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1.
Palliat Support Care ; 20(4): 462-470, 2022 08.
Artículo en Inglés | MEDLINE | ID: mdl-35876450

RESUMEN

OBJECTIVES: To determine whether engaging in advance care planning (ACP) using a formal tool, Voicing My CHOiCES (VMC), would alleviate adolescent and young adults (AYAs) anxiety surrounding ACP and increase social support and communication about end-of-life care preferences with family members and health care providers (HCPs). METHODS: A total of 149 AYAs aged 18-39 years receiving cancer-directed therapy or treatment for another chronic medical illness were enrolled at seven US sites. Baseline data included prior ACP communication with family members and HCPs and measures of generalized anxiety, ACP anxiety, and social support. Participants critically reviewed each page of VMC and then completed three pages of the document. ACP anxiety was measured again immediately after the completion of VMC pages. One month later, participants repeated anxiety and social support measures and were asked if they shared what they had completed in VMC with a family member or HCP. RESULTS: At baseline, 50.3% of participants reported that they previously had a conversation about EoL preferences with a family member; 19.5% with an HCP. One month later, 65.1% had subsequently shared what they wrote in VMC with a family member; 8.9% shared with an HCP. Most (88.6%) reported they would not have had this conversation if not participating in the study. No significant changes occurred in social support. There was an immediate drop in anxiety about EoL planning after reviewing VMC which persisted at 1 month. Generalized anxiety was also significantly lower 1 month after reviewing VMC. SIGNIFICANCE OF RESULTS: Having a document specifically created for AYAs to guide ACP planning can decrease anxiety and increase communication with family members but not necessarily with HCPs. Future research should examine ways ACP can be introduced more consistently to this young population to allow their preferences for care to be heard, respected, and honored, particularly by their healthcare providers.


Asunto(s)
Planificación Anticipada de Atención , Neoplasias , Cuidado Terminal , Adolescente , Enfermedad Crónica , Comunicación , Familia , Humanos , Neoplasias/complicaciones , Neoplasias/terapia , Adulto Joven
2.
Microb Ecol ; 79(4): 1034-1043, 2020 May.
Artículo en Inglés | MEDLINE | ID: mdl-31754744

RESUMEN

Prophylactic or therapeutic antibiotic use along with chemotherapy treatment potentially has a long-standing adverse effect on the resident gut microbiota. We have established a case-control cohort of 32 pediatric and adolescent acute lymphoblastic leukemia (ALL) patients and 25 healthy siblings (sibling controls) to assess the effect of chemotherapy as well as antibiotic prophylaxis on the gut microbiota. We observe that the microbiota diversity and richness of the ALL group is significantly lower than that of the control group at diagnosis and during chemotherapy. The microbiota diversity is even lower in antibiotics-exposed ALL patients. Although the gut microbial diversity tends to stabilize after 1-year post-chemotherapy, their abundances were altered because of chemotherapy and prophylactic antibiotic treatments. Specifically, the abundances of mucolytic gram-positive anaerobic bacteria, including Ruminococcus gnavus and Ruminococcus torques, tended to increase during the chemotherapy regimen and continued to be elevated 1 year beyond the initiation of chemotherapy. This dysbiosis may contribute to the development of gastrointestinal complications in ALL children following chemotherapy. These findings set the stage to further understand the role of the gut microbiome dynamics in ALL patients and their potential role in alleviating some of the adverse side effects of chemotherapy and antibiotics use in immunocompromised children.


Asunto(s)
Antibacterianos/administración & dosificación , Antineoplásicos/administración & dosificación , Disbiosis/microbiología , Microbioma Gastrointestinal/efectos de los fármacos , Leucemia-Linfoma Linfoblástico de Células Precursoras/tratamiento farmacológico , Adolescente , Estudios de Casos y Controles , Niño , Preescolar , Estudios de Cohortes , Disbiosis/inducido químicamente , Femenino , Humanos , Lactante , Masculino
3.
Oncologist ; 24(12): e1450-e1459, 2019 12.
Artículo en Inglés | MEDLINE | ID: mdl-31147490

RESUMEN

BACKGROUND: Despite international evidence about fertility preservation (FP), several barriers still prevent the implementation of equitable FP practice. Currently, oncofertility competencies do not exist. The aim of this study was to develop an oncofertility competency framework that defines the key components of oncofertility care, develops a model for prioritizing service development, and defines the roles that health care professionals (HCPs) play. MATERIALS AND METHOD: A quantitative modified Delphi methodology was used to conduct two rounds of an electronic survey, querying and synthesizing opinions about statements regarding oncofertility care with HCPs and patient and family advocacy groups (PFAs) from 16 countries (12 high and 4 middle income). Statements included the roles of HCPs and priorities for service development care across ten domains (communication, oncofertility decision aids, age-appropriate care, referral pathways, documentation, oncofertility training, reproductive survivorship care and fertility-related psychosocial support, supportive care, and ethical frameworks) that represent 33 different elements of care. RESULTS: The first questionnaire was completed by 457 participants (332 HCPs and 125 PFAs). One hundred and thirty-eight participants completed the second questionnaire (122 HCPs and 16 PFAs). Consensus was agreed on 108 oncofertility competencies and the roles HCPs should play in oncofertility care. A three-tier service development model is proposed, with gradual implementation of different components of care. A total of 92.8% of the 108 agreed competencies also had agreement between high and middle income participants. CONCLUSION: FP guidelines establish best practice but do not consider the skills and requirements to implement these guidelines. The competency framework gives HCPs and services a structure for the training of HCPs and implementation of care, as well as defining a model for prioritizing oncofertility service development. IMPLICATIONS FOR PRACTICE: Despite international evidence about fertility preservation (FP), several barriers still prevent the implementation of equitable FP practice. The competency framework gives 108 competencies that will allow health care professionals (HCPs) and services a structure for the development of oncofertility care, as well as define the role HCPs play to provide care and support. The framework also proposes a three-tier oncofertility service development model which prioritizes the development of components of oncofertility care into essential, enhanced, and expert services, giving clear recommendations for service development. The competency framework will enhance the implementation of FP guidelines, improving the equitable access to medical and psychological oncofertility care.


Asunto(s)
Preservación de la Fertilidad/métodos , Femenino , Humanos , Encuestas y Cuestionarios
4.
Health Qual Life Outcomes ; 17(1): 162, 2019 Oct 29.
Artículo en Inglés | MEDLINE | ID: mdl-31665035

RESUMEN

BACKGROUND: When a child undergoes hematopoietic cell transplantation (HCT), the impact extends to the entire family, including siblings. Assessment of the quality of life (QoL) of siblings is challenged by their general lack of availability for regular assessment by clinical providers. Thus, the use of parent proxy reporting may be useful. Our aim was to describe the QoL of siblings of HCT survivors, as reported by their parents, as well as to identify parent and family factors associated with lower sibling QoL. METHODS: A cross-sectional study was utilized to assess parent-reported QoL of the HCT recipient's sibling (Short Form (SF)-10 Health Survey for Children and the Pediatric Symptom Checklist (PSC)-17). Parent QoL was assessed using the SF-12. Multivariable linear regression was used to explore hypothesized predictors of sibling QoL, including parent QoL, family impact/function (Impact on Family Scale, Family Adaptability and Cohesion Evaluation Scales, IV, and a question asking about financial problems) while adjusting for demographic and HCT characteristics. RESULTS: Ninety-seven siblings (55% males) with a mean age of 12 years (standard deviation [SD] 4 years) were assessed, representing HCT survivors, who were an average of 5 years (SD 4 years) post-HCT. Neither sibling psychosocial (mean 49.84, SD 10.70, p = 0.87) nor physical health scores (mean 51.54, SD 8.42, p = 0.08) differed from norms. Parent proxies reported behavioral/emotional problems (PSC-17 total score > 15) in 24% of siblings. While parental ratings of their own physical health (SF-12 were higher than norms (mean 53.04, SD 8.17, p = 0.0005), mental health scores were lower (mean 45.48, SD 10.45, p < 0.0001). In multivariable analysis, lower parent emotional functioning and adverse family function were associated with lower sibling QoL, as reported by parents. CONCLUSIONS: While proxy-reported QoL of siblings did not differ significantly from normative data, both parent QoL and family function were associated with sibling QoL. Future research is needed to understand how siblings themselves perceive their QoL following HCT.


Asunto(s)
Trasplante de Células Madre Hematopoyéticas/psicología , Calidad de Vida/psicología , Hermanos/psicología , Adolescente , Adulto , Niño , Preescolar , Estudios Transversales , Relaciones Familiares/psicología , Femenino , Humanos , Masculino , Trastornos Mentales/epidemiología , Persona de Mediana Edad , Padres/psicología , Encuestas y Cuestionarios
5.
J Pediatr Nurs ; 48: 42-48, 2019.
Artículo en Inglés | MEDLINE | ID: mdl-31247408

RESUMEN

PURPOSE: The National Cancer Institute has acknowledged that for children, adolescents and young adults (AYAs), cancer is a leading cause of disability and death. This population has unique needs and until we fully understand those needs, we will not be able to provide optimal care. The purpose of this study was to understand the self-reported experience of cancer according to children and AYAs. DESIGN AND METHODS: A qualitative descriptive design was used. After obtaining IRB approval, participants were interviewed in Spanish or English. Thirty interviews were conducted with children and AYAs ages 10-22. Questions were asked about the patient's treatment journey and the impact on their lifestyle. The interviews were recorded directly in digital audio files, then transcribed using Verbal Ink®. Themes were derived after the data were organized using Dedoose® and then coded. RESULTS: Children and AYAs described the cancer experience as difficult due to activity challenges and disconnection from school. Patients noted that their physical inactivity led to deconditioning. Children and AYAs reported storytelling as a way to cope with newfound disabilities. Patients reported that their illness allowed them to build closer relationships to family. Feelings on other issues arose, such as communication challenges experienced with transition from adult to pediatric hospitals. The value of altruism emerged as a way to provide purpose in their journey. CONCLUSIONS: Children and AYAs have particular concerns that the healthcare community needs to address. These qualitative findings have specific recommendations for practice.


Asunto(s)
Conducta del Adolescente/psicología , Altruismo , Actitud Frente a la Salud , Conducta Infantil/psicología , Neoplasias/psicología , Adaptación Psicológica , Adolescente , Anécdotas como Asunto , Cuidadores , Niño , Femenino , Humanos , Estilo de Vida , Masculino , Neoplasias/terapia , Investigación Cualitativa , Autoinforme , Adulto Joven
6.
Future Oncol ; 14(29): 3059-3072, 2018 Dec.
Artículo en Inglés | MEDLINE | ID: mdl-30474429

RESUMEN

Once unimaginable, fertility management is now a nationally established part of cancer care in institutions, from academic centers to community hospitals to private practices. Over the last two decades, advances in medicine and reproductive science have made it possible for men, women and children to be connected with an oncofertility specialist or offered fertility preservation soon after a cancer diagnosis. The Oncofertility Consortium's National Physicians Cooperative is a large-scale effort to engage physicians across disciplines - oncology, urology, obstetrics and gynecology, reproductive endocrinology, and behavioral health - in clinical and research activities to enable significant progress in providing fertility preservation options to children and adults. Here, we review the structure and function of the National Physicians Cooperative and identify next steps.


Asunto(s)
Preservación de la Fertilidad/métodos , Fertilidad/fisiología , Colaboración Intersectorial , Neoplasias/fisiopatología , Médicos/organización & administración , Adulto , Antineoplásicos/efectos adversos , Medicina de la Conducta/organización & administración , Niño , Progresión de la Enfermedad , Endocrinología/métodos , Endocrinología/organización & administración , Femenino , Fertilidad/efectos de los fármacos , Ginecología/métodos , Ginecología/organización & administración , Humanos , Oncología Médica/métodos , Oncología Médica/organización & administración , Neoplasias/complicaciones , Neoplasias/patología , Neoplasias/terapia , Obstetricia/métodos , Obstetricia/organización & administración , Guías de Práctica Clínica como Asunto , Embarazo , Calidad de Vida , Medicina Reproductiva/métodos , Medicina Reproductiva/organización & administración , Estados Unidos , Urología/métodos , Urología/organización & administración
7.
J Pediatr Hematol Oncol ; 39(8): 579-584, 2017 11.
Artículo en Inglés | MEDLINE | ID: mdl-28859042

RESUMEN

We aimed to describe the quality of life (QOL) among parents of adolescent and young adult brain tumor survivors as well as parent, survivor, and diagnosis/treatment-related factors associated with adverse QOL. A cross-sectional study of 28 parents of adolescent and young adult brain tumor survivors (who were on average 10 y postdiagnosis) was used to assess QOL. Parent QOL was measured using the Patient-Reported Outcomes Measurement Information System Global Health measure. Factors associated with adverse parent QOL were explored using logistic regression including: parent, survivor, and diagnosis/treatment-related factors. Parent QOL was within the normal range; however, 40% scored below the clinical threshold of 0.5 SD below the mean for physical and mental health. Parent perceptions of greater family impact, survivor emotional/behavioral health problems, improved cognitive function, and recurrence were associated with adverse parent physical health. Parent anger/sorrow, uncertainty, survivor emotional/behavioral health problems, speech/language problems, and recurrence were associated with adverse parent mental health. Parental emotional resources and perceptions of improved survivor peer relationships were associated with greater parent physical and mental health. The impact of a brain tumor diagnosis and treatment on the QOL of parents may be significant. Interventions are needed to ensure that the needs of parents are met.


Asunto(s)
Neoplasias Encefálicas/epidemiología , Calidad de Vida , Sobrevivientes , Adolescente , Adulto , Neoplasias Encefálicas/diagnóstico , Neoplasias Encefálicas/psicología , Neoplasias Encefálicas/terapia , California/epidemiología , Cognición , Estudios Transversales , Emociones , Femenino , Estudios de Seguimiento , Humanos , Masculino , Persona de Mediana Edad , Oportunidad Relativa , Encuestas y Cuestionarios , Adulto Joven
8.
BMC Genomics ; 17(1): 635, 2016 08 15.
Artículo en Inglés | MEDLINE | ID: mdl-27527070

RESUMEN

BACKGROUND: An estimated 15,000 children and adolescents under the age of 19 years are diagnosed with leukemia, lymphoma and other tumors in the USA every year. All children and adolescent acute leukemia patients will undergo chemotherapy as part of their treatment regimen. Fortunately, survival rates for most pediatric cancers have improved at a remarkable pace over the past three decades, and the overall survival rate is greater than 90 % today. However, significant differences in survival rate have been found in different age groups (94 % in 1-9.99 years, 82 % in ≥10 years and 76 % in ≥15 years). ALL accounts for about three out of four cases of childhood leukemia. Intensive chemotherapy treatment coupled with prophylactic or therapeutic antibiotic use could potentially have a long-term effect on the resident gastrointestinal (GI) microbiome. The composition of GI microbiome and its changes upon chemotherapy in pediatric and adolescent leukemia patients is poorly understood. In this study, using 16S rRNA marker gene sequences we profile the GI microbial communities of pediatric and adolescent acute leukemia patients before and after chemotherapy treatment and compare with the microbiota of their healthy siblings. RESULTS: Our study cohort consisted of 51 participants, made up of matched pediatric and adolescent patients with ALL and a healthy sibling. We elucidated and compared the GI microbiota profiles of patients and their healthy sibling controls via analysis of 16S rRNA gene sequencing data. We assessed the GI microbiota composition in pediatric and adolescent patients with ALL during the course of chemotherapy by comparing stool samples taken before chemotherapy with stool samples collected at varying time points during the chemotherapeutic treatment. The microbiota profiles of both patients and control sibling groups are dominated by members of Bacteroides, Prevotella, and Faecalibacterium. At the genus level, both groups share many taxa in common, but the microbiota diversity of the patient group is significantly lower than that of the control group. It was possible to distinguish between the patient and control groups based on their microbiota profiles. The top taxa include Anaerostipes, Coprococcus, Roseburia, and Ruminococcus2 with relatively higher abundance in the control group. The observed microbiota changes are likely the result of several factors including a direct influence of therapeutic compounds on the gut flora and an indirect effect of chemotherapy on the immune system, which, in turn, affects the microbiota. CONCLUSIONS: This study provides significant information on GI microbiota populations in immunocompromised children and opens up the potential for developing novel diagnostics based on stool tests and therapies to improve the dysbiotic condition of the microbiota at the time of diagnosis and in the earliest stages of chemotherapy.


Asunto(s)
Tracto Gastrointestinal/microbiología , Microbiota , Leucemia-Linfoma Linfoblástico de Células Precursoras/diagnóstico , Leucemia-Linfoma Linfoblástico de Células Precursoras/microbiología , Adolescente , Antineoplásicos/uso terapéutico , Área Bajo la Curva , Bacterias/genética , Bacterias/aislamiento & purificación , Biodiversidad , Niño , Preescolar , ADN Bacteriano/química , ADN Bacteriano/aislamiento & purificación , ADN Bacteriano/metabolismo , Heces/microbiología , Femenino , Humanos , Lactante , Recién Nacido , Masculino , Leucemia-Linfoma Linfoblástico de Células Precursoras/tratamiento farmacológico , ARN Ribosómico 16S/química , ARN Ribosómico 16S/aislamiento & purificación , ARN Ribosómico 16S/metabolismo , Curva ROC , Análisis de Secuencia de ADN , Adulto Joven
9.
Psychooncology ; 25(10): 1229-1236, 2016 10.
Artículo en Inglés | MEDLINE | ID: mdl-27434382

RESUMEN

OBJECTIVE: The aim of this study was to examine the associations between age and ethnicity on the development of substance use behaviors among Hispanic and non-Hispanic White (NHW) adolescent and young adult (AYA) childhood cancer survivors. METHODS: Participants were recruited from a single institution through the CHOC Children's Hospital Cancer Registry and included 55 Hispanic and 61 NHW AYA childhood cancer survivors, ages 12 to 33 years (Mean age ± SD: 19 ± 4.2). Smoking, alcohol, and drug use were measured using the Child Health Illness Profile - Adolescent Edition. RESULTS: Hispanic AYA survivors were less likely to be medically insured and reported lower household income than their NHW counterparts (P < 0.001 and P < 0.001, respectively). After controlling for socioeconomic differences and gender, age and ethnicity were significant predictors of substance use among AYA survivors. Hispanic survivors reported less lifetime use of cigarette smoking compared with NHW survivors (OR 0.17, 95% CI, 0.03-0.80). Older age, for both Hispanic and NHW survivors, was found to be a risk factor for lifetime substance use and current alcohol/hard liquor consumption and binge drinking (P < 0.05). CONCLUSIONS: Young adult childhood cancer survivors and NHW survivors are at greatest risk for developing substance use behaviors. The frequency of substance use among AYA survivors appears to increase as they transition into adulthood. These findings emphasize the need to improve long-term health behavior screening and develop effective interventions on reducing substance use behaviors in this vulnerable population.


Asunto(s)
Conducta del Adolescente , Adultos Sobrevivientes de Eventos Adversos Infantiles , Supervivientes de Cáncer/psicología , Etnicidad/estadística & datos numéricos , Neoplasias/etnología , Neoplasias/mortalidad , Calidad de Vida/psicología , Trastornos Relacionados con Sustancias/etnología , Adolescente , Adulto , Consumo de Bebidas Alcohólicas/etnología , Consumo de Bebidas Alcohólicas/psicología , Supervivientes de Cáncer/estadística & datos numéricos , Niño , Preescolar , Femenino , Conductas Relacionadas con la Salud/etnología , Hispánicos o Latinos/estadística & datos numéricos , Humanos , Masculino , Neoplasias/diagnóstico , Neoplasias/psicología , Factores de Riesgo , Fumar/epidemiología , Factores Socioeconómicos , Trastornos Relacionados con Sustancias/psicología , Población Blanca/estadística & datos numéricos , Adulto Joven
10.
Pediatr Blood Cancer ; 63(4): 727-30, 2016 Apr.
Artículo en Inglés | MEDLINE | ID: mdl-26727971

RESUMEN

Extranodal natural killer (NK)/T-cell lymphoma (ENKTCL) is a distinct type of non-Hodgkin lymphoma predominantly observed in Asian and Latin American adult males. A 12-year-old Hispanic female diagnosed with ENKTCL was enrolled in our genomic profiling research protocol. We identified specific somatic alterations consistent with diagnosis of ENKTCL as well as oncogenic mutations in MAP2K1 and STAT3. To our knowledge, this is the first report of an immunophenotypically confirmed and genetically profiled case of ENKTCL in a female pediatric patient in the United States, including its unique treatment and favorable outcome.


Asunto(s)
Quimioradioterapia/métodos , Linfoma Extranodal de Células NK-T/genética , Linfoma Extranodal de Células NK-T/terapia , Medicina de Precisión/métodos , Factor de Transcripción STAT3/genética , Protocolos de Quimioterapia Combinada Antineoplásica/uso terapéutico , Asparaginasa/administración & dosificación , Niño , Citarabina/administración & dosificación , Análisis Mutacional de ADN , Dexametasona/administración & dosificación , Etopósido/administración & dosificación , Femenino , Humanos , Hidrocortisona/administración & dosificación , Ácidos Hidroxámicos/administración & dosificación , Ifosfamida/administración & dosificación , MAP Quinasa Quinasa 1/genética , Metotrexato/administración & dosificación , Mutación , Factor 1 de Unión al Dominio 1 de Regulación Positiva , Proteínas Represoras/genética , Vorinostat
11.
Biol Blood Marrow Transplant ; 21(4): 688-95, 2015 Apr.
Artículo en Inglés | MEDLINE | ID: mdl-25543094

RESUMEN

Variations in cord blood manufacturing and administration are common, and the optimal practice is not known. We compared processing and banking practices at 16 public cord blood banks (CBB) in the United States and assessed transplantation outcomes on 530 single umbilical cord blood (UCB) myeloablative transplantations for hematologic malignancies facilitated by these banks. UCB banking practices were separated into 3 mutually exclusive groups based on whether processing was automated or manual, units were plasma and red blood cell reduced, or buffy coat production method or plasma reduced. Compared with the automated processing system for units, the day 28 neutrophil recovery was significantly lower after transplantation of units that were manually processed and plasma reduced (red cell replete) (odds ratio, .19; P = .001) or plasma and red cell reduced (odds ratio, .54; P = .05). Day 100 survival did not differ by CBB. However, day 100 survival was better with units that were thawed with the dextran-albumin wash method compared with the "no wash" or "dilution only" techniques (odds ratio, 1.82; P = .04). In conclusion, CBB processing has no significant effect on early (day 100) survival despite differences in kinetics of neutrophil recovery.


Asunto(s)
Trasplante de Células Madre de Sangre del Cordón Umbilical/métodos , Células Madre Hematopoyéticas/citología , Acondicionamiento Pretrasplante , Adolescente , Adulto , Aloinjertos , Niño , Preescolar , Femenino , Humanos , Masculino
12.
Psychooncology ; 24(12): 1746-53, 2015 Dec.
Artículo en Inglés | MEDLINE | ID: mdl-25808790

RESUMEN

OBJECTIVE: We examined the interdependent, dyadic, mental health of adolescent and young adult (AYA) cancer patients and their caregivers. Our aims were as follows: (1) to investigate the degree to which patients' and caregivers' subjective perceptions of illness severity are congruent with objective severity (i.e., medical indicators), (2) to compare patients' and caregivers' subjective perceptions of illness severity and cancer-related posttraumatic stress symptoms (PTSS), and (3) to evaluate whether subjective perceptions of illness severity are linked to patients' and caregivers' cancer-related PTSS. METHODS: The AYA cancer patients (n = 110; ages 12-24 years; 52% male) undergoing active treatment at an outpatient clinic and their caregivers (n = 110; 97% parents; ages 24-68 years; 89% female) independently reported their PTSS and subjective illness severity. RESULTS: Overall, neither patients' nor caregivers' reports of subjective illness severity were associated with objective illness severity. Caregivers reported higher PTSS than did patients and higher illness severity than younger, but not older, patients. Actor-partner interdependence model analyses indicated that AYA patients' subjective illness severity is the strongest predictor of their own PTSS and is a significant correlate of their caregivers' PTSS. Caregivers' subjective illness severity is associated with their own PTSS only. Results remained robust after controlling for demographic and illness characteristics. CONCLUSIONS: The AYA patients' and caregivers' illness perceptions are distinct from each other and from objective medical indicators of illness severity. Patients' reports of subjective illness severity may be a marker for their own and their caregivers' mental health. Patient care and efficacious psychosocial interventions may require consideration of both patients' and caregivers' subjective perceptions of illness severity.


Asunto(s)
Cuidadores/psicología , Relaciones Interpersonales , Neoplasias/psicología , Relaciones Padres-Hijo , Calidad de Vida/psicología , Adolescente , Adulto , Anciano de 80 o más Años , Femenino , Humanos , Masculino , Salud Mental , Persona de Mediana Edad , Percepción , Relaciones Profesional-Paciente , Apoyo Social , Adulto Joven
13.
Chembiochem ; 15(9): 1268-73, 2014 Jun 16.
Artículo en Inglés | MEDLINE | ID: mdl-24803415

RESUMEN

We report a simple, versatile, multivalent ligand system that is capable of specifically and efficiently modulating cell-surface receptor clustering and function. The multivalent ligand is made of a polymeric DNA scaffold decorated with biorecognition ligands (i.e., antibodies) to interrogate and modulate cell receptor signaling and function. Using CD20 clustering-mediated apoptosis in B-cell cancer cells as a model system, we demonstrated that our multivalent ligand is significantly more effective at inducing apoptosis of target cancer cells than its monovalent counterpart. This multivalent DNA material approach represents a new chemical biology tool to interrogate cell receptor signaling and functions and to potentially manipulate such functions for the development of therapeutics.


Asunto(s)
Anticuerpos/metabolismo , ADN/metabolismo , Neoplasias/metabolismo , Neoplasias/patología , Apoptosis , Humanos , Células Jurkat , Ligandos , Receptores de Superficie Celular/metabolismo , Transducción de Señal , Células Tumorales Cultivadas
14.
Pediatr Transplant ; 17(3): E104-7, 2013 May.
Artículo en Inglés | MEDLINE | ID: mdl-23464883

RESUMEN

Over 400 cases of pediatric SAA occur annually in the United States. A growing number of children with SAA may have had their stem cells harvested through cord blood collection. We describe a nine-yr-old male with SAA treated successfully with an autologous cord blood transplant following immunoablative chemotherapy. With the increasing number of people cryopreserving autologous cord blood, the use of autologous cord blood in the treatment of SAA might be considered as initial therapy. This case serves to discuss approaches to preparative therapy as well as the potential complications in this growing cohort of patients.


Asunto(s)
Anemia Aplásica/terapia , Trasplante de Células Madre de Sangre del Cordón Umbilical/métodos , Bancos de Sangre , Niño , Criopreservación , Sangre Fetal/citología , Humanos , Inmunosupresores/efectos adversos , Masculino , Acondicionamiento Pretrasplante/efectos adversos , Trasplante Autólogo , Resultado del Tratamiento
15.
J Pediatr Hematol Oncol ; 35(5): 366-70, 2013 Jul.
Artículo en Inglés | MEDLINE | ID: mdl-23669725

RESUMEN

BACKGROUND: Illness uncertainty is prevalent in children with cancer and has been associated with increased psychological distress. The relationship between illness uncertainty and quality of life in pediatric cancer patients remains unclear. The aim of the present study was to examine illness uncertainty as a predictor of health-related quality of life in children diagnosed with cancer. It was hypothesized that child-reported illness uncertainty would be negatively associated with child health-related quality of life. PROCEDURE: Children aged 8 to 18 years old and receiving treatment for cancer were recruited to participate in this study. One hundred twenty children and their parent(s) completed measures of illness uncertainty, pain, anxiety, and quality of life during a routine visit to the Cancer Center at Children's Hospital of Orange County. RESULTS: Illness uncertainty was significantly associated with child age (P=0.02), overall health-related (P<0.001) and cancer-related (P<0.001) quality of life, but not with treatment status (on/off chemotherapy) or demographic variables including sex and household income. Regression analyses statistically controlling for age, anxiety, and pain revealed that illness uncertainty significantly predicted child-reported cancer-related and health-related quality of life (P<0.01) as well as parent-reported cancer-specific quality of life (P<0.01). CONCLUSIONS: Illness uncertainty is prevalent and associated with lower quality of life in children diagnosed with cancer. Improved communication with children regarding disease state, treatment expectations, and prognosis may alleviate uncertainty and improve functioning in this vulnerable patient population.


Asunto(s)
Neoplasias/psicología , Calidad de Vida/psicología , Incertidumbre , Adolescente , Niño , Femenino , Humanos , Masculino , Encuestas y Cuestionarios
16.
Qual Life Res ; 22(6): 1339-51, 2013 Aug.
Artículo en Inglés | MEDLINE | ID: mdl-22922952

RESUMEN

PURPOSE: Cancer registry survival analyses have shown that adolescent and young adult patients with low socioeconomic status (SES) have reduced survival compared to those with higher SES. The objective of this study was to determine whether neighborhood- (nSES) and/or individual-level SES (iSES) also predicted current quality of life in adolescent and young adult survivors. METHODS: The Socioeconomics and Quality of Life study surveyed adolescent and young adult survivors of leukemia and lymphoma at least one year post-diagnosis using population-based ascertainment. Factor analysis was used to create a multidimensional age-relevant iSES score and compared with a preexisting census-block-group derived nSES score. Four quality of life domains were assessed: physical health, psychological and emotional well-being, social relationships, and life skills. Nested multivariable linear regression models were run to test the associations between both SES measures and quality of life and to compare the explanatory power of nSES and iSES. RESULTS: Data from 110 individuals aged 16-40 were included in the final analysis. After adjustment for sociodemographic confounders, low nSES was associated only with poorer physical health, whereas low iSES was related to poorer quality of life in all four domains with iSES accounting for an additional 14, 12, 25, and 10 % of the variance, respectively. CONCLUSIONS: Measures of SES at the individual as compared to the neighborhood level may be stronger indicators of outcomes in adolescents and young adults, which has important implications for SES measurement in the context of cancer surveillance.


Asunto(s)
Indicadores de Salud , Leucemia/psicología , Linfoma/psicología , Calidad de Vida , Características de la Residencia , Factores Socioeconómicos , Adolescente , Adulto , Femenino , Disparidades en el Estado de Salud , Encuestas Epidemiológicas , Humanos , Modelos Logísticos , Masculino , Análisis Multivariante , Clase Social , Análisis de Supervivencia , Sobrevivientes/psicología , Adulto Joven
17.
J Pediatr Hematol Oncol ; 34(4): 257-62, 2012 May.
Artículo en Inglés | MEDLINE | ID: mdl-22322939

RESUMEN

BACKGROUND: Children with cancer often experience significant levels of pain and their pain is generally undermanaged. Management of care to patients with cancer has shifted from the hospital to the home, and as such parents are charged with managing children's pain. However, parents may have misconceptions of analgesic use, which can lead to undertreatment of pain in children. The purpose of this study is to examine attitudes toward pain medication and perceptions of pain expression among parents of children undergoing cancer treatment. PROCEDURE: Parents of children who were undergoing cancer treatment at a hospital were recruited to take part in a survey study. A total of 187 parents completed a survey examining their attitudes toward medication and perceptions of pain expression in children. RESULTS: Many parents reported concerns regarding analgesic use to treat their children's pain and misconceptions about how children can express pain. Regression analyses noted that parental perceptions of pain expression were related to children's experience of chronic or recurring pain and the 2 dimensions of child temperament: emotionality and sociability. CONCLUSIONS: Many parents of children with cancer have misconceptions regarding issues of pain management; these misconceptions can potentially lead to undertreatment of pain in children. These misconceptions are associated with aspects of children's temperament.


Asunto(s)
Analgésicos/uso terapéutico , Actitud Frente a la Salud , Recolección de Datos , Neoplasias , Manejo del Dolor , Relaciones Padres-Hijo , Adolescente , Niño , Preescolar , Femenino , Humanos , Masculino
18.
J Pediatr Hematol Oncol ; 34(1): 68-71, 2012 Jan.
Artículo en Inglés | MEDLINE | ID: mdl-22215099

RESUMEN

This study reports 6 cases of primary follicular lymphoma of the testis (PFLT) in children and adolescents correlated with clinical presentation, pathologic features, treatment, and outcome. All 6 patients (age, 3 to 16 y; median, 4 y) had PFLT grade 3 with disease limited to the testis, completely resected and treated with 2 courses of chemotherapy (cyclophosphamide, vincristine, prednisone, doxorubicin). Event-free survival was 100% (follow-up: median, 73 mo; mean, 53 mo; range, 6 to 96 mo). In conclusion, clinical outcome in children and adolescents with PFLT is excellent with treatment including complete surgical resection and 2 courses of cyclophosphamide, vincristine, prednisone, doxorubicin.


Asunto(s)
Linfoma Folicular/terapia , Neoplasias Testiculares/terapia , Adolescente , Niño , Preescolar , Humanos , Linfoma Folicular/mortalidad , Linfoma Folicular/patología , Masculino , Neoplasias Testiculares/mortalidad , Neoplasias Testiculares/patología
19.
J Psychosoc Oncol ; 30(2): 260-79, 2012.
Artículo en Inglés | MEDLINE | ID: mdl-22416959

RESUMEN

Adolescent and young adult cancer survivors face unique challenges not systematically addressed by cancer clinicians. Four focus groups and two individual interviews were conducted with 19 survivors to profile experiences and identify key concerns for future interventions. The resultant themes reflect cancer care continuum challenges (such as delays in diagnosis, problems with adherence), psychosocial concerns (such as infertility and reproductive concerns, changing social relationships, financial burden), and the paradox of being diagnosed with cancer as a young adult. Future intervention development for adolescent and young adult survivors should involve patient voices at each stage of the research process.


Asunto(s)
Neoplasias/psicología , Sobrevivientes/psicología , Adolescente , Adulto , Factores de Edad , Costo de Enfermedad , Diagnóstico Tardío/psicología , Femenino , Grupos Focales , Humanos , Infertilidad/etiología , Infertilidad/psicología , Relaciones Interpersonales , Entrevistas como Asunto , Masculino , Cumplimiento de la Medicación/psicología , Neoplasias/diagnóstico , Psicología , Adulto Joven
20.
Front Psychol ; 13: 871042, 2022.
Artículo en Inglés | MEDLINE | ID: mdl-35756319

RESUMEN

Background and Aims: End-of-life (EoL) discussions can be difficult for seriously ill adolescents and young adults (AYAs). Researchers aimed to determine whether completing Voicing My CHOiCES (VMC)-a research-informed advance care planning (ACP) guide-increased communication with family, friends, or health care providers (HCPs), and to evaluate the experience of those with whom VMC was shared. Methods: Family, friends, or HCPs who the AYAs had shared their completed VMC with were administered structured interviews to assess their perception of the ACP discussion, changes in their relationship, conversation quality, and whether the discussion prompted changes in care. Open-ended responses underwent thematic analysis. Results: One-month post-completion, 65.1% of AYA had shared VMC completion with a family member, 22.6% with a friend, and 8.9% with an HCP. Among a sample of respondents, family (47%) and friends (33%) reported a positive change in their relationship with the AYA. Participant descriptions of the experience fell into five themes: positive experience (47%), difficult experience (44%), appreciated a guide to facilitate discussion (35%), provided relief (21%), and created worry/anxiety (9%). Only 1 HCP noted a treatment change. Family (76%), friends (67%), and HCP (50%) did not think the AYA would have discussed EoL preferences without completing VMC. Conclusions: VMC has potential to enhance communication about ACP between AYA and their family and friends, though less frequently with HCPs. Participants reported a positive change in their relationship with the AYA after discussing VMC, and described experiencing the conversation as favorable, even when also emotionally difficult.

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