The Impact of Parental Presence Restrictions on Canadian Parents in the NICU During COVID-19: A National Survey.

The purpose of this research was to explore parental perspectives on the impact of parent restrictions imposed in response to the COVID-19 pandemic across Canadian Neonatal Intensive Care Units (NICUs). A co-designed online survey was conducted targeting parents (n = 235) of infants admitted to a Canadian NICU from March 1, 2020, until March 5, 2021. Parents completed the survey from 38 Canadian NICUs. Large variation in the severity of policies regarding parental presence was reported. Most respondents (68.9%) were classified as experiencing high restrictions, with one or no support people allowed in the NICU, and felt that policies were less easy to understand, felt less valued and respected, and found it more challenging to access medicine or health care. Parents reported gaps in care related to self-care, accessibility, and mental health outcomes. There is significant variation in parental restrictions implemented across Canadian NICUs. National guidelines are needed to support consistent and equitable care practices.

Parental perspectives on technology use to enhance communication and closeness during the COVID-19 parental presence restrictions.

Objective: To explore parental perspectives on the use of technology in neonatal intensive care units (NICU), and its impact during COVID-19 parental presence restrictions. Methods: Co-designed online survey targeting parents of infants admitted to a Canadian NICU from March 1st, 2020 until March 5th, 2021. Results: Parents (n = 117) completed the survey from 38 NICUs. Large variation in policies regarding parental permission to use technology across sites was reported. Restrictive use of technology was reported as a source of parental stress. While families felt that technology helped them feel close to their infant when they could not be in the NICU, it did not replace being in-person. Conclusion: Large variation in policies were reported. Despite concerns about devices in NICUs, evidence on how to mitigate these concerns exists. Benefits of using technology to enhance parental experiences appear substantial. Future study is needed to inform recommendations on technology use in the NICU.

The iCanCope pain self-management application for adolescents with juvenile idiopathic arthritis: a pilot randomized controlled trial.

OBJECTIVES: To evaluate the feasibility and preliminary effectiveness of iCanCope with Pain (iCanCope), a smartphone-based pain self-management program, in adolescents with JIA. iCanCope featured symptom tracking, goal-setting, pain coping skills and social support. METHODS: A two-arm pilot randomized controlled trial was used to evaluate the iCanCope app compared with a version with symptom tracking only. Primary (feasibility) outcomes were: participant accrual/attrition rates, success of app deployment, acceptability and adherence. Secondary (preliminary effectiveness) outcomes were: pain intensity, pain-related activity limitations and health-related quality of life. Outcomes were assessed at baseline and 8 weeks. Adherence was defined as the proportion of completed symptom reports: 'low' (≤24%); 'low-moderate' (25-49%); 'high-moderate' (50-75%); or 'high' (76-100%). Linear mixed models were applied for preliminary effectiveness analyses as per intention-to-treat. RESULTS: Adolescents (N = 60) were recruited from three paediatric rheumatology centres. Rates of accrual and attrition were 82 and 13%, respectively. Both apps were deployed with high success (over 85%) and were rated as highly acceptable. Adherence was similar for both groups, with most participants demonstrating moderate-to-high adherence. Both groups exhibited a clinically meaningful reduction in pain intensity (≥1 point) that did not statistically differ between groups. There were no significant changes in activity limitations or health-related quality of life. CONCLUSION: The iCanCope pilot randomized controlled trial was feasible to implement in a paediatric rheumatology setting. Both apps were deployed successfully, with high acceptability, and were associated with moderate-to-high adherence. Preliminary reductions in pain intensity warrant a future trial to evaluate effectiveness of iCanCope in improving health outcomes in adolescents with JIA. TRIAL REGISTRATION: ClinicalTrials.gov identifier: NCT02764346.

A co-design of clinical virtual care pathways to engage and support families requiring neonatal intensive care in response to the COVID-19 pandemic (COVES study).

BACKGROUND: In response to the COVID-19 pandemic, family presence restrictions in neonatal intensive care units (NICU) were enacted to limit disease transmission. This has resulted in communication challenges, negatively impacting family integrated care. AIM: To develop clinical care pathways to ensure optimal neonatal care to support families in response to parental presence restrictions imposed during the COVID-19 pandemic. METHODS: An agile, co-design process utilizing expert consensus of a large interdisciplinary team and focus groups and semi-structured interviews with families and HCPs were used to co-design clinical virtual care pathways. RESULTS: Three clinical virtual care pathways were co-designed: (1) building and maintaining relationships between family and healthcare providers; (2) awareness of resources; and (3) standardized COVID-19 messaging. Modifications were made to optimize uptake and utilization in the clinical areas. CONCLUSION: Clinical care virtual pathways were successfully co-designed to meet these needs to ensure more equitable family centered care.

Teens Taking Charge: A Randomized Controlled Trial of a Web-Based Self-Management Program With Telephone Support for Adolescents With Juvenile Idiopathic Arthritis.

BACKGROUND: Juvenile idiopathic arthritis (JIA) is a serious and potentially debilitating pediatric illness. Improved disease self-management may help to improve health outcomes. OBJECTIVE: This study aimed to evaluate the effectiveness of the Teens Taking Charge Web-based self-management intervention in reducing symptoms and improving health-related quality of life (HRQL) in adolescents with JIA compared with a Web-based education control condition. METHODS: Adolescents with JIA aged 12 to 18 years were recruited from 11 Canadian pediatric rheumatology centers. Caregivers were invited to participate along with their child. In addition to standard medical care, participants were randomized to receive either (1) the Teens Taking Charge self-management intervention or (2) a Web-based education control condition for a period of 12 weeks. Adolescents in the intervention group completed website modules addressing cognitive behavioral coping skills, stress management, and other self-management topics, while also receiving monthly telephone calls from a trained health coach. Adolescents in the education control group were instructed to view a series of preselected public JIA educational websites and received monthly calls from a coach who asked about their own best efforts at managing JIA. Caregivers in the intervention group completed website modules related to promoting independence and disease self-management in their child. Caregivers in the education control group were instructed to view a series of preselected public JIA educational websites. Outcome assessment occurred at baseline, 12 weeks (posttreatment), and at 6 and 12 months postrandomization. The primary outcomes were pain intensity, pain interference, and HRQL. Secondary outcomes were emotional symptoms, adherence, coping, knowledge, and self-efficacy. RESULTS: In total, 333 adolescents and 306 caregivers were enrolled. Significant overall reductions in pain intensity (P=.02) and pain interference (P=.007) were observed for intervention group participants compared with those in the education control group, after adjusting for baseline levels. There was a significant overall improvement in HRQL related to problems with pain (P=.02) and problems with daily activities (P=.01). There was also a significant difference in the intervention group over time (P=.008) for HRQL related to treatment problems, with the intervention group participants demonstrating improved HRQL by 12 months compared with education control group participants. Both groups showed nonsignificant improvements compared with baseline in other primary outcomes. There were no significant differences between the groups in any secondary outcomes or caregiver-reported outcomes. CONCLUSIONS: The results of this randomized trial suggest that the Teens Taking Charge Web-based intervention is effective at reducing both pain intensity and pain interference, as well as improving HRQL in adolescents with JIA, compared with education control. These effects are sustained for up to 12 months following program completion. The Teens Taking Charge program is now publicly available at no cost. TRIAL REGISTRATION: ClinicalTrials.gov NCT01572896; https://clinicaltrials.gov/ct2/show/NCT01572896.

Patient-reported outcome measures within pediatric solid organ transplantation: A systematic review.

Subjective evaluation of medical care and disease outcomes from patients' perspectives has become increasingly important. Patient-reported outcome measures (PROMs) play a prominent role in engaging patients, capturing their experiences and improving patient care. This systematic review sought to identify PROMs that are used in the field of pediatric solid organ transplantation, with the aim to inform the implementation of PROMs into clinical practice for this population. A systematic review of English language, peer-reviewed articles was performed on key health science databases to identify publications using PROMs in pediatric solid organ transplantation. The search yielded 3670 articles, with a final data set of 62 articles that included 47 different PROMs. The three most frequently used PROMs included the following: (a) PedsQL™ Generic Core Scales (n = 25); (b) Children's Depression Inventory (n = 6); and (c) Child Health Questionnaire (n = 6). Of the 47 PROMs, 42 were generic and five were disease-specific; only six PROMS had a documented psychometric evaluation within a pediatric solid organ transplant population. This review outlines the attributes of the instruments (eg, domains captured), as well as the psychometric properties of those evaluated. PROMs are increasingly used in the field of pediatric transplantation; however, there are limited details in the current literature about their conceptual underpinnings and psychometric properties. This review highlights the need for additional psychometric evaluation of identified measures to establish the necessary foundation to inform the implementation of PROMs into clinical care for pediatric solid organ transplant patients.

Presymptomatic Alterations in Amino Acid Metabolism and DNA Methylation in the Cerebellum of a Murine Model of Niemann-Pick Type C Disease.

The fatal neurodegenerative disorder Niemann-Pick type C (NPC) is caused in most cases by mutations in NPC1, which encodes the late endosomal NPC1 protein. Loss of NPC1 disrupts cholesterol trafficking from late endosomes to the endoplasmic reticulum and plasma membrane, causing cholesterol accumulation in late endosomes/lysosomes. Neurons are particularly vulnerable to this cholesterol trafficking defect, but the pathogenic mechanisms through which NPC1 deficiency causes neuronal dysfunction remain largely unknown. Herein, we have investigated amino acid metabolism in cerebella of NPC1-deficient mice at different stages of NPC disease. Imbalances in amino acid metabolism were evident from increased branched chain amino acid and asparagine levels and altered expression of key enzymes of glutamine/glutamate metabolism in presymptomatic and early symptomatic NPC1-deficient cerebellum. Increased levels of several amino acid intermediates of one-carbon metabolism indicated disturbances in folate and methylation pathways. Alterations in DNA methylation were apparent in decreased expression of DNA methyltransferase 3a and methyl-5'-cytosine-phosphodiester-guanine-domain binding proteins, reduced 5-methylcytosine immunoreactivity in the molecular and Purkinje cell layers, demethylation of genome-wide repetitive LINE-1 elements, and hypermethylation in specific promoter regions of single-copy genes in NPC1-deficient cerebellum at early stages of the disease. Alterations in amino acid metabolism and epigenetic changes in the cerebellum at presymptomatic stages of NPC disease represent previously unrecognized mechanisms of NPC pathogenesis.

Implementation of a Knowledge Management System in Mental Health and Addictions: Mixed Methods Case Study.

BACKGROUND: Mental health and addictions (MHA) care is complex and individualized and requires coordination across providers and areas of care. Knowledge management is an essential facilitator and common challenge in MHA services. OBJECTIVE: This paper aimed to describe the development of a knowledge management system (KMS) and the associated processes in 1 MHA program. We also aimed to examine the uptake and use, satisfaction, and feedback on implementation among a group of pilot testers. METHODS: This project was conducted as a continuous quality-improvement initiative. Integrated stakeholder engagement was used to scope the content and design the information architecture to be implemented using a commercially available knowledge management platform. A group of 30 clinical and administrative staff were trained and tested with the KMS over a period of 10 weeks. Feedback was collected via surveys and focus groups. System analytics were used to characterize engagement. The content, design, and full-scale implementation planning of the KMS were refined based on the results. RESULTS: Satisfaction with accessing the content increased from baseline to after the pilot. Most testers indicated that they would recommend the KMS to a colleague, and satisfaction with KMS functionalities was high. A median of 7 testers was active each week, and testers were active for a median of 4 days over the course of the pilot. Focus group themes included the following: the KMS was a solution to problems for staff members, functionality of the KMS was important, quality content matters, training was helpful and could be improved, and KMS access was required to be easy and barrier free. CONCLUSIONS: Knowledge management is an ongoing need in MHA services, and KMSs hold promise in addressing this need. Testers in 1 MHA program found a KMS that is easy to use and would recommend it to colleagues. Opportunities to improve implementation and increase uptake were identified. Future research is needed to understand the impact of KMSs on quality of care and organizational efficiency.

A Pilot Randomized Control Trial of Teens Taking Charge: A Web-based Self-management Program for Adolescents with Cancer.

Background: There is a lack of self-management tools for adolescents with cancer (AWC). This study evaluated the feasibility of Teens Taking Charge Cancer, a web-based self-management program. Methods: A pilot randomized control trial (RCT) was conducted across 4 pediatric oncology clinics. AWC (12-18 years) and their caregivers were randomized to either the intervention or control group. All were asked to complete 12 website modules over 12 weeks (at their own pace) and received monthly calls from health coaches. The intervention website was based on cognitive behavioral principals, designed as an interactive self-guided online program, while the control consisted of education and included links to 12 general cancer websites. Outcome assessments occurred at enrollment and 12 weeks post-intervention. The primary outcomes included rate of accrual and retention, adherence to the protocol, acceptability and satisfaction with intervention using questionnaire and semi-structured interviews, adverse events and engagement with the intervention. Results: Eighty-one teen-caregiver dyads were enrolled with a retention rate of 33%. In the intervention group 46% (n = 18) logged in at least once over the 12-week period. A mean of 2.4 of 12 modules (SD 3.0) were completed; and no one completed the program. Thirty-three percent of caregivers in the intervention logged into the website at least once and none completed the full program. Discussion: The results from this pilot study suggest that the current design of the Teens Taking Charge Cancer RCT lacks feasiblity. Future web-based interventions for this group should include additional features to promote uptake and engagement with the program.

The Impact of Restrictive Family Presence Policies in Response to COVID-19 on Family Integrated Care in the NICU: A Qualitative Study.

OBJECTIVES: To conduct a needs assessment with families and their healthcare team to understand the impact of restrictive family presence policies in the neonatal intensive care unit (NICU) in response to COVID-19. BACKGROUND: In response to the COVID-19 pandemic, significant restrictive family presence policies were instituted in most NICUs globally intended to protect infants, families, and HCPs. However, knowledge on the impact of the stress of the pandemic and policies restricting family presence in the NICU on vulnerable neonates and their families remains limited. METHODS: Individuals were eligible to participate if they were a caregiver of an infant requiring NICU care or a healthcare provider (HCP) in the NICU after March 1, 2020. Semi-structured interviews were conducted using a virtual communication platform, and transcripts were analyzed using inductive thematic qualitative content analysis. RESULTS: Twenty-three participants were interviewed (12 families and 11 HCPs). Three themes emerged: (1) successes (family-integrated care, use of technology), (2) challenges (lack of standardized messaging and family engagement, impact on parental wellbeing, institutional barriers, and virtual care), and (3) moving forward (responsive and supportive leadership). CONCLUSIONS: Our findings highlight the significant impact of family restrictions on the mental well-being of families, physical closeness with parents, and empathetic stress to HCPs. Further study of potential long-term impact is warranted.

Classification of Individual Pain Response Trajectories Following Medically Indicated Heel Lances in Preterm Infants During Their NICU Admission.

OBJECTIVES: Infants born preterm are exposed to repeated painful procedures during neonatal intensive care unit admission. Particularly in preterm infants, trajectories of pain response are not well understood. The aim of this study was to classify pain response trajectories over 2 minute following medically indicated heel lances in preterm infants. MATERIALS AND METHODS: This study used existing clinical trial data (NCT01561547) that evaluated the efficacy of kangaroo care and sucrose for infant pain control. Pain was measured using the Premature Infant Pain Profile at 30, 60, 90, and 120 seconds following a heel lance. Group-based trajectory modeling was used to classify pain response in this 2 minute period. RESULTS: A total of 236 infants with median gestational age of 33 weeks contributed 610 procedures. A model with 5 trajectory classes best fit the data. Three trajectories were stable over time at different levels of intensity from low-mild to low-moderate pain. One trajectory reflected a linear reduction from high-moderate to low-moderate pain. The final trajectory showed variable moderate-high pain. At all times points, 3 classes were at least 1-point different from the overall sample mean pain score. Only 21 (9%) infants maintained the same class for all 3 procedures. DISCUSSION: In this sample of preterm infants receiving pain relief, most pain trajectories reflected mild to low-moderate pain that was stable over 2 minute after heel lance initiation. Trajectories were not consistent over multiple procedures within infants, and an overall mean pain score for the sample may misrepresent subgroups of pain response.

Screening and diagnostic tools for complex regional pain syndrome: a systematic review.

ABSTRACT: Complex regional pain syndrome (CRPS) is a severely painful condition that presents with a constellation of symptoms. The understanding of the pathophysiology of CRPS has evolved over time, as have the diagnostic criteria. Our primary objective was to identify screening and diagnostic tools for CRPS and summarize their feasibility, measurement properties, and study quality. A secondary objective was to identify screening and diagnostic tools used for CRPS in pediatric populations (0-21 years of age). A systematic review of English articles in electronic databases (PsycINFO, MEDLINE, Embase, CINAHL, CENTRAL, and Web of Science) was conducted with the aid of a librarian in November 2018 and updated in July 2020. Studies were included if the tool was a screening or diagnostic tool, the tool included self-report or physical examination, and the primary objective of the study was to evaluate the measurement properties or feasibility of use. For each study, data were extracted for quality indicators using the QUADAS-2 tool. No screening tools were identified. Four diagnostic tools were identified: the Veldman criteria, International Association for the Study of Pain criteria, Budapest Criteria, and Budapest Research Criteria. There are no diagnostic tools validated for use in pediatric CRPS. Because there are no extant screening tools for CRPS, all people with suspected disease should undergo rapid diagnostic assessment by a clinician. For adults, the Budapest Criteria are the preferred diagnostic tool. Future research is recommended to develop a diagnostic tool for pediatric populations and screening tools for both pediatric and adults.

Virtual Reality to Reduce Procedural Pain During IV Insertion in the Pediatric Emergency Department: A Pilot Randomized Controlled Trial.

OBJECTIVE: The objective of this study was to evaluate the feasibility of using virtual reality (VR) for distraction during intravenous (IV) insertion in the pediatric emergency department (ED) and of conducting a full-scale randomized controlled trial. MATERIALS AND METHODS: Children aged 8 to 17 years old attending a tertiary care pediatric ED were randomized to interactive VR or an attention control (video on a tablet) for distraction during their IV insertion. Feasibility was determined by recruitment rates, acceptability of the intervention, response rates to outcome measures, and safety or technical problems. Satisfaction questionnaires and pain, fear, and distress scores were completed by the child, caregiver, nurse, and research assistant. Immersion in the intervention was rated by the child. Heart rate was measured. RESULTS: Children were recruited between February 2018 and May 2019. A total of 116 children were screened and 72.3% of eligible children were enrolled. Overall, 60 children were randomized to either VR (n=32) or attention control (n=28). Children, caregivers, and nurses were highly satisfied with both distraction methods. There were no significant safety, technical, or equipment issues. There was minimal disruption to clinical workflow in both groups due to study protocols. There was a clinically significant reduction in pain in the VR group. There was no significant difference in fear or distress. Children reported higher immersion in the VR environment. Heart rate increase from baseline was higher in the VR group. DISCUSSION: Our data support the feasibility of using VR for distraction during IV insertion and of conducting a full-scale randomized controlled trial. Identifying eligible patients and minimizing the number of outcome measures will be important considerations for future research.

Development of a Screening Tool for Pediatric Neuropathic Pain and Complex Regional Pain Syndrome: Pediatric PainSCAN.

OBJECTIVE: Neuropathic pain (NP) and complex regional pain syndrome (CRPS) in children can result in significant disability and emotional distress. Early assessment and treatment could potentially improve pain, function, quality of life, and reduce costs to the health care system. Currently, there are no screening tools for pediatric NP and CRPS. This research aimed to develop and establish the content validity of a screening tool for pediatric NP and CRPS using a phased approach. MATERIALS AND METHODS: Phase I surveyed clinical experts using a modified Delphi procedure to elicit disease concepts for inclusion. In phase II, a consensus conference including clinicians, researchers, and people with lived experience, informed the initial item pool. Consensus for item inclusion was achieved using a nominal group technique for voting. Phase III used iterative rounds of cognitive interviews with children aged 8 to 18 years with CRPS or NP to evaluate the tool's comprehensiveness and individual item relevance and comprehensibility. Descriptive statistics were used to describe participant characteristics. Content analysis was used to analyze patient interviews. RESULTS: Phase I (n=50) generated an initial item pool (22 items). Phase II generated a comprehensive item pool (50 items), after which an initial version of the screening tool was drafted. Following phase III (n=26) after item revision and elimination, 37 items remained. DISCUSSION: The Pediatric PainSCAN is a novel screening tool that has undergone rigorous development and content validity testing. Further research is needed to conduct item reduction, determine scoring, and test additional measurement properties.

Development and validation of the RACER (Readiness for Adult Care in Rheumatology) transition instrument in youth with juvenile idiopathic arthritis.

BACKGROUND: Current evidence suggests that many adolescents with juvenile idiopathic arthritis (JIA) do not successfully transfer to adult care, which can result in adverse health outcomes. Although a growing number of clinical programs have been designed to support healthcare transition, there is a lack of psychometrically sound instruments to evaluate their impact on development of transition-related knowledge and skills in youth with JIA. The purpose of this study was to develop and validate RACER (Readiness for Adult Care in Rheumatology), a self-administered instrument designed to measure stages of readiness for key transition-related skills in adolescents with JIA. METHODS: A phased approach was used to develop and evaluate the validity and reliability of RACER. Phase 1 A was a consensus conference with 19 key stakeholders to inform instrument domains and items. Phase 1B determined initial content validity using a sample of 30 adolescents with JIA and 15 clinical and research experts. Finally, Phase 2 was a prospective cohort study with repeated measures to evaluate the internal consistency, test-retest reliability, construct validity and responsiveness of the instrument within a sample of adolescents with JIA. RESULTS: In Phase 1 A, initial item generation yielded a total of 242 items across six domains from the consensus conference, which was subsequently reduced to a 32-item instrument. Phase 1B established the content validity of the instrument in adolescents with JIA. In the Phase 2 study, with a sample of 96 adolescents, the RACER instrument exhibited good internal consistency in five of its six subscales (Cronbach's α > 0.7), and strong test-retest reliability between the first two administrations (ICC = 0.83). It also showed robust convergent validity by highly correlating with measures of self-management (SMSAG, rho = 0.73) and transition (TRANSITION-Q, rho = 0.76). The RACER was not correlated with unrelated measures (discriminant validity; PedsQL, rho = 0.14). The RACER scores increased significantly over time as expected, supporting measure responsiveness. CONCLUSIONS: The RACER is a reliable and valid instrument which is sensitive to change for assessing transition readiness in adolescents with JIA.

A Pilot Randomized Controlled Trial of Virtual Reality Distraction to Reduce Procedural Pain During Subcutaneous Port Access in Children and Adolescents With Cancer.

OBJECTIVES: We aimed to determine the feasibility of virtual reality (VR) distraction for children with cancer undergoing subcutaneous port (SCP) access. We also aimed to estimate preliminary treatment effects of VR compared with an active distraction control (iPad). MATERIALS AND METHODS: A single-site pilot randomized controlled trial comparing VR to iPad distraction was conducted. Eligible children and adolescents were aged 8 to 18 years undergoing treatment for cancer with upcoming SCP needle insertions. Intervention acceptability was evaluated by child, parent, and nurse self-report. Preliminary effectiveness outcomes included child-reported pain intensity, distress, and fear. Preliminary effectiveness was determined using logistic regression models with outcomes compared between groups using preprocedure scores as covariates. RESULTS: Twenty participants (mean age 12 y) were randomized to each group. The most common diagnosis was acute lymphocytic leukemia (n=23, 58%). Most eligible children and adolescents (62%) participated, and 1 withdrew after randomization to the iPad group. Nurses, parents, and children reported the interventions in both groups to be acceptable, with the VR participants reporting significantly higher immersion in the distraction environment (P=0.0318). Although not statistically significant, more VR group participants indicated no pain (65% vs. 45%) and no distress (80% vs. 47%) during the procedure compared with the iPad group. Fear was similar across groups, with ~60% of the sample indicating no fear. DISCUSSION: VR was feasible and acceptable to implement as an intervention during SCP access. Preliminary effectiveness results indicate that VR may reduce distress and distress compared with iPad distraction. These data will inform design of a future full-scale randomized controlled trial.

Questionnaires assessing the use of complementary health approaches in pediatrics and their measurement properties: A systematic review.

OBJECTIVES: To identify questionnaires assessing the use of complementary health approaches (CHA) in pediatrics, describe their content, and appraise the methodological quality of the studies and the measurement properties of the questionnaires. METHOD: Major electronic databases were searched from 2011 to 2020. Studies which aimed to assess the use of CHA and studies which reported developing and validating CHA questionnaires in pediatrics were included. Two reviewers independently screened the studies, extracted the data, and rated the methodological quality of the studies and measurement properties of the questionnaires using the COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) checklist. When consensus was not reached, a third reviewer was consulted. RESULTS: Thirty-eight studies were included. From these studies, 35 CHA questionnaires with a variety of different items were identified. Only two studies aimed to evaluate the measurement properties of two questionnaires. One questionnaire, available as a self- and proxy-report, was initially validated in children with juvenile idiopathic arthritis, and the other, available as an interviewer-administered questionnaire, was validated in children with cancer. According to the COSMIN, the methodological quality of both studies was inadequate or doubtful, and both questionnaires was not thoroughly validated. CONCLUSION: This systematic review showed a lack of a thoroughly validated CHA questionnaire in pediatrics. However, two questionnaires were found to hold promise. To address this gap, one of the existing questionnaires should be adapted and further validated.

Pediatric Project ECHO: Implementation of a Virtual Medical Education Program to Support Community Management of Children With Medical Complexity.

OBJECTIVES: Health care providers (HCPs) require ongoing support to meet the evolving care needs of children with medical complexity (CMC). Project Extension for Community Healthcare Outcomes (ECHO) is a model for delivering technology-enabled medical education and cultivating a community of practice. In this study, we focused on developing, implementing, and evaluating the first ECHO program dedicated to the care of CMC. Specific objectives were to evaluate the program feasibility (participation and acceptability) and impact on perceived HCP knowledge, self-efficacy, and clinical practice after 6 months. METHODS: A needs assessment was conducted to inform an interprofessional CMC curriculum. This curriculum was delivered through monthly virtual TeleECHO clinics (didactic and case-based learning) from January 2018 to 2020. The program was available at no cost to HCPs throughout Ontario. Surveys were distributed at baseline and 6 months to assess program acceptability, knowledge, self-efficacy, and practice impact by using 7-point Likert scales. Descriptive and inferential data analyses were conducted. RESULTS: Twenty-four clinics were completed with a mean of 19 ± 6 attendees. Acceptability scores (n = 27) ranged from 5.0 ± 1.1 to 6.4 ± 0.6. Participants reported an improvement in their knowledge and self-efficacy across all probed topics and skills (P values ranged from <.001 to .006). These knowledge and self-efficacy scores related to "complex care support," "feeding support," and "respiratory support." The majority of participants reported positive or very positive practice impacts, including enhanced ability to provide quality care to CMC. CONCLUSIONS: Project ECHO is a feasible and acceptable model for virtual education of interprofessional HCPs in managing CMC. This program has the potential to increase system capacity to provide quality care to CMC close to home.

Pain Squad+ smartphone app to support real-time pain treatment for adolescents with cancer: protocol for a randomised controlled trial.

INTRODUCTION: Pain negatively affects the health-related quality of life (HRQL) of adolescents with cancer. The Pain Squad+ smartphone-based application (app), has been developed to provide adolescents with real-time pain self-management support. The app uses a validated pain assessment and personalised pain treatment advice with centralised decision support via a registered nurse to enable real-time pain treatment in all settings. The algorithm informing pain treatment advice is evidence-based and expert-vetted. This trial will longitudinally evaluate the impact of Pain Squad+, with or without the addition of nurse support, on adolescent health and cost outcomes. METHODS AND ANALYSIS: This will be a pragmatic, multicentre, waitlist controlled, 3-arm parallel-group superiority randomised trial with 1:1:1 allocation enrolling 74 adolescents with cancer per arm from nine cancer centres. Participants will be 12 to 18 years, English-speaking and with ≥3/10 pain. Exclusion criteria are significant comorbidities, end-of-life status or enrolment in a concurrent pain study. The primary aim is to determine the effect of Pain Squad+, with and without nurse support, on pain intensity in adolescents with cancer, when compared with a waitlist control group. The secondary aims are to determine the immediate and sustained effect over time of using Pain Squad+, with and without nurse support, as per prospective outcome measurements of pain interference, HRQL, pain self-efficacy and cost. Linear mixed models with baseline scores as a covariate will be used. Qualitative interviews with adolescents from all trial arms will be conducted and analysed. ETHICS AND DISSEMINATION: This trial is approved by the Hospital for Sick Children Research Ethics Board. Results will provide data to guide adolescents with cancer and healthcare teams in treating pain. Dissemination will occur through partnerships with stakeholder groups, scientific meetings, publications, mass media releases and consumer detailing. TRIAL REGISTRATION NUMBER: NCT03632343 (ClinicalTrials.gov).

Clinical Features of Pediatric Complex Regional Pain Syndrome: A 5-Year Retrospective Chart Review.

OBJECTIVES: Complex regional pain syndrome (CRPS) is a painful condition of a limb characterized by a constellation of symptoms. Little is known about the clinical features of pediatric CRPS, with fewer than a dozen studies published to date. The aim of this study was to explore the clinical course of pediatric CRPS, with emphasis on clinical features and disease outcomes. A secondary aim was to discern differences in clinical features of pediatric CRPS with and without related movement disorders, and between children who had a favorable and unfavorable outcome. MATERIALS AND METHODS: We carried out a retrospective chart review of children with CRPS who presented to a pediatric Chronic Pain Clinic in Canada over a 5-year period (2012 to 2016). RESULTS: The study identified 59 children with CRPS (mean age: 12.7±2.5; 74.6% female; 72.9% lower extremity). In total, 87% (n=48) of children experienced complete resolution or significant improvement of CRPS, with a relapse rate of 15%. Overall, 25% (n=15) had a CRPS-related movement disorder. There were no differences in the clinical features of pediatric CRPS with or without related movement disorders. Children who experienced a favorable outcome had a significantly shorter symptom duration at the initial visit in comparison with children who experienced an unfavorable outcome. DISCUSSION: In this cohort, pediatric CRPS was most common in girls around the age of 12, usually in the lower extremity, and most experienced a favorable outcome. Further research is needed to better understand the prognosis and relapse rate of pediatric CRPS.