Advance Care Planning for Children With Rare Diseases: A Pilot RCT.

BACKGROUND AND OBJECTIVE: Pediatric rare diseases are often life-limiting conditions and/or require constant caregiving. Investigators assessed the initial efficacy of the FAmily CEntered (FACE) pediatric advance care planning (pACP), FACE-Rare, intervention on families' quality of life. METHODS: A pilot-phase, single-blinded, intent-to-treat, randomized controlled clinical trial enrolled families from 1 pediatric quaternary hospital between 2021 and 2023. Intervention families received 3 weekly 60-minute (FACE-Rare pACP) sessions: (1) Carer Support Needs Assessment Tool or Action Plan, (2) Carer Support Needs Assessment Tol Action Plan Review, and (3) Pediatric Next Steps: Respecting Choices pACP. Controls received treatment as usual (TAU). Outcome measures were Beck Anxiety Inventory, Family Appraisal of Caregiving, Functional Assessment of Chronic Illness Therapy (FACIT)-Spirituality, and health care utilization. Generalized mixed effect models with γ response assessed the intervention effect at 3-month follow-up. RESULTS: Children (n = 21) were aged 1 to 10 years, 48% male, 24% Black; and 100% technology dependent. Primary family caregivers (n = 21) were aged 30 to 43 years, 19% male, 19% Black; and 27% household income below the Federal poverty level. Dyads underwent 1:1 randomization: 9 to FACE-Rare and 12 to TAU. TAU caregivers reported statistically lower meaning and peace than FACE-Rare caregivers (0.9, P = .03, confidence interval [CI]: 0.75-0.99). Black caregivers reported significantly less caregiver distress (0.7, P = .04, CI: 0.47-0.98) than non-Black caregivers. Poor families reported more anxiety (3.5, P = .002, CI: 1.62-7.94), more caregiver strain (1.2, P = .006, CI: 1.07-1.42); and less family well-being (0.8, P = .02, CI: 0.64-0.95). CONCLUSIONS: FACE®-Rare was feasible, acceptable, safe, and demonstrated initial efficacy, providing greater feelings of meaning and peace to caregivers. Poverty impacted well-being. A multisite trial is needed to determine generalizability.

Caregiver stress and social determinants of health in key populations: immigrant parents, parents of children with medical complexity, and adolescent parents.

PURPOSE OF REVIEW: To examine the five domains of social determinants of health - economic stability, education access, healthcare access and quality, neighborhood and built environment, and social and community context - and how these relate to caregiver stress in under-resourced populations. RECENT FINDINGS: Socioeconomic and family factors are increasingly understood as drivers of child health. Caregiver stress can impact family stability and child wellbeing. Immigrant parents, caregivers of children with medical complexity, and adolescent parents experience stressors due to the unique needs of their families. These groups of parents and caregivers also face various challenges identified as social determinants of health. Interventions to mitigate these challenges can promote resilience, care coordination, and community-based supports. SUMMARY: Current research describes caregiver stress in key populations, how caregiver stress affects children, and approaches to minimize and mitigate these effects. Pediatric providers can implement best practices to support families who are navigating stress due to caregiving and social determinants of health.

Progress in understanding climate change's effects on children and youth.

PURPOSE OF REVIEW: Climate change remains a major threat to the health and well-being of children globally. This article reviews the myriad health effects of climate change on children throughout their lives and discusses ways in which the general pediatrician can be an advocate for climate solutions. RECENT FINDINGS: Rising atmospheric temperatures, increased air pollution, and destabilized weather patterns all lead to adverse health outcomes for children and adverse obstetric outcomes. However, the impact of climate change is not evenly distributed. Children living in poverty are more likely to be adversely impacted by the changing climate. SUMMARY: Ongoing and emerging research suggests that children are particularly vulnerable to the effects of climate change. The primary care pediatrician is encouraged to see this irrefutable evidence as a call to action for advocacy on behalf of our patients and the planet.

The dual pandemics of COVID-19 and racism: impact on early childhood development and implications for physicians.

PURPOSE OF REVIEW: The novel coronavirus (COVID-19) pandemic has highlighted healthcare and racial inequities. This article discusses recent literature documenting the impact of racism on early childhood development, disparities in access to developmental services and ways healthcare providers and health systems can promote physician well being during these difficult times. RECENT FINDINGS: Exposure to racism begins prenatally, and early childhood experiences with racism are intimately tied to adverse physical and mental health outcomes. Early intervention is key to treating children with developmental delay, but disparities exist in accessing eligibility screening and in the provision of services. Paediatric providers are at risk of developing secondary traumatic stress and burnout, which may affect the care that they provide. SUMMARY: New research has led to the development of resources that help paediatric providers address racism, access developmental resources in a novel manner and protect the paediatric workforce from trauma and burnout.

A clinical update on vaccines: focus on determinants of under-immunization and special considerations for adolescents.

PURPOSE OF REVIEW: The current article reviews recent literature related to pediatric and adolescent vaccination, specifically focusing on social determinants of under-immunization, expanding adolescent immunization rates, and new recommendations surrounding the meningococcal serotype B vaccine (MenB). RECENT FINDINGS: Vaccine refusals and vaccine-preventable diseases have been rising in some parts of the world, and appear to be linked to household factors, such as a family's socioeconomic status. Adolescents have lower immunization rates than younger children. Newer vaccines targeted at adolescents, such as the MenB vaccine, have yet to be widely accepted by pediatric providers, parents, and patients. SUMMARY: Pediatric healthcare providers should attempt to increase local immunization rates by vaccinating children at all eligible office visits and utilizing electronic health record decision-support tools. Although the number of families who choose not to vaccinate their children may be rising, providers can be innovative (e.g. incorporate digital vaccine reminder systems) and increase their familiarity with new vaccine recommendations to continue to prevent serious vaccine-preventable diseases.

The Experience of Latina Mothers of Children and Youth With Special Health Care Needs: A Qualitative Study.

Children and youth with special health care needs (CYSHCN) comprise a growing proportion of the pediatric population; the patient- and family-centered medical home provides a comprehensive model for caring for these patients. Given the limited literature available as well as extreme patient vulnerability, we sought to understand the experience of Latino parents in caring for their CYSHCN within our patient-centered medical home in an urban neighborhood in North Philadelphia. A convenience sample of 14 mothers or grandmothers of CYSHCN participated in semistructured interviews, which were analyzed using a thematic, constant comparative approach to identify common themes. Themes identified included "Waiting," "Communication/Trust," "All-Consuming Requirements of Care/Sacrifice," and "Fate/Faith/Blessings." These themes corresponded with identified goals of the patient-centered medical home. Our findings suggest that the principles of the patient-centered medical home can be applied in unique ways to caring for this unique patient population.

Promoting resilience in vulnerable populations: focus on opioid-exposed children, siblings of children with special healthcare needs and support for children through school-based interventions.

PURPOSE OF REVIEW: Resilience is an important factor in withstanding the health consequences of childhood adversity. This article discusses recent literature related to promoting resilience in opioid-exposed children and siblings of children with special healthcare needs. It also addresses ways that school systems can foster childhood resilience. RECENT FINDINGS: Rising rates of opioid-exposed newborns have necessitated the development of multiple strategies to address the medical and social needs of this vulnerable pediatric population. Siblings of children with special healthcare needs are a growing but sometimes overlooked group who have unique challenges that can be supported by healthcare providers. School programs that reward positive behavior and encourage self-regulation through activities like physical activity and mindfulness can foster an environment for improved youth resiliency. SUMMARY: New research has led to the development of resources that help pediatric providers assess the needs of their vulnerable patient populations and foster resilience through attention to these patients' medical, emotional and social needs. Patients benefit from national policy efforts and local school programs that each promote resilience.

Improving Human Papilloma Virus Vaccination Rates at an Urban Pediatric Primary Care Center.

INTRODUCTION: Despite compelling evidence regarding its safety and efficacy, human papilloma virus vaccination rates remain low nationally with high rates of missed vaccination opportunities. Provider recommendation is the most important factor in determining vaccine approval by families; yet, studies show that providers are hesitant to strongly recommend vaccination, especially at younger ages. We hypothesized that educational and quality improvement interventions targeting our clinical team would decrease rates of missed opportunities to vaccinate patients aged 11-13 years and improve vaccination rates among patients aged 9-10 years old. METHODS: This quality improvement project took place at an urban, academic pediatric primary care center in north Philadelphia, which serves as the medical home for over 22,000 patients. A multidisciplinary team performed a series of planned sequential interventions to improve human papilloma virus vaccination rates. The electronic health records of children aged 9-13 who presented to our center from September 2014 through December 2015 were queried. Statistical process control charts and established rules for detecting special cause variation were applied. RESULTS: Rates of missed opportunities to vaccinate 11- to 13-year-old patients decreased from 63% to 18% during the intervention period. Rates of immunization of 9- to 10-year-old patients increased from 56% to 84% during the intervention period. CONCLUSION: This low-cost, multifaceted, interdisciplinary quality improvement project resulted in a decrease in missed opportunities to vaccinate among children aged 11-13 years old and improved the vaccination rates of 9-10 year olds. Ongoing interventions are needed to sustain these efforts and to ensure timely vaccine series completion.

Disparities in access to care in marginalized populations.

PURPOSE OF REVIEW: The current article reviews recent literature related to three groups whose health is affected by barriers to the healthcare system: refugee and immigrant populations; youth who are lesbian, gay, bisexual, transgender, queer, or questioning; and those with mental health problems. RECENT FINDINGS: Refugee and immigrant populations are increasing worldwide, and recent work has focused on improving their access to mental, dental, and preventive care. Lesbian, gay, bisexual, transgender, queer, or questioning youth have unique healthcare needs but frequently lack a support system and may not be forthcoming about their sexuality or sex identity. A rising number of children are being diagnosed with mental health disorders, but due to multiple factors, youth are not receiving the care they need. SUMMARY: Pediatric healthcare providers should be aware of the unique challenges faced by youth displaced from their country of origin, who are lesbian, gay, bisexual, or transgender or are questioning their sexuality or sex identity, and who struggle with mental health disorders. Toolkits, other educational resources, and novel technological advances can assist pediatricians in ensuring optimal health care of these at-risk groups.

Important considerations in adolescent health maintenance: long-acting reversible contraception, human papillomavirus vaccination, and heavy menstrual bleeding.

PURPOSE OF REVIEW: The present article addresses recent research related to three key facets of adolescent preventive care and health maintenance: long-acting reversible contraception, human papillomavirus vaccination, and heavy menstrual bleeding. RECENT FINDINGS: Recent studies suggest that long-acting reversible contraception use results in significantly lower rates of unintended pregnancies, and is well tolerated by nulliparous adolescent females. Additionally, a strong recommendation from a pediatric primary care provider is extremely effective in ensuring human papillomavirus vaccination prior to sexual debut. Finally, heavy menstrual bleeding is often under-recognized in adolescents, and evaluation and treatment of these patients are variable. SUMMARY: Based on the recent literature findings, the pediatric primary care provider should be encouraged to, first, recommend long-acting reversible contraception for prevention of unintended pregnancy in adolescent patients; second, strongly endorse vaccination to protect against human papillomavirus in all patients prior to sexual debut; and, third, screen adolescent females for signs and symptoms of heavy menstrual bleeding.