Pediatric hospital medicine and children with medical complexity: past, present, and future

Children with medical complexity, regardless of underlying diagnoses, share similar functional and resource use consequences, including: intensive service needs, reliance on technology, polypharmacy, and/or home care or congregate care to maintain a basic quality of life, high health resource utilization, and, an elevated need for care coordination. The emerging field of complex care is focused on the holistic medical care of these children, which requires both broad general pediatrics skills and specific expertise in care coordination and communication with patients, families, and other medical and non-medical care providers. Many pediatric hospitalists have developed an interest in care coordination for CMC, and pediatric hospitalists are in an ideal location to embrace complex care. As a result of these factors, complex care has emerged as a field with many pediatric hospitalists at the helm, in arenas ranging from clinical care of these patients, research into their care, and education of future providers. The objective of this section of the review article is to outline the past, present, and possible future of children with medical complexity within several arenas in the field of pediatric hospital medicine, including practice management, clinical care, research, education, and quality improvement.     

Children's Oncology Group's 2013 blueprint for research: Behavioral science

Behavioral science has long played a central role in pediatric oncology clinical service and research. Early work focused on symptom relief related to side effects of chemotherapy and pain management related to invasive medical procedures. As survival rates improved, the focused has shifted to examination of the psychosocial impact, during and after treatment, of pediatric cancer and its treatment on children and their families. The success of the clinical trials networks related to survivorship highlights an even more critical role in numerous domains of psychosocial research and care. Within the cooperative group setting, the field of behavioral science includes psychologists, social workers, physicians, nurses, and parent advisors. The research agenda of this group of experts needs to focus on utilization of psychometrically robust measures to evaluate the impact of treatment on children with cancer and their families during and after treatment ends. Over the next 5 years, the field of behavioral science will need to develop and implement initiatives to expand use of standardized neurocognitive and behavior batteries; increase assessment of neurocognition using technology; early identification of at‐risk children/families; establish standards for evidence‐based psychosocial care; and leverage linkages with the broader behavioral health pediatric oncology community to translate empirically supported research clinical trials care to practice. Pediatr Blood Cancer 2013; 60: 1048–1054. © 2012 Wiley Periodicals, Inc.     

Family history in pediatric primary care

The family history is a critical element in pediatric medicine and represents the gateway to the molecular age of medicine for both pediatric clinicians and their patients. The pediatric clinician has several opportunities to obtain a family history and multiple clinical and educational uses for that information. Available methods include paper and digital forms, classical pedigrees, online programs, and focused family history at the time of a new diagnosis or problem. Numerous barriers impede the application of family history information to primary pediatric practice. The most common barrier is the limited amount of time the typical primary care encounter allows for its collection. The family history can be used in many facets of pediatric practice: (1) as a diagnostic tool and guide to testing and evaluation; (2) to identify patterns of inheritance; and (3) as a patient-education tool. The most exciting future use of family history is as a tool for public health and preventive medicine. More accurately identifying children at risk for common chronic conditions such as diabetes, asthma, and cardiovascular disease could change the primary care clinician's approach to pediatric medicine.     

The Pediatric Emergency Care Applied Research Network (PECARN): rationale,development, and first steps

Since its formal recognition as a medical specialty, the field of pediatric emergency medicine has made substantial advances with respect to its scope and sophistication. These advances have occurred in clinical practice as well as in the research base to improve clinical practice. There remain, however, many areas in emergency medical services for children (EMSC) in the out-of-hospital, emergency department (ED), and hospital settings that suffer from a lack of data to guide practice. In an effort to expand the quality and quantity of research in pediatric emergency care, the Pediatric Emergency Care Applied Research Network (PECARN) was created in October of 2001. PECARN is the first federally funded national network for research in EMSC and is the result of cooperative agreement grants funded through the Health Resources and Services Administration with the purpose of developing an infrastructure capable of overcoming inherent barriers to EMSC research. Among these recognized barriers are low incidence rates of serious pediatric emergency events, the need for large numbers of children from varied backgrounds to achieve broadly representative study samples, lack of an infrastructure to test the efficacy of pediatric emergency care, and the need for a mechanism to translate study results into clinical practice. PECARN will serve as a national platform for collaborative research involving the continuum of care within the EMSC system, including out-of-hospital care, patient transport, ED and in-hospital care, and rehabilitation. This article describes the history of EMSC, the need for a national collaborative research network in EMSC, the organization and development of PECARN, and the work plan for the network.     

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.     

Patient‐reported outcome measures for allergy and asthma in children

There is increasing recognition of the importance of patient's perceptions of disease and their assessments of heathcare processes. Patient‐reported outcome measures (PROMs) are therefore now regarded as at least as important as the traditional objective measures of disease. For minors, parental and, except in the very young and severally cognitively impaired, the child's perspectives are important because they provide unique and complementary information. In this review, we summarize the evidence on PROMs for allergy and asthma for use in children. Overall, there are fewer PROMs available for use in children than in adults. We were able to identify some validated pediatric PROMs that have been developed for use in atopic eczema/dermatitis, food allergy, allergic rhinitis/rhinoconjunctivitis, and asthma. There is very limited evidence on deploying these instruments out with research settings. There is therefore a pressing need to report on the experiences of using PROMs for allergy and asthma in routine clinical care. In particular, there is a need to understand how acceptable these are to children/carers, whether they can be incorporated into routine clinical assessments and if they are responsive to changes in treatment made in routine clinical practice.     

The role of the pediatrician in rural emergency medical services for children

In rural America, pediatricians can play a key role in the development, implementation, and ongoing supervision of emergency medical services for children. Pediatricians may represent the only source of pediatric expertise for a large region and are a vital resource for rural physicians (eg, general and family medicine, emergency medicine), other rural health care professionals (physician assistants, nurse practitioners, emergency medical technicians), and local emergency medical services medical directors. They can provide education about management and prevention of pediatric illness and injury; appropriate equipment for the acutely ill or injured child; and acute, chronic, and rehabilitative care. In addition to providing clinical expertise, the pediatrician may be involved in quality assurance, clinical protocol development, and advocacy and may serve as a liaison between emergency medical services and other entities working with children (eg, school nurses, child care centers, athletic programs, and programs for children with special health care needs).     

A history of adjunctive glucocorticoid treatment for pediatric sepsis: moving beyond steroid pulp fiction toward evidence-based medicine.

OBJECTIVES: To review the history of clinical use of corticosteroids with particular reference to adjunctive therapy for severe pediatric sepsis and, in this context, to provide an overview of what is known, what is not known, and what research questions are particularly relevant at this time. DATA SOURCE: Literature review using PubMed, cross-referenced article citations, and the Internet. CONCLUSIONS: The history of corticosteroid use in clinical medicine has been colorful, noisy, and always controversial. Therapeutic corticosteroid indications that initially seemed rational have frequently been refuted on closer, rigorous clinical trial inspection. Although it may be prudent to provide stress-dose steroids to children with septic shock who are clinically at risk for adrenal insufficiency (chronic or recent steroid use, purpura fulminans, etomidate or ketoconazole administration, hypothalamic, pituitary, adrenal disease), the safety and efficacy of stress-dose steroids as general adjunctive therapy for pediatric septic shock have not been established. Glucocorticoid administration does add potential risk to critically ill children. In particular, although adjunctive corticosteroids may hasten resolution of unstable hemodynamics in septic shock, this may occur at the metabolic cost of hyperglycemia. Clinical practice that fosters innovative therapy (off-label use) over research probably represents bad medical and social policy. Accordingly, pediatric critical care researchers have a responsibility to generate pediatric-specific evidence-based medicine for adjunctive corticosteroid therapy for severe sepsis in children.     

Final report of the FOPE II Financing of Pediatric Education Workgroup

Some of the challenges of financing pediatric medical education are shared with all medical education; others are specific to pediatrics. The general disadvantage that funding of graduate medical education (GME) is linked to reimbursement for clinical care has uniquely negative consequences for freestanding children's hospitals because they therefore receive little Medicare GME support. This represents both a competitive disadvantage for such hospitals and an aggregate federal underinvestment in children's health care that now amounts to billions of dollars. The need to subsidize medical student and subspecialty education with clinical practice revenue jeopardizes both activities in pediatric departments already burdened by inadequate reimbursement for children's health care and the extra costs of ambulatory care. The challenges of funding are complicated by rising costs as curriculum expands and clinical education moves to ambulatory settings. Controversies over prioritization of resources are inevitable. Solutions require specification of costs of education and a durable mechanism for building consensus within the pediatric community. Pediatrics 2000;106(suppl):1256-1269; medical student education, continuing medical education, medical subspecialties, children, pediatrics, health maintenance organizations, managed care, hospital finances, children's hospitals.     

Concluding comments: maximizing good patient care and minimizing potential liability when considering complementary and alternative medicine

Our goal for this supplemental issue of Pediatrics was to consider what practitioners, parents, patients, institutions, and policy-makers need to take into account to make good decisions about using complementary and alternative medicine (CAM) to treat children and to develop guidelines for appropriate use. We began by explaining underlying concepts and principles in ethical, legal, and clinical reasoning and then used case scenarios to explore how they apply and identify gaps that remain in practice and policy. In this concluding article, we review our major findings, summarize our recommendations, and suggest further research. We focus on several key areas: practitioner and patient/parent relationships; decision-making; dispute resolution; standards of practice; hospital/health facility policies; patient safety; education; and research. Ethical principles, standards, and rules applicable when making decisions about conventional care for children apply to decision-making about CAM as well. The same is true of legal reasoning. Although CAM use has seldom led to litigation, general legal principles relied on in cases involving conventional medical care provide the starting point for analysis. Similarly, with respect to clinical decision-making, clinicians are guided by clinical judgment and the best interests of their patient. Whether a therapy is CAM or conventional, clinicians must weigh the relative risks and benefits of therapeutic options and take into account their patient's values, beliefs, and preferences. Consequently, many of our observations apply to conventional and CAM care and to both adult and pediatric patients.     

The history of adolescent medicine

The field of adolescent medicine is unique as a subspecialty in that the practice of providing care to teenagers has always been viewed historically as a responsibility of generalists. Scientific advances in subspecialty fields such as endocrinology, gynecology, gastroenterology, infectious disease, and sports medicine were incorporated with considerable success into the general practices of not only pediatricians but also internists and family practitioners. However, societal changes in the past century began to shape the way health professionals thought about adolescents and their families and significantly influenced the practice of providing health care to adolescents. The most notable change, however, was the shift from the traditional role of providing anticipatory guidance to parents toward a reduction of risk-taking behaviors aimed directly at the adolescent. The subspecialty of adolescent medicine thus emerged as an amalgam of researchers, clinicians, and educators, who, through a variety of settings, hoped to advance science, moderate public and social policy, improve health care, and stimulate health promotion to this special population of patients.     

Assessment of pain and anxiety related to painful medical procedures in pediatric oncology

In this article we review the instruments most commonly used in clinical practice and research to assess the pain and anxiety experienced by children with cancer undergoing painful medical procedures. Issues such as the prevalence of pain in childhood cancer, the psychologic impact of medical procedures in children, and the efforts some institutions are making to implement pediatric pain assessment programs are also reviewed, bearing in mind that pain is a subjective and multidimensional experience. Behavioral measures, self-reports, multidimensional assessment tools and physiological measures are included, emphasizing the importance of self-reports, which are considered the gold standard in pediatric pain assessment. This literature review indicates the need for research and for the education of health care professionals in pediatric pain assessment. Finally, recommendations for pediatric pain assessment are suggested.     

Research in pediatric hospital medicine: how research will impact clinical care

Hospitalist medicine has enjoyed a period of rapid growth over the past 10 years and research within this domain is no exception. This article will describe the initial research conducted within the world of pediatric hospital medicine, what the future of research will hold and how this will impact the clinical practice of hospitalists who care for children. This is a review of pertinent literature that represents key progress within the emerging field of pediatric hospital medicine. Research within pediatric hospital medicine has progressed from initial studies defining the emerging field and single-center studies to widely expanding national research networks which aim to prioritize the research needs of the field and use data from multiple centers to enrich the body of evidence that guides clinical practice. The field of pediatric hospital medicine has grown rapidly over the past decade and has an exciting trajectory of ongoing growth and research.     

Multicenter data to improve health for pediatric renal transplant recipients in North America: Complementary approaches of NAPRTCS and IROC

Kidney transplantation increases life expectancy and improves quality of life for children with end‐stage kidney disease, yet sequelae of transplantation and treatment make it difficult for transplant recipients to enjoy health and quality of life similar to their healthy peers. The NAPRTCS network was among the first to use multicenter data to inform improvements in care and outcomes for children with a kidney transplant through observational research. Now, with new technologies and unprecedented access to data, it is possible to create learning health systems as envisioned by the US National Academy of Sciences to seamlessly integrate research and continuous improvement of clinical care. In this review, we present two pre‐eminent North American networks focused on using multicenter data to drive improved care and outcomes for children with a kidney transplant. Whereas, for the past 30 years NAPRTCS has focused on discovery of best practices through observational research and clinical trials, the Improving Renal Outcomes Collaborative, established in 2016, engages patients, families, clinicians, and researchers in redesigning the healthcare delivery system to enable practice change and continuous improvement of health outcomes. We discuss the history and past contributions of these networks, as well as current activities, barriers, and potential future solutions to more fully realize the vision of a true learning health system for pediatric kidney transplant recipients.     

Providing a primary care medical home for children and youth with spina bifida

The pediatric primary care provider in the medical home has a central and unique role in the care of children with spina bifida. The primary care provider addresses not only the typical issues of preventive and acute health care but also the needs specific to these children. Optimal care requires communication and comanagement with pediatric medical and developmental subspecialists, surgical specialists, therapists, and community providers. The medical home provider is essential in supporting the family and advocating for the child from the time of entry into the practice through adolescence, which includes transition and transfer to adult health care. This report reviews aspects of care specific to the infant with spina bifida (particularly myelomeningocele) that will facilitate optimal medical, functional, and developmental outcomes.     

Lessons from 50 years of curing childhood leukaemia

One of the great success stories of modern medicine is undoubtedly the remarkable improvement in outcome for childhood cancer, achieved through the work of the co‐operative groups enrolling patients in randomised controlled trials. In 1965, survival was almost zero; now 5‐year survival rates exceed 80% in high‐income countries. The lessons learned in the care of patients with the most common malignancy in childhood – acute lymphoblastic leukaemia – have been used in all other cancers of childhood and more recently in the management of adults. These lessons can be broadly applied in medical practice, because elements of laboratory science in all branches of pathology, as well as a deep understanding of biochemistry, physiology, pharmacology, genetics and molecular science, run through this story. Far from being a sad area of practice, paediatric haematology and oncology remains the champion of embedded clinical and translational research, diagnosis from bench to bedside and lifelong multidisciplinary management of the child and their family.     

Trends and challenges in international pediatric emergency medicine

PURPOSE OF REVIEW: Pediatric emergency care internationally is practiced in a wide variety of local contexts, and the quality of care varies. International pediatric emergency medicine refers to the spectrum of care provided to children with serious illnesses and injuries globally. This article serves as the first of its kind to characterize current trends and challenges in this area. RECENT FINDINGS: Current trends in international pediatric emergency medicine include international dissemination of pediatric emergency medicine guidelines, pediatric-specific disaster relief training, increasing numbers of pediatric emergency medicine research collaboratives, interest groups and training programs, and increasing numbers of spaces dedicated to pediatric emergency care. Current challenges to the field include inequalities in access to medical research and information, various nonmedical barriers and lack of reports describing approaches to the delivery of pediatric emergency care. SUMMARY: While there are many recent advances in the state of pediatric emergency medicine internationally, there still exist many barriers to the improvement in its quality. Many of these obstacles are not specific to pediatric emergency medicine, but reflect overall disparities between the developing and developed worlds. One first step to overcoming pediatric emergency medicine practiced in isolation is a formal organization of the field of international pediatric emergency medicine.     

Immunizations in the United States: a rite of passage

Today, vaccination is a cornerstone of pediatric preventive health care and a rite of passage for nearly all of the approximately 11,000 infants born daily in the United States. This article reviews the US immunization program with an emphasis on its role in ensuring that vaccines are effective, safe, and available and highlights several new vaccines and recommendations that will affect the health of children and adolescents and the practice of pediatric medicine in future decades.     

Translating scientific advances to improved outcomes for children with sickle cell disease: a timely opportunity

Despite the recent advances made in the care of children with sickle cell disease (SCD), premature mortality, especially among older children and young adults, remains a hallmark of this disease. The lack of survival gains highlights the translational gap of implementing innovations found efficacious in the controlled trial setting into routine clinical practice. Health services research (HSR) examines the most effective ways to finance, organize, and deliver high quality care in an equitable manner. To date, HSR has been underutilized as a means to improve the outcomes for children with SCD. Emerging national priorities in health care delivery, new sources of funding, and evolving electronic data collection systems for patients with SCD have provided a unique opportunity to overcome the translational gap in pediatric SCD. The purpose of this article is to provide a comprehensive HSR agenda to create patient-specific evidence of clinical effectiveness for interventions used in the routine care setting, understand the barriers faced by clinicians to providing high quality care, assess and improve the interactions of patients with the health care system, and measure the quality of care delivered to increase survival for all children and young adults with SCD.     

Sickle cell disease and implementation science: A partnership to accelerate advances

Sickle cell disease (SCD) results in end organ damage and a shortened lifespan. Both the pathophysiology of the disease and the social determinants of health affect patient outcomes. Randomized controlled trials have been completed among this population and resulted in medical advances; however, the gestation of these advances and the lack of penetrance into clinical practice have limited advancements in clinical improvements for many people with SCD. We discuss the role of implementation science in SCD and highlight the need for this science to shorten the length of time to implement evidence‐based care for more people with SCD.