Children with palliative care needs - the landscape of the nordic countries.

BACKGROUND: To strengthen palliative care for children in the Nordic countries, an updated status of current needs, resources, clinical services, education, and research is necessary to align and consolidate future research. A Nordic research collaboration initiative for children with palliative care needs was assembled in 2023. Building on this initiative, this paper presents an overview of pediatric palliative care (PPC) in the Nordic countries' (a) population characteristics, (b) care models and setting of care, (c) education and training, and (d) research. METHODS: The Nordic initiative researchers collaboratively gathered and assessed available data on the characteristics of PPC within Denmark, Finland, Greenland, Iceland, Norway, the Faroe Islands, Sweden, and Åland. Data were compiled in a matrix with population characteristics, models- and setting of care, education and training, and areas of research in a Nordic context. The findings are narratively and descriptively presented, providing an overview of Nordic PPC. RESULTS: In total, the Nordic child population comprises around six million children (0-19 years), of which about 41.200 are estimated to be living with a life-limiting and/or life-threatening condition. Healthcare services are provided through various care models, ranging from specialized care to homecare settings. Overall, there remain few opportunities for education and training with some exceptions. Also, Nordic research within PPC has been shown to be a growing field although much remains to be done. CONCLUSION: This overview is the first outline of the current PPC in Nordic countries. Although some differences remain important to acknowledge, overall, the strengths and challenges faced within PPC in the Nordic countries are comparable and call for joint action to increase evidence, services, and education to better serve the children, families, and healthcare personnel within PPC. Despite the varying structural premises for PPC, research endeavors aiming to provide evidence in this field seem increasing, timely and relevant for the Nordic countries, as well as the international context.

Supporting Migrant Children in Pediatric Settings: Lessons Learned from the US Migrant Humanitarian Crisis Response.

This article examines the influx of migrants to the United States and highlights current global and local immigration trends. The authors focus on migrant children-specifically the effect of migration trauma in the context of humanitarian responses to the intentional movement of migrants to Democrat-led cities across the US to humanize the compounded effects of migration trauma, restrictive immigration policies, and the current resettlement landscape for migrants. The authors are directly involved with supporting migrant arrivals who have relocated to Chicago from the southern border, and apply field knowledge to articulate current barriers to accessing health care and best practices within pediatric settings supporting migrant arrivals. Clinical and practice implications for medical providers in pediatric settings are included. The article also highlights the role of interdisciplinary collaboration in providing health care to asylum-seeking migrants and implications for transdisciplinary workforce development in this area. [Pediatr Ann. 2024;53(5):e171-e177.].

The intersection of pediatric anesthesiology and social determinants of health.

PURPOSE OF REVIEW: There is increasing evidence of racial and ethnic disparities in pediatric perioperative care, which indicates a need to identify factors driving disparities. Social determinants of health (SDOH) play a fundamental role in pediatric health and are recognized as key underlying mechanisms of healthcare inequities. This article summarizes recent research exploring the influence of SDOH on pediatric perioperative outcomes. RECENT FINDINGS: Despite the scarcity of research exploring SDOH and pediatric perioperative outcomes, recent work demonstrates an association between SDOH and multiple outcomes across the perioperative care continuum. Measures of social disadvantage were associated with preoperative symptom severity, longer hospital stays, and higher rates of postoperative complications and mortality. In some studies, these adverse effects of social disadvantage persisted even when controlling for medical comorbidities and clinical severity. SUMMARY: The existing literature offers compelling evidence of the impact of SDOH on perioperative outcomes in children and reveals a critical area in pediatric anesthesia that necessitates further exploration and action. To improve outcomes and address care inequities, future efforts should prioritize the integration of SDOH assessment into pediatric perioperative research and practice.

Analysis of missed clinic visits, preferred languages, and telemedicine in a pediatric gastroenterology practice.

OBJECTIVES: Previous studies have demonstrated a relationship between socioeconomic disparities and missed clinic visits (MCV). However, the relationship between patient-preferred language and MCVs, particularly with respect to telemedicine, remains relatively underexplored. We sought to characterize the associations between MCV and patient-level predictors, including preferred language, in a large single-center pediatric gastroenterology, hepatology, and nutrition practice. METHODS: This retrospective longitudinal cohort study included all missed or completed outpatient visits in the Gastroenterology, Hepatology, and Nutrition Programs at Boston Children's Hospital from January 1, 2016 to May 20, 2022. Univariate and multivariate hierarchical generalized linear mixed models were employed to identify associations between visit- and patient-level predictors and an MCV outcome. RESULTS: A total of 300,201 visits from 70,710 patients residing in Massachusetts were included. Univariate analyses revealed higher MCV odds for Hispanic patients and those from areas with the highest Social Vulnerability Index (SVI), and these odds increased with telemedicine (Hispanic in-person odds ratio [OR] 5.21 [(95% confidence interval) 4.93-5.52] vs. telemedicine OR 8.79 [7.85-9.83]; highest SVI in-person OR 5.28 [4.95-5.64] vs. telemedicine OR 7.82 [6.84-8.96]). Controlled multivariate analyses revealed that among six language groups, only Spanish language preference was associated with higher MCV odds, which increased with telemedicine (Spanish in-person adjusted OR [aOR] 1.35 [1.24-1.48] vs. telemedicine aOR 2.1 [1.83-2.44]). CONCLUSIONS: Patients preferring Spanish experience unique barriers to care beyond those faced by other language preference groups, and telemedicine may exacerbate these barriers.

Telehealth: Opportunities to Improve Access, Quality, and Cost in Pediatric Care.

The use of telehealth technology to connect with patients has expanded significantly over the past several years, particularly in response to the global coronavirus disease 2019 pandemic. This technical report describes the present state of telehealth and its current and potential applications. Telehealth has the potential to transform the way care is delivered to pediatric patients, expanding access to pediatric care across geographic distances, leveraging the pediatric workforce for care delivery, and improving disparities in access to care. However, implementation will require significant efforts to address the digital divide to ensure that telehealth does not inadvertently exacerbate inequities in care. The medical home model will continue to evolve to use telehealth to provide high-quality care for children, particularly for children and youth with special health care needs, in accordance with current and evolving quality standards. Research and metric development are critical for the development of evidence-based best practices and policies in these new models of care. Finally, as pediatric care transitions from traditional fee-for-service payment to alternative payment methods, telehealth offers unique opportunities to establish value-based population health models that are financed in a sustainable manner.

An Entrustable Professional Activity Addressing Racism and Pediatric Health Inequities.

Racism and discrimination are the root of many pediatric health inequities and are well described in the literature. Despite the pervasiveness of pediatric health inequities, we have failed to adequately educate and prepare general pediatricians and pediatric subspecialists to address them. Deficiencies within education across the entire continuum and in our health care systems as a whole contribute to health inequities in unacceptable ways. To address these deficiencies, the field of pediatrics, along with other specialties, has been on a journey toward a more competency-based approach to education and assessment, and the framework created for the future is built on entrustable professional activities (EPAs). Competency-based medical education is one approach to addressing the deficiencies within graduate medical education and across the continuum by allowing educators to focus on the desired equitable patient outcomes and then develop an approach to teaching and assessing the tasks, knowledge, skills, and attitudes needed to achieve the goal of optimal, equitable patient care. To that end, we describe the development and content of a revised EPA entitled: Use of Population Health Strategies and Quality Improvement Methods to Promote Health and Address Racism, Discrimination, and Other Contributors to Inequities Among Pediatric Populations. We also highlight the ways in which this EPA can be used to inform curricula, assessments, professional development, organizational systems, and culture change.

Culturally Sensitive Interventions in Pediatric Primary Care Settings: A Systematic Review.

CONTEXT: Culturally sensitive interventions in the pediatric primary care setting may help reduce health disparities. Less is known on the development of these interventions, their target groups, and their feasibility, acceptability, and impact on health outcomes. OBJECTIVE: We conducted a systematic review to describe culturally sensitive interventions developed for the pediatric primary care setting. DATA SOURCES: PubMed, Web of Science, Cumulative Index to Nursing and Allied Health Literature, and PsycInfo (January 2000 to July 2020). STUDY SELECTION: Studies were eligible for inclusion if they were (1) original research on an intervention with an evaluation, (2) within a pediatric primary care setting, (3) not limited to education for providers, (4) not limited to interpreter use, and (5) based in the United States. DATA EXTRACTION: The following were extracted: study topic, study design, intervention, cultural sensitivity strategies and terminology, setting, target group, sample size, feasibility, acceptability, and health outcomes. RESULTS: Twenty-five studies described 23 interventions targeting a variety of health topics. Multiple cultural sensitivity strategies were used, most commonly sociocultural (83%). Most interventions (57%) were focused on Hispanic/Latino families. Interventions were generally reported as being feasible and acceptable; some also changed health outcomes. LIMITATIONS: Small samples and heterogenous methods subject to bias were used. Relevant articles may have been missed because of the variety of terms used to describe cultural sensitivity. CONCLUSIONS: The included articles provide preliminary evidence that culturally sensitive interventions can be feasible and effective and may help eliminate disparities for patients from communities with barriers to equitable care.

Acceleration of mobile health for monitoring post-transplant in the COVID-19 era: Applications for pediatric settings.

BACKGROUND: Since the start of the COVID-19 pandemic and consequent lockdowns, the use of telehealth interventions has rapidly increased both in the general population and among transplant recipients. Among pediatric transplant recipients, this most frequently takes the form of interventions on mobile devices, or mHealth, such as remote visits via video chat or phone, phone-based monitoring, and mobile apps. Telehealth interventions may offer the opportunity to provide care that minimizes many of the barriers of in-person care. METHODS: The present review followed the PRISMA guidelines. Sources up until October 2020 were initially identified through searches of PsycInfo® and PubMed® . RESULTS: We identified ten papers that reported findings from adult interventions and five studies based in pediatrics. Eight of the adult publications stemmed from the same two trials; within the pediatric subset, this was the case for two papers. Studies that have looked at mHealth interventions have found high acceptability rates over the short run, but there is a general lack of data on long-term use. CONCLUSIONS: The literature surrounding pediatric trials specifically is sparse with all findings referencing interventions that are in early stages of development, ranging from field tests to small feasibility trials. The lack of research highlights the need for a multi-center RCT that utilizes robust measures of medication adherence and other outcome variables, with longer-term follow-up before telehealth interventions should be fully embraced.

Paediatric NHS 111 Clinical Assessment Services pilot: an observational study.

OBJECTIVE: To determine the feasibility and impact of having paediatric clinicians working in the Clinical Assessment Services (CAS) within NHS 111, a national telephone advice service. DESIGN: Observational study. SETTING: Six NHS 111 providers across England with CAS where volunteer paediatric clinicians (doctors and advanced nurse practitioners (ANPs)) worked between May and December 2020. A data reporting framework was used to compare the outcomes of calls taken by paediatric vs non-paediatric clinicians. PATIENTS: Under 16-year-olds prompting calls to NHS 111 over the study period. MAIN OUTCOME MEASURES: The disposition (final outcome of calls) taken by paediatric versus non-paediatric clinicians, paediatric clinicians' and patient experience. RESULTS: 70 paediatric clinicians (66 doctors and 4 ANPs) worked flexible shifts in six NHS 111 providers' CAS over the study period: 2535 calls for under 16-year-olds were taken by paediatric clinicians and 137 008 by non-paediatric clinicians. Overall, disposition rates differed significantly between the calls taken by paediatric versus (vs) non-paediatric clinicians: 69% vs 43% were advised on self-care only, 13% vs 18% to attend emergency departments (EDs), 13% vs 29% to attend primary care, 1% vs 4% to receive an urgent ambulance call out and 4% vs 6% referred to another health service, respectively. When compared with recent (all age) national whole data sets, the feedback from calls taken by paediatricians noted a greater proportion of patients/carers reporting that their problem was fully resolved (92% vs 27%). CONCLUSIONS: Introducing paediatric specialists into NHS 111 CAS is likely to increase self-care dispositions, and reduce onward referrals to primary care, ED and ambulances. Future work will evaluate the impact of a national paediatric clinical assessment service to which specific case types are streamed.

Exploring factors influencing patient mortality and loss to follow-up in two paediatric hospital wards in Zamfara, North-West Nigeria, 2016-2018.

INTRODUCTION: Child mortality has been linked to infectious diseases, malnutrition and lack of access to essential health services. We investigated possible predictors for death and patients lost to follow up (LTFU) for paediatric patients at the inpatient department (IPD) and inpatient therapeutic feeding centre (ITFC) of the Anka General Hospital (AGH), Zamfara State, Nigeria, to inform best practices at the hospital. METHODS: We conducted a retrospective cohort review study using routinely collected data of all patient admissions to the IPD and ITFC with known hospital exit status between 2016 and 2018. Unadjusted and adjusted rate ratios (aRR) and respective 95% confidence intervals (95% CI) were calculated using Poisson regression to estimate the association between the exposure variables and mortality as well as LTFU. RESULTS: The mortality rate in IPD was 22% lower in 2018 compared to 2016 (aRR 0.78; 95% CI 0.66-0.93) and 70% lower for patients coming from lead-affected villages compared to patients from other villages (aRR 0.30; 95% CI 0.19-0.48). The mortality rate for ITFC patients was 41% higher during rainy season (aRR 1.41; 95% CI 1.2-1.6). LTFU rates in ITFC increased in 2017 and 2018 when compared to 2016 (aRR 1.6; 95% CI 1.2-2.0 and aRR 1.4; 95% CI 1.1-1.8) and patients in ITFC had 2.5 times higher LTFU rates when coming from a lead-affected village. CONCLUSIONS: Our data contributes clearer understanding of the situation in the paediatric wards in AGH in Nigeria, but identifying specific predictors for the multifaceted nature of mortality and LTFU is challenging. Mortality in paediatric patients in IPD of AGH improved during the study period, which is likely linked to better awareness of the hospital, but still remains high. Access to healthcare due to seasonal restrictions contributes to mortalities due to late presentation. Increased awareness of and easier access to healthcare, such as for patients living in lead-affected villages, which are still benefiting from an MSF lead poisoning intervention, decreases mortalities, but increases LTFU. We recommend targeted case audits and qualitative studies to better understand the role of health-seeking behaviour, and social and traditional factors in the use of formal healthcare in this part of Nigeria and potentially similar settings in other countries.

Patient and family experience of telehealth care delivery as part of the CF chronic care model early in the COVID-19 pandemic.

BACKGROUND: During the COVID-19 pandemic, CF centers shifted to a telehealth delivery model. Our study aimed to determine how people with CF (PwCF) and their families experienced telehealth and assessed its quality and acceptability for future CF care. METHODS: The CF Patient and Family State of Care Survey (PFSoC) was fielded from August 31-October 30, 2020. The PFSoC explored themes of overall telehealth quality, ease of use, desirability, and preference for a future mix of in-person and telehealth care. Demographic covariates considered included: gender, age, CFTR modulator status, and region of residence. RESULTS: 424 PwCF and parents of PwCF responded (47% parents). Most (81%) reported a telehealth visit which included a MD/APP and nurse team members. 91% found telehealth easy to use, and 66% reported similar/higher quality than in-person care. One-third (34%) reported the highest desire for future telehealth care, with 45% (n =212) desiring 50% or more of visits conducted via telehealth. Adults were more likely than parents to report highest desire for future telehealth (64% vs. 36%). Respondents who perceived telehealth as similar/higher quality were more likely to desire future telehealth compared to those who perceived telehealth as lower quality (96% vs. 50%). Mixed methods analysis revealed themes affecting perceptions of telehealth. CONCLUSIONS: PwCF desire for future telehealth was influenced by perception of quality and age. Several themes emerged that need to be explored as telehealth is adapted into the CF chronic care model, especially when thinking about integration into pediatric care.

Rasch Analysis of the Pediatric Quality of Life Inventory 4.0 Generic Core Scales Administered to Patients With Duchenne Muscular Dystrophy.

OBJECTIVES: The objective of this study was to examine the psychometric properties of the Pediatric Quality of Life Inventory 4.0 Generic Core Scales (PedsQL 4.0 GCS) in Duchenne muscular dystrophy (DMD), a rare, severely debilitating, and ultimately fatal neuromuscular disease. METHODS: Patients with DMD were recruited from 20 centers across 9 countries as part of the Cooperative International Neuromuscular Research Group Duchenne Natural History Study (NCT00468832). The psychometric properties of the PedsQL 4.0 GCS were examined using Rasch analysis. RESULTS: In total, 329 patients with DMD (mean age 9 years, range 3-18 years, 75% ambulatory) completed the PedsQL 4.0 GCS. The most difficult instrument items, expressing the greatest loss in health-related quality of life, were those associated with emotional well-being (eg, being teased by other children, feeling sad, and not making friends), as opposed to somatic disability (eg, lifting heavy objects, participating in sports, and running). The mean item and person fit residuals were estimated at 0.301 (SD: 1.385) and -0.255 (1.504), respectively. In total, 87% (20 of 23) of items displayed disordered thresholds, and many exhibited nontrivial dependency. The overall item-trait interaction χ2 value was 178 (115 degrees of freedom, P<.001). Our analysis also revealed significant issues with differential item functioning, and by investigating residual principal component loadings, the PedsQL 4.0 GCS total score was found to be multidimensional. CONCLUSIONS: The PedsQL 4.0 GCS records information clinically relevant to patients with DMD, but the total scale score may not be fit for purpose as a measure health-related quality of life in this disease population.

Integration and Impact of Telemedicine in Underserved Pediatric Primary Care.

Telemedicine, more novel in provision of pediatric care, rapidly expanded due to the recent coronavirus disease 2019 pandemic. This study aimed to determine the feasibility of telemedicine for acute and chronic care provision in an underserved pediatric primary care center. Items assessed included patient demographic data, chief complaint, and alternative care locations if telemedicine was not available. In our setting, 62% of telemedicine visits were for acute concerns and 38% for chronic concerns. Of acute telemedicine visits, 16.5% of families would have sought care in the Emergency Department/Urgent Care, and 11.3% would have opted for no care had telemedicine not been offered. The most common chronic issues addressed were attention deficit hyperactivity disorder (80.3%) and asthma (16.9%). Racial disparities existed among our telemedicine visits with Black patients utilizing telemedicine services less frequently than non-Black patients. Telemedicine is feasible for pediatric acute and chronic care, but systems must be designed to mitigate widening racial disparities.

Limitations of Current Rehabilitation Practices in Pediatric Oncology: Implications for Improving Comprehensive Clinical Care.

OBJECTIVE: To identify the proportion of hospitals/clinics in the United States (US) that have a comprehensive pediatric oncology rehabilitation program and characterize current practices. DESIGN: Cross-sectional survey of rehabilitation providers in the US and internationally. SETTING: Electronic or telephone survey. PARTICIPANTS: Rehabilitation or supportive care practitioners employed at a hospital, outpatient clinic, or medical university (N=231). INTERVENTIONS: Electronic and telephone survey. The full electronic survey contained 39 questions, provided opportunities for open-ended responses, and covered 3 main categories specific to pediatric cancer rehabilitation: service delivery, rehabilitation program practices, and education/training. The short telephone survey included 4 questions from the full survey and was designed to answer the primary study objective. MAIN OUTCOME MEASURES: Proportion of hospitals/clinics with a comprehensive pediatric oncology rehabilitation program. RESULTS: This cohort includes rehabilitation providers from 191 hospitals/clinics, 49 states within the US, and 5 countries outside of the US. Of hospitals/clinics represented from the full and short survey, 145 (76%) do not have an established pediatric oncology rehabilitation program. Nearly half of full survey respondents reported no knowledge of the prospective surveillance model, and 65% reported no education was provided to them regarding pediatric cancer rehabilitation. Qualitative survey responses fell into 3 major themes: variability in approach to rehabilitation service delivery, program gaps, and need for additional educational opportunities. CONCLUSIONS: There is evidence of limited comprehensive rehabilitation programming for children with cancer as demonstrated by the lack of programs with coordinated interdisciplinary care, variability in long-term follow-up, and absence of education and training. Research is needed to support the development and implementation of comprehensive pediatric oncology rehabilitation programs.

Understanding the Role of Pharmacometrics-Based Clinical Decision Support Systems in Pediatric Patient Management: A Case Study Using Lyv Software.

Pharmacometrics could play a key role in shifting pediatric pharmacotherapy from dosing for an average patient to individualizing dosing. Clinicians can have these quantitative tools at their disposal without requiring significant training through the development of clinical decision support systems with easy-to-use interfaces that have a back-end analysis engine or pharmacometric model that uses extensive electronic health record data to predict an individualized dose for each patient. There has been increased development of these clinical decision support systems recently, and for these tools to make the proper breakthrough into clinical practice, it is of utmost importance to perform rigorous testing to ensure adequate predictive performance. In this article, we walk through the components of a decision support tool and the testing required to determine its robustness using an example of a decision support tool we developed for vancomycin dosing in pediatrics.

Sleep Assessment for Sleep Problems in Children.

The breadth of childhood sleep problems is broad and can be associated with biologic, psychiatric, behavioral, social, and environmental processes. Unrecognized childhood sleep problems may threaten daytime behaviors and negatively impact school and psychosocial functioning. Left unattended, overall child biopsychosocial development may be impaired. Thus, identifying and addressing sleep problems has potential to optimize childhood health, development, and overall well-being. Nurses need to be cognizant of detrimental impacts of child sleep deprivation and advocate for appropriate sleep assessments while offering sleep education to parents and children.

Pressure injury and risk in the inpatient paediatric and neonatal populations: A single centre point-prevalence study.

INTRODUCTION: Prevention and management of pressure injury is a key nurse-sensitive quality indicator. From clinical insights, pressure injury effects hospitalised neonates and children, however it is unclear how prevalent this is. The aim of this study was to quantify prevalence of pressure injury, assess skin integrity risk level, and quantify preventive interventions in both neonatal and child inpatient populations at a large children's hospital in the UK. METHODS: A cross-sectional study was undertaken, assessing the skin integrity of all children allocated to a paediatric or neonatal bed in June/July 2020. A data collection tool was adapted from two established pressure ulcer point prevalence surveys (EUPAP and Medstrom pre-prevalence survey). Risk assessment was performed using the Braden QD scale. RESULTS: Eighty-eight participants were included, with median age of 0.85 years [range 0-17.5 years), with 32 (36%) of participants being preterm. Median length of hospital stay was 11 days [range 0-174 days]. Pressure ulcer prevalence was 3.4%. The majority of participants had at least two medical devices, with 16 (18.2%) having more than four. Having a medical device was associated with increased risk score of developing pressure injury (odds ratio [OR] 0.03, 95% Confidence Interval [CI] 0.01-0.05, p = 0.02). Most children (39 (44%)) were reported not having proposed preventive measures in place aligned to their risk assessment. However, for those that did, 2 to 4 hourly repositioning was associated with a risk reduction on pressure damage (OR 0.13, 95% CI 0.03-0.23, p = 0.01). CONCLUSION: Overall, we found a low prevalence of pressure injury across preterm infants, children and young people at a tertiary children's hospital. Accurate risk assessment as well as availability and implementation of preventive interventions are a priority for healthcare institutes to avoid pressure injury.