Cost of Pediatric Concurrent Hospice Care: An Economic Analysis of Relevant Cost Components, Review of the Literature, and Case Illustration.

Background: Concurrent care enables seriously ill pediatric Medicaid and Children's Health Insurance Program (CHIP) beneficiaries to continue curative treatments along with the supportive services usually associated with hospice care. Although a few studies have examined pediatric concurrent care, none has explored the economics of this care delivery approach for medically complex children. Objective: The purpose of this study was to identify the cost components relevant for an economic analysis of pediatric concurrent hospice care and demonstrate the use of the cost components in an economic case illustration. Methods: A scoping review of the hospice cost literature was conducted to identify article focused on hospice costs that were published in the journal literature from 2000 to 2019. A preliminary economic analysis was also conducted using a cost-minimization approach with data from a large mid-Atlantic pediatric hospice provider. We compared costs between concurrent versus standard hospice care for children. Results: Fifteen hospice cost articles were identified and no article on concurrent care costs. Most articles in the scoping review focused on hospice personnel costs, followed by supplies/equipment, and other. Personnel and costs were higher for standard hospice children compared with concurrent care, whereas concurrent care children had higher supplies/equipment costs. Conclusions: Identifying cost components are critical to economic analysis of pediatric concurrent care. These findings provide preliminary evidence about the difference in costs between concurrent and standard hospice care for children.

The Relationship Between Spirituality and the Developing Brain: A Framework for Pediatric Oncology.

Development, whether motor, language, social, or spiritual, is the functional expression of complex brain processes throughout one's life span, the foundations of which are laid in childhood. The effects of cancer, chemotherapy, radiation, and surgical procedures on early brain development have been measured using neuroimaging and developmental assessment tools. We propose that spiritual development may be substantially affected in children with oncological diseases that impact underlying brain processes. By drawing connections between science, spirituality, and medicine, we can better address the spiritual needs of children as they cope with oncological diseases, by mitigating emotional, cognitive, and physical symptoms and improving outcomes.

Mindful Mentors: Is a Longitudinal Mind-Body Skills Training Pilot Program Feasible for Pediatric Cardiology Staff?

BACKGROUND: Stress and burnout among medical professionals are common and costly, placing professionals, organizations, and patients at risk. OBJECTIVES: To determine feasibility and acceptability of a longitudinal mind-body skills training initiative to help staff decrease stress and burnout, improve well-being, and empower them to utilize basic mindfulness methods with coworkers, patients, and families. METHODS: Prospective cohort, mixed methods approach. Nurses, doctors, technicians, social workers, child life specialists were eligible to participate. The 12-month curriculum consisted of 16 hours of intensive education/practice over 2 days, with training in mindfulness skills, self-compassion, nonviolent communication, overcoming barriers to practice, and mindful listening/speaking, followed by monthly 1 hour booster/debriefing sessions. RESULTS: A total of 37 staff participated (RN = 18, MD = 5, Technician = 6, Social Worker = 3, Child life = 3, others = 2) in the initial training, and 24 (65%) completed the 3- and 12-month follow-up surveys. Compared with pretraining scores, there were significant improvements 3 to 12 months after the initial training in stress (P < .0001), distress (P ≤ .04), anxiety (P = .01), self-efficacy in providing non-drug therapies (P < .0001), mindfulness (P = .002), burnout (P < .0001), and confidence in providing compassionate care (P < .0001). In addition, 25 (67%) participants initiated projects incorporating what they learned into staff/patient wellness activities. CONCLUSION: This longitudinal pilot program was feasible and was associated with improvements in measures of psychological well-being over the 12-month intervention. The innovative approach of training participants to teach basic techniques to coworkers and other staff can increase the impact of this program beyond any individual participant. Future research will investigate the aspects of implementation and potential effects on patient care and experience.

Successful venoarterial extracorporeal membrane oxygenation for prolonged hepatopulmonary syndrome following pediatric liver transplantation: A case report and review of the literature.

HPS is a major complicating feature of end-stage liver disease. Diagnosis is clinical, and LT is the only definitive treatment. While the general impression is that HPS improves quickly after transplantation, it may not always be the case. We describe the smallest reported child with HPS prior to LT and requiring prolonged venoarterial extracorporeal membrane oxygenation after LT; especially as it is a rare occurrence, physician managing such cases should be aware of the circumstances under which HPS may require specific treatment.

Healing, spirituality and integrative medicine.

Spirituality plays a prominent role in the lives of most palliative patients whether or not they formally adhere to a specific religion and belief. As a result, the palliative care team is frequently called upon to support families who are experiencing their "dark night of the soul" and struggling to make sense of their lives during a healthcare crisis. While conventional religious practices provide a source of comfort and guidance for many of our patients, a significant number of our patients do not have a strong religious community to which to turn. Over the last two decades, more people in Western countries identify themselves as spiritual but not religious and do not belong to an organized faith community. For those patients who express a strong spiritual connection or sense of 'something greater' or 'a higher power', encouraging the exploration of those feelings and beliefs through chaplains, clergypersons, or members of the interdisciplinary palliative care team can help provide context, meaning and purpose in their lives impacted by serious illness. One of the goals of effective palliative care is the facilitation of personal growth and psychological resilience in dealing with one's health challenges. Integrative medicine, also referred to as complementary and alternative medicine, provides a set of tools and philosophies intended to enhance wellness and a sense of wellbeing. Many of the modalities are derived from disciplines such as massage, acupuncture, Rei Ki, aromatherapy, and dietary supplements. The use of integrative medicine in North America is widespread and frequently not shared with one's clinician due to many patients' concerns that clinicians will disapprove of the patient's use of them. In addition to its efficacy in reducing symptoms commonly experienced by patients receiving palliative care (e.g., nausea, pain, depression, and existential suffering), integrative medicine offers non-verbal, non-cognitive avenues for many to achieve a peaceful and calm inner state. The calm state often achieved during integrative medicine treatments is similar to that seen during deep prayer or meditation. In such a transcendent or non-ordinary state of consciousness, many people experience new insights or understanding of their lives and choices they must make. Thus, integrative approaches facilitate patients attaining greater self-awareness and may meet their spiritual needs without the religious overtones that accompany traditional prayer. In so doing, patients may gain greater insight and find inner peace through simple, non-verbal approaches.

Families' Views of Pediatric Palliative Aquatics: A Qualitative Study.

Although pediatric palliative care policies and services have been developed, research in this area continues to lag. An integrated model of palliative care has been suggested by the American Academy of Pediatrics and includes complementary and alternative services aimed at improving the well-being of children and their families. The first-known pediatric palliative aquatics program (PPAP) in California uses several techniques to decrease pain and promote well-being through relaxation and interaction between patients, specialists, and family members. This study investigates the perceptions of family members of their children's experiences with a PPAP. Researchers from an outside institution conducted focus groups and interviews. Themes were extracted from the focus group transcripts using Braun and Clarke's method of inductive thematic analysis. Data were collected at the host site, local libraries, and participant homes. Participants were primary caregivers and siblings (n = 23) of children in a PPAP, an independent children's respite, transitional, and end-of-life care facility in California. The research described and drew implications from the diverse perceptions that family members expressed about the benefits of having a child in the PPAP, including sensory, physical, and social experiences. Although the PPAP aims to promote well-being through relaxation, several other benefits were expressed by family members of children going through the program, including pain relief.

Use of a noninvasive electromagnetic device to place transpyloric feeding tubes in critically ill children.

BACKGROUND: The start of transpyloric feedings is often delayed because of challenges in reliably placing tubes blindly at the bedside. OBJECTIVE: To determine whether tube placement with the guidance of a noninvasive computerized electromagnetic device shortens the time needed to achieve accurate placement of transpyloric feeding tubes in critically ill children. METHODS: In a prospective, randomized trial in a tertiary-care, university-affiliated pediatric intensive care unit, 49 children requiring transpyloric feeding tube placement were randomized to have their tube placed by using conventional blind technique or with the assistance of a noninvasive electromagnetic device. RESULTS: Twenty-seven patients were randomized to blind placement, and 22 were randomized to the electromagnetic device group. The time required to place the tubes successfully was significantly longer (P < .03) in the electromagnetic device group (median, 9.5 minutes; 95% confidence interval, 7-13 minutes) compared with the conventional placement group (median, 5 minutes; 95% confidence interval, 4.0-7.0 minutes). CONCLUSIONS: Placement of transpyloric feeding tubes with the guidance of a noninvasive electromagnetic device significantly increases the time required for accurate placement. Because placement of transpyloric feeding tubes in critically ill children is common practice in many pediatric intensive care units, technology that delays satisfactory placement may be counterproductive in experienced hands.

Lack of irrefutable validation does not negate clinical utility of near-infrared spectroscopy monitoring: learning to trust new technology.

Reliance on new monitoring device technology is based upon an understanding of how the device operates and its reliability in a specific clinical setting. The introduction of new monitoring devices will therefore elicit either distrust of the new technology and the data presented or adoption of new devices. The use of near-infrared spectroscopy (NIRS) technology to monitor vital organs in postoperative pediatric cardiac surgery patients has been extensively described yet controversy remains as to the use of this monitoring device. The following retrospective case series demonstrates how learning from trends in data elicited from 2-site NIRS monitoring provided important bedside insights. These insights led to changes in clinician behavior and reliance on NIRS monitoring for early recognition of clinically silent deteriorations. Disregard for the NIRS data may have led to a fatal outcome in an unstable patient who might have received more timely intervention if the NIRS data had been acknowledged earlier. This case series demonstrates that 2-site NIRS monitoring accurately reflects situations in which poor clinical outcomes may occur when declining trends in somatic tissue oxygen saturations are not corrected. Physician management of the postoperative pediatric cardiac surgery patient can change based upon the insights gained through the application of NIRS monitoring.

Massage therapy in outpatient pediatric chronic pain patients: do they facilitate significant reductions in levels of distress, pain, tension, discomfort, and mood alterations?

BACKGROUND AND OBJECTIVES: This study was designed to look at the efficacy of adjuvant massage therapy in children and adolescents who presented to a chronic pediatric pain clinic for management. METHODS: After Institutional Review Board approval and informed consent and assent was obtained, all pediatric patients who presented to the outpatient chronic pain clinic at Children's Memorial Hospital from July 2006 to May 2007 were invited to participate in a study that offered massage therapy as an adjunct to conventional pain treatment. Patients (n = 80 sessions, 57 patients) were asked to rate their levels of distress, pain, tension, discomfort, and degree of upset mood on a scale of 1-5 (e.g. for distress 1 = very calm; 5 = very distressed) before and after massage therapy. Paired t-tests were used to compare pre- and postmassage ratings and probability values were corrected for multiple comparisons using the Bonferroni procedure. RESULTS: After massage therapy, patients reported highly significant improvement in their levels of distress, pain, tension, discomfort, and mood compared with their premassage ratings (all t-values >6.1, ****P < 1 x 10(-8). To control for the possible effects of patients reporting improvements simply as a result of rating their symptoms, we collected control ratings before and after a comparable 'no intervention' time period in a subset of 25 patients. The 'no intervention' time period typically took place in the treatment room with the therapist present. Approximately 60% of the control ratings were obtained before the intervention and 40% were obtained after the massage therapy. None of the differences between the pre- and postratings associated with the 'no intervention' control time period were significant. In these same patients, the difference between the pre- and postmassage ratings were significant, all t-values >3.8, **P < 0.001.

Conventional mechanical ventilation in pediatrics.

OBJECTIVE: To review the various challenges of providing mechanical ventilation to pediatric patients with diseases of increased airway resistance, diseases of abnormal lung compliance or normal lungs. SOURCES: Original data from our pediatric intensive care unit and animal research laboratory. Relevant articles included in the MEDLINE electronic database during the last 10 years. Also included were book chapters and definitive studies, as judged by the authors, in the fields of asthma, acute respiratory distress syndrome, mechanical ventilation, ventilator-induced lung injury and permissive hypercapnia. SUMMARY OF THE FINDINGS: Mechanical ventilation of patients with diseases of increased airway resistance should center on avoidance of dynamic hyperinflation, allowing complete exhalation prior to the initiation of a subsequent breath and permissive hypercapnia. Positive end-expiratory pressure should be used sparingly to prevent atelectasis and facilitate synchrony in spontaneously breathing patients. Mechanical ventilation of patients with diseases of abnormal lung compliance should take into consideration the inhomogeneous distribution of lung disease. Focus should be on avoidance of volutrauma and atelectrauma that could result in ventilator-associated lung injury. CONCLUSIONS: The last decade was marked by significant advances in the management of pediatric respiratory failure. The choice of mechanical ventilation strategy can significantly influence the subsequent course of lung injury. Mechanical ventilation can no longer be viewed simply as a harmless support modality that is employed to keep patients alive while disease-specific treatments are used to ameliorate the underlying pathology.

Ventilação mecânica convencional em pediatria / Conventional mechanical ventilation in pediatrics

OBJETIVO: Revisar os vários desafios existentes na ventilação mecânica de pacientes pediátricos com doenças de resistência elevada das vias aéreas, complacência pulmonar anormal ou pulmões normais. FONTES DOS DADOS: Dados originais coletados em nossa unidade de tratamento intensivo pediátrico e em nosso laboratório de pesquisa animal. Artigos pertinentes incluídos na base de dados MEDLINE durante os últimos 10 anos. Também foram incluídos capítulos de livros e estudos definitivos, a critério dos autores, sobre asma, síndrome do desconforto respiratório agudo, ventilação mecânica, lesão pulmonar induzida pelo ventilador e hipercapnia permissiva. SíNTESE DOS DADOS: O foco da ventilação mecânica de pacientes com doenças que resultam em resistência elevada das vias aéreas deve centrar-se na hipercapnia permissiva e prevenção de hiperinsuflação dinâmica, permitindo exalação total antes do início da inspiração subseqüente. A pressão expiratória final positiva deve ser usada comedidamente para evitar atelectasia e facilitar a sincronia em pacientes com respiração espontânea. A ventilação mecânica de pacientes com doenças de complacência pulmonar anormal deve levar em consideração a distribuição heterogênea da lesão pulmonar. O enfoque deve ser na prevenção de volutrauma e atelectrauma, que podem resultar em lesão pulmonar associada ao ventilador. CONCLUSÕES: A última década foi marcada por significativos avanços no manejo de insuficiência respiratória em pacientes pediátricos. A escolha da estratégia de ventilação mecânica pode influenciar significativamente o curso subseqüente da lesão pulmonar. A ventilação mecânica não pode ser vista apenas como uma mera modalidade de suporte usada para manter os pacientes vivos enquanto que tratamentos específicos à doença são empregados para melhorar a patologia de base.

OBJECTIVE: To review the various challenges of providing mechanical ventilation to pediatric patients with diseases of increased airway resistance, diseases of abnormal lung compliance or normal lungs. SOURCES: Original data from our pediatric intensive care unit and animal research laboratory. Relevant articles included in the MEDLINE electronic database during the last 10 years. Also included were book chapters and definitive studies, as judged by the authors, in the fields of asthma, acute respiratory distress syndrome, mechanical ventilation, ventilator-induced lung injury and permissive hypercapnia. SUMMARY OF THE FINDINGS: Mechanical ventilation of patients with diseases of increased airway resistance should center on avoidance of dynamic hyperinflation, allowing complete exhalation prior to the initiation of a subsequent breath and permissive hypercapnia. Positive end-expiratory pressure should be used sparingly to prevent atelectasis and facilitate synchrony in spontaneously breathing patients. Mechanical ventilation of patients with diseases of abnormal lung compliance should take into consideration the inhomogeneous distribution of lung disease. Focus should be on avoidance of volutrauma and atelectrauma that could result in ventilator-associated lung injury. CONCLUSIONS: The last decade was marked by significant advances in the management of pediatric respiratory failure. The choice of mechanical ventilation strategy can significantly influence the subsequent course of lung injury. Mechanical ventilation can no longer be viewed simply as a harmless support modality that is employed to keep patients alive while disease-specific treatments are used to ameliorate the underlying pathology.

MLCK210 gene knockout or kinase inhibition preserves lung function following endotoxin-induced lung injury in mice.

Barrier dysfunction, involving the endothelium or epithelium, is implicated in the pathophysiology of many disease states, including acute and ventilator-associated lung injury. Evidence from cell culture, in vivo and clinical studies, has identified myosin light chain kinase as a drug discovery target for such diseases. Here, we measured disease-relevant end points to test the hypothesis that inhibition of myosin light chain kinase is a potential therapeutic target for treatment of barrier dysfunction resulting from acute lung injury. We used a combined gene knockout and chemical biology approach with an in vivo intact lung injury model. We showed that inhibition of myosin light chain kinase protects lung function, preserves oxygenation, prevents acidosis, and enhances survival after endotoxin exposure with subsequent mechanical ventilation. This protective effect provided by the small molecule inhibitor of myosin light chain kinase is present when the inhibitor is administered during a clinically relevant injury paradigm after endotoxin exposure. Treatment with inhibitor confers additional protection against acute lung injury to that provided by a standard protective mode of ventilation. These results support the hypothesis that myosin light chain kinase is a potential therapeutic target for acute lung injury and provide clinical end points of arterial blood gases and pulmonary compliance that facilitate the direct extrapolation of these studies to measures used in critical care medicine.

Pediatric End-of-Life Issues and Palliative Care.

Optimizing the quality of medical care at the end of life has achieved national status as an important health care goal. Palliative care, a comprehensive approach to treating the physical, psychosocial and spiritual needs of patients and their families facing life-limiting illnesses, requires the coordinated efforts of a multidisciplinary group of caregivers. Understanding the basic principles of palliative care can aid emergency department staff in identifying patients who could benefit from palliative care services and in managing the challenging situations that arise when such patients present to the hospital for care.In this article we present the overall philosophy of pediatric palliative care, describe key elements of quality palliative care, and identify additional referral sources readers can access for more information.

Is permissive hypercapnia a beneficial strategy for pediatric acute lung injury?

It is clear that mechanical ventilation strategies influence the course of lung disease, and the choice of a ventilation strategy that avoids volutrauma and atelectrauma is firmly based on experimental literature and clinical experience. The application of a lung-protective strategy with reduced tidal volumes, effective lung recruitment, adequate PEEP to minimize alveolar collapse during expiration, and permissive hypercapnia has been shown to be advantageous in adult patients who have ARDS, although it has not been systematically studied in children. A significant body of literature confirms the beneficial effects of hypercapnic acidemia in the setting of acute lung injury. As a corollary, experimental evidence indicates that buffering hypercapnic acidosis abrogates its protective effects. The use of permissive hypercapnia as part of a lung-protective strategy in children should be accepted and perhaps even desired, provided it does not result in significant hemodynamic instability. This acceptance should be tempered with the recognition that a low-stretch, reduced-tidal volume strategy without hypercapnia has also been shown to improve outcomes in adults who have ARDS and that HFOV can generally provide lung-protective ventilation without necessarily inducing hypercapnia. Thus, a synthesis of the available clinical and research data strongly supports a graded approach to managing patients who have acute lung injury requiring intubation. The highest priority should be a mechanical ventilation strategy that limits the tidal volume, with the allowance of hypercapnia to a degree that does not compromise hemodynamic status.

Clinical trial design--effect of prone positioning on clinical outcomes in infants and children with acute respiratory distress syndrome.

PURPOSE: This paper describes the methodology of a clinical trial of prone positioning in pediatric patients with acute lung injury (ALI). Nonrandomized studies suggest that prone positioning improves oxygenation in patients with ALI/acute respiratory distress syndrome without the risk of serious iatrogenic injury. It is not known if these improvements in oxygenation result in improvements in clinical outcomes. A clinical trial was needed to answer this question. MATERIALS AND METHODS: The pediatric prone study is a multicenter, randomized, noncrossover, controlled clinical trial. The trial is designed to test the hypothesis that at the end of 28 days, children with ALI treated with prone positioning will have more ventilator-free days than children treated with supine positioning. Secondary end points include the time to recovery of lung injury, organ failure-free days, functional outcome, adverse events, and mortality from all causes. Pediatric patients, 42 weeks postconceptual age to 18 years of age, are enrolled within 48 hours of meeting ALI criteria. Patients randomized to the prone group are positioned prone within 4 hours of randomization and remain prone for 20 hours each day during the acute phase of their illness for a maximum of 7 days. Both groups are managed according to ventilator protocol, extubation readiness testing, and sedation protocols and hemodynamic, nutrition, and skin care guidelines. CONCLUSIONS: This paper describes the process, multidisciplinary input, and procedures used to support the design of the clinical trial, as well as the challenges faced by the clinical scientists during the conduct of the clinical trial.

Perfluorooctyl bromide (perflubron) attenuates oxidative injury to biological and nonbiological systems.

OBJECTIVE: To examine whether perfluorooctyl bromide (perflubron) is capable of protecting biological and nonbiological systems against oxidative damage through a mechanism independent of its known anti-inflammatory property. DESIGN: A controlled, in vitro laboratory study. SETTING: Research laboratory of a health sciences university. SUBJECTS: Rat pulmonary artery endothelial cell cultures (biological system) and linoleic acid in sodium dodecyl sulfate micelles (nonbiological system). INTERVENTIONS: Rat pulmonary artery endothelial cells labeled with dichlorofluorescein diacetate and incubated with perflubron or culture media (control) were exposed to H2O2. H2O2-induced fluorescence of dichlorofluorescein diacetate was measured as an index of intracellular oxidative stress. In another experiment, linoleic acid in sodium dodecyl sulfate micelles was exposed to various concentrations of the azo initiator 2,2'-diazo-bis-(2-amidinopropane) dihydrochloride (2, 4, 20, and 50 mM) in the presence or absence of perflubron. Malondialdehyde measurements were obtained as a marker of oxidative damage to linoleic acid. MEASUREMENTS AND MAIN RESULTS: Cell monolayers incubated with perflubron exhibited 66.6% attenuation in intracellular fluorescence compared with controls (p < .05). Linoleic acid in sodium dodecyl sulfate micelles incubated with perflubron and exposed to 2, 4, 20, or 50 mM of 2,2'-diazo-bis-(2-amidinopropane) dihydrochloride showed less evidence of lipid peroxidation as indicated by lower malondialdehyde measurements at 240 mins (10.6%, 16%, 41%, and 14.2%, respectively) compared with controls. CONCLUSIONS: Perflubron attenuates oxidative damage to both biological and nonbiological systems. This newly recognized property of perflubron is independent of its anti-inflammatory properties.