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1.
Pediatr Blood Cancer ; 70(12): e30688, 2023 Dec.
Artículo en Inglés | MEDLINE | ID: mdl-37737717

RESUMEN

BACKGROUND: An effective chemotherapy calendar system between the clinician and the patient/caregiver can improve patient-centered outcomes. There is lack of research on how chemotherapy calendars are created and what aspects are important to pediatric oncology physicians. PROCEDURE: In an online survey of pediatric oncology physicians, we evaluated institutional practices, perceptions of chemotherapy calendar creation, and desires for future tools. A total of 220 survey participants provided data (10.4% participant response rate) from 123 institutions (53.5% represented institutions). RESULTS: Participants indicated that 72% always or most of the time their institution provides a chemotherapy calendar, most commonly at the start of a new cycle (90%) or with a dosing change (68%). Factors such as the health literacy of the family, prior nonadherence, type of cancer, and desire of the family affected the creation decision. Advanced practice providers (45%) or nurse coordinator/navigators (43%) were most likely to create the chemotherapy calendar. No significant difference was found between the likelihood of creating a chemotherapy calendar and institutional size (p = .09) or physician years in practice (p = .26). Approximately 95% of participants indicated chemotherapy calendar creation software that improved ease and efficiency would be moderately to extremely useful. CONCLUSION: Future efforts should focus on co-design of an efficient and effective chemotherapy calendar by engaging with nursing and advanced practice providers along with caregivers of children with cancer.


Asunto(s)
Neoplasias , Oncólogos , Médicos , Niño , Humanos , Neoplasias/tratamiento farmacológico , Oncología Médica , Cuidadores
2.
J Pediatr Hematol Oncol ; 45(7): 409-415, 2023 10 01.
Artículo en Inglés | MEDLINE | ID: mdl-37526364

RESUMEN

Clear recommendations are needed on when repeat blood cultures (BCxs) in hospitalized children with cancer should be obtained. We reviewed all BCx obtained on the Hematology-Oncology Unit at Riley Hospital for Children, regardless of reason for patient admission or neutropenia status, between January 2015 and February 2021. Patients with positive BCx within 48 hours of initial cultures, history of stem cell transplant, or admitted to the intensive care unit were excluded. Medical records of patients with new positive BCx drawn >48 hours after initial BCx were reviewed. Seven (1.2%) hospitalization episodes grew new pathogens, or commensals treated as pathogens, on cultures beyond 48 hours. All patients with new, true pathogens were hemodynamically unstable or had recurrent fever when the new positive BCx was obtained. Twenty-three (4.0%) hospitalization episodes had contaminant cultures beyond 48 hours, with 74 (5.4%) of 1362 BCx collected beyond 48 hours being contaminated, resulting in an additional cost of $210,519 from increased length of stay. In conclusion, repeat BCx beyond 48 hours in pediatric hematology-oncology patients with negative initial cultures are low yield and costly. Repeat BCx can be safely and cost-effectively ceased after 48 hours of negative cultures in hemodynamically and clinically stable patients.


Asunto(s)
Bacteriemia , Hematología , Neutropenia , Niño , Humanos , Cultivo de Sangre/métodos , Análisis Costo-Beneficio , Estudios Retrospectivos , Estudios de Cohortes
3.
PLoS One ; 17(9): e0274963, 2022.
Artículo en Inglés | MEDLINE | ID: mdl-36137161

RESUMEN

BACKGROUND: The number of oral anticancer medications has increased over the past few decades, opening new possibilities in cancer care and improving convenience for patients and caregivers. However, adherence levels continue to be suboptimal, potentially jeopardizing therapeutic benefits. Poor adherence levels may indicate gaps in current strategies and interventions aimed at enhancing medication adherence and the extent to which they address the complex and multi-faceted medication management needs of patients and their caregivers. Beyond commonly understood barriers (e.g., forgetting to take medications), adherence interventions must address systemic barriers that may not be fully appreciated by members of the healthcare system. This scoping review aims to apply a systems framework (human factors engineering framework) to examine system elements targeted by adherence enhancing interventions. METHODS: Studies published in English, reporting adherence interventions for oral anticancer medications with adherence and/or persistence as primary outcome measures will be included in this review. We will search the following electronic databases with no limits on dates: Ovid MEDLINE, Cochrane Library, Web of Science Core Collection, Embase, CINAHL Complete, PsycInfo, and Scopus. Two reviewers will independently screen study titles and abstracts for inclusion with a third reviewer adjudicating conflicts. Full text of included articles will be used to extract information on systemic barriers targeted by adherence interventions as well as information about intervention type, outcomes, and study characteristics. Extracted information will be synthesized to generate a summary of work system factors targeted by adherence interventions. DISCUSSION: Through application of a systems-based approach, this scoping review is expected to shed light on the complex and multifaceted nature of factors influencing adherence to oral anticancer agents. The review may also identify areas that are ripe for further research.


Asunto(s)
Antineoplásicos , Cumplimiento de la Medicación , Antineoplásicos/uso terapéutico , Ergonomía , Humanos , Literatura de Revisión como Asunto
4.
JMIR Cancer ; 8(1): e33152, 2022 Mar 16.
Artículo en Inglés | MEDLINE | ID: mdl-35293867

RESUMEN

BACKGROUND: Caregivers face new challenges and tasks when their child is diagnosed with cancer, which can be overwhelming. Mobile technology has the capacity to provide immediate support at their fingertips to aid in tracking symptoms, managing medication, and planning for emergencies. OBJECTIVE: The objective of this study is to engage directly with end users and proxies to co-design and create a mobile technology app to support caregivers in the medical management of their child with cancer. METHODS: We engaged directly with caregivers of children with cancer and pediatric oncology nurse coordinators (proxy end users) to co-design and create the prototype of the Cope 360 mobile health app. Alpha testing was accomplished by walking the users through a series of predetermined tasks that encompassed all aspects of the app including tracking symptoms, managing medications, and planning or practicing for a medical emergency that required seeking care in the emergency department. Evaluation was accomplished through recorded semistructured interviews and quantitative surveys to capture demographic information and measure the system usability score. Interviews were transcribed and analyzed iteratively using NVivo (version 12; QSR International). RESULTS: This study included 8 caregivers (aged 33-50 years) of children with cancer, with most children receiving chemotherapy, and 6 nurse coordinators, with 3 (50%) of them having 11 to 20 years of nursing experience. The mean system usability score given by caregivers was 89.4 (95% CI 80-98.8). Results were grouped by app function assessed with focus on specific attributes that were well received and those that required refinement. The major issues requiring refinement included clarity in the medical information and terminology, improvement in design of tasks, tracking of symptoms including adjusting the look and feel of certain buttons, and changing the visual graph used to monitor symptoms to include date anchors. CONCLUSIONS: The Cope 360 app was well received by caregivers of children with cancer but requires further refinement for clarity and visual representation. After refinement, testing among caregivers in a real-world environment is needed to finalize the Cope 360 app before its implementation in a randomized controlled trial.

5.
Pediatr Qual Saf ; 7(1): e507, 2022.
Artículo en Inglés | MEDLINE | ID: mdl-35071950

RESUMEN

INTRODUCTION: Children with cancer and blood disorders have many healthcare needs that often require inpatient and outpatient management. There is potential for a lapse in care when patients frequently transition between these settings. We aimed to improve the process and increase the rate of scheduled outpatient follow-up appointments at the time of inpatient discharge for all pediatric hematology-oncology patients from a baseline of 68-80%. METHODS: A multidisciplinary team developed several Plan-Do-Study-Act cycles to standardize and improve the process of scheduling follow-up appointments, communication to schedulers, and discussion of discharge planning. QI Macros for Excel Version 2019.06 was used for statistical analysis. Our primary outcome was displayed over time with a p-chart. RESULTS: Plan-Do-Study-Act interventions had a statistically significant impact in increasing the percentage of patients with follow-up outpatient appointments scheduled at the time of inpatient discharge from a baseline of 68% to consistently over 80%. CONCLUSIONS: This study demonstrates that standardization of care processes and reminders and education of healthcare providers about the new approaches can improve the rates of outpatient follow-up appointments scheduled at the time of hospital discharge from inpatient care.

6.
J Pediatr Hematol Oncol ; 44(1): e138-e143, 2022 01 01.
Artículo en Inglés | MEDLINE | ID: mdl-34486540

RESUMEN

Children with cancer require central venous access which carries risk for line-related infections. The necessity of peripheral and central blood cultures is debated for those with fevers. We evaluated and described results for first episode of paired blood cultures from children with cancer who have a central venous line using retrospective database. Blood culture results, laboratory data, and medical outcomes were included. Descriptive analyses of blood culture results and clinical data were performed. There were 190 episodes of paired positive blood cultures with 167 true positive episodes. Of the true positive episodes, 104 (62.3%) were positive in both central and peripheral cultures, 42 (25.1%) were positive in central only cultures, and 21 (12.6%) were positive in peripheral cultures only. Intensive care unit admission within 48 hours after blood cultures (n=33) differed significantly: 28.7% for both central and peripheral, 10% for central only, and 0% for peripheral only (P=0.009). Central line removal (n=34) differed by type of positivity but was not significant: 22.1% for both central and peripheral, 23.8% for central only, and 4.8% for peripheral only (P=0.15). Peripheral blood cultures provided important medical information yet had differences in short-term clinical outcomes. Further evaluation of medical decision making is warranted.


Asunto(s)
Cultivo de Sangre , Infecciones Relacionadas con Catéteres , Fiebre , Unidades de Cuidados Intensivos , Neoplasias , Adolescente , Infecciones Relacionadas con Catéteres/sangre , Infecciones Relacionadas con Catéteres/microbiología , Niño , Preescolar , Femenino , Fiebre/sangre , Fiebre/microbiología , Fiebre/terapia , Humanos , Lactante , Recién Nacido , Masculino , Neoplasias/sangre , Neoplasias/microbiología , Neoplasias/terapia , Estudios Retrospectivos
8.
J Pediatr Hematol Oncol ; 42(8): e723-e729, 2020 11.
Artículo en Inglés | MEDLINE | ID: mdl-32427703

RESUMEN

BACKGROUND: Caregivers of children with cancer can experience stress when seeking care in the emergency department (ED). We sought to assess how caregivers prepare for and manage a medical emergency that arises in the community setting. METHODS: A qualitative evaluation of ED visit preparations taken by children with cancer and their caregivers using self-reported interactive toolkits. Eligible participants included children with cancer (age: 11 to 21 y) currently receiving therapy for cancer diagnosis with an ED visit (besides initial diagnosis) within the previous 2 months and caregivers of same. Participants received a paper toolkit, which were structured as experience maps with several generative activities. Toolkits were transcribed, thematically coded, and iteratively analyzed using NVivo 12.0 software. RESULTS: A total of 25 toolkits were received (7 children, 18 caregivers), with about three quarters of participants living >1 hour from the treating institution. Several important common themes and areas for improvement emerged. Themes included struggles with decision-making regarding when and where to seek ED care, preparing to go to the ED, waiting during the ED visit, repetition of information to multiple providers, accessing of ports, and provider-to-provider and provider-to-caregiver/patient communication. CONCLUSIONS: The information gained from this study has the potential to inform a tool to support this population in planning for and managing emergent medical issues. This tool has the potential to improve patient and caregiver satisfaction, patient-centered outcomes, and clinical outcomes.


Asunto(s)
Cuidadores/psicología , Comunicación , Toma de Decisiones , Servicio de Urgencia en Hospital/estadística & datos numéricos , Evaluación de Necesidades/estadística & datos numéricos , Neoplasias/terapia , Aceptación de la Atención de Salud , Adolescente , Niño , Preescolar , Femenino , Estudios de Seguimiento , Humanos , Lactante , Masculino , Neoplasias/psicología , Encuestas y Cuestionarios
9.
Pediatr Blood Cancer ; 67(6): e28140, 2020 06.
Artículo en Inglés | MEDLINE | ID: mdl-32275120

RESUMEN

BACKGROUND: Children with cancer experience a wide range of conditions that require urgent evaluation in the emergency department (ED), yet variation in admission rates is poorly documented. PROCEDURE: We performed a retrospective cohort study using the Pediatric Health Information System of ED encounters by children with cancer between July 2012 and June 2015. We compared demographics for admitted versus discharged using univariate statistics, and calculated admission rates by hospital, diagnosis, day of the week, and weekend versus weekday. We assessed the degree of interhospital admission rates using the index of dispersion (ID). RESULTS: Children with cancer had 60 054 ED encounters at 37 hospitals. Overall, 62.5% were admitted (range 43.2%-92.1%, ID 2.6) indicating overdispersed admission rates with high variability. Children with cancer that visited the ED for a primary diagnosis of fever experienced the largest amount of variability in admission with rates ranging from 10.4% to 74.1% (ID 8.1). Less variability existed among hospital admission rates for both neutropenia (range 60%-100%, ID 1.0) and febrile neutropenia (FN) (range 66.7%-100%, ID 0.83). Admission rates by day of the week did not demonstrate significant variability for any of the scenarios examined (overall P = 0.91). There were no differences by weekend versus weekday either (overall P = 0.52). CONCLUSION: The percentage of children with cancer admitted through the ED varies widely by institution and diagnosis. Standardization of best practices for children with cancer admitted through the ED should be an area of continued improvement.


Asunto(s)
Servicio de Urgencia en Hospital/estadística & datos numéricos , Fiebre/diagnóstico , Sistemas de Información en Salud/estadística & datos numéricos , Hospitalización/estadística & datos numéricos , Neoplasias/complicaciones , Neutropenia/diagnóstico , Adolescente , Adulto , Niño , Preescolar , Femenino , Fiebre/etiología , Fiebre/prevención & control , Estudios de Seguimiento , Humanos , Lactante , Recién Nacido , Clasificación Internacional de Enfermedades , Masculino , Neutropenia/etiología , Neutropenia/prevención & control , Pronóstico , Estudios Retrospectivos , Adulto Joven
10.
AMIA Annu Symp Proc ; 2020: 896-905, 2020.
Artículo en Inglés | MEDLINE | ID: mdl-33936465

RESUMEN

As part of a larger project to co-design and create a mHealth tool to support caregivers of children with cancer, we performed a pilot, qualitative study. For this portion of the project, we engaged with caregivers of children with cancer to co-create and refine a low-fidelity prototype of the Children's Oncology Planning for Emergencies mHealth tool. Testing was accomplished through recorded semi-structured interviews with each caregiver as they interacted with a low-fidelity wireframe using Adobe Xd. Through the engagement of our key stakeholders, we were able to refine the COPE tool to provide the key elements they desired including pertinent patient medical information, checklist for planning when seeking urgent care, and coordination of care with the medical team and other caregivers.


Asunto(s)
Cuidadores , Neoplasias/terapia , Adolescente , Niño , Preescolar , Urgencias Médicas , Femenino , Humanos , Lactante , Masculino , Oncología Médica , Investigación Cualitativa , Encuestas y Cuestionarios , Telemedicina , Adulto Joven
11.
Pediatr Blood Cancer ; 67(6): e28067, 2020 06.
Artículo en Inglés | MEDLINE | ID: mdl-31724788

RESUMEN

BACKGROUND: Universal newborn screening and improved treatment options have led to increased survival in sickle cell disease (SCD). However, patients with SCD still rely heavily on acute care services. OBJECTIVE: To determine the variation seen in hospitalizations for the top complaints for ED visits for children with SCD nationally. METHODS: We performed a retrospective review of the Pediatric Health Information Systems (PHIS) Database between October 2011 and September 2015. Emergency department (ED) encounters were selected by using International Classification of Diseases, Ninth Edition, Clinical Modification (ICD-9-CM) codes for SCD with and without crisis, fever, and pain. Univariate analyses were performed, as well as index of dispersion (ID) to assess variation by day of the week and region. ANOVA and t-test were used to determine statistical significance. RESULTS: A total of 68 661 ED encounters at 36 hospitals met the criteria for inclusion. Of those encounters, 50.1% were admitted to the hospital. Pain and fever were the most common primary diagnoses among this population. Although variation in hospitalization was seen overall, as well as for a primary diagnosis of pain or fever, this variation was not explained by weekday/weekend designation. CONCLUSION: The results of our study confirm pain and fever as the most common primary diagnoses for children with SCD who seek acute care, as well as demonstrate that while significant variation in hospitalization exists, it is not associated with day of the week. Further studies to elucidate patient- and hospital-level factors that influence admission variation are necessary.


Asunto(s)
Anemia de Células Falciformes/complicaciones , Servicio de Urgencia en Hospital/estadística & datos numéricos , Fiebre/diagnóstico , Sistemas de Información en Salud/estadística & datos numéricos , Hospitalización/estadística & datos numéricos , Dolor/diagnóstico , Adolescente , Adulto , Niño , Preescolar , Femenino , Fiebre/etiología , Fiebre/prevención & control , Estudios de Seguimiento , Humanos , Lactante , Recién Nacido , Clasificación Internacional de Enfermedades , Masculino , Dolor/etiología , Dolor/prevención & control , Pronóstico , Estudios Retrospectivos , Adulto Joven
12.
Pediatr Blood Cancer ; 66(10): e27903, 2019 10.
Artículo en Inglés | MEDLINE | ID: mdl-31309720

RESUMEN

BACKGROUND: Children with cancer have high utilization of the emergency department (ED), but little is known about which outcomes are most important to them and their caregivers when they seek care in the ED. PROCEDURE: A qualitative evaluation of ED experience for children with cancer and their caregivers was performed using self-reported interactive toolkits. Eligible participants included children with cancer (ages 11-19) and caregivers of children with cancer whose child received cancer therapy within the last year and had an ED visit within the last 2 years. Eligible participants received toolkits by mail and received incentives if they completed the toolkit. Toolkits were transcribed, thematically coded, and iteratively analyzed using Nvivo 11.0 software. RESULTS: There were 26 toolkits received-seven by children aged 11-17 years and 19 by caregivers (11 with children aged 2-7 years, eight with children aged 11-17 years). About half were from within 1 h of their treating institution. The most important outcomes to this population included system-level issues (eg, cleanliness of space, timeliness of evaluation) and oncology-provider- and ED-provider-level issues (eg, ability to access port-a-caths, quality of communication). Participants also identified outcomes that were within the control of the patient/caregiver, such as improving their sense of preparedness. CONCLUSION: The important outcomes to children with cancer and their caregivers when they seek care in the ED are distinct from current quality metrics. Future research should focus on the development and validation of a patient-centered outcomes tool.


Asunto(s)
Cuidadores , Servicio de Urgencia en Hospital , Neoplasias , Evaluación del Resultado de la Atención al Paciente , Atención Dirigida al Paciente , Adolescente , Niño , Femenino , Humanos , Masculino
13.
PLoS One ; 14(5): e0216835, 2019.
Artículo en Inglés | MEDLINE | ID: mdl-31120893

RESUMEN

IMPORTANCE: Febrile neutropenia (FN) is the most common oncologic emergency and is among the most deadly. Guidelines recommend risk stratification and outpatient management of both pediatric and adult FN patients deemed to be at low risk of complications or mortality, but our prior single-center research demonstrated that the vast majority (95%) are hospitalized. OBJECTIVE: From a nationwide perspective, to determine the proportion of cancer patients of all ages hospitalized after an emergency department (ED) visit for FN, and to analyze variability in hospitalization rates. Our a priori hypothesis was that >90% of US cancer-associated ED FN visits would end in hospitalization. DESIGN: Analysis of data from the Nationwide Emergency Department Sample, 2006-2014. SETTING: Stratified probability sample of all US ED visits. PARTICIPANTS: Inclusion criteria were: (1) Clinical Classification Software code indicating cancer, (2) diagnostic code indicating fever, and (3) diagnostic code indicating neutropenia. We excluded visits ending in transfer. EXPOSURE: The hospital at which the visit took place. MAIN OUTCOMES AND MEASURES: Our main outcome is the proportion of ED FN visits ending in hospitalization, with an a priori hypothesis of >90%. Our secondary outcomes are: (a) hospitalization rates among subsets, and (b) proportion of variability in the hospitalization rate attributable to which hospital the patient visited, as measured by the intra-class correlation coefficient (ICC). RESULTS: Of 348,868 visits selected to be representative of all US ED visits, 94% ended in hospitalization (95% Confidence Interval [CI] 93-94%). Each additional decade of age conferred 1.23x increased odds of hospitalization. Those with private (92%), self-pay (92%), and other (93%) insurance were less likely to be hospitalized than those with public insurance (95%, odds ratios [OR] 0.74-0.76). Hospitalization was least likely at non-metropolitan hospitals (84%, OR 0.15 relative to metropolitan teaching hospitals), and was also less likely at metropolitan non-teaching hospitals (94%, OR 0.64 relative to metropolitan teaching hospitals). The ICC adjusted for hospital random effects and patient and hospital characteristics was 26% (95%CI 23-29%), indicating that 26% of the variability in hospitalization rate was attributable to which hospital the patient visited. CONCLUSIONS AND RELEVANCE: Nearly all cancer-associated ED FN visits in the US end in hospitalization. Inter-hospital variation in hospitalization practices explains 26% of the limited variability in hospitalization decisions. Simple, objective tools are needed to improve risk stratification for ED FN patients.


Asunto(s)
Servicio de Urgencia en Hospital , Neutropenia Febril , Hospitalización , Neoplasias , Adolescente , Adulto , Anciano , Anciano de 80 o más Años , Niño , Preescolar , Neutropenia Febril/epidemiología , Neutropenia Febril/terapia , Femenino , Humanos , Masculino , Persona de Mediana Edad , Neoplasias/epidemiología , Neoplasias/terapia , Estados Unidos/epidemiología
14.
Support Care Cancer ; 27(9): 3183-3194, 2019 Sep.
Artículo en Inglés | MEDLINE | ID: mdl-30993451

RESUMEN

PURPOSE: The number of pediatric cancer survivors has increased dramatically over recent decades. Prior studies involving pediatric cancer survivors have reported reduced physical activity and fitness levels. Thus, the aim of this meta-analysis was to synthesize previous findings on physical activity and fitness levels of pediatric cancer survivors, who had completed cancer treatment and are in complete remission compared with age-matched, non-athletic healthy controls with no history of cancer diagnosis. METHODS: Three electronic databases (PubMed, Web of Science, and EBSCO) were searched using a combination of 24 terms. Observational studies examining the post-treatment physical activity and/or fitness levels of pediatric cancer survivors compared with that of non-cancer controls and published in peer-reviewed, English-language journals before August 22, 2018 were eligible. Random-effect models were used in Comprehensive Meta-Analysis software for effect-size estimations of eight studies for physical activity and eight for fitness. RESULTS: The studies included a total sample of 2628; 1413 pediatric cancer survivors and 1215 non-cancer controls. Both physical activity and fitness were significantly lower in childhood cancer survivors than in non-cancer controls (g = - 0.889; 95% confidence interval [CI] = - 1.648 - 0.130; p = 0.022) and (g = - 1.435; 95% CI = - 2.615 - 0.225; p = 0.017), respectively, with high heterogeneity. CONCLUSIONS: Pediatric cancer sequelae and its treatment may limit participation in physical activity and fitness activities by survivors of pediatric cancer. Accentuating the need to incorporate physical activity and fitness into treatment protocols and post-treatment recommendations may improve pediatric cancer survivors' health and well-being.


Asunto(s)
Supervivientes de Cáncer , Ejercicio Físico/fisiología , Aptitud Física/fisiología , Adolescente , Adulto , Niño , Preescolar , Femenino , Conductas Relacionadas con la Salud/fisiología , Estilo de Vida Saludable/fisiología , Humanos , Masculino , Neoplasias/terapia , Adulto Joven
15.
BMC Psychol ; 7(1): 8, 2019 Feb 21.
Artículo en Inglés | MEDLINE | ID: mdl-30791950

RESUMEN

BACKGROUND: While it is commonly understood that a cancer diagnosis evokes feelings of fear, the effect of labeling a child's illness as "cancer" remains unstudied. We hypothesized that lower health utility scores would be assigned to disease states labeled as cancer compared to identical disease states without the mention of cancer. METHODS: In this randomized study, caregivers of healthy children were asked to assign health utility values to different scenarios written as improving, stable, or worsening. Participants from general pediatric clinics at Eskenazi Health were randomly assigned to either the scenarios labeled as "cancer" or "a serious illness". Participants then rated the scenarios using the Standard Gamble, with laddering of health utilities between 0 (a painless death) and 1 (perfect health). We also gathered subject demographics and assessed the subject's numeracy. RESULTS: We approached 319 subjects and 167 completed the study. Overall median health utilities of "cancer" scenarios were lower than "serious illness" scenarios (0.61 vs. 0.72, p = 0.018). Multivariate regression (with an outcome of having a utility above the 75th percentile) showed no significant effects by race, ethnicity, numeracy, or income level. "Cancer" scenarios remained significantly lower after adjustment for confounders using logistic regression, but only for the more serious scenarios (OR 0.92, p = 0.048). CONCLUSIONS: On average, caregivers with healthy children were shown to take more risk with their treatment options and view their child as having a worse quality of life when they knew the disease was cancer. Awareness of this bias is important when discussing treatments with families, particularly when a risk of cancer is present.


Asunto(s)
Conocimientos, Actitudes y Práctica en Salud , Neoplasias/psicología , Padres/psicología , Calidad de Vida/psicología , Adulto , Niño , Femenino , Humanos , Masculino
16.
Pediatr Blood Cancer ; 65(11): e27359, 2018 11.
Artículo en Inglés | MEDLINE | ID: mdl-30015371

RESUMEN

BACKGROUND: The use of mobile health (mHealth) has grown exponentially, even by caregivers of vulnerable populations. The study objective was to understand mobile technology usage, barriers, and desires by caregivers of children with cancer. PROCEDURE: Paper surveys were mailed to caregivers of children diagnosed with cancer at Riley Hospital for Children between June 2015 and June 2017. The survey contained 13 questions, both fixed and open-ended, and was sent in both English and Spanish up to three times. RESULTS: Respondents (n = 121) were primarily parents (93.2%), median age was 40.7 years (range 23-63), and most were white, non-Hispanic (74.4%). The majority made under $100,000 annual household income (72.9%) and had an education of at least some college or greater (74.5%). Nearly all owned a smart phone (99.2%) and most (61.2%) owned a tablet. Among operating systems, the majority used iOS (62.8%), while 49.6% used Android. About a third (37.1%) reported no barriers to mobile technology use, but 22.4% experienced "data limitations." Overall, 86.2% wanted at least one medical management website/app: medical knowledge (61.2%), symptom tracking/management (49.1%), and medication reminders (44.8%). Further, 62.1% wanted access to child's medical record and 58.6% wanted communication with medical providers. Lower education was significantly associated with experiencing phone/plan barriers (P = 0.008). CONCLUSION: The majority of caregivers of children with cancer use mobile technology with minimal barriers; future research should focus on designing an mHealth tool to address the medical management needs by caregivers of children with cancer.


Asunto(s)
Cuidadores , Neoplasias , Telemedicina/métodos , Adulto , Teléfono Celular , Computadoras de Mano , Femenino , Humanos , Masculino , Persona de Mediana Edad , Aplicaciones Móviles , Encuestas y Cuestionarios , Adulto Joven
17.
J Cancer Surviv ; 12(5): 639-646, 2018 10.
Artículo en Inglés | MEDLINE | ID: mdl-29943170

RESUMEN

PURPOSE: Survivors of childhood cancer require life-long outpatient healthcare, which may be impacted by health insurance. This study sought to understand survivors' utilization of outpatient healthcare provider services. METHODS: The study examined cross-sectional survey data using an age-stratified sample from the Childhood Cancer Survivor Study of self-reported annual use of outpatient services. Multivariable logistic regression analyses were used to identify risk factors associated with utilization of services. RESULTS: Six hundred ninety-eight survivors were surveyed, median age 36.3 years (range 22.2-62.6), median time from diagnosis 28.8 years (range 23.1-41.7). Almost all (93%) of survivors had at least one outpatient visit during the previous year; 81.3% of these visits were with a primary care providers (PCP), 54.5% were with specialty care physicians, 30.3% were with nurse practitioner/physician's assistants (NP/PA), and 14.2% were with survivorship clinic providers. Survivors with severe to life-threatening chronic health conditions had greater odds of utilizing a specialty care physician (OR = 5.15, 95% CI 2.89-9.17) or a survivorship clinic (OR = 2.93, 95% CI 1.18-7.26) than those with no chronic health conditions. Having health insurance increased the likelihood of seeking care from NP/PA (private, OR = 2.76, 95% CI 1.37-5.58; public, OR = 2.09, 95% CI 0.85-5.11), PCP (private, OR = 7.82, 95% CI 3.80-13.10; public, OR = 7.24, 95% CI 2.75-19.05), and specialty care (private, OR = 2.96, 95% CI 1.48-5.94; public, OR = 2.93, 95% CI 1.26-6.84) compared to without insurance. CONCLUSION: Most childhood cancer survivors received outpatient care from a PCP, but a minority received care from a survivorship clinic provider. Having health insurance increased the likelihood of outpatient care. IMPLICATIONS FOR CANCER SURVIVORS: Targeted interventions in the primary care setting may improve risk-based, survivor-focused care for this vulnerable population.


Asunto(s)
Atención Ambulatoria/métodos , Enfermedad Crónica/epidemiología , Seguro de Salud/normas , Neoplasias/epidemiología , Adulto , Estudios Transversales , Femenino , Humanos , Masculino , Persona de Mediana Edad , Estudios Retrospectivos , Adulto Joven
18.
J Pediatr Hematol Oncol ; 40(6): 445-449, 2018 08.
Artículo en Inglés | MEDLINE | ID: mdl-29771860

RESUMEN

Children with cancer have high emergency department (ED) utilization, but little is known about their chief complaints. A retrospective chart review of ED chief complaints for children with cancer (actively receiving therapy) at Riley Hospital for Children from January 2014 to December 2015 was performed. Proportions of visits and disposition for top 5 chief complaints were determined. Multivariate logistic regression analyzed factors associated with admission. There were 598 encounters by 231 children with cancer. About half (49%) had >1 complaint. The 5 most common primary chief complaints were: fever (60.2%), pain (6.5%), nausea/vomiting (5.0%), bleeding (3.9%), and abnormal laboratory values (3.3%). Admission rates varied, with the highest rates being for nausea/vomiting (66.7%). Risk factors for admission were: hospitalization in prior 4 weeks (odds ratio [OR], 2.67; confidence interval [CI], 1.77-4.02), chief complaint of fever (OR, 1.90; CI, 1.16-3.09). For each increase in number of chief complaints, odds increased by 1.45 (CI, 1.14-1.83). Black, non-Hispanic (OR, 0.44; CI, 0.22-0.88) as compared with white, non-Hispanic, younger age (OR, 0.53; CI, 0.29-0.99) or complaint of abnormal laboratory values (OR, 0.20; CI, 0.06-0.68) had lower odds of admission. Children with cancer present to the ED with multiple and varied complaints. Future interventions could aim to improve caregiver anticipatory guidance and ED visit preparedness.


Asunto(s)
Servicio de Urgencia en Hospital , Neoplasias/terapia , Adolescente , Adulto , Niño , Preescolar , Femenino , Fiebre/etiología , Fiebre/patología , Fiebre/fisiopatología , Fiebre/terapia , Hemorragia/etiología , Hemorragia/fisiopatología , Hemorragia/terapia , Humanos , Lactante , Recién Nacido , Masculino , Náusea/etiología , Náusea/fisiopatología , Náusea/terapia , Neoplasias/patología , Neoplasias/fisiopatología , Dolor/etiología , Dolor/fisiopatología , Manejo del Dolor , Estudios Retrospectivos , Factores de Riesgo
19.
Pediatr Blood Cancer ; 65(8): e27070, 2018 08.
Artículo en Inglés | MEDLINE | ID: mdl-29667725

RESUMEN

There are limited data focused on parental communication needs surrounding the time when a child is diagnosed with cancer. In this systematic review, we synthesized current literature on communication preferences of parents at the time of their child's diagnosis of cancer. We identified 16 studies that yielded 4 major themes parents recognized as important: communication style, content, logistics, and healthcare team. We further identified several concepts that inform parent-centered communication practice. The ensuing pediatric oncology parent-centered communication concept map is meant as a tool to expand providers' communication experience at the time of a new cancer diagnosis.


Asunto(s)
Comunicación en Salud , Neoplasias , Padres , Relaciones Profesional-Familia , Adulto , Niño , Humanos
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