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1.
Child Neuropsychol ; : 1-14, 2023 Nov 06.
Artigo em Inglês | MEDLINE | ID: mdl-37930038

RESUMO

Pediatric brain tumor survivors demonstrate weaknesses in adaptive functioning, most notably practical adaptive skills; however, the specific areas of weakness within practical skills are unknown. This study examined the aspects of practical adaptive functions that are most impacted in brain tumor survivors, and identified medical and socio-demographic variables that predicted outcomes. The sample included 117 pediatric brain tumor patients seen for a clinical neuropsychological evaluation and whose parents completed the Adaptive Behavior Assessment System, Second or Third Edition. T-tests compared practical adaptive skills to normative means. Correlations examined associations between medical and socio-demographic variables and each of the practical adaptive subscales (Community Use, Home Living, Health & Safety, Self-Care). Significant correlations were entered into linear regression models for each practical adaptive skill. All practical subscales were significantly below the normative mean. Community Use was positively correlated with age at diagnosis and negatively correlated with treatment burden, time since diagnosis, and neighborhood deprivation. Health and Safety was positively correlated with age at diagnosis. Home Living was positively correlated with neighborhood deprivation. Self-Care was positively correlated with age at diagnosis and parental education. Specific medical and socio-demographic factors predicted practical adaptive functioning, highlighting the importance of considering the role of medical and socio-demographic determinants of health on adaptive functioning outcomes in pediatric brain tumors.

2.
Patient Educ Couns ; 116: 107935, 2023 11.
Artigo em Inglês | MEDLINE | ID: mdl-37579619

RESUMO

OBJECTIVE: Supporting childhood cancer survivors with neurocognitive late effects is critical and requires additional attention in the research arena. This convening project's aim was to engage parents, healthcare providers, and education stakeholders in order to identify research priorities regarding patient/family-provider communication about neurocognitive impacts associated with childhood cancer. METHODS: Specific components of the Stakeholder Engagement in quEstion Development (SEED) method were combined with an online e-Delphi consensus building approach. Multiple modalities were utilized for engagement including in-person/hybrid meetings, email/Zoom/call communications, targeted-asynchronous learning activities by stakeholders, iterative surveys, and hands-on conceptual modeling. RESULTS: Twenty-four (parents n = 10, educators n = 5, healthcare providers n = 9) participated in the year-long project, generating 8 research questions in the stakeholder priority domains of training families/caregiver, access of neuropsychological assessment, tools to facilitate communication and training medical providers. CONCLUSIONS: This paper illustrates a successful stakeholder convening process using multi-modal engagement to establish research priorities. The resulting questions can be utilized to guide research projects that will fill gaps to providing optimal care to children with neurocognitive late effects. PRACTICE IMPLICATIONS: This process can be used as a template for tackling other healthcare issues that span across disciplines and domains, where stakeholders have rare opportunities to collaborate.


Assuntos
Neoplasias , Humanos , Criança , Neoplasias/complicações , Cuidadores , Atenção à Saúde , Pessoal de Saúde , Pesquisa
3.
Dev Neuropsychol ; 48(5): 203-214, 2023 07 04.
Artigo em Inglês | MEDLINE | ID: mdl-37287263

RESUMO

T-tests from 42 brain tumor patients showed adaptive functioning below normative means at both time points (test interval M=2.60y, SD=1.32). Neurological risk, time since diagnosis,age at diagnosis, age at evaluation, and time since evaluation were correlated with specific adaptive skills. There was a main effect of age at diagnosis, age at assessment, time since diagnosis, and neurological risk as well as an interaction of age at diagnosis × neurological risk for specific adaptive skills. Results highlight the importance of considering the relationship between developmental and medical variables on changes in adaptive functioning in survivors of pediatric brain tumors.


Assuntos
Neoplasias Encefálicas , Criança , Humanos , Neoplasias Encefálicas/complicações , Neoplasias Encefálicas/diagnóstico , Sobreviventes
4.
J Pediatr Hematol Oncol Nurs ; 40(4): 226-234, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-37032468

RESUMO

Introduction: Psychosocial impacts of cancer are well-recognized for pediatric patients but few studies examine challenges specific to schooling after diagnosis and caregiver-related factors that may influence coping. This study describes caregiver experiences of school-related psychosocial functioning and how caregiver preparedness and understanding of these challenges influence coping. Methods: Caregivers of 175 childhood cancer survivors completed a nationally disseminated survey related to caregiver preparedness, clinician-provided education, and school-related experiences. Caregiver-reported preparedness and understanding were evaluated as predictors of psychosocial coping; factor analysis was performed to identify compound scales of preparedness and understanding. Results: Caregivers reported that the cancer treatment experience resulted in their children being more stressed and anxious about returning to school (60.2% and 70.2%, respectively) and more sensitive to peers (73.4%). It also made it harder for them to socialize and fit in with peers (58.2% and 49.7%, respectively). Caregiver preparedness and understanding predicted improved psychosocial coping with regard to child stress regarding socialization, fitting in, and anxiety but not sensitivity to peers. Teacher supportiveness and caregiver perception of clinician understanding also correlated with function. Discussion: Findings highlight the importance of caregiver education and preparedness as these reliably predict child psychosocial function and coping as they return to school after a cancer diagnosis and that all children are at risk for psychosocial challenges following a cancer diagnosis. Opportunities exist for clinicians to provide more education and anticipatory guidance to families as a potential means to reduce poor coping when a child returns to school following cancer.


Assuntos
Neoplasias , Reabilitação Psiquiátrica , Humanos , Criança , Retorno à Escola , Pais/psicologia , Adaptação Psicológica , Neoplasias/terapia , Instituições Acadêmicas
5.
J Pediatr Hematol Oncol Nurs ; 40(4): 217-225, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-36919251

RESUMO

Background: Children treated for cancer are at risk for long-term neurocognitive late effects that can impact school attainment, employment, and quality of life. Obtaining formal education support can be critical to later success but may depend upon parent knowledge and ability to access needed support. The purpose of this study was to develop and evaluate the psychometric properties of a scale to measure the perceived support that parents received upon their child's return to school during or after cancer treatment. Methods: Exploratory factor analyses evaluated the construct validity of survey items. Cronbach's alpha was used to test the internal consistency and independent t-tests evaluated the concurrent criterion validity of resulting subscales. Results: The exploratory factor analyses resulted in two subscales, Barriers to Supportive School Integration (13 items) and Parent School Integration Knowledge (three items). All items loaded at least 0.49 onto each factor, with Cronbach's alpha values of 0.927 and 0.738, respectively. The Knowledge subscale additionally demonstrated concurrent criterion validity; higher Knowledge subscale scores were found among parents who reported receiving information about treatment-related cognitive/school problems from healthcare providers (p < .001). Discussion: The Parent School Integration Knowledge and Barriers to Supportive School Integration subscales demonstrated preliminary evidence for good construct validity and internal consistency. These subscales may be used in future research to assess parent knowledge, barriers to receiving support, and overall experience of supportive school integration after the diagnosis of pediatric cancer.


Assuntos
Neoplasias , Qualidade de Vida , Humanos , Criança , Neoplasias/diagnóstico , Reprodutibilidade dos Testes , Pais/psicologia , Instituições Acadêmicas
6.
Pediatr Blood Cancer ; 70(3): e30167, 2023 03.
Artigo em Inglês | MEDLINE | ID: mdl-36625401

RESUMO

OBJECTIVE: Processing speed (PS) is a vulnerable cognitive skill in pediatric cancer survivors as a consequence of treatments and, less consistently, tumor region. Studies conventionally examine graphomotor PS; emerging research suggests other aspects of PS may be impacted. This study examined types of PS in pediatric brain tumor survivors to determine which aspects are impaired. Given discordance across studies, we additionally investigated the relationship between brain region and PS. METHODS: The sample consisted of 167 pediatric brain tumor patients (100 supratentorial). PS (oral naming, semantic fluency, phonemic fluency, motor speed, graphomotor speed, visual scanning) was gathered via clinical neuropsychological assessment. To examine PS by region, infratentorial and supratentorial groups were matched on age at diagnosis and neuropsychological assessment, and time since diagnosis. RESULTS: The whole sample performed below normative means on measures of oral naming (p < .001), phonemic fluency (p < .001), motor speed (p = .03), visual scanning (p < .001), and graphomotor speed (p < .001). Only oral naming differed by region (p = .03), with infratentorial tumors associated with slower performance. After controlling for known medical and demographic risk factors, brain region remained a significant predictor of performance (p = .04). Among the whole sample, greater than expected proportions of patients with impairment (i.e., >1 standard deviation below the normative mean) were seen across all PS measures. Infratentorial tumors had higher rates of impairments across all PS measures except phonemic fluency. CONCLUSIONS: Results indicate pediatric brain tumor survivors demonstrate weaknesses in multiple aspects of PS, suggesting impairments are not secondary to peripheral motor slowing alone. Additionally, tumor region may predict some but not all neuropsychological outcomes in this population.


Assuntos
Neoplasias Encefálicas , Neoplasias Infratentoriais , Humanos , Criança , Velocidade de Processamento , Neoplasias Encefálicas/complicações , Testes Neuropsicológicos , Sobreviventes
7.
J Adolesc Young Adult Oncol ; 12(4): 577-583, 2023 08.
Artigo em Inglês | MEDLINE | ID: mdl-36306525

RESUMO

Purpose: Adolescents and young adults with cancer have lower college attendance and graduation rates than their peers, but the reasons for this and extent to which cancer impacts college is unknown. This study explores post-high school experiences of young adults with cancer, detailing impacts of diagnosis and treatment on higher education attainment. Materials and Methods: A convergent mixed-methods design disseminated nationally obtained data regarding post-high school transition experiences in adults diagnosed with cancer before age 25. Results: Participants (n = 47) indicated struggles with employment and education; 81% attended some college, but 44% have not completed their degree, citing logistic challenges and lasting effects of therapy as major barriers. Nearly 20% of participants reported that cancer made higher education too difficult, so they did not attend, and most of these individuals (66.6%) are unemployed. Qualitative findings detail that accessing appropriate accommodations was made difficult by a lack of understanding from college faculty and staff. Conclusion: For many, cancer presents a barrier to higher education attainment; changing course of studies, repeating classes, and switching majors may impact degree completion. A minority of students with cancer access educational supports or get assistance obtaining these resources from their medical or high school team. Changes to clinical practice to ensure supports for young adults transitioning from high school have the potential to create improved pathways to higher education success. Additionally, supporting college faculty and staff understanding of cancer and its late effects may be a low-cost, high-impact way to improve adolescent/young adult college success.


Assuntos
Neoplasias , Instituições Acadêmicas , Humanos , Adulto Jovem , Adolescente , Adulto , Escolaridade , Universidades , Estudantes , Neoplasias/terapia
8.
J Pediatr Hematol Oncol ; 45(3): e350-e355, 2023 04 01.
Artigo em Inglês | MEDLINE | ID: mdl-36219703

RESUMO

OBJECTIVE: Childhood brain tumor (BT) survivors are at risk for working memory (WM) and processing speed (PS) deficits, which impact other cognitive domains. This study aimed to characterize WM, PS, and untimed mathematics calculation performance in pediatric BT survivors at least 2 years post-diagnosis, identify medical factors associated with deficits in mathematics, and examine whether WM and/or PS predict mathematics performance in this clinical sample. METHODS: Retrospective data were gathered from 72 BT survivors between 7 and 21 years of age ( M =13.64 y, SD =4.01 y) for a clinical neuropsychologic evaluation. All participants completed Wechsler measures of WM and PS and a measure of untimed mathematics calculation. RESULTS: WM, PS, and the mathematics calculation were significantly lower than the normative mean. Math scores were not correlated with any of the examined medical factors. PS was negatively correlated with the Neurological Predictor Scale and positively correlated with age at diagnosis. Both WM and PS were associated with math outcomes and accounted for 30.4% and 19.2% of the variance, respectively. CONCLUSIONS: The findings indicate that WM and PS contribute to mathematics performance in pediatric BT survivors. Examining mathematics performance should be a part of clinical neuropsychological evaluations. Interventions to improve mathematics performance in this population should also focus on WM and compensatory strategies for slowed PS.


Assuntos
Neoplasias Encefálicas , Memória de Curto Prazo , Criança , Humanos , Velocidade de Processamento , Estudos Retrospectivos , Matemática , Sobreviventes , Neoplasias Encefálicas/complicações , Neoplasias Encefálicas/psicologia , Testes Neuropsicológicos
9.
Pediatr Blood Cancer ; 70(1): e30072, 2023 01.
Artigo em Inglês | MEDLINE | ID: mdl-36326122

RESUMO

BACKGROUND: Neurocognitive deficits are common among children who receive central nervous system (CNS)-directed therapy for childhood cancer. Parents report that they lack information from and communication with oncology providers about neurocognitive impacts of therapy. Furthermore, oncology providers report they lack training and institutional support to appropriately address the neurocognitive needs of these patients/families. METHODS: A parent/provider stakeholder informed, quality improvement (QI) project was conducted to educate providers about neurocognitive impacts, increase parent/provider communication, and improve adherence to supportive care guidelines for neuropsychological assessment for children receiving CNS-directed therapy. A 1-h Continuing Medical Education (CME) course was developed to educate providers about neurocognitive impacts and their relation to schooling. A provider-focused electronic medical record (EMR) strategy was used to deliver parent stakeholder-informed return-to-school "roadmaps," with prompts to scaffold parent/provider communication and enhance documentation of findings. RESULTS: Hospital-based CME sessions were attended by 76% (41 out of 54) of providers from our institution. Among the 34 who completed both pretest and posttest, the mean knowledge score improved from 56% at pretest to 74% at posttest. Compliance with the EMR strategy was 80% and there was a 42% increase in neuropsychological assessment referrals. CONCLUSIONS: We conclude that this QI project is an example of a successful parent/provider stakeholder collaboration that achieved demonstrable positive change in the areas of provider knowledge, patient/provider communication, and alignment of neuropsychological assessment referrals with existing guidelines. Our results confirm that improving knowledge, communication, and compliance with neuropsychological standards of care is possible with this evidence-based approach.


Assuntos
Neoplasias , Melhoria de Qualidade , Criança , Humanos , Comunicação , Oncologia , Pais/psicologia
10.
J Cancer Surviv ; 2022 Nov 01.
Artigo em Inglês | MEDLINE | ID: mdl-36318444

RESUMO

PURPOSE: This study aims to understand parents' experiences of school integration support for their child's transition to K-12 schooling during or after cancer treatment. METHODS: This integrative literature review used PubMed, CINAHL, PsycINFO, and Embase databases and included articles from January 2000 to July 2022 describing parent experiences with support from healthcare providers, school faculty/systems, and school integration programs. This review was guided by an adapted School Re-Entry Model and used constant comparison to identify common themes and guide synthesis. The Johns Hopkins Evidence and Quality Guide was used to appraise article quality and level of evidence. RESULTS: Thirty-five articles were included in the final review: seventeen qualitative, fourteen quantitative, and four mixed or multi-method designs. Parents reported experiences receiving support from healthcare providers, school faculty/systems, school integration programs, and "other" sources. Parents reported both facilitators and barriers to communication, knowledge, and the process of receiving school integration support. CONCLUSIONS: Parents found neuro/psychologists highly supportive but reported limited support from other healthcare providers. Most parents reported mixed experiences with school faculty and reported many barriers to school system support. Parents reported positive experiences with school integration programs; however, limited programs were available. IMPLICATIONS FOR CANCER SURVIVORS: Future programs and research should focus on addressing identified barriers and facilitators of school integration support. Further work is also needed to understand a wider range of parent experiences during school integration.

11.
J Pediatr Hematol Oncol Nurs ; 39(4): 221-230, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-35791852

RESUMO

Background: Neurocognitive deficits from childhood cancer treatment are common, long-standing, and negatively impact multiple domains of life leading to challenges with schooling and education. The purpose of this study is to describe caregiver-reported experiences of neurocognitive effects from therapy and to understand the roles clinicians play in this domain in the United States. Methods: An explanatory mixed-methods study of 174 caregivers of children with cancer provided insight into how clinicians provided information on neurocognitive effects of treatment and their experiences with school-related resources. Clinicians provided descriptions of how they provide this information and assist families with accessing services or transition back to school after therapy. Results: Caregivers identified that physicians, nurses, and social workers primarily provide information regarding neurocognitive effects of treatment. Over half (55.9%) of families seek additional information elsewhere and 49.4% report doing so because the information they received from their team was inadequate. Nearly 40% of caregivers report accessing school supports feels like a constant fight and over 40% were not offered homebound educational services by their school. Qualitative interviews with providers found that clinicians focus on therapy-related physical symptoms of treatment and only discuss neurocognitive effects when prompted by families or when children are returning to school. Discussion: Clinicians' focus on physical symptoms and just-in-time thinking when it comes to providing education or school-related services may explain why families endorse infrequent education on the topic and challenges with school reintegration. Improved education for clinicians on this topic, integration of interdisciplinary teams, and new clinical practice models may improve the family experience.


Assuntos
Escolaridade , Neoplasias , Instituições Acadêmicas , Criança , Humanos , Neoplasias/terapia , Enfermeiras e Enfermeiros , Médicos , Assistentes Sociais
12.
Support Care Cancer ; 30(9): 7553-7560, 2022 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-35676341

RESUMO

PURPOSE: Neurocognitive late effects including problems with attention have been reported in pediatric oncology survivors. While some researchers have characterized these late effects as similar to symptoms of attention-deficit/hyperactivity disorder, inattentive presentation (ADHD-I), there remains some controversy as to whether these concerns in oncology patients are best conceptualized according to an ADHD-I or sluggish cognitive tempo (SCT) framework. The aim of this study was to describe SCT symptoms in children with ADHD-I or oncology diagnoses; identify groups of SCT symptoms among children with brain tumors (BT), acute lymphoblastic leukemia (ALL), or ADHD-I; and identify whether specific SCT profiles are associated with these diagnoses. METHODS: The sample was comprised of 364 youth (146 BT, 149 ADHD-I, 69 ALL) referred for a neuropsychological evaluation at an academic medical center. Caregivers completed the SCT scale as part of the clinical evaluation. RESULTS: Groups differed on mean scores for the SCT scales (Total, Sleepy/sluggish, Low initiation, and Daydreamy) by diagnosis (all p < 0.05), with the ADHD-I group having higher SCT symptoms on all scales. Latent profile analysis showed significant differences between latent SCT classes according to ADHD-I versus cancer diagnosis. The ADHD-I group was significantly more likely to be in the high SCT class compared to the oncology groups. CONCLUSION: Findings add to the understanding of SCT symptoms in pediatric oncology survivors. There is utility in applying the SCT framework to the oncology population; however, pediatric survivors are likely to be rated differently than youth with ADHD-I. Implications and future directions are discussed.


Assuntos
Transtorno do Deficit de Atenção com Hiperatividade , Sobreviventes de Câncer , Neoplasias , Adolescente , Transtorno do Deficit de Atenção com Hiperatividade/complicações , Transtorno do Deficit de Atenção com Hiperatividade/diagnóstico , Transtorno do Deficit de Atenção com Hiperatividade/psicologia , Criança , Cognição , Progressão da Doença , Humanos , Neoplasias/complicações , Tempo Cognitivo Lento , Sobreviventes
13.
J Pediatr Psychol ; 47(1): 15-24, 2022 02 03.
Artigo em Inglês | MEDLINE | ID: mdl-34643698

RESUMO

OBJECTIVE: Pediatric cancer survivors have historically struggled to receive adequate educational supports. In Spring 2020, the COVID-19 pandemic forced an emergency switch from traditional in-person education models to distance education, but little information is available regarding experiences of pediatric survivors' coping with schooling since that time. METHODS: This article presents exploratory mixed methods findings from a quality improvement project including qualitative interviews and a quantitative survey conducted with parents of pediatric oncology survivors identified through neuropsychological assessment, and the use of school-based services as having educationally relevant neurocognitive impacts of disease or treatment. The interviews explored experiences of education and instructional delivery during the COVID-19 school closures in spring of 2020 and the beginning of the 2020-2021 school year and served as the foundation for a quantitative survey to determine the generalizability of findings. RESULTS: Qualitative interviews highlighted 3 emergent themes regarding the shared experiences of distance schooling for children with cancer during the COVID-19 school closures: (a) attention, (b) mental health, and (c) access to instruction. A follow-up quantitative survey supported the qualitative findings and their generalizability to the schooling experiences of other children with cancer during the pandemic. CONCLUSION: This article describes and explores each theme and offers suggestions for pediatric supports and changes to provider service delivery (including weblinks to access project-developed resources) as a result of ongoing pandemic-related schooling needs.


Assuntos
COVID-19 , Sobreviventes de Câncer , Educação a Distância , Neoplasias , Criança , Humanos , Neoplasias/terapia , Pandemias , SARS-CoV-2
14.
Pediatr Blood Cancer ; 69(4): e29483, 2022 04.
Artigo em Inglês | MEDLINE | ID: mdl-34842333

RESUMO

OBJECTIVE: Pediatric oncology survivors are at risk for executive function (EF) and working memory (WM) deficits, which can be measured via performance-based measures or rating scales. Previous studies have shown these measurement methods to be weakly correlated. This study aimed to describe parent-rated EF and performance-based WM (PBWM) in pediatric brain tumor (BT) survivors, examine change in EF and PBWM across time, and investigate the relationship between parent-rated WM and PBWM. METHOD: The sample included 56 patients diagnosed with a BT in childhood (Mage  = 6.94 years; SD = 4.05) seen twice for clinical neuropsychological evaluation. PBWM was examined via the auditory WM scale from a Wechsler intelligence measure or Differential Ability Scales-II. Parents completed the Behavior Rating Inventory of Executive Function (BRIEF)/BRIEF-P/BRIEF-2 as a measure of global EF (Global Executive Composite [GEC]), metacognitive skills (Metacognitive Index/Cognitive Regulation Index [MI/CRI]), behavioral regulation (Behavior Regulation Index [BRI]), and emotional regulation (Emotion Regulation Index [ERI]). RESULTS: GEC, MI/CRI, and ERI at Time 1 were significantly above the mean (p < .01); BRI and PBWM did not differ from the normative mean. All measures were significantly higher than the normative mean at Time 2 (p < .05). PBWM was both clinically and statistically elevated (p < .001). There was a significant change across time in PBWM (p < .05), but not GEC, MI/CRI, ERI, or BRI. PBWM was weakly correlated with the BRIEF WM subscale at Time 1 and Time 2 (all p > .05). CONCLUSIONS: Multiple measures of EF should be considered when providing diagnoses and recommendations for pediatric BT survivors. Furthermore, given declines across time, findings document need for continued monitoring and reassessment of survivors as they get further out from treatment.


Assuntos
Neoplasias Encefálicas , Função Executiva , Neoplasias Encefálicas/psicologia , Criança , Função Executiva/fisiologia , Humanos , Inteligência , Transtornos da Memória , Memória de Curto Prazo/fisiologia , Testes Neuropsicológicos , Sobreviventes/psicologia
16.
Child Neuropsychol ; 27(7): 960-972, 2021 10.
Artigo em Inglês | MEDLINE | ID: mdl-33866922

RESUMO

Sluggish Cognitive Tempo (SCT) describes a pattern of under-activity, poor initiation, and slowness. It was first reported within the Attention Deficit Hyperactivity Disorder (ADHD) literature and found to be positively associated with the inattentive symptoms of ADHD and negatively or not significantly associated with the hyperactivity/impulsivity symptoms of ADHD. SCT has since been considered applicable to the pediatric oncology population given the emergence of inattentive, sluggish symptoms secondary to cancer treatment. The present study examined the unique contribution of SCT to various processing speed skills in a clinical sample of pediatric brain tumor (BT) survivors in order to determine the degree to which SCT explained timed "cognitive" processing components. Measures included speeded naming, graphomotor speed, and speeded inhibition. Hierarchical linear regression analyses were used to predict performance-based measures of processing speed. After controlling for verbal ability and inattention, SCT, particularly Daydreamy SCT (ß = -0.698, p = 0.023), explained 28% of variance in speeded inhibition. SCT did not add significantly to the prediction of speeded naming or graphomotor speed. Findings suggest that the "daydreamy" aspect of SCT, rather than "sluggishness" per se, may be related to more complex, cognitively-demanding tasks with greater executive functioning burdens in BT survivors. Implications for intervention for oncology survivors as well as future research directions are discussed.


Assuntos
Transtorno do Deficit de Atenção com Hiperatividade , Neoplasias Encefálicas , Neoplasias Encefálicas/complicações , Criança , Cognição , Função Executiva , Humanos , Sobreviventes
17.
J Cancer Educ ; 36(4): 819-825, 2021 08.
Artigo em Inglês | MEDLINE | ID: mdl-32088849

RESUMO

Childhood cancer impacts the child patient as well as the family and caregivers throughout diagnosis, treatment, and survivorship. Secondary analysis of qualitative data revealed the critical role of parents' adaptability and flexibility when navigating advocacy decisions about their child's schooling following diagnosis and through survivorship. After cancer, adjusting to school means adjusting to a new normal creating challenges related to curriculum, peers, and educators that can affect quality of life. Critically, parents' adjustment to a new advocacy role emerged as an important consideration. Concepts of social and cultural capital aid in understanding the experiences of parents whose children have returned to school following their successful treatment for pediatric cancer. Framed in this way, how parents mobilize (or do not mobilize) these forms of capital as they devise strategies to support their children are understood. This study interprets parent reports and actions as taken often in the hope that they will help both their own child and others that follow, creating mutual benefit for the network of people touched by cancer.


Assuntos
Sobreviventes de Câncer , Neoplasias , Criança , Família , Humanos , Pesquisa Qualitativa , Qualidade de Vida , Sobrevivência
18.
J Adolesc Young Adult Oncol ; 10(3): 288-295, 2021 06.
Artigo em Inglês | MEDLINE | ID: mdl-32668177

RESUMO

Purpose: The number of adolescent and young adult (AYA) survivors of childhood cancer is increasing, and the impacts of therapy on their daily lives are not well understood. Adaptive functions are required for age-appropriate interactions and day to day functioning, but are reduced in AYA survivors. Work in other pediatric populations suggests that additional neurocognitive skills may influence adaptive function and, thus, quality of life and personal attainment of AYA cancer survivors. Methods: Retrospective medical records review examined neurocognitive data from 139 AYA survivors. Hierarchical linear regression examined age at diagnosis, use of central nervous system (CNS) radiation, verbal intelligence, processing speed, and executive function as predictors of adaptive functioning domains. Results: AYA survivors exhibited weaknesses in all domains of adaptive functioning compared to normative reference values (Cohen's d = 0.660-0.864), as well as in processing speed (Cohen's d = 0.791) and metacognitive executive functioning (Cohen's d = 0.817). Processing speed and executive function provided substantial improvements in prediction of adaptive functioning beyond that of age at diagnosis and use of CNS-directed radiation therapy. Taken together these variables explained 37.1% of variability in adaptive conceptual skills, 26.1% in adaptive social skills, and 27.1% of adaptive practical skills. Conclusions: Intelligence, processing speed, and executive function significantly contribute to adaptive function scores in AYA cancer survivors and impact domains that are important to self-sufficiency and quality of life. Attention to neurocognitive function in all AYA cancer survivors is recommended in addition to referral for neuropsychological evaluation and tailoring interventions to address executive and adaptive functioning.


Assuntos
Sobreviventes de Câncer , Neoplasias , Adolescente , Cognição , Função Executiva , Humanos , Testes Neuropsicológicos , Qualidade de Vida , Estudos Retrospectivos , Adulto Jovem
19.
JCO Oncol Pract ; 16(12): e1516-e1523, 2020 12.
Artigo em Inglês | MEDLINE | ID: mdl-33006913

RESUMO

PURPOSE: Pediatric cancer survivorship rates continue to improve, although disease- and treatment-related neurocognitive impacts substantively affect survivors' educational access and availability for learning. Receiving formal educational supports substantially improves survivors' academic progress and graduation rates; however, parents of survivors report obtaining such support is stressful, in part due to limited knowledge on their part and that of their oncology providers. METHODS: Parents (N = 195) of pediatric survivors across the United States were surveyed to explore specific barriers to obtaining appropriate educational supports and the facilitating role of the oncologist. RESULTS: Parent-reported barriers included limited access to formal educational supports, under-referral to neuropsychology services, and need for more information about available supports and how best to advocate for these, when needed. Not only were few survivors (35.4%) referred for neuropsychological evaluation, standard of care for many pediatric survivors, but survivors were more than five times more likely to be retained in grade compared with the national retention rate. When obtained, parents reported that the neuropsychological consultation and associated report were helpful in increasing their own understanding and addressing barriers to obtaining adequate supports for their children. CONCLUSION: Given the important role of neuropsychological evaluation for survivors and their families, bringing referral rates more in line with national guidelines represents a critical target for oncologists. With adequate training in relevant issues, the oncologist is positioned to be a key support to survivors and their families in ensuring access to neuropsychological services and reducing barriers to an appropriate education.


Assuntos
Neoplasias , Sobrevivência , Criança , Humanos , Oncologia , Pais , Sobreviventes , Estados Unidos
20.
Semin Oncol ; 47(1): 65-72, 2020 02.
Artigo em Inglês | MEDLINE | ID: mdl-32253070

RESUMO

Over the last 60 years, success rates in treating childhood cancers have grown dramatically from 10% to greater than 85%. Negative effects of treatments, however, place survivors at risk for neurocognitive deficits that can make school challenging. Evidence shows that receiving special education services can benefit affected children. However, communication and knowledge gaps among families and service providers can present access challenges. This mini-review considers the literature on communication between medical providers, families, and school professionals and identifies recommended tools for improving success and efficiency. Additional recommendations are made regarding improving access and adoption of such tools including the need for adaptations and expansions of available resources to address health disparity concerns for an increasingly linguistically and culturally diverse population.


Assuntos
Comunicação , Necessidades e Demandas de Serviços de Saúde , Neoplasias/epidemiologia , Instituições Acadêmicas , Fatores Etários , Criança , Pessoal de Saúde , Disparidades nos Níveis de Saúde , Humanos
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