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Integrated psychological care in pediatric hospital settings for children with complex chronic illness and their families: A systematic review
Objective: To synthesize and critically evaluate evidence on the effectiveness of integrated psychological care models for children with complex chronic illness within pediatric hospital settings and provide recommendations for successful implementation. Design: Six electronic databases (Medline, Cochrane, Embase, PsycINFO, Scopus, CINAHL) were systematically searched for English language studies including families of children aged 0-17 years with complex chronic illness. Eligible studies reported on psychology or neuropsychology screening, assessment, intervention, or services provided within a pediatric hospital setting. Results: Fifteen studies were identified for review; nine assessed a psychological service, five examined psychosocial screening, and one examined a neuropsychology service. Three studies demonstrated the effectiveness of integrated psychological services in improving child or parent physical, psychological, or behavioral health outcomes. Uptake of psychosocial screening was high (84-96%), but only 25-37% of children or families identified as 'at-risk' engaged with on-site psychology services. Integrated psychological services offering consultations at the same time and location as the child's medical visit reported the highest rates of uptake (77-100%). Conclusions: The available evidence supports co-location of child medical and psychological services. A more consistent and comprehensive approach to the assessment of patient- and caregiver-reported outcomes and implementation effectiveness is recommended.
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The voice of caregivers of children and adolescents with spinal cord injuries: A scoping review.
Context: Participation in SCI research with caregivers of children and adolescents with spinal cord injury (SCI) can occur in a range of different ways. This review explores the extent to which caregivers' participation is connected to what might be called a voice. Objectives: To explore the voice of caregivers by collating available research with the participation of caregivers of children and adolescents with SCI, and synthesizing how the research has been conducted. Methods: The databases CINAHL, ERIC, MEDLINE, PsycInfo, and Scopus were searched for articles published between January 2008 and March 2022. Descriptive and narrative information was extracted and factors describing how caregivers participated were identified using an inductive approach. Results: Twenty-nine articles were identified, of which 28 had affiliations connected to the USA, and 25 to Shriners Hospitals for Children. In most of the articles, the caregivers were invited to participate in the research to complete or develop measures. Information from the caregivers was often captured using close-structured questions and summarized quantitatively with little or no exploration of the perspectives of the caregivers. Conclusion: The voice of caregivers of children and adolescents with SCI in research is limited by representativeness, the pre-determined emphasis, a lack of involvement in the process, and the reported narrative. By reflecting on voice, caregivers can have their experiences and perspectives acted upon to a greater extent to bring change, ultimately leading to improved care and health for children and adolescents with SCI.
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Systematic review: Child psychiatry access program outcomes
OBJECTIVE: There has been an increase in Child Psychiatry Access Programs (CPAP) across the United States to address the national child and adolescent psychiatry workforce shortage by supporting pediatric primary care providers (PCPs) in providing mental health services. The objective of this systematic review is to synthesize the expanding literature on CPAPs. METHOD: A systematic literature search was conducted in PubMed, PsycInfo, Embase, and Web of Science databases to identify articles published from database inception to April 6, 2022, to identify CPAPs, defined as programs with mental health specialists providing rapid remote mental health consultation services to pediatric PCPs. Study outcomes included program adoption, provider experience, patient and caregiver experience, program cost, and patient mental health. RESULTS: None of the 33 included studies were randomized controlled trials. Most of the studies (n = 30) focused on program adoption and provider experience (n = 18). Few studies examined patient and caregiver experience (n = 2), program cost(n = 4), or patient mental health (n = 4) outcomes. CPAPs showed year-over-year growth in adoption and were generally well-received by providers and caregivers. Health care provision costs were quite varied. No articles reported on changes in patient mental health according to validated measures. Heterogeneity in the methodological quality, study design, and outcomes used to evaluate CPAPs hindered comparison among programs. CONCLUSION: Rigorous research on the impact of CPAPs is lacking. Findings show high provider satisfaction with CPAPs, yet few studies examine patient-level mental health outcomes. CPAPs and funding agencies should consider prioritizing and investing in research to build the evidence base for CPAPs.
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Effectiveness, quality and implementation of pain, sedation, delirium, and iatrogenic withdrawal syndrome algorithms in pediatric intensive care: a systematic review and meta-analysis.
Background: Pain, sedation, delirium, and iatrogenic withdrawal syndrome are conditions that often coexist, algorithms can be used to assist healthcare professionals in decision making. However, a comprehensive review is lacking. This systematic review aimed to assess the effectiveness, quality, and implementation of algorithms for the management of pain, sedation, delirium, and iatrogenic withdrawal syndrome in all pediatric intensive care settings. Methods: A literature search was conducted on November 29, 2022, in PubMed, Embase, CINAHL and Cochrane Library, ProQuest Dissertations & Theses, and Google Scholar to identify algorithms implemented in pediatric intensive care and published since 2005. Three reviewers independently screened the records for inclusion, verified and extracted data. Included studies were assessed for risk of bias using the JBI checklists, and algorithm quality was assessed using the PROFILE tool (higher % = higher quality). Meta-analyses were performed to compare algorithms to usual care on various outcomes (length of stay, duration and cumulative dose of analgesics and sedatives, length of mechanical ventilation, and incidence of withdrawal). Results: From 6,779 records, 32 studies, including 28 algorithms, were included. The majority of algorithms (68%) focused on sedation in combination with other conditions. Risk of bias was low in 28 studies. The average overall quality score of the algorithm was 54%, with 11 (39%) scoring as high quality. Four algorithms used clinical practice guidelines during development. The use of algorithms was found to be effective in reducing length of stay (intensive care and hospital), length of mechanical ventilation, duration of analgesic and sedative medications, cumulative dose of analgesics and sedatives, and incidence of withdrawal. Implementation strategies included education and distribution of materials (95%). Supportive determinants of algorithm implementation included leadership support and buy-in, staff training, and integration into electronic health records. The fidelity to algorithm varied from 8.2% to 100%. Conclusions: The review suggests that algorithm-based management of pain, sedation and withdrawal is more effective than usual care in pediatric intensive care settings. There is a need for more rigorous use of evidence in the development of algorithms and the provision of details on the implementation process. Systematic review registration: https://www.crd.york.ac.uk/prospero/display_record.php?ID=CRD42021276053, PROSPERO [CRD42021276053].
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3D printing as surgical planning and training in pediatric endoscopic skull base surgery - Systematic review and practical example
BACKGROUND: Pediatric endoscopic skull base surgery is challenging due to the intricate anatomy of the skull base and the presence of tumors with varied pathologies. The use of three-dimensional (3D) printing technologies in skull base surgeries has been found to be highly beneficial. A systematic review of the literature was performed to investigate the published studies that reported the effectiveness of 3D printing in pediatric endoscopic skull base surgery. METHODS: Pub Med, Embase, Science Direct, The Cochrane Library, and Scopus were searched from January 01, 2000, until June 30, 2022. Original articles of any design reporting on the effectiveness of 3D printing in pediatric endoscopic skull base surgery were included. Information related to study population, conditions, models used, and key findings of study were extracted. Quality of included studies was evaluated using the Joanna Briggs Institute's (JBI) Critical Appraisal Checklist for Studies. To exemplify the use of 3D technology in this scenario, we report a complex clival chordoma case. RESULTS: Six research articles were retrieved and included for qualitative analysis. Four of the six studies were conducted in the United States, followed by two in China. According to these studies, 3D reconstruction and printed models were more beneficial than CT/MRI images when discussing surgery with patients. In clinical training, these models were more helpful than 2D images in understanding the pathology when used in conjunction with image-guiding systems. It has been found that patient-specific 3D modeling, simulations, and rehearsal are the most efficient preoperative planning techniques, particularly in the pediatric population, for the treatment of complicated skull base surgeries. All the studies had a moderate risk of bias. CONCLUSION: 3D printing technologies assist in printing complex skull base tumors and the structures around them in three dimensions at the point of care and at the time needed, enabling the choice of the appropriate surgical strategy, thus minimizing surgery-related complications.
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Off-label use of drugs in pediatrics: a scoping review
To explore the current state of research on off-label drug use in children and identify the existing research gaps in this topic. Six literature databases were searched to identify studies focusing exclusively on off-label drug use in children (aged < 18 years) published in Chinese or English between 2016 and 2021. We also searched clinicaltrials.gov for pediatric clinical trials conducted in the same period and compared the numbers of studies on off-label use and clinical trials for the most commonly reported drugs and drug types. Our search revealed 568 studies on off-label drug use. Almost half of the studies (n = 240) were cross-sectional. A total of 212 specific drugs or drug types were addressed in 361 studies, the most frequent being antipsychotic agents (n = 12), dexmedetomidine (n = 10), and rituximab (n = 8). Antipsychotic agents were also the most common type of drug examined in clinical trials in children. We identified a total of 435 different types of off-label use, the top three being unapproved indication (n = 157), population (n = 96), or age (n = 36). Only about one-third of the studies reported collecting informed consent (n = 195) or having ethics committee approval (n = 166). Conclusions: Off-label use of antipsychotics in children is widely reported in the literature. We suggest pediatric researchers to consider the number of studies on off-label use and existing clinical trials on different drugs when selecting target drugs for new studies and systematic reviews. What is Known: center dot There exist a large number of studies on off-label drug use in children. What is New: center dot This is the first scoping review of studies on off-label drug use in children. center dot Off-label use of antipsychotic agents is widely reported.
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A scoping review of mHealth monitoring of pediatric bronchial asthma before and during COVID-19 pandemic
Mobile (m) Health technology is well-suited for Remote Patient Monitoring (RPM) in a patient's habitual environment. In recent years there have been fast-paced developments in mHealth-enabled pediatric RPM, especially during the COVID-19 pandemic, necessitating evidence synthesis. To this end, we conducted a scoping review of clinical trials that had utilized mHealth-enabled RPM of pediatric asthma. MEDLINE, Embase and Web of Science were searched from September 1, 2016 through August 31, 2021. Our scoping review identified 25 publications that utilized synchronous and asynchronous mHealth-enabled RPM in pediatric asthma, either involving mobile applications or via individual devices. The last three years has seen the development of evidence-based, multidisciplinary, and participatory mHealth interventions. The quality of the studies has been improving, such that 40% of included study reports were randomized controlled trials. In conclusion, there exists high-quality evidence on mHealth-enabled RPM in pediatric asthma, warranting future systematic reviews and/or meta-analyses of the benefits of such RPM.
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Economic evaluations of vision screening to detect amblyopia and refractive errors in children: a systematic review
Objective To synthesize and appraise economic evaluations of vision screening to detect vision impairment in children. Methods Literature searches were conducted on seven electronic databases, grey literature, and websites of agencies conducting health technology assessments. Studies were included if they (1) were full, comparative economic evaluations that used cost-utility, cost-benefit, cost-effectiveness, cost-consequence, or cost-analysis methods; (2) described screening services designed to detect amblyopia, strabismus, or uncorrected refractive errors in children under 6 years of age; and (3) published after 1994. High-quality studies were synthesized descriptively. Currencies were reported in 2019 Canadian dollars. Quality was assessed with the Pediatric Quality Appraisal Questionnaire (PQAQ). Results Vision screening services were conducted by paid staff, volunteers, or health care professionals in schools or clinics. Thirteen studies were published from five countries: China (n = 1), United States (n = 4), United Kingdom (n = 1), Canada (n = 1), and Germany (n = 6). Analytical techniques included cost-utility/cost-effectiveness combination (n = 2), cost-effectiveness analysis (n = 7), cost-utility analysis (n = 1), cost-benefit analysis (n = 1), cost-consequence analysis (n = 1), and cost analysis (n = 1). Incremental cost-effectiveness ratios ranged from C$1,056 to C$151,274 per additional case detected/prevented and from C$9,429 to C$30,254,703 per additional QALY gained, depending on the type of screening service and comparator. Six studies were determined to be of high quality. Conclusion Vision screening to detect amblyopia for young children may be cost-effective compared with no screening if amblyopia reduced quality of life. Studies varied significantly in the type of screening services and comparators used. Methodological limitations were common. Future studies would be aided immensely by prospective studies on the impact of amblyopia on the health-related quality of life of young children and guidelines on the effective conduct of vision screening.
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Parental presence at the bedside of critically ill children in the pediatric intensive care unit: A scoping review
Parental presence at the bedside (PPB) of critically ill children in the pediatric intensive care unit (PICU) is necessary for operationalizing family-centred care. Previous evidence syntheses emphasize parent-healthcare provider interactions at rounds and resuscitation; our focus is the parent–child dyad. Prior to embarking on further study, we performed a scoping review to determine the breadth and scope of the literature addressing PPB of critically ill children in the PICU. We searched five online databases (MEDLINE, EMBASE, CINAHL, Cochrane Library, and PSYCHINFO) and the grey literature to identify English and French reports from January 1960 to June 2020 addressing physical parental presence with children (birth to 18 years) in intensive care units, without limitation by methodology. Screening, reference selection, and data extraction were performed by two independent reviewers. Data were extracted into a researcher-designed tool. We identified 204 publications (81 quantitative, 68 qualitative, 22 mixed methods, and 9 descriptive case or practice change studies, and a further 24 non-study reports). PPB was directly assessed in 78 (38%) reports, and was the primary objective in 64 (31%). Amount or quality of presence was addressed by 114 reports, barriers and enablers by 152 sources, and impacts and outcomes by 134 sources. While only 6 reports were published in the first two decades of our search (1960–1980), 17 reports were published in 2019 alone. CONCLUSIONS: A relatively large body of literature exists addressing PPB of critically ill children. Separate systematic evidence syntheses to assess each element of PPB are warranted.
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A systematic review on pediatric medication errors by parents or caregivers at home
INTRODUCTION: Medication errors (MEs) are frequent and, in some cases, can lead to hospitalization, disability, increased healthcare costs or, even, death. Most of pediatric medications are administered by parents or caregivers at home. It is necessary to explore the MEs at home to improve pediatric patient safety. AREAS COVERED: This study aimed to review the current literature on the frequency of pediatric MEs by parents or caregivers at home, their associated factors, and pediatric ME reporting systems. Citable original articles of any type of study design or reviews published from 2013 to 2021 were searched in Medline, Scopus, Embase, and ScienceDirect databases. EXPERT OPINION: The available data about the frequency of pediatric MEs at home varied from 30% to 80%. Current research suggests the risk of making a ME in pediatric patients at home may depend on the characteristics of the caregiver and may increase if a prescription contains ≥3 drugs. Findings conclude that providing dosing tools more closely matched to prescribed dose volumes, recommending the use of syringes as a measurement tool, and educational intervention for caregivers could be useful to reduce MEs. Concerning the reporting systems for pediatric MEs in the outpatient setting, no information was found.
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Online interventions to improve mental health of pediatric, adolescent, and young adult cancer survivors: A systematic review and meta-analysis
OBJECTIVE: Over the last 10 years, online interventions to improve mental health have increased significantly. This study's primary objective was to determine the effectiveness of online interventions in improving the mental health of pediatric, adolescent, and young adult (PAYA) cancer survivors. The secondary objective was to identify the independent variables associated with online intervention efficacy for mental health improvement. METHODS: On June 25-30, 2021, we searched the Medline, PsycINFO, EMBASE, and Cochrane databases for eligible English language publications that reported randomized controlled trials of online interventions aimed at improving mental health among PAYA cancer survivors. The results were analyzed using a systematic review and a three-level meta-analysis. RESULTS: Thirteen studies met the inclusion criteria. In six (42%) studies, the intervention focused on physical activity enhancement, while ten (77%) studies used self-directed interventions. Online interventions were more efficacious, compared to control conditions, in improving sleep g = 0.35 (95% CI 0.04-0.66) and psychological well-being g = 0.32 (95% CI 0.09-0.56), but not for reducing the symptoms of depression g = 0.17 (95% CI -0.13 to 0.47), anxiety g = 0.05 (95% CI -0.15 to 0.25), and pain g = 0.13 (95% CI -0.13 to 0.39). CONCLUSION: Online interventions were generally effective in improving mental health in PAYA cancer survivors, although negative results were found in some critical outcomes. More high-quality evidence is needed for definite conclusions to be drawn.
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Impact of developmental and epileptic encephalopathies on caregivers: A literature review
OBJECTIVES: Developmental and epileptic encephalopathies (DEEs) are rare neurodevelopmental disorders characterized by early-onset seizures and numerous comorbidities. Due to the complex requirements for the care of a child with a DEE, these disorders would be expected to impact health-related quality of life (HRQL) for caregivers as well as for patients. The objective of this literature review was to describe the impact of DEEs on the HRQL, emotional wellbeing, and usual activities (social, work, relationships, etc.) of caregivers, including the wider impact on other family members such as siblings. METHODS: A literature search was conducted in May 2020 using MEDLINE® and Embase® databases. Quantitative and qualitative studies were identified using search terms related to family, disease type (including >20 specific DEEs), and quality of life/methodology. Each study was assessed for relevance and was graded using customized critical appraisal criteria. Findings from studies that were given the highest quality ratings were summarized and used to develop a conceptual model to illustrate the complex impact of DEEs on caregiver HRQL. RESULTS: Sixty-seven relevant studies were identified, of which 39 (27 quantitative, 12 qualitative) met the highest appraisal criteria. The studies recruited caregivers of patients with one of eight individual DEEs, or pediatric intractable or refractory epilepsy. Most studies reported negative impacts on HRQL and emotional wellbeing in caregivers. The wide-ranging impact of a DEE was highlighted by reports of negative effects on caregivers' physical health, daily activities, relationships, social activities, leisure time, work, and productivity. Factors that influenced the perceived impact included demographic characteristics (e.g., child's age, living arrangements, family income) and clinical factors (e.g., feeding or sleep difficulties, disease severity). Few studies evaluated the impact on siblings. CONCLUSIONS: There is evidence that DEEs can impact HRQL and emotional wellbeing and can limit usual activities for the primary caregiver and their wider family. However, no research was identified regarding many individual DEEs, and only limited research assessed the impact on different family members with most studies focusing on mothers. Further research is required to understand the influence of certain factors such as the age of the patient, disease severity, and seizures on caregiver burden. Furthermore, the review highlighted the lack of appropriate measurement tools to assess caregiver HRQL in this population.
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Guideline for the diagnosis, treatment and long-term management of cutaneous lupus erythematosus
Cutaneous lupus erythematosus (CLE) is an inflammatory, autoimmune disease encompassing a broad spectrum of subtypes including acute, subacute, chronic and intermittent CLE. Among these, chronic CLE can be further classified into several subclasses of lupus erythematosus (LE) such as discoid LE, verrucous LE, LE profundus, chilblain LE and Blaschko linear LE. To provide all dermatologists and rheumatologists with a practical guideline for the diagnosis, treatment and long-term management of CLE, this evidence- and consensus-based guideline was developed following the checklist established by the international Reporting Items for Practice Guidelines in Healthcare (RIGHT) Working Group and was registered at the International Practice Guideline Registry Platform. With the joint efforts of the Asian Dermatological Association (ADA), the Asian Academy of Dermatology and Venereology (AADV) and the Lupus Erythematosus Research Center of Chinese Society of Dermatology (CSD), a total of 25 dermatologists, 7 rheumatologists, one research scientist on lupus and 2 methodologists, from 16 countries/regions in Asia, America and Europe, participated in the development of this guideline. All recommendations were agreed on by at least 80% of the 32 voting physicians. As a consensus, diagnosis of CLE is mainly based on the evaluation of clinical and histopathological manifestations, with an exclusion of SLE by assessment of systemic involvement. For localized CLE lesions, topical corticosteroids and topical calcineurin inhibitors are first-line treatment. For widespread or severe CLE lesions and (or) cases resistant to topical treatment, systemic treatment including antimalarials and (or) short-term corticosteroids can be added. Notably, antimalarials are the first-line systemic treatment for all types of CLE, and can also be used in pregnant patients and pediatric patients. Second-line choices include thalidomide, retinoids, dapsone and MTX, whereas MMF is third-line treatment. Finally, pulsed-dye laser or surgery can be added as fourth-line treatment for localized, refractory lesions of CCLE in cosmetically unacceptable areas, whereas belimumab may be used as fourth-line treatment for widespread CLE lesions in patients with active SLE, or recurrence of ACLE during tapering of corticosteroids. As for management of the disease, patient education and a long-term follow-up are necessary. Disease activity, damage of skin and other organs, quality of life, comorbidities and possible adverse events are suggested to be assessed in every follow-up visit, when appropriate.
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Effectiveness of serious games to increase physical activity in children with a chronic disease: Systematic review with meta-analysis
BACKGROUND: Physical activity (PA) is important for children with a chronic disease. Serious games may be useful to promote PA levels among these children. OBJECTIVE: The primary purpose of this systematic review was to evaluate the effectiveness of serious games on PA levels in children with a chronic disease. METHODS: PubMed, EMBASE, PsycINFO, ERIC, Cochrane Library, and CINAHL were systematically searched for articles published from January 1990 to May 2018. Both randomized controlled trials and controlled clinical trials were included to examine the effects of serious games on PA levels in children with a chronic disease. Two investigators independently assessed the intervention, methods, and methodological quality in all articles using the Cochrane risk of bias tool. Both qualitative and quantitative analyses were performed. RESULTS: This systematic review included 9 randomized controlled trials (886 participants). In 2 of the studies, significant between-group differences in PA levels in favor of the intervention group were reported. The meta-analysis on PA levels showed a nonsignificant effect on moderate to vigorous PA (measured in minutes per day) between the intervention and control groups (standardized mean difference 0.30, 95% CI -0.15 to 0.75, P=.19). The analysis of body composition resulted in significantly greater reductions in BMI in the intervention group (standardized mean difference -0.24, 95% CI -0.45 to 0.04, P=.02). CONCLUSIONS: This review does not support the hypothesis that serious games improve PA levels in children with a chronic disease. The meta-analysis on body composition showed positive intervention effects with significantly greater reductions in BMI in favor of the intervention group. A high percentage of nonuse was identified in the study of serious games, and little attention was paid to behavior change theories and specific theoretical approaches to enhance PA in serious games. Small sample sizes, large variability between intervention designs, and limited details about the interventions were the main limitations. Future research should determine which strategies enhance the effectiveness of serious games, possibly by incorporating behavior change techniques.
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Evaluation Tools for Physical Activity Programs for Childhood Cancer: A Scoping Review.
Research on the benefits of physical activity (PA) in childhood cancer has been translated into a handful of community-based programs. However, to foster further translation, an understanding of how to evaluate participant outcomes would be beneficial to provide feedback to participants and stimulate future research. Such a review would provide a summary of acceptable tools for work in this area. The purpose of this scoping review was to identify the evaluation tools that have been used in PA/exercise studies or programs for childhood cancer. This review was conducted using the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. Studies included in the review used physical and psychosocial evaluation tools within PA and exercise programs or research for childhood cancer. In addition, studies with measures of health behavior such as PA levels and activities of daily living were included. Tools that assessed physical fitness and physical performance were excluded. Information on the types of evaluation tools used, mean age of participants, and type of cancer was extracted. Psychometric properties of each evaluation tool are reported. The most commonly assessed patient outcomes were motor performance, fatigue, well-being, functional mobility, and quality of life. Less commonly reported patient outcomes were hope, self-efficacy, and self-perception. None of the evaluation tools reported in the PA/exercise and pediatric oncology literature assess physical literacy. This review was the first step in a knowledge translation process, identifying evaluation tools that have been used in PA/exercise programs in childhood cancer survivors, that will guide the development and evaluation of current and future community-based programs.
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Quality Appraisal of Child Oral Health-Related Quality of Life Measures: A Scoping Review.
Background: Children's oral health-related quality of life (COHQoL) measures are well known and widely used. However, rigorous systematic reviews of these measures and analyses of their quality are in absence. Objectives: To systematically review and quantitatively assess the quality of COHQoL measures through a scoping review. Data sources: Systematic literature search of PubMed, CINAHL (Cumulative Index to Nursing and Allied Health Literature), EMBASE (Excerpta Medica database), HaPI (Health and Psychosocial Instruments), and DOSS (Dentistry and Oral Sciences Source). Study eligibility: The measure's focus was COHQoL; the child age ranged from 5 to 14 years; the publication was either a research article or a systematic review and related to caries; and it was written in English or had an English abstract. Two authors independently selected the studies. Disagreements were reconciled by group discussions with a third author. Appraisal: The International Society for Quality of Life Research minimum standards for patient-reported outcome measures were used for quality appraisal. Synthesis: Descriptive analysis. Results: We identified 18 measures. Their quality scores ranged from 9.5 to 15.0 on a scale of 16. The quality appeared to bear no relationship to the citation and use of these measures. However, elements of these measures might be more useful than others, depending on the age-specific use and primary quality concerns. Limitations: Some of the information on the minimum standards of the 18 measures cannot be found in the existing literature. Measures published without English abstract were not searched. Conclusions: The quality of these measures is suboptimal. Researchers and practitioners in this field should exercise caution when choosing and using these measures. Efforts at improving the quality of the COHQoL measures, such as refining existing ones or developing new measures, are warranted. Knowledge transfer statement: Researchers, clinician scientists, and clinicians can use the results of this study when deciding which oral health-related quality of life measure they wish to use in children.
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Use of synchronous digital health technologies for the care of children with special health care needs and their families: Scoping review
BACKGROUND: Use of synchronous digital health technologies for care delivery to children with special health care needs (having a chronic physical, behavioral, developmental, or emotional condition in combination with high resource use) and their families at home has shown promise for improving outcomes and increasing access to care for this medically fragile and resource-intensive population. However, a comprehensive description of the various models of synchronous home digital health interventions does not exist, nor has the impact of such interventions been summarized to date. OBJECTIVE: We aim to describe the various models of synchronous home digital health that have been used in pediatric populations with special health care needs, their outcomes, and implementation barriers. METHODS: A systematic scoping review of the literature was conducted, guided by the Arksey and O'Malley Scoping Review Framework. MEDLINE, CINAHL, and EMBASE databases were searched from inception to June 2018, and the reference lists of the included systematic reviews and high-impact journals were hand-searched. RESULTS: A total of 38 articles were included in this review. Interventional articles are described as feasibility studies, studies that aim to provide direct care to children with special health care needs, and studies that aim to support family members to deliver care to children with special health care needs. End-user involvement in the design and implementation of studies is evaluated using a human-centered design framework, and factors affecting the implementation of digital health programs are discussed in relation to technological, human, and systems factors. CONCLUSIONS: The use of digital health to care for children with special health care needs presents an opportunity to leverage the capacity of technology to connect patients and their families to much-needed care from expert health care providers while avoiding the expenses and potential harms of the hospital-based care system. Strategies to scale and spread pilot studies, such as involving end users in the co-design techniques, are needed to optimize digital health programs for children with special health care needs.
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Discharge communication practices in pediatric emergency care: a systematic review and narrative synthesis.
Background: The majority of children receiving care in the emergency department (ED) are discharged home, making discharge communication a key component of quality emergency care. Parents must have the knowledge and skills to effectively manage their child's ongoing care at home. Parental fatigue and stress, health literacy, and the fragmented nature of communication in the ED setting may contribute to suboptimal parent comprehension of discharge instructions and inappropriate ED return visits. The aim of this study was to examine how and why discharge communication works in a pediatric ED context and develop recommendations for practice, policy, and research. Methods: We systematically reviewed the published and gray literature. We searched electronic databases CINAHL, Medline, and Embase up to July 2017. Policies guiding discharge communication were also sought from pediatric emergency networks in Canada, USA, Australia, and the UK. Eligible studies included children less than 19 years of age with a focus on discharge communication in the ED as the primary objective. Included studies were appraised using relevant Joanna Briggs Institute (JBI) checklists. Textual summaries, content analysis, and conceptual mapping assisted with exploring relationships within and between data. We implemented an integrated knowledge translation approach to strengthen the relevancy of our research questions and assist with summarizing our findings. Results: A total of 5095 studies were identified in the initial search, with 75 articles included in the final review. Included studies focused on a range of illness presentations and employed a variety of strategies to deliver discharge instructions. Education was the most common intervention and the majority of studies targeted parent knowledge or behavior. Few interventions attempted to change healthcare provider knowledge or behavior. Assessing barriers to implementation, identifying relevant ED contextual factors, and understanding provider and patient attitudes and beliefs about discharge communication were identified as important factors for improving discharge communication practice. Conclusion: Existing literature examining discharge communication in pediatric emergency care varies widely. A theory-based approach to intervention design is needed to improve our understanding regarding discharge communication practice. Strengthening discharge communication in a pediatric emergency context presents a significant opportunity for improving parent comprehension and health outcomes for children. Systematic review registration: PROSPERO registration number: CRD42014007106.
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Discharge communication practices in pediatric emergency care: A systematic review and narrative synthesis
BACKGROUND: The majority of children receiving care in the emergency department (ED) are discharged home, making discharge communication a key component of quality emergency care. Parents must have the knowledge and skills to effectively manage their child's ongoing care at home. Parental fatigue and stress, health literacy, and the fragmented nature of communication in the ED setting may contribute to suboptimal parent comprehension of discharge instructions and inappropriate ED return visits. The aim of this study was to examine how and why discharge communication works in a pediatric ED context and develop recommendations for practice, policy, and research. METHODS: We systematically reviewed the published and gray literature. We searched electronic databases CINAHL, Medline, and Embase up to July 2017. Policies guiding discharge communication were also sought from pediatric emergency networks in Canada, USA, Australia, and the UK. Eligible studies included children less than 19 years of age with a focus on discharge communication in the ED as the primary objective. Included studies were appraised using relevant Joanna Briggs Institute (JBI) checklists. Textual summaries, content analysis, and conceptual mapping assisted with exploring relationships within and between data. We implemented an integrated knowledge translation approach to strengthen the relevancy of our research questions and assist with summarizing our findings. RESULTS: A total of 5095 studies were identified in the initial search, with 75 articles included in the final review. Included studies focused on a range of illness presentations and employed a variety of strategies to deliver discharge instructions. Education was the most common intervention and the majority of studies targeted parent knowledge or behavior. Few interventions attempted to change healthcare provider knowledge or behavior. Assessing barriers to implementation, identifying relevant ED contextual factors, and understanding provider and patient attitudes and beliefs about discharge communication were identified as important factors for improving discharge communication practice. CONCLUSION: Existing literature examining discharge communication in pediatric emergency care varies widely. A theory-based approach to intervention design is needed to improve our understanding regarding discharge communication practice. Strengthening discharge communication in a pediatric emergency context presents a significant opportunity for improving parent comprehension and health outcomes for children.
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Barriers and facilitators of pediatric shared decision-making: a systematic review.
Background: Shared decision-making (SDM) is rarely implemented in pediatric practice. Pediatric health decision-making differs from that of adult practice. Yet, little is known about the factors that influence the implementation of pediatric shared decision-making (SDM). We synthesized pediatric SDM barriers and facilitators from the perspectives of healthcare providers (HCP), parents, children, and observers (i.e., persons who evaluated the SDM process, but were not directly involved). Methods: We conducted a systematic review guided by the Ottawa Model of Research Use (OMRU). We searched MEDLINE, EMBASE, Cochrane Library, CINAHL, PubMed, and PsycINFO (inception to March 2017) and included studies that reported clinical pediatric SDM barriers and/or facilitators from the perspective of HCPs, parents, children, and/or observers. We considered all or no comparison groups and included all study designs reporting original data. Content analysis was used to synthesize barriers and facilitators and categorized them according to the OMRU levels (i.e., decision, innovation, adopters, relational, and environment) and participant types (i.e., HCP, parents, children, and observers). We used the Mixed Methods Appraisal Tool to appraise study quality. Results: Of 20,008 identified citations, 79 were included. At each OMRU level, the most frequent barriers were features of the options (decision), poor quality information (innovation), parent/child emotional state (adopter), power relations (relational), and insufficient time (environment). The most frequent facilitators were low stake decisions (decision), good quality information (innovation), agreement with SDM (adopter), trust and respect (relational), and SDM tools/resources (environment). Across participant types, the most frequent barriers were insufficient time (HCPs), features of the options (parents), power imbalances (children), and HCP skill for SDM (observers). The most frequent facilitators were good quality information (HCP) and agreement with SDM (parents and children). There was no consistent facilitator category for observers. Overall, study quality was moderate with quantitative studies having the highest ratings and mixed-method studies having the lowest ratings. Conclusions: Numerous diverse and interrelated factors influence SDM use in pediatric clinical practice. Our findings can be used to identify potential pediatric SDM barriers and facilitators, guide context-specific barrier and facilitator assessments, and inform interventions for implementing SDM in pediatric practice. Trial registration: PROSPERO CRD42015020527.
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