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1.
Pediatr Blood Cancer ; 71(7): e31039, 2024 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-38689540

RESUMO

BACKGROUND: Opsoclonus-myoclonus-ataxia syndrome (OMAS) is a rare autoimmune disorder of the nervous system presenting with abnormal eye and limb movements, altered gait, and increased irritability. Two to four percent of children diagnosed with neuroblastoma have neuroblastoma-associated OMAS (NA-OMAS). These children typically present with non-high-risk neuroblastoma that is cured with surgery, with or without chemotherapy. Despite excellent overall survival, patients with NA-OMAS can have significant persistent neurological and developmental issues. OBJECTIVE: This study aimed to describe long-term neurocognitive and adaptive functioning of patients with NA-OMAS treated with multimodal therapy, including intravenous immunoglobulin (IVIG) on Children's Oncology Group (COG) protocol ANBL00P3. METHODS: Of 53 children enrolled on ANBL00P3, 25 submitted evaluable neurocognitive data at diagnosis and at least one additional time point within 2 years and were included in the analyses. Adaptive development was assessed via the Vineland Adaptive Behavior Scale, and validated, age-appropriate measures of intellectual function were also administered. RESULTS: Twenty-one of the 25 patients in this cohort ultimately received IVIG. Descriptive spaghetti plots suggest that this cohort demonstrated stable long-term cognitive functioning and adaptive development over time. This cohort also demonstrated decreased OMAS scores over time consistent with improved OMAS symptoms. CONCLUSIONS: While statistical significance is limited by small sample size and loss to follow-up over 10 years, findings suggest stable long-term cognitive and adaptive functioning over time in this treated cohort.


Assuntos
Neuroblastoma , Síndrome de Opsoclonia-Mioclonia , Humanos , Síndrome de Opsoclonia-Mioclonia/terapia , Síndrome de Opsoclonia-Mioclonia/etiologia , Masculino , Feminino , Neuroblastoma/complicações , Neuroblastoma/terapia , Neuroblastoma/mortalidade , Pré-Escolar , Criança , Lactente , Imunoglobulinas Intravenosas/uso terapêutico , Seguimentos , Adolescente , Terapia Combinada , Prognóstico , Adaptação Psicológica , Cognição , Protocolos de Quimioterapia Combinada Antineoplásica/uso terapêutico
2.
Pediatr Blood Cancer ; 70(5): e30171, 2023 05.
Artigo em Inglês | MEDLINE | ID: mdl-36734371

RESUMO

The importance of measuring quality of survival within paediatric oncology trials is increasingly recognised. However, capturing neuropsychological outcomes and other aspects of quality of survival in the context of large or multinational trials can be challenging. We provide examples of protocols designed to address this challenge recently employed in clinical trials in the USA and Europe. We discuss their respective strengths and challenges, obstacles encountered and future opportunities for transatlantic collaboration.


Assuntos
Oncologia , Neoplasias , Criança , Humanos , Europa (Continente) , Neoplasias/tratamento farmacológico , Cognição
3.
Pediatr Blood Cancer ; 70 Suppl 6: e30557, 2023 09.
Artigo em Inglês | MEDLINE | ID: mdl-37430416

RESUMO

As survival rates for childhood cancer have improved, there has been increasing focus on identifying and addressing adverse impacts of cancer and its treatment on children and their families during treatment and into survivorship. The Behavioral Science Committee (BSC) of the Children's Oncology Group (COG), comprised of psychologists, neuropsychologists, social workers, nurses, physicians, and clinical research associates, aims to improve the lives of children with cancer and their families through research and dissemination of empirically supported knowledge. Key achievements of the BSC include enhanced interprofessional collaboration through integration of liaisons into other key committees within COG, successful measurement of critical neurocognitive outcomes through standardized neurocognitive assessment strategies, contributions to evidence-based guidelines, and optimization of patient-reported outcome measurement. The collection of neurocognitive and behavioral data continues to be an essential function of the BSC, in the context of therapeutic trials that are modifying treatments to maximize event-free survival, minimize adverse outcomes, and optimize quality of life. In addition, through hypothesis-driven research and multidisciplinary collaborations, the BSC will also begin to prioritize initiatives to expand the systematic collection of predictive factors (e.g., social determinants of health) and psychosocial outcomes, with overarching goals of addressing health inequities in cancer care and outcomes, and promoting evidence-based interventions to improve outcomes for all children, adolescents, and young adults with cancer.


Assuntos
Ciências do Comportamento , Neoplasias , Adolescente , Adulto Jovem , Criança , Humanos , Qualidade de Vida , Oncologia , Neoplasias/terapia , Neoplasias/psicologia , Taxa de Sobrevida
4.
Pediatr Blood Cancer ; 70(7): e30350, 2023 07.
Artigo em Inglês | MEDLINE | ID: mdl-37129114

RESUMO

PURPOSE: Acute lymphoblastic leukemia (ALL) is the most common pediatric cancer diagnosis. Cognitive late effects develop in 20%-40% of ALL survivors, but the course of declines is unclear. The aim of this paper is to characterize cognitive functioning, and its association with patient-reported outcomes, early in treatment. PATIENTS AND METHODS: A total of 483 children with high-risk ALL, aged 6-12 years at diagnosis, consented to the neurocognitive study embedded in a prospective therapeutic trial, Children's Oncology Group (COG) AALL1131. A computerized neurocognitive battery (Cogstate) was administered 3 months post diagnosis assessing reaction time, visual attention, working memory, visual learning, and executive functioning. Parent-reported executive functioning and patient-reported physical symptoms were also collected. RESULTS: Data from 390 participants (mean age at diagnosis = 9.2 years, 55.4% male) were obtained. Relatively few patients reported pain (16.0%) or nausea (22.6%), but a majority (68.5%) reported feeling at least some fatigue at testing. Mean Cogstate Z-scores were within normal limits across tasks; however, rates of impairment (Z-scores ≤ -1.5) for reaction time, working memory, visual learning, and visual attention were all higher than expected compared to the standardization sample. Patients reporting fatigue were significantly more likely to have impaired reaction time and visual attention compared to those reporting no fatigue. CONCLUSION: Findings support feasibility of computerized cognitive assessments and suggest higher-than-expected rates of impaired cognitive performance early during treatment for pediatric ALL, notably within 3 months of diagnosis, suggesting intervention efforts may be indicated. These results also highlight acute factors that may impact reliability of "baseline" assessments conducted soon after diagnosis.


Assuntos
Leucemia-Linfoma Linfoblástico de Células Precursoras , Criança , Humanos , Masculino , Feminino , Reprodutibilidade dos Testes , Leucemia-Linfoma Linfoblástico de Células Precursoras/tratamento farmacológico , Função Executiva , Cognição , Memória de Curto Prazo , Testes Neuropsicológicos
5.
Pediatr Blood Cancer ; 69(10): e29904, 2022 10.
Artigo em Inglês | MEDLINE | ID: mdl-35929012

RESUMO

BACKGROUND: Four multisite randomized clinical trials of > 1400 caregivers of children newly diagnosed with cancer showed that the Bright IDEAS (BI) paradigm of problem-solving skills training is an acceptable and efficacious approach to alleviating the high levels of distress they experience. To facilitate providing evidence-based caregiver support as recommended in the pediatric oncology standards of care, the project described here was designed to disseminate BI to 200 psychosocial professionals. PROCEDURE: We partnered with the Children's Oncology Group (COG), Association of Pediatric Oncology Social Workers (APOSW), Association of Pediatric Hematology/Oncology Nurses (APHON), and special interest group in pediatric hematology/oncology of the Society for Pediatric Psychology (SPP). Membership surveys revealed substantial enthusiasm for training in BI. We structured training to include review of the evidence base for BI, role plays, and strategies for implementation at individual sites. Four conference calls designed to enhance implementation were held one, two, three, and five months after training. RESULTS: Ten 1.5-day workshops were held in conjunction with annual meetings of COG, APOSW, APHON, and SPP. A total of 209 psychosocial clinicians from 134 sites were trained. Evaluations were highly favorable. Trainees had provided BI to 545 individuals as of the last conference call. CONCLUSIONS: Initial dissemination goals were met. BI is now available at numerous pediatric oncology centers, but it has not become part of routine care. Future work focused on implementation might consider top-down approaches that include direct communication with pediatric oncologists and hospital leaders about the benefits of incorporating this evidence-based intervention systemically.


Assuntos
Cuidadores , Neoplasias , Cuidadores/psicologia , Criança , Comunicação , Humanos , Oncologia/educação , Neoplasias/psicologia , Inquéritos e Questionários
6.
Pediatr Blood Cancer ; 68(4): e28913, 2021 04.
Artigo em Inglês | MEDLINE | ID: mdl-33522102

RESUMO

PURPOSE: To characterize academic and adaptive skill outcomes in survivors of high-risk B-lineage acute lymphoblastic leukemia (HR B-ALL). METHODS: Participants were 178 patients enrolled on a nontherapeutic clinical trial that aimed to characterize neurocognitive and functional outcomes (ie, academic achievement and adaptive skills) following treatment for childhood HR B-ALL. Eligible patients were treated on Children's Oncology Group AALL0232 clinical trial that included two treatment randomizations: methotrexate delivery (high or escalating dose) and corticosteroid (dexamethasone or prednisone). Academic achievement and adaptive skills were evaluated at one time point, 8-24 months after completing treatment. RESULTS: Multivariable logistic regression showed no significant association between treatment variables and outcomes after accounting for age at diagnosis, sex, and insurance status. In multivariable analyses accounting for sex and insurance status, survivors <10 years old at diagnosis had significantly lower scores in Math (P = .02). In multivariable analyses accounting for sex and age at diagnosis, scores for children with US public health insurance were significantly lower than those with US private or military insurance across all academic and adaptive skills (all P-values ≤.04). Results from univariate analyses showed that boys had significantly lower scores than girls across all adaptive skill domains (all P-values ≤.04). CONCLUSION: Regardless of treatment randomization, survivors of HR B-ALL <10 years at diagnosis are at risk for deficits in Math and overall adaptive functioning; overall adaptive skills for boys were significantly poorer. Screening and early intervention for patients at highest risk, particularly young patients and lower resourced families, should be prioritized.


Assuntos
Sucesso Acadêmico , Antineoplásicos/uso terapêutico , Dexametasona/uso terapêutico , Metotrexato/uso terapêutico , Leucemia-Linfoma Linfoblástico de Células Precursoras/tratamento farmacológico , Prednisona/uso terapêutico , Adaptação Psicológica , Adolescente , Sobreviventes de Câncer , Criança , Pré-Escolar , Feminino , Humanos , Lactente , Masculino , Leucemia-Linfoma Linfoblástico de Células Precursoras/epidemiologia , Leucemia-Linfoma Linfoblástico de Células Precursoras/psicologia , Resultado do Tratamento
7.
Cancer ; 124(2): 398-405, 2018 01 15.
Artigo em Inglês | MEDLINE | ID: mdl-29149503

RESUMO

BACKGROUND: Cancer-related sexual dysfunction has been reported among adolescents and young adults (AYAs); however, its prevalence over time has not been examined. This longitudinal study investigated sexual dysfunction in AYAs over the course of 2 years after the initial diagnosis. METHODS: Young adult patients (18-39 years old) completed the Medical Outcomes Study Sexual Functioning Scale within the first 4 months of their diagnosis (n = 123) and again 6 (n = 107) and 24 months later (n = 95). An ordered multinomial response model analyzed changes in the probability of reporting sexual dysfunction over time and the independent effects of demographic, clinical, and psychosocial variables. RESULTS: More than half of the participants reported sexual functioning to be problematic at each assessment. The probability of reporting sexual dysfunction increased over time (P < .01) and was greater for cancer patients who were female (P < .001), older (P < .01), married or in a committed relationship (P < .001), treated with chemotherapy (P < .05), and reporting comorbid psychological distress (P < .001) and lower social support (P < .05). For women, being in a relationship increased the likelihood of reporting sexual problems over time; for men, the likelihood of reporting sexual problems increased regardless of their relationship status. CONCLUSIONS: A substantial proportion of young adults report ongoing problems with sexual functioning in the first 2 years after their cancer diagnosis. These findings justify the need to evaluate and monitor sexual functioning throughout a continuum of care. Cancer 2018;124:398-405. © 2017 American Cancer Society.


Assuntos
Neoplasias/psicologia , Comportamento Sexual/psicologia , Adolescente , Adulto , Feminino , Humanos , Estudos Longitudinais , Masculino , Probabilidade , Disfunções Sexuais Fisiológicas/epidemiologia , Disfunções Sexuais Psicogênicas/epidemiologia , Adulto Jovem
9.
Pediatr Blood Cancer ; 65(3)2018 03.
Artigo em Inglês | MEDLINE | ID: mdl-29193588

RESUMO

BACKGROUND: Mentorship of junior faculty is an integral component of career development. The Children's Oncology Group (COG) Young Investigator (YI) Committee designed a mentorship program in 2004 whose purpose was to pair YIs (faculty ≤10 years of first academic appointment) with a senior mentor to assist with career development and involvement in COG research activities. This study reports on the committee's ability to achieve these goals. PROCEDURE: An online survey was sent to YIs who were registered with the program from 2004 to2015, assessing three major domains: (1) overall experience with the mentor pairing, (2) satisfaction with the program, and (3) academic accomplishments of the mentees. RESULTS: The response rate was 64% (110/171). Overall, YIs rated the success of their mentorship pairing as 7.2 out of 10 (median) (25th, 75th quartile 3.6, 9.6). The direct effects of the mentorship program included 70% YIs reporting a positive effect on their career, 40% reporting any grant or manuscript resulting from the pairing, 47% forming a new research collaboration, and 43% receiving appointment to a COG committee. Respondents reported success in COG with 38% authoring a manuscript on behalf of COG and 65% reporting a leadership position including seven current or past COG discipline chairs and 20 study chairs. Finally, 74% of respondents said they would consider serving as mentors in the program in the future. CONCLUSION: The COG YI mentorship program has been well received by the majority of the participants and has helped to identify and train many current leaders in COG.


Assuntos
Tutoria/métodos , Oncologistas/educação , Pediatras/educação , Avaliação de Programas e Projetos de Saúde , Mobilidade Ocupacional , Feminino , Humanos , Masculino , Oncologia/educação , Mentores , Pediatria/educação , Satisfação Pessoal , Inquéritos e Questionários
10.
J Pediatr Hematol Oncol ; 40(3): e154-e158, 2018 04.
Artigo em Inglês | MEDLINE | ID: mdl-28991132

RESUMO

Priorities for young adult survivorship care from the survivors' perspective are not well documented. To address this within our patient population, we conducted a multimethod needs assessment of young adult survivors of pediatric, adolescent, and young adult cancer in South Texas to get a better understanding of the ongoing challenges and priorities for their survivorship needs and related services. Participants were 18 to 39 years at the time of the needs assessment and predominately Hispanic. In an online survey, survivors most commonly cited being concerned about their physical and mental health, long-term treatment effects, recurrence, and health insurance issues. Participants stated that they received critical support from family, friends, and medical staff, but they would like to receive additional support from other cancer survivors through peer mentorship opportunities and survivor retreats/social events.


Assuntos
Sobreviventes de Câncer/psicologia , Avaliação das Necessidades , Sobrevivência , Adolescente , Adulto , Feminino , Humanos , Masculino , Inquéritos e Questionários , Texas , Adulto Jovem
11.
Pediatr Blood Cancer ; 64(8)2017 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-28266804

RESUMO

BACKGROUND: Pediatric central nervous system (CNS) tumor survivors are at high risk for numerous late effects including decreased health-related quality of life (HRQOL). Our objective was to summarize studies describing HRQOL in pediatric CNS tumor survivors and compare HRQOL outcomes in studies that included a comparison group. PROCEDURE: EMBASE, MEDLINE, and PsychINFO were used to identify relevant articles published until August, 2016. Eligible studies reported outcomes for pediatric CNS tumor survivors diagnosed before age 21, at least 5 years from diagnosis and/or 2 years off therapy and used a standardized measure of HRQOL. All data were abstracted by two reviewers. Random-effects meta-analyses were performed using Review Manager 5.0. RESULTS: Of 1,912 unique articles identified, 74 were included in this review. Papers described 29 different HRQOL tools. Meta-analyses compared pediatric CNS tumor survivors to healthy comparisons and other pediatric cancer survivors separately. HRQOL was significantly lower for CNS (n = 797) than healthy comparisons (n = 1,397) (mean difference = -0.54, 95% confidence interval [CI] = -0.72 to -0.35, P < 0.001, I2 = 35%). HRQOL was also significantly lower for CNS (n = 244) than non-CNS survivors (n = 414) (mean difference = -0.56, 95% CI = -0.73 to -0.38, P < 0.00001, I2 = 0%). CONCLUSIONS: Pediatric CNS tumor survivors experience worse HRQOL than healthy comparisons and non-CNS cancer survivors. Future HRQOL work should be longitudinal, and/or multisite studies that examine HRQOL by diagnosis and treatment modalities.


Assuntos
Neoplasias do Sistema Nervoso Central/complicações , Nível de Saúde , Qualidade de Vida , Sobreviventes , Criança , Feminino , Humanos , Masculino
12.
Pediatr Blood Cancer ; 63(2): 191-5, 2016 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-26451963

RESUMO

As the mortality of pediatric cancers has decreased, focus on neuropsychological morbidities of treatment sequelae have increased. Neuropsychological evaluations are essential diagnostic tools that assess cognitive functioning and neurobiological integrity. These tests provide vital information to support ongoing medical care, documenting cognitive morbidity and response to interventions. We frame standards for neuropsychological monitoring of pediatric patients with CNS malignancy or who received cancer-directed therapies involving the CNS and discuss billing for these services in the United States in the context of clinical research. We describe a cost-effective, efficient model of neuropsychological monitoring that may increases access to neuropsychological care.


Assuntos
Neoplasias do Sistema Nervoso Central/psicologia , Oncologia/normas , Neurologia/normas , Testes Neuropsicológicos/normas , Pediatria/normas , Neoplasias do Sistema Nervoso Central/terapia , Criança , Humanos , Oncologia/economia , Neurologia/economia , Pediatria/economia , Padrão de Cuidado , Sobreviventes/psicologia , Estados Unidos
13.
Psychooncology ; 24(2): 181-9, 2015 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-24890730

RESUMO

OBJECTIVES: To provide one of the first prospective reports examining neuropsychological outcomes for children treated with 1800 cGy whole brain radiotherapy (WBRT) and prophylactic chemotherapy versus prophylactic chemotherapy alone for acute lymphoblastic leukemia (ALL). Acute and long-term neuropsychological toxicities associated with WBRT are compared. METHODS: This multisite study included 188 children, ages 4-21 years at enrollment, who were assessed with standardized neuropsychological tests at 9, 21, and 48 months after diagnosis with intermediate risk ALL. All participating children were receiving treatment on a parent study CCG105. RESULTS: Verbal intelligence (VIQ) scores for children receiving WBRT was significantly lower than VIQ for prophylactic chemotherapy at the 48-month time point (p < 0.05). A significant cross-level interaction between time since diagnosis and treatment condition was observed (p < 0.05). WBRT did not result in differences in PIQ; both groups of children demonstrated comparable increases in PIQ. Neuropsychological findings at 48 months after diagnosis indicated diminished performance in neuromotor, visual-motor coordination, and executive functioning for children receiving WBRT. Academic achievement was unaffected by WBRT at 4 years after diagnosis. CONCLUSIONS: The measurement of verbal and performance IQ as a primary endpoint in ALL clinical trials is critical to characterizing neuropsychological late effects. A trajectory of decline in neuropsychological functioning, specifically verbal IQ, was observed. Missing data within the trial occurred at random and did not impact results observed. The impact of WBRT becomes evident at 48 months after diagnosis, suggesting the need for long-term follow-up beyond the time frame typically used in Phase III trials.


Assuntos
Atenção/efeitos da radiação , Função Executiva/efeitos da radiação , Memória/efeitos da radiação , Leucemia-Linfoma Linfoblástico de Células Precursoras/radioterapia , Desempenho Psicomotor/efeitos da radiação , Logro , Adolescente , Encéfalo , Criança , Pré-Escolar , Cognição/efeitos da radiação , Feminino , Humanos , Estudos Longitudinais , Masculino , Testes Neuropsicológicos , Leucemia-Linfoma Linfoblástico de Células Precursoras/psicologia , Estudos Prospectivos , Adulto Jovem
14.
Psychooncology ; 24(2): 162-8, 2015 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-24916740

RESUMO

OBJECTIVE: Theories of posttraumatic growth suggest that some degree of distress is necessary to stimulate growth; yet, investigations of the relationship between stress and growth following trauma are mixed. This study aims to understand the relationship between posttraumatic stress symptoms and posttraumatic growth in adolescent and young adult (AYA) cancer patients. METHOD: 165 AYA patients aged 14-39 years at diagnosis completed standardized measures of posttraumatic stress and posttraumatic growth at 12 months following diagnosis. Locally weighted scatterplot smoothing and regression were used to examine linear and curvilinear relationships between posttraumatic stress and posttraumatic growth. RESULTS: No significant relationships between overall posttraumatic stress severity and posttraumatic growth were observed at 12-month follow-up. However, curvilinear relationships between re-experiencing (a posttraumatic stress symptom) and two of five posttraumatic growth indicators (New Possibilities, Personal Strengths) were observed. CONCLUSION: Findings suggest that re-experiencing is associated with some aspects of posttraumatic growth but not others. Although re-experiencing is considered a symptom of posttraumatic stress disorder, it also may represent a cognitive process necessary to achieve personal growth for AYAs. Findings call into question the supposed psychopathological nature of re-experiencing and suggest that re-experiencing, as a cognitive process, may be psychologically adaptive. Opportunities to engage family, friends, cancer survivors, or health care professionals in frank discussions about fears, worries, or concerns may help AYAs re-experience cancer in a way that enhances their understanding of what happened to them and contributes to positive adaptation to life after cancer.


Assuntos
Adaptação Psicológica , Neoplasias/psicologia , Transtornos de Estresse Pós-Traumáticos/psicologia , Adolescente , Adulto , Feminino , Humanos , Masculino , Análise de Regressão , Índice de Gravidade de Doença , Estresse Psicológico/psicologia , Adulto Jovem
15.
Qual Life Res ; 24(6): 1297-301, 2015 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-25429821

RESUMO

PURPOSE: Quality of life (QoL) has been increasingly emphasized in National Cancer Institute (NCI)-sponsored multisite clinical trials. Little is known about the outcomes of these trials in pediatric cancer. Objectives were to describe the proportion of Children's Oncology Group (COG) QoL studies that successfully accrued subjects and were analyzed, presented or published. METHODS: We conducted a survey to describe outcomes of COG QoL studies. We included studies that contained at least one QoL assessment and were closed to patient accrual at the time of survey dissemination. Respondents were the investigators most responsible for the QoL aim. RESULTS: Sixteen studies were included; response rate was 100%. Nine (56%) studies were embedded into a cancer treatment trial. Only 3 (19%) studies accrued their intended sample size. Seven (44%) studies were analyzed, 9 (56%) were presented, and 6 (38%) were published. CONCLUSIONS: NCI-sponsored pediatric QoL studies have high rates of failure to accrue. Many were not analyzed or disseminated. Using these data, strategies have been implemented to improve conduct in future trials. Monitoring of QoL studies is important to maximize the chances of study success.


Assuntos
Neoplasias/terapia , Qualidade de Vida , Pesquisa Biomédica , Criança , Ensaios Clínicos como Assunto , Feminino , Humanos , Masculino , National Cancer Institute (U.S.) , Pediatria , Inquéritos e Questionários , Estados Unidos
16.
Psychooncology ; 23(11): 1267-75, 2014 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-24664958

RESUMO

PURPOSE: Identifying at-risk adolescent and young adult (AYA) cancer patients and referring them to age-appropriate psychosocial support services may be instrumental in reducing psychological distress and promoting psychosocial adaptation. The purpose of this study is to identify trajectories of clinically significant levels of distress throughout the first year following diagnosis and to distinguish factors, including supportive care service use, that predict the extent to which AYAs report distress. METHODS: In this prospective multisite study, 215 AYAs aged 15-39 years were assessed for psychological distress and psychosocial support service use within the first 4 months of diagnosis and again 6 and 12 months later. On the basis of distress scores, respondents were assigned to one of four distress trajectory groups (Resilient, Recovery, Delayed, and Chronic). Multiple logistic regression analyses examined whether demographics, clinical variables, and reports of unsatisfied need for psychosocial support were associated with distress trajectories over 1 year. RESULTS: Twelve percent of AYAs reported clinically significant chronic distress throughout the first 12 months following diagnosis. An additional 15% reported delayed distress. Substantial proportions of AYAs reported that needs for information (57%), counseling (41%), and practical support (39%) remained unsatisfied at 12 months following diagnosis. Not getting counseling needs met, particularly with regard to professional mental health services, was observed to be significantly associated with distress over time. CONCLUSIONS: Substantial proportions of AYAs are not utilizing psychosocial support services. Findings suggest the importance of identifying psychologically distressed AYAs and addressing their needs for mental health counseling throughout a continuum of care.


Assuntos
Ansiedade/psicologia , Depressão/psicologia , Avaliação das Necessidades , Neoplasias/psicologia , Resiliência Psicológica , Apoio Social , Estresse Psicológico/psicologia , Adaptação Psicológica , Adolescente , Adulto , Ansiedade/terapia , Estudos de Coortes , Depressão/terapia , Feminino , Humanos , Modelos Logísticos , Estudos Longitudinais , Masculino , Serviços de Saúde Mental/estatística & dados numéricos , Análise Multivariada , Estudos Prospectivos , Estresse Psicológico/terapia , Adulto Jovem
17.
J Clin Oncol ; : JCO2301989, 2024 Apr 11.
Artigo em Inglês | MEDLINE | ID: mdl-38603641

RESUMO

PURPOSE: Many children treated for ALL develop long-term neurocognitive impairments. Increased risk of these impairments is associated with treatment and demographic factors. Exposure to anesthesia is an additional possible risk factor. This study evaluated the impact of cumulative exposure to anesthesia on neurocognitive outcomes among a multicenter cohort of children with ALL. METHODS: This study was embedded in AALL1131, a Children's Oncology Group phase III trial for patients with high-risk B-ALL. In consenting patients age 6-12 years, prospective uniform assessments of neurocognitive function were performed during and at 1 year after completion of therapy. Exposure to all episodes of anesthetic agents was abstracted. Multivariable linear regression models determined associations of cumulative anesthetic agents with the primary neurocognitive outcome reaction time/processing speed (age-normed) at 1 year off therapy, adjusting for baseline neurocognitive score, age, sex, race/ethnicity, insurance status (as a proxy for socioeconomic status), and leukemia risk group. RESULTS: One hundred and forty-four children, 76 (52.8%) males, mean age of 9.1 (min-max, 6.0-12.0) years at diagnosis, underwent a median of 27 anesthetic episodes (min-max, 1-37). Almost all patients were exposed to propofol (140/144, 97.2%), with a mean cumulative dose of 112.3 mg/kg. One year after therapy, the proportion of children with impairment (Z-score ≤-1.5) was significantly higher compared with a normative sample. In covariate-adjusted multivariable analysis, cumulative exposure to propofol was associated with a 0.05 Z-score decrease in reaction time/processing speed per each 10 mg/kg propofol exposure (P = .03). CONCLUSION: In a multicenter and uniformly treated cohort of children with B-ALL, cumulative exposure to propofol was an independent risk factor for impairment in reaction time/processing speed 1 year after therapy. Anesthesia exposure is a modifiable risk, and opportunities to minimize propofol use should be considered.

18.
Cancer ; 119(1): 201-14, 2013 Jan 01.
Artigo em Inglês | MEDLINE | ID: mdl-22744865

RESUMO

BACKGROUND: Adolescents and young adults (AYAs) with cancer demonstrate biomedical risks and psychosocial issues distinct from those of children or older adults. In this study, the authors examined and compared the extent to which AYAs treated in pediatric or adult oncology settings reported use of, and unmet need for, psychosocial support services. METHODS: Within 4 months of initial cancer diagnosis, 215 AYAs ages 14 to 39 years (99 from pediatric care settings and 116 from adult care settings; 75% response rate) were assessed for reporting use of information resources, emotional support services, and practical support services. Statistical analyses derived odds ratios and 95% confidence intervals for service use and unmet needs after controlling for race, employment/school status, sex, relationship status, severity of cancer, treatment, and treatment-related side effects. RESULTS: AYAs ages 20 to 29 years were significantly less likely than teens and older patients ages 30 to 39 years to report using professional mental health services and were significantly more likely to report an unmet need with regard to cancer information, infertility information, and diet/nutrition information. Compared with teens who were treated in pediatric facilities, AYAs who were treated in adult facilities were more likely to report an unmet need for age-appropriate Internet sites, professional mental health services, camp/retreats programs, transportation assistance, and complementary and alternative health services. CONCLUSIONS: Substantial proportions of AYAs are not getting their psychosocial care needs met. Bolstering psychosocial support staff and patient referral to community-based social service agencies and reputable Internet resources may enhance care and improve quality of life for AYAs.


Assuntos
Serviços de Saúde do Adolescente , Neoplasias/psicologia , Apoio Social , Adolescente , Adulto , Feminino , Humanos , Masculino , Serviços de Saúde Mental/estatística & dados numéricos , Avaliação das Necessidades , Neoplasias/terapia , Educação de Pacientes como Assunto , Estudos Prospectivos , Adulto Jovem
19.
Psychooncology ; 22(8): 1798-806, 2013 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-23135830

RESUMO

OBJECTIVES: Post-traumatic stress symptoms (PTSS) have been identified as a meaningful indicator of distress in cancer survivors. Distinct from young adult survivors of childhood cancer, young people diagnosed with cancer as adolescents and young adults (AYAs) face unique psychosocial issues; however, there is little published research of PTSS in the AYA population. This study examines prevalence and predictors of PTSS among AYAs with cancer. METHODS: As part of a longitudinal study of AYAs with cancer, 151 patients aged 15-39 years completed mailed surveys at 6 and 12 months post-diagnosis. Severity of PTSS was estimated at 6 and 12 months post-diagnosis. Multiple regression analyses were conducted to investigate the predictive effects of socio-demographic and clinical characteristics on changes in PTSS over time. RESULTS: At 6 and 12 months, respectively, 39% and 44% of participants reported moderate to severe levels of PTSS; 29% had PTSS levels suggestive of post-traumatic stress disorder. No significant differences in severity of PTSS between 6 and 12 months were observed. Regression analyses suggested that a greater number of side effects were associated with higher levels of PTSS at 6 months. Currently receiving treatment, having surgical treatment, diagnosis of a cancer type with a 90-100% survival rate, remaining unemployed/not in school, and greater PTSS at 6 months were associated with higher levels of PTSS at 12 months. CONCLUSIONS: Post-traumatic stress symptoms were observed as early as 6 months following diagnosis and remained stable at 12-month follow-up. The development of early interventions for reducing distress among AYA patients in treatment is recommended.


Assuntos
Neoplasias/psicologia , Transtornos de Estresse Pós-Traumáticos/epidemiologia , Sobreviventes/psicologia , Adaptação Psicológica , Adolescente , Adulto , Feminino , Seguimentos , Nível de Saúde , Humanos , Masculino , Neoplasias/complicações , Neoplasias/epidemiologia , Prevalência , Estudos Prospectivos , Qualidade de Vida , Análise de Regressão , Fatores de Risco , Índice de Gravidade de Doença , Fatores Socioeconômicos , Transtornos de Estresse Pós-Traumáticos/diagnóstico , Transtornos de Estresse Pós-Traumáticos/etiologia , Transtornos de Estresse Pós-Traumáticos/psicologia , Adulto Jovem
20.
Pediatr Blood Cancer ; 60(6): 1048-54, 2013 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-23255478

RESUMO

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


Assuntos
Ciências do Comportamento , Neoplasias/psicologia , Criança , Humanos , Testes Neuropsicológicos , Psicometria , Pesquisa
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