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PURPOSE: Coping with symptoms related to cancer treatment is challenging for pediatric patients with cancer and their caregivers. Additionally, caring for pediatric patients requires specialized expertise to incorporate age-appropriate interventions to improve outcomes. Despite the increase in pediatric inpatient integrative medicine (IM) therapies, there is a paucity of knowledge about whether the utilization of IM therapies differs by patient age. METHODS: We conducted a retrospective analysis on IM utilization among pediatric inpatients between 2008 and 2016 in a tertiary urban cancer center using electronic medical records. Multivariable logistic regression models examined the relationship between age and specific type of IM utilization, adjusting for specific demographic factors. RESULTS: Between 2008 and 2016, the pediatric inpatient IM service had 20 686 visits and treated 1877 unique patients. A significant age difference (P < 0.001) by modality was noted: dance therapy (mean age ± standard deviation: 5.9 ± 5.3 years), music therapy (8.0±7.0 years), mind-body therapies (13.0 ± 7.7 years), massage (14.5 ± 7.8 years), and acupuncture (20.0 ± 7.9 years). In multivariable analysis, the association between age and use of specific IM therapies remained significant (P < 0.001 for all). CONCLUSION: Specific types of inpatient IM therapy usage significantly differed by the age of pediatric patients with cancer; therefore, designing and providing age-appropriate IM interventions with consideration for developmental stage are needed to ensure that the most appropriate and effective therapies are provided to children with cancer.
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Terapia por Acupuntura/estadística & datos numéricos , Danzaterapia/estadística & datos numéricos , Medicina Integrativa/estadística & datos numéricos , Masaje/estadística & datos numéricos , Terapias Mente-Cuerpo/estadística & datos numéricos , Musicoterapia/estadística & datos numéricos , Neoplasias/terapia , Adolescente , Adulto , Niño , Preescolar , Terapia Combinada , Femenino , Estudios de Seguimiento , Humanos , Lactante , Recién Nacido , Masculino , Neoplasias/patología , Pronóstico , Estudios Retrospectivos , Adulto JovenRESUMEN
ABSTRACTObjective:Pediatric bone marrow transplants represent a medically stressful, potentially traumatic experience for children and caregivers, and psychological support for parental caregivers is paramount to their long-term well-being. However, many medical centers do not have protocols in place to sustain caregiver well-being during these distressing experiences. METHOD: We report on a case of a 10-month-old infant with Wiskott Aldrich Syndrome who was hospitalized for bone marrow transplantation. RESULT: We describe the significant burden that fell upon caregivers during and after a bone marrow transplantation. SIGNIFICANCE OF RESULTS: This case helped guide our suggestions to improve care for caregivers. Several logistical hurdles could be overcome to alleviate some of these burdens. We suggest that a child psychologist or psychiatrist should be on patient care teams and be attentive to parental stress, impairments, or impediments to self-care, and signs of emergency of mental illness in this setting of medical trauma. Additionally, promotion of sleep hygiene and linkage to support systems can maximize resiliency. Finally, we believe that hospital administrators should partner with clinicians to facilitate routine support during highly stressful transitions of care.
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Cuidadores/psicología , Síndrome de Wiskott-Aldrich/complicaciones , Trasplante de Médula Ósea/métodos , Costo de Enfermedad , Familia/psicología , Humanos , Lactante , Masculino , Pediatría/métodos , Sistemas de Apoyo Psicosocial , Encuestas y Cuestionarios , Síndrome de Wiskott-Aldrich/psicologíaRESUMEN
OBJECTIVE: To assess the incidence of delirium and its risk factors in hospitalized children with cancer. STUDY DESIGN: In this cohort study, all consecutive admissions to a pediatric cancer service over a 3-month period were prospectively screened for delirium twice daily throughout their hospitalization. Demographic and treatment-related data were collected from the medical record after discharge. RESULTS: A total of 319 consecutive admissions, including 186 patients and 2731 hospital days, were included. Delirium was diagnosed in 35 patients, for an incidence of 18.8%. Risk factors independently associated with the development of delirium included age <5 years (OR = 2.6, P = .026), brain tumor (OR = 4.7, P = .026); postoperative status (OR = 3.3, P = .014), and receipt of benzodiazepines (OR = 3.7,P < .001). Delirium was associated with increased hospital length of stay, with median length of stay for delirious patients of 10 days compared with 5 days for patients who were not delirious during their hospitalization (P < .001). CONCLUSIONS: In this cohort, delirium was a frequent complication during admissions for childhood cancer, and was associated with increased hospital length of stay. Multi-institutional prospective studies are warranted to further characterize delirium in this high-risk population and identify modifiable risk factors to improve the care provided to hospitalized children with cancer.
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Delirio/etiología , Hospitalización , Neoplasias/complicaciones , Adolescente , Niño , Preescolar , Delirio/epidemiología , Femenino , Humanos , Incidencia , Lactante , Recién Nacido , Estudios Longitudinales , Masculino , Análisis Multivariante , Estudios Retrospectivos , Factores de Riesgo , Adulto JovenRESUMEN
Parents and caregivers of children with cancer are both resilient and deeply affected by the child's cancer. A systematic review of published research since 1995 identified 138 studies of moderate quality indicating that parent distress increases around diagnosis, then returns to normal levels. Post-traumatic symptoms are common. Distress may be impairing for vulnerable parents and may impact a child's coping and adjustment. Moderate quality evidence and expert consensus informed a strong recommendation for parents and caregivers to receive early and ongoing assessment of their mental health needs with access to appropriate interventions facilitated to optimize parent, child, and family well being.
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Neoplasias/psicología , Padres/psicología , Psicología/normas , Nivel de Atención/normas , Niño , Humanos , Estrés PsicológicoRESUMEN
OBJECTIVE: To describe a single-institution pilot study regarding prevalence and risk factors for delirium in critically ill children. DESIGN: A prospective observational study, with secondary analysis of data collected during the validation of a pediatric delirium screening tool, the Cornell Assessment of Pediatric Delirium. SETTING: This study took place in the PICU at an urban academic medical center. PATIENTS: Ninety-nine consecutive patients, ages newborn to 21 years. INTERVENTION: Subjects underwent a psychiatric evaluation for delirium based on the Diagnostic and Statistical Manual IV criteria. MEASUREMENTS AND MAIN RESULTS: Prevalence of delirium in this sample was 21%. In multivariate analysis, risk factors associated with the diagnosis of delirium were presence of developmental delay, need for mechanical ventilation, and age 2-5 years. CONCLUSIONS: In our institution, pediatric delirium is a prevalent problem, with identifiable risk factors. Further large-scale prospective studies are required to explore multi-institutional prevalence, modifiable risk factors, therapeutic interventions, and effect on long-term outcomes.
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Delirio/diagnóstico , Delirio/epidemiología , Adolescente , Factores de Edad , Niño , Preescolar , Discapacidades del Desarrollo/epidemiología , Manual Diagnóstico y Estadístico de los Trastornos Mentales , Femenino , Humanos , Lactante , Recién Nacido , Unidades de Cuidado Intensivo Pediátrico , Masculino , Análisis Multivariante , Estudios Observacionales como Asunto , Prevalencia , Estudios Prospectivos , Respiración Artificial/estadística & datos numéricos , Factores de Riesgo , Adulto JovenRESUMEN
OBJECTIVE: The recently validated Cornell Assessment for Pediatric Delirium (CAPD) is a new rapid bedside nursing screen for delirium in hospitalized children of all ages. The present manuscript provides a "developmental anchor points" reference chart, which helps ground clinicians' assessment of CAPD symptom domains in a developmental understanding of the presentation of delirium. METHOD: During the development of this CAPD screening tool, it became clear that clinicians need specific guidance and training to help them draw on their expertise in child development and pediatrics to improve the interpretative reliability of the tool and its accuracy in diagnosing delirium. The developmental anchor points chart was formulated and reviewed by a multidisciplinary panel of experts to evaluate content validity and include consideration of sick behaviors within a hospital setting. RESULTS: The CAPD developmental anchor points for the key ages of newborn, 4 weeks, 6 weeks, 8 weeks, 28 weeks, 1 year, and 2 years served as the basis for training bedside nurses in scoring the CAPD for the validation trial and as a multifaceted bedside reference chart to be implemented within a clinical setting. In the current paper, we discuss the lessons learned during implementation, with particular emphasis on the importance of collaboration with the bedside nurse, the challenges of establishing a developmental baseline, and further questions about delirium diagnosis in children. SIGNIFICANCE OF RESULTS: The CAPD with developmental anchor points provides a validated, structured, and developmentally informed approach to screening and assessment of delirium in children. With minimal training on the use of the tool, bedside nurses and other pediatric practitioners can reliably identify children at risk for delirium.
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Desarrollo Infantil , Cuidados Críticos/métodos , Delirio/diagnóstico , Tamizaje Masivo/métodos , Preescolar , Cuidados Críticos/psicología , Humanos , Lactante , Recién Nacido , Tamizaje Masivo/psicología , Reproducibilidad de los ResultadosRESUMEN
OBJECTIVE: Our aim was to evaluate interrater reliability for the diagnosis of pediatric delirium by child psychiatrists. METHOD: Critically ill patients (N = 17), 0-21 years old, including 7 infants, 5 children with developmental delay, and 7 intubated children, were assessed for delirium using the Diagnostic and Statistical Manual-IV (DSM-IV) (comparable to DSM-V) criteria. Delirium assessments were completed by two psychiatrists, each blinded to the other's diagnosis, and interrater reliability was measured using Cohen's κ coefficient along with its 95% confidence interval. RESULTS: Interrater reliability for the psychiatric assessment was high (Cohen's κ = 0.94, CI [0.83, 1.00]). Delirium diagnosis showed excellent interrater reliability regardless of age, developmental delay, or intubation status (Cohen's κ range 0.81-1.00). SIGNIFICANCE OF RESULTS: In our study cohort, the psychiatric interview and exam, long considered the "gold standard" in the diagnosis of delirium, was highly reliable, even in extremely young, critically ill, and developmentally delayed children. A developmental approach to diagnosing delirium in this challenging population is recommended.
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Cuidados Críticos/psicología , Delirio/diagnóstico , Adolescente , Niño , Preescolar , Estudios de Cohortes , Cuidados Críticos/métodos , Delirio/psicología , Humanos , Lactante , Trastornos Mentales , Reproducibilidad de los Resultados , Índice de Severidad de la Enfermedad , Adulto JovenRESUMEN
OBJECTIVE: To determine validity and reliability of the Cornell Assessment of Pediatric Delirium, a rapid observational screening tool. DESIGN: Double-blinded assessments were performed with the Cornell Assessment of Pediatric Delirium completed by nursing staff in the PICU. These ratings were compared with an assessment by consultation liaison child psychiatrist using the Diagnostic and Statistical Manual IV criteria as the "gold standard" for diagnosis of delirium. An initial series of duplicate Cornell Assessment of Pediatric Delirium assessments were performed in blinded fashion to assess interrater reliability. Nurses recorded the time required to complete the Cornell Assessment of Pediatric Delirium screen. SETTING: Twenty-bed general PICU in a major urban academic medical center over a 10-week period, March-May 2012. PATIENTS: One hundred eleven patients stratified over ages ranging from 0 to 21 years and across developmental levels. INTERVENTION: Two hundred forty-eight paired assessments completed. MEASUREMENTS AND MAIN RESULTS: The Cornell Assessment of Pediatric Delirium had an overall sensitivity of 94.1% (95% CI, 83.8-98.8%) and specificity of 79.2% (95% CI, 73.5-84.9%). Overall Cronbach's α of 0.90 was observed, with a range of 0.87-0.90 for each of the eight items, indicating good internal consistency. A scoring cut point of 9 demonstrated good interrater reliability of the Cornell Assessment of Pediatric Delirium when comparing results of the screen between nurses (overall κ = 0.94; item range κ = 0.68-0.78). In patients without significant developmental delay, sensitivity was 92.0% (95% CI, 85.7-98.3%) and specificity was 86.5% (95% CI, 75.4-97.6%). In developmentally delayed children, the Cornell Assessment of Pediatric Delirium showed decreased specificity of 51.2% (95% CI, 24.7-77.8%) but sensitivity remained high at 96.2% (95% CI, 86.5-100%). The Cornell Assessment of Pediatric Delirium takes less than 2 minutes to complete. CONCLUSIONS: With an overall prevalence rate of 20.6% in our study population, delirium is a common problem in pediatric critical care. The Cornell Assessment of Pediatric Delirium is a valid, rapid, observational nursing screen that is urgently needed for the detection of delirium in PICU settings.
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Delirio/diagnóstico , Unidades de Cuidado Intensivo Pediátrico , Tamizaje Masivo/métodos , Adolescente , Distribución por Edad , Niño , Preescolar , Estudios de Cohortes , Cuidados Críticos/métodos , Delirio/epidemiología , Manual Diagnóstico y Estadístico de los Trastornos Mentales , Estudios de Factibilidad , Femenino , Humanos , Lactante , Recién Nacido , Masculino , Prevalencia , Psicometría , Reproducibilidad de los Resultados , Sensibilidad y Especificidad , Índice de Severidad de la Enfermedad , Distribución por Sexo , Adulto JovenAsunto(s)
Antineoplásicos , Olanzapina , Adolescente , Psiquiatría del Adolescente , Niño , Humanos , Náusea , VómitosRESUMEN
BACKGROUND: Young adults with cancer diagnosed between the ages of 18 to 39 are recognized as a vulnerable group with unique emotional, social, and practical needs that put them at risk of poor psychosocial outcomes and impaired health-related quality of life (HRQOL). This study describes the protocol of a randomized controlled trial to evaluate the efficacy of Bright IDEAS-Young Adults (Bright IDEAS-YA), a problem-solving skills training intervention, on psychosocial outcomes of young adults newly diagnosed with cancer. METHODS: Bright IDEAS-YA is a two-arm, parallel, randomized controlled trial. Young adults are eligible if they are 18-39 years of age, within four months of a first cancer diagnosis, and receiving systemic therapy with life expectancy of at least six months. Participants are randomized 1:1 to Bright IDEAS-YA or enhanced usual care. Survey measures are completed at enrollment and 3, 6, 12, and 24 months. The primary endpoint will be the estimated change from baseline to 6 months in symptoms of depression, anxiety, and psychosocial HRQOL. The other time points are secondary endpoints. Mediators and moderators will be examined. CONCLUSIONS: This randomized trial will determine the efficacy of Bright IDEAS-YA on psychosocial outcomes for young adults newly diagnosed with cancer. Analyses will also examine mechanisms of action and potentially identify subgroups for whom the intervention is particularly useful. TRIAL REGISTRATION: clinicaltrials.gov #NCT04585269.
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Patients with Fanconi anemia (FA) referred for stem cell transplantation (SCT) have multiple psychosocial risk factors and often present in distress in the peritransplant period. Twenty-two patients with FA were referred for psychiatry consultation before, during, or after SCT, across a 13-year period at Memorial Sloan-Kettering Cancer Center. The most common diagnoses were mood (50%), adjustment (46%), and anxiety (23%) disorders and delirium (23%); the most common psychiatric symptoms were anxious/depressed (86%), withdrawn (64%), and aggressive (59%) symptoms. Etiology of the diagnoses and symptoms included: chronic childhood illness, physical and/or neurodevelopmental disability, presence of a genetic syndrome, presence of a cancer predisposition syndrome, exposure to therapeutic androgens, and exposure to pediatric SCT. However, the degree of influence of the different factors could not be determined. In addition, other factors such as impact of sibling illness or loss, extent of treatment nonadherence, level and significance of neurodevelopmental pathologies were identified. Future prospective and possibly multicenter studies will need to be generated for a better understanding and more complete factor analysis.
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Trastornos de Ansiedad/psicología , Depresión/psicología , Anemia de Fanconi/psicología , Anemia de Fanconi/terapia , Trastornos Mentales/psicología , Trasplante de Células Madre/efectos adversos , Adolescente , Adulto , Trastornos de Ansiedad/etiología , Niño , Preescolar , Depresión/etiología , Anemia de Fanconi/complicaciones , Femenino , Humanos , Lactante , Masculino , Trastornos Mentales/etiología , Estudios Retrospectivos , Factores de Riesgo , Adulto JovenRESUMEN
Pediatric delirium is an important comorbidity of medical illness in inpatient pediatric care that has lacked a consistent approach for detection and management. A clinical pathway (CP) was developed to address this need. Pediatric delirium contributes significantly to morbidity, mortality, and costs of inpatient care of medically ill children and adolescents. Screening for delirium in hospital settings with validated tools is feasible and effective in reducing delirium and improving outcomes; however, multidisciplinary coordination is required for implementation. The workgroup, composed of international experts in child and adolescent consultation psychiatry, reviewed the literature and developed a flowchart for feasible screening and management of pediatric delirium. When evidence was lacking, expert consensus was reached; stakeholder feedback was included to create the final pathway. A CP expert collaborated with the workgroup. Two sequential CPs were created: (1) "Prevention and Identification of Pediatric Delirium" emphasizes the need for systematic preventive measures and screening, and (2) "Diagnosis and Management of Pediatric Delirium" recommends an urgent and ongoing search for the underlying causes to reverse the syndrome while providing symptomatic management focused on comfort and safety. Detailed accompanying documents explain the supporting literature and the rationale for recommendations and provide resources such as screening tools and implementation guides. Additionally, the role of the child and adolescent consultation-liaison psychiatrist as a resource for collaborative care of patients with delirium is discussed.
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Vías Clínicas , Delirio/diagnóstico , Delirio/terapia , Medicina Basada en la Evidencia , Hospitalización , Niño , Humanos , Evaluación de NecesidadesRESUMEN
Caregiving stress has been associated with changes in the psychological and physical health of parents of children with cancer, including both partnered and single parents. While parents who indicate "single" on a demographic checklist are typically designated as single parents, a parent can be legally single and still have considerable support caring for an ill child. Correspondingly, an individual can be married/partnered and feel alone when caring for a child with serious illness. In the current study, we report the results from our exploratory analyses of parent self-reports of behavior changes during their child's treatment. Parents (N = 263) of children diagnosed with cancer were enrolled at 10 cancer centers. Parents reported significant worsening of all their own health behaviors surveyed, including poorer diet and nutrition, decreased physical activity, and less time spent engaged in enjoyable activities 6 to 18 months following their child's diagnosis. More partnered parents found support from friends increased or stayed the same since their child's diagnosis, whereas a higher proportion of lone parents reported relationships with friends getting worse. More lone parents reported that the quality of their relationship with the ill child's siblings had gotten worse since their child's diagnosis. Spiritual faith increased for all parents.
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Cuidadores/psicología , Conductas Relacionadas con la Salud , Relaciones Interpersonales , Neoplasias/enfermería , Neoplasias/psicología , Padres/psicología , Espiritualidad , Adaptación Psicológica , Adolescente , Adulto , Niño , Preescolar , Femenino , Humanos , Lactante , Masculino , Persona de Mediana Edad , Autoinforme , Estrés Psicológico , Encuestas y Cuestionarios , Estados UnidosRESUMEN
PURPOSE OF REVIEW: An up-to-date summary of the literature on children's and adolescents' understanding of their own terminal illness and death. RECENT FINDINGS: Clinicians still find it difficult to speak with pediatric patients about death even though guidelines for facilitating communication on the topic exist. As a result, pediatric patients are less likely to develop a clear understanding of their illness and there is a disconnect between clinicians and parents about prognosis, even when clinicians have concluded there is no longer possibility for cure. Insufficient communication and poor understanding may increase the risk of patients feeling isolated, mistrustful and anxious, and deprive them of a role model who can communicate about painful issues or share difficult feelings. Despite these complexities, young people often show remarkable resiliency in the face of death and want to get the most out of the remaining time they have. SUMMARY: In addition to these most recent findings, this review examines the challenges in researching this topic, obstacles to patients receiving information about prognosis, and how physical symptoms affect patients' ability to develop an understanding. It also reviews sources of insight into pediatric patients' understanding including the development of concepts of death, fears about their own death, legal interpretations of what patients understand, and how terminally ill young people continue to treasure life. It concludes by addressing ways clinicians can use the knowledge we have to communicate well with dying children and adolescents and their families.
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Actitud Frente a la Muerte , Comunicación , Cuidados Paliativos/organización & administración , Cuidado Terminal/organización & administración , Enfermo Terminal/psicología , Adolescente , Niño , Miedo , Humanos , Cuidados Paliativos/psicología , Relaciones Profesional-Familia , Pronóstico , Cuidado Terminal/psicología , Enfermo Terminal/legislación & jurisprudencia , Factores de TiempoRESUMEN
OBJECTIVE: Development of a novel screening tool for the detection of delirium in pediatric intensive care unit (PICU) patients of all ages by comparison with psychiatric assessment based on the reference standard Diagnostic and Statistical Manual of Mental Disorders (DSM-IV) criteria. METHODS: This was a prospective blinded pilot study investigating the feasibility of the Cornell Assessment of Pediatric Delirium (CAP-D) performed in a PICU at a university hospital. Fifty patients, ages 3 months to 21 years, admitted to the PICU over a 6-week period were included. No interventions were performed. RESULTS: After informed consent was obtained, two study teams independently assessed for delirium by completing the CAP-D and by conducting psychiatric evaluation based on the DSM-IV criteria. Concordance between the CAP-D and DSM-IV criteria was excellent, at 97%. Prevalence of delirium in this sample was 29%. CONCLUSION: The CAP-D may be a valid screen for identification of delirium in PICU patients of all ages. Further studies are required to explore its validity, inter-rater reliability, and feasibility of use as a nursing screen.