020 were invited to participate in a semi-structured interview. Data were analyzed using thematic analysis and qualitative description. RESULTS: Six young adults (5 females and 1 male) with EDs were interviewed. All participants thought it would be helpful to have an educational resource. Three main themes and seven subthemes were identified. Themes identified related to the unique challenges of transition for ED patients given the age of onset and cycle of symptoms; issues in adult care related to comorbidities and new level of autonomy; and the value of educational resources as both a connection tool and a benchmark. Participants also thought it would be useful to include in any educational resource a summary of their previous treatments, information regarding the transition process, a list of main healthcare providers they saw for their ED, a description of the differences and expectations of the adult system, a list of their follow up appointments, and a list of community and emergency mental health resources. CONCLUSIONS: Participants said that educational supports can play a useful role for young adults with EDs during their transition into adult care. They also provided valuable insights into the desired contents of such supports and expanded on the roles that educational resources could serve for ED patients.

Most adolescents who have an eating disorder will reach an age when it is no longer appropriate for them to receive care in a children's health program. They will then need to transition to an adult-focused program. This transition period can be challenging, with increased risks of negative health outcomes and disruptions in care. One approach for better supporting patients during transition is through the development of appropriate educational resources. Before developing these resources, it is important to hear from patients about how they should be structured to be as useful as possible. We interviewed six patients who had recently transitioned out of a pediatric eating disorder program about the value of an educational transition resource and what should be included in it. Patients identified several unique transition issues for young adults with eating disorders. We identified valuable insights and seven key themes from these interviews. While all patients recognized the value of educational resources, rather than being just a static source of information, they envisioned a resource that could also be a dynamic record of their previous care and a tool for engaging with their new adult-focused health care providers.

A mobile health intervention for improving the technique of inhaled medications among children with asthma: A pilot study.

Objective: BreatheSuite MDI is a Bluetooth-enabled inhaler attachment and mobile application which aims to improve asthma control. The objective was to compare pressurized metered dose inhaler (pMDI) technique and asthma control test (ACT) scores pre- and post-use of the device and mobile application. Secondary objectives were to assess user satisfaction and therapy adherence. Methods: Patients between the ages of 8 and 18 were recruited from several pediatric asthma clinics. Technique and ACT scores were assessed at baseline. Users were given no prompts on technique during the first month of device use. For the subsequent three months, users were given technique scores through the mobile application after each inhaler use and provided weekly performance summaries. At the end of the study, technique and ACT scores were analyzed and an exit survey was completed. Conditional logistic regression was used to examine the association between well-controlled asthma (ACT score > 19) and the intervention. Results: 24 patients completed the study. Technique scores improved following the use of Breathesuite (44.19 vs. 62.54; P = 0.01). Well-controlled asthma did not significantly improve (OR = 1.20 [0.4-3.9], P = 0.76). 87% of study subjects agreed or strongly agreed that their asthma control improved while using BreatheSuite; 79% were satisfied with the device and mobile application; and 91% preferred using the device compared to a standard logbook to track inhaler usage. Conclusions: In this pilot study, the use of BreatheSuite device was associated with improved technique scores. These results need to be confirmed by a randomized controlled trial. There was high user satisfaction with the BreatheSuite device.

"I Know How to Advocate": Parents' Experiences in Advocating for Children and Youth Diagnosed With Autism Spectrum Disorder.

BACKGROUND: Parental advocacy is a dynamic process that changes depending on the circumstances and needs of the child and parent. Communication deficits related to an Autism Spectrum Disorder (ASD) diagnosis often necessitate parental advocacy. This study describes how parents and caregivers of children and youth diagnosed with ASD engage in parental advocacy, the challenges they encounter and the advocacy skills they develop. METHOD: We used descriptive exploratory methodology informed by reflexive thematic analysis. The aim of the study was to explore advocacy in parents and caregivers of children and youth diagnosed with ASD. RESULTS: We conducted in-depth, semi-structured interviews with 15 parents of children and youth with an ASD diagnosis living in 4 provinces of Atlantic Canada. The pathway in parents' advocacy journey included: (1) Expressing concerns; (2) Seeking help, assessment, and diagnosis; (3) Acquiring services; (4) Removing barriers; and (5) Developing advocacy skills. CONCLUSIONS: Our findings illustrate the process of parental advocacy, skill development, and the barriers parents encounter in advocating for their children with ASD. Future research might explore how health professionals can support parents' advocacy efforts.

Accepting new patients: What does the public think about Ontario's policy?

Objective To gauge the public's opinion of the College of Physicians and Surgeons of Ontario's (CPSO's) policy on how primary care physicians should accept new patients. Design Deliberative citizens' council. Setting Toronto, Ont. Participants Twenty-five public members of the Toronto Health Policy Citizens' Council. Methods A 2-day council session was held, during which the new policy was presented and council members heard from experts with various perspectives on the issues involved. Council members then deliberated and developed recommendations concerning the policy. Main findings Council members agreed that a first-come, first-served policy was an appropriate method for family physicians to use when accepting new patients. They thought the policy's exception, which allows physicians not to accept patients based on a lack of clinical competency in an area, should be clarified in order to avoid it being used as an excuse to inappropriately screen patients. Counsel members also encouraged the CPSO to publicize its policy as widely as possible, so that potential patients undergoing screening in the future will recognize that this goes against the CPSO's policy and can take appropriate action if they wish. Conclusion How family physicians accept new patients into their practices is a sensitive issue. The CPSO policy provides guidance on how new patients should be admitted, which, if it is appropriately enacted, seems reasonable to informed members of the public.

Transition from pediatric to adult aftercare for survivors of pediatric cancer in Newfoundland and Labrador: a qualitative study.

BACKGROUND: Childhood cancer survivors (CCSs) face increased risks during the period when they leave pediatric care and transition into adult-focused aftercare. We examined the experiences of CCSs entering adult-focused aftercare to gain a better understanding of current transition practices and barriers to transition, and to identify opportunities for improving care. METHODS: We conducted a qualitative study using in-person and telephone semi-structured interviews. Childhood cancer survivors who recently transitioned out of pediatric care and health care providers (HCPs) who provide care for CCSs in Newfoundland and Labrador were identified using purposive sampling. Participants were interviewed between July 2017 and March 2019. Data were analyzed using both qualitative descriptive and thematic analysis. RESULTS: We conducted interviews with 5 CCSs and 9 HCPs. All CCSs interviewed reported receiving aftercare through their pediatric oncology program; only 2 reported receiving any form of aftercare in the adult setting. The lack of a structured transition process for CCSs in the province emerged as a theme in this study. Interview participants identified several barriers to transition: the added challenges for survivors in rural areas, changes in the availability of services after the transition to adult-focused aftercare, challenges associated with navigating the adult system, and a lack of education on transitioning into adult aftercare. INTERPRETATION: We found that there was little preparation for the transition of CCSs into adult care, and their aftercare was disrupted. Programs serving CCSs have opportunities to improve care by standardizing and better supporting these transitions, for example through the development of context-appropriate educational resources.

Pediatric high users of Canadian hospitals and emergency departments.

INTRODUCTION: Few studies have examined the most frequent pediatric users of hospital services. Our objective was to determine the clinical diagnoses, demographic characteristics, and medical severity of high-use pediatric patients in Canada. METHODS: We conducted a retrospective analysis of patients <18 years of age who either were admitted to hospital or visited an emergency department (ED) using the Canadian Institute for Health Information's (CIHI) Dynamic Cohort of Complex, High System Users. The analysis of hospital admission data excluded Quebec and Manitoba. ED data was only available for Alberta and Ontario. RESULTS: 121 104 patients were identified as the most frequent hospital users and 459 998 patients as the most frequent ED users. High users were more likely to reside in a rural community, to be in a lower income quintile, and face more deprivation. The most frequent conditions for hospitalization for high use patients were disorders related to length of prematurity and fetal growth, respiratory and cardiovascular disorders specific to the perinatal period, and haemorrhagic and haematological disorders of fetus and newborn. For the most frequent ED users, the most common clinical diagnoses were acute upper respiratory infections, injuries to the head, and diseases of the middle ear and mastoid. CONCLUSION: Pediatric high users by frequency of hospital and ED services are a distinct population. Better understanding their characteristics will allow for more appropriate planning of children's health services and help identify areas for effective preventive or quality improvement initiatives.

Quality of Primary Care for the Adult Population With Autism Spectrum Disorder: Protocol for a Scoping Review.

BACKGROUND: A strong primary care system is vital to overall health. Research on the primary care of people with autism spectrum disorder (ASD) has mostly focused on children. A synthesis of the existing literature related to the quality of primary care for the adult population with ASD would elucidate what is known about the topic as well as inform future research and clinical practice. OBJECTIVE: The purpose of our scoping review is to describe what is known about the quality of primary care for adults with ASD and identify knowledge gaps. METHODS: Prior to beginning the literature search, we reviewed literature related to defining both primary care and primary care quality to establish the context and concept of the research question. The search strategy was designed and executed by a research librarian. The MEDLINE, CINAHL, EMBASE, PsycINFO, and ProQuest Dissertations and Theses databases were searched for relevant literature. Grey literature will include relevant reports from government websites and associations with a focus on ASD. Two members of the research team will independently screen the academic and grey literature. Quantitative, qualitative, or mixed methods study designs involving the quality of primary care services or patient-centered care for adults with ASD are eligible for inclusion in our scoping review. Studies that make it past the full-text review will undergo data extraction and quality appraisal by 2 independent reviewers. The data extraction results will be presented in a tabular format to clearly present what is known about the quality of primary care for adults with ASD; this table will be accompanied by a narrative synthesis. Literature selected for extraction will be coded for themes, which will form the basis of a thematic synthesis. The scoping review will follow the guidance proposed by the Joanna Briggs Institute. RESULTS: The search of electronic databases was conducted in October 2020, and it returned 2820 results. This research is still in progress. The results from our scoping review are expected to be available by fall 2021. CONCLUSIONS: The results from our scoping review will be useful for guiding future research on the quality of primary care for adults with ASD. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): PRR1-10.2196/28196.

A Multi-Intervention Campaign Lowers Pediatric and Young Adult Diabetic Ketoacidosis Hospitalizations in a Canadian Province.

OBJECTIVES: The Newfoundland and Labrador diabetic ketoacidosis Project (NLdkaP) is a multi-intervention, province-wide project aimed at lowering rates of diabetic ketoacidosis (DKA) within the pediatric and young adult populations. METHODS: The NLdkaP interventions were first selected, developed and implemented. We then conducted a retrospective study of hospitalization data over three 2-year periods: pre-, during and post-NLdkaP. Data included demographic factors, DKA hospitalizations and length of hospital stay. RESULTS: There were 412 DKA hospitalizations over the study period. Before the NLdkaP, the provincial hospitalization rate of DKA for patients <25 years of age was 55.61 per 100,000. During the NLdkaP, the rate dropped to 38.48 per 100,000 (p<0.001). After the NLdkaP, the rate rose to 54.53 per 100,000 (p<0.001). Hospitalization rates were highest for females (p<0.001) and for those in the 19- to 24-year age group (p<0.001). CONCLUSIONS: The NLdkaP was associated with decreased rates of DKA hospitalizations, but the rates remained relatively stable in both the pre- and postintervention periods. Although the approach and resources developed in the NLdkaP appear effective, continuous preventive efforts are needed to sustain reductions in DKA hospitalizations.