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1.
J Pediatr Psychol ; 46(4): 413-421, 2021 04 16.
Artigo em Inglês | MEDLINE | ID: mdl-33367833

RESUMO

OBJECTIVE: Bright IDEAS (BI) is a problem-solving skills training (PSST) program that has been demonstrated in earlier randomized controlled trials (RCTs) to be an effective and specific intervention for improving problem-solving skills and reducing negative affect in caregivers of children with cancer. The objectives of this study were to (a) offer an approach to defining meaningful treatment response and to determine the rates of responsivity to PSST; and (b) identify characteristics of PSST responders and nonresponders. METHODS: Data from 154 mothers receiving the BI intervention were analyzed. Drawing on the literature on minimal clinically important differences, two criteria for determining responsivity were calculated for the primary outcome of problem-solving skills: (a) The reliable change index (RCI) based on group data, and; (b) The effect size (ES) of each participant's pre/postintervention change score as a function of the group's baseline SD. RESULTS: Thirty-three percent of the sample met both responsivity criteria immediately posttreatment (39% at follow-up) and 38% (39% at follow-up) met neither. An additional 29% demonstrated a small or greater ES (≥ 0.2) but did not meet the RCI criteria, suggesting possible benefit. The single consistent predictor of responsivity was participants' pretreatment problem-solving skills, with lower skills at baseline predicting greater improvement (p < .001). CONCLUSIONS: These findings highlight the need to go beyond group data in interpreting RCTs and to incorporate measures of meaningful treatment response. Our ability to predict and screen for meaningful treatment response is critical to more precise targeting, enhanced outcomes, and better resource allocation.


Assuntos
Mães , Neoplasias , Atenção , Criança , Feminino , Humanos , Relações Mãe-Filho , Neoplasias/terapia , Resolução de Problemas
2.
Pediatr Blood Cancer ; 67(2): e28051, 2020 02.
Artigo em Inglês | MEDLINE | ID: mdl-31724814

RESUMO

PURPOSE: Family psychosocial risk in pediatric oncology can be assessed using the Psychosocial Assessment Tool (PAT), a brief parent report screener based on the Pediatric Psychosocial Preventative Health Model (PPPHM; universal, targeted, and clinical). However, little is known about risk over the course of treatment and its association with medical and psychosocial healthcare utilization. METHODS: Primary caregivers of children with cancer participated in this prospective multisite investigation, completing the PAT at diagnosis (T1; n = 396) and 6 months later (T2; n = 304). Healthcare utilization data were extracted from electronic health records. RESULTS: The distribution of PPPHM risk levels at T1 and T2 was highly consistent for the samples. Two-thirds of families remained at the same level of risk, 18% decreased and 16% increased risk level. Risk was not related to sociodemographic or treatment variables. The PAT risk score correlated with psychosocial contacts over the 6-month period. CONCLUSIONS: Although the majority of families reported universal (low) risk on the PAT and were stable in their risk level over 6 months, reassessing risk is helpful in identifying those families who report higher level of risk during treatment than at diagnosis. PAT scores were related to psychosocial services that are provided to most but not all families and could be tailored more specifically to match risk and delivery of evidence-based care.


Assuntos
Cuidadores/psicologia , Família/psicologia , Neoplasias/psicologia , Aceitação pelo Paciente de Cuidados de Saúde/estatística & dados numéricos , Psicometria/estatística & dados numéricos , Estresse Psicológico , Adolescente , Adulto , Criança , Pré-Escolar , Feminino , Seguimentos , Humanos , Lactente , Masculino , Estudos Prospectivos , Inquéritos e Questionários , Adulto Jovem
3.
J Pediatr Psychol ; 43(7): 737-748, 2018 08 01.
Artigo em Inglês | MEDLINE | ID: mdl-29509908

RESUMO

Objective: Family psychosocial risk screening is an important initial step in delivering evidence-based care. The Psychosocial Assessment Tool (PAT) is a brief parent report screener based on the trilevel Pediatric Psychosocial Preventative Health Model (PPPHM; Universal, Targeted, Clinical). The current article validates a revised PAT (version 3.0) in pediatric oncology that includes new items (for families of younger patients; clinically relevant risk items) and applicable to broad health literacy levels (a 4th grade reading level). Methods: Primary caregivers of 394 children newly diagnosed with cancer participated in this multisite investigation, completing the PAT and validation measures using REDCap. Results: The original structure of the PAT, with seven subscales (Family Structure, Social Support, Child Problems, Sibling Problems, Family Problems, Stress Reactions, and Family Beliefs) was supported using a confirmatory factor analysis. Internal consistency for the total score (Kuder-Richardson 20 coefficient [KR20] = 0.81) and the subscales (KR20 = 0.59-0.85) was moderate to strong. Moderate to strong correlations with the criteria measures provided validation for the total and subscale scores. The validation measures varied significantly, as expected, across the three levels of the PPPHM. Receiver operating characteristic (ROC) analyses showed that the PAT total and subscale scores can discriminate families above and below clinical thresholds. Conclusions: Results reinforce the psychometric properties of this approach for screening of family psychosocial risk. The PAT provides an evidence-based screener that identifies families at three levels of risk and can provide the basis for further evaluation and treatment of children with cancer and their families.


Assuntos
Relações Familiares/psicologia , Neoplasias/psicologia , Estresse Psicológico/diagnóstico , Estresse Psicológico/psicologia , Inquéritos e Questionários/normas , Adolescente , Cuidadores/psicologia , Criança , Pré-Escolar , Análise Fatorial , Feminino , Humanos , Lactente , Masculino , Pais/psicologia , Estudos Prospectivos , Psicometria , Curva ROC , Reprodutibilidade dos Testes , Medição de Risco
4.
J Pediatr Psychol ; 43(10): 1104-1113, 2018 11 01.
Artigo em Inglês | MEDLINE | ID: mdl-29982606

RESUMO

Objective: Family psychosocial risk screening is an important initial step in delivering evidence-based care and in addressing health disparities. There is currently no validated measure of family psychosocial risk in Spanish. The Psychosocial Assessment Tool (PAT) is a brief parent report screener based on the trilevel Pediatric Preventative Psychosocial Risk Model (PPPHM; Universal, Targeted, and Clinical). The current article validates a Spanish version of the PAT (Version 3.0) in pediatric oncology. Method: Spanish-speaking Hispanic primary caregivers of 79 children newly diagnosed with cancer participated in this 4-institution multisite investigation, completing Spanish versions of the PAT and validation measures using REDCap. Results: Over 60% of the sample had a high school or lower level of education and they primarily identified as Hispanic in terms of acculturation. Internal consistency for the total score (KR20 = 0.76) and the Social Support, Child Problems, Sibling Problems, and Family Problems subscales was strong (KR20 = 0.69-0.79). Stress Reactions, Family Structure, and Family Beliefs subscales were lower (KR20 = 0.43-0.55). Moderate to strong correlations with the criteria measures provided validation for the total and subscale scores. Nearly two-thirds of the sample scored in the Targeted or Clinical range of the PPPHM. The PAT was successful in identifying clinical cases. Conclusions: The Spanish version of the PAT can be used with families of children newly diagnosed with cancer. Elevated psychosocial risks were found and warrant particular attention in providing psychosocial care attentive to the needs of Spanish-speaking families.


Assuntos
Cuidadores/psicologia , Família/psicologia , Hispânico ou Latino/psicologia , Neoplasias/psicologia , Inquéritos e Questionários/normas , Adolescente , Adulto , Criança , Pré-Escolar , Feminino , Humanos , Lactente , Recém-Nascido , Idioma , Masculino , Estudos Prospectivos , Psicometria , Reprodutibilidade dos Testes , Medição de Risco/métodos , Apoio Social , Tradução , Estados Unidos , Adulto Jovem
5.
J Pediatr Psychol ; 42(6): 700-710, 2017 07 01.
Artigo em Inglês | MEDLINE | ID: mdl-28339637

RESUMO

Objective: Psychosocial risk screening is an important initial step in delivering evidence-based care. This qualitative descriptive study identified how multidisciplinary pediatric oncology health-care providers perceive psychosocial risk screening to identify factors in uptake and implementation. Methods: A script guided digitally recorded (transcribed) interviews regarding psychosocial screening and challenges to facilitators of screening. Participants were 15 multidisciplinary staff (physicians, nurses, social workers, psychologists, physician assistant) at nine sites, three using the Psychosocial Assessment Tool© for research and six for clinical care. Constant comparative analysis was used to analyze the independently coded interviews. Results: Thematic content analysis identified an overarching theme - Screening is important because it facilitates clinical care - and four subthemes: Optimizing Psychosocial Care, Implementing Screening, Engaging Families, and Utilizing Clinical Pathways. Conclusions: Findings support the importance of integrating psychosocial risk screening into clinical care and offer strategies for implementation of screening across a range of settings.


Assuntos
Atitude do Pessoal de Saúde , Neoplasias/psicologia , Pediatria , Psico-Oncologia , Criança , Atenção à Saúde , Feminino , Humanos , Comunicação Interdisciplinar , Entrevistas como Assunto , Masculino , Escalas de Graduação Psiquiátrica , Pesquisa Qualitativa , Medição de Risco
6.
Acta Haematol ; 132(3-4): 313-25, 2014.
Artigo em Inglês | MEDLINE | ID: mdl-25228557

RESUMO

BACKGROUND: Adolescents and young adults (AYAs) are a very unique subset of our population journeying through a dynamic stage of their lives. This age group often remains understudied as a separate entity because they are commonly lumped into either pediatric or adult subgroups. METHODS: Here we review acute and chronic issues surrounding hematopoietic stem cell transplantation (HSCT) with a focus on the AYA age group. RESULTS: HSCT is a commonly used treatment modality for patients with certain types of cancers. AYA patients undergoing HSCT present a very unique perspective, circumstances, medical, psychological and social issues requiring a diligent workup, care and follow-up. CONCLUSION: The medical care of these patients should be approached in a multidisciplinary method involving the patient, caregivers, physicians, psychologists and social workers.


Assuntos
Transplante de Células-Tronco Hematopoéticas , Leucemia Mieloide Aguda/cirurgia , Adaptação Psicológica , Atenção à Saúde , Preservação da Fertilidade , Doença Enxerto-Hospedeiro/etiologia , Transplante de Células-Tronco Hematopoéticas/efeitos adversos , Humanos , Leucemia Mieloide Aguda/mortalidade , Leucemia Mieloide Aguda/psicologia , Apoio Social , Taxa de Sobrevida
7.
JMIR Res Protoc ; 12: e46339, 2023 Jun 02.
Artigo em Inglês | MEDLINE | ID: mdl-37267038

RESUMO

BACKGROUND: The psychosocial needs and risks of children with cancer and their families are well-documented including increased risk of parental distress, posttraumatic stress, and anxiety. There is a critical need to provide evidence-based psychosocial care to parents and caregivers of children with cancer. Digital health interventions are important to address many barriers to in-person intervention delivery but are not widely used in pediatric psychosocial cancer care. The COVID-19 pandemic has reinforced the need for flexible, acceptable, and accessible psychosocial digital health interventions. The Electronic Surviving Cancer Competently Intervention Program (eSCCIP) is an innovative digital health intervention for parents and caregivers of children with cancer, delivered through a combination of self-guided web-based content and supplemented by 3 telehealth follow-up sessions with a trained telehealth guide. A Spanish language adaptation of eSCCIP, El Programa Electronico de Intervencion para Superar Cancer Competentemente (eSCCIP-SP), has been developed. The self-guided web-based cores of eSCCIP/eSCCIP-SP are a mix of didactic video content, multifamily video discussion groups featuring parents of children with cancer, and hands-on web-based activities. OBJECTIVE: The objective of this study is to test eSCCIP/eSCCIP-SP in a multisite randomized controlled trial, compared to an internet-based education control condition consisting of information specifically focused on concerns relevant to parents and caregivers of children with cancer. METHODS: Using a randomized controlled clinical trial design, 350 eligible parents and caregivers of children with cancer will be randomly assigned to the intervention (eSCCIP/eSCCIP-SP) or an education control condition. Data will be collected at 3 time points: preintervention (prior to randomization), immediately post intervention (after 6 weeks), and at a 3-month follow-up (from baseline). Participants randomized to either condition will receive study material (eSCCIP/eSCCIP-SP intervention or education control website) in English or Spanish, based on the primary language spoken in the home and participant preference. RESULTS: The primary study end point is a reduction in acute distress from baseline to postintervention, with secondary end points focused on reductions in symptoms of posttraumatic stress and anxiety, and improvements in coping self-efficacy and cognitive coping. An additional exploratory aim will be focused on implementation strategies and potential costs and cost-savings of eSCCIP/eSCCIP-SP, laying the groundwork for future trials focused on dissemination and implementation, stepped-care models, and intervention refinement. CONCLUSIONS: This trial will provide necessary data to evaluate the efficacy of eSCCIP/eSCCIP-SP. This intervention has the potential to be an easily scalable and highly impactful psychosocial treatment option for parents and caregivers of children with cancer. TRIAL REGISTRATION: ClinicalTrials.gov NCT05294302; https://clinicaltrials.gov/ct2/show/NCT05294302. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): PRR1-10.2196/46339.

8.
Front Psychol ; 14: 1213784, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-37809313

RESUMO

Objective: The Social Problem-Solving Inventory-Revised (SPSI-R) is a widely used instrument to assess problem-solving ability. This study examined the factor structure of the 52-, 25-, and 10-item versions of the SPSI-R and assessed factorial invariance across English- and Spanish-speaking participants. In addition, the internal consistency, test-retest reliability and sensitivity to detect change in problem-solving skills over time were assessed across the three different versions of the SPSI-R. Methods: Data from three randomized controlled trials, in which caregivers of children with cancer (N = 1,069) were assigned to either a problem-solving skills intervention (N = 728) or a control condition (N = 341), were combined. The SPSI-R was administered at baseline (T1) and immediately post intervention (T2). Reliability and multigroup analyses were performed with confirmatory factor analysis (CFA). Sensitivity to change analyses were performed using repeated measures ANOVA. Results: Confirmatory factor analysis at T1 showed good fit statistics and internal consistency for the 52- and the 25-item versions, but not for the 10-item version. Factorial invariance was demonstrated across time (T1-T2) and language (Spanish-English) for both the 52- and 25-item versions. Adequate sensitivity to change over time was shown. Conclusion: The 52- and 25-item versions of the SPSI-R appear reliable and valid for assessment of problem-solving skills in English- and Spanish-speaking caregivers of children with newly diagnosed cancer. The 25-item SPSI-R can be used as a short version measuring problem-solving ability; the 10-item version cannot be considered a reliable measure for this population.

9.
Pediatr Blood Cancer ; 59(4): 703-7, 2012 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-22302778

RESUMO

BACKGROUND: Most health-related quality of life assessments are designed for either children or adults and have not been evaluated for adolescent and young adult survivors of pediatric cancer. The objective of this study was to examine the feasibility, reliability, and validity of the Pediatric Quality of Life Inventory (PedsQL ™ Generic Core Scales, Cancer Module, and Multidimensional Fatigue Scale in adult survivors of pediatric cancer. METHODS: Adult survivors (n = 64; Mean age 35 year old; >2 years after treatment) completed the PedsQL™ Generic Core Scales, Cancer Module, and Multidimensional Fatigue Scale. Feasibility was examined with floor and ceiling effects; and internal consistency was determined by Cronbach's coefficient alpha calculations. Inter-factor correlations were also assessed. RESULTS: Significant ceiling effects were observed for the scales of social function, nausea, procedural anxiety, treatment anxiety, and communication. Internal consistency for all subscales was within the recommended ranges (α ≥ 0.70). Moderate to strong correlations between most Cancer Module and Generic Core Scales (r = 0.25 to r = 0.76) and between the Multidimensional Fatigue Scale and Generic Core Scales (r = 0.37 to r = 0.73). CONCLUSIONS: The PedsQL™ Generic Core Scales, Cancer Module, and Multidimensional Fatigue Scale appear to be feasible for an older population of pediatric cancer survivors; however, some of the Cancer Module Scales (nausea, procedural/treatment anxiety, and communication) were deemed not relevant for long-term survivors. More information is needed to determine whether the issues addressed by these modules are meaningful to long-term adult survivors of pediatric cancers.


Assuntos
Fadiga/diagnóstico , Neoplasias/psicologia , Qualidade de Vida , Inquéritos e Questionários , Sobreviventes/psicologia , Adulto , Criança , Fadiga/etiologia , Estudos de Viabilidade , Feminino , Humanos , Masculino , Neoplasias/complicações
10.
J Health Psychol ; 27(4): 990-1005, 2022 03.
Artigo em Inglês | MEDLINE | ID: mdl-33153307

RESUMO

The majority of childhood cancer patients survive well into adulthood, but remain at risk for psychological late effects that can impact overall health and quality of life. The current narrative review summarizes the literature on psychological late effects, including anxiety, depression, psychological distress, post-traumatic stress disorder, suicidality, psychoactive medication use, and post-traumatic growth in survivors of childhood cancers. While results were mixed, many studies demonstrated that psychological symptoms occurred at levels higher than would be expected in the general population. Treatment, environmental, and behavioral risk factors, as well as symptom onset and trajectory merit further investigation.


Assuntos
Sobreviventes de Câncer , Neoplasias , Crescimento Psicológico Pós-Traumático , Transtornos de Estresse Pós-Traumáticos , Adolescente , Adulto , Ansiedade/etiologia , Criança , Depressão/psicologia , Humanos , Neoplasias/psicologia , Qualidade de Vida/psicologia , Transtornos de Estresse Pós-Traumáticos/psicologia , Estresse Psicológico/psicologia , Sobreviventes/psicologia , Adulto Jovem
11.
EClinicalMedicine ; 24: 100428, 2020 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-32637901

RESUMO

BACKGROUND: Bright IDEAS (BI) problem-solving skills training is an evidence-based intervention designed to help parents manage the demands of caring for a child with cancer. However, the resource intensiveness of this in-person intervention has limited its widespread delivery. We conducted a multicenter, randomized trial with a noninferiority design to evaluate whether a web-based version of BI requiring fewer resources is noninferior to in-person administration. METHODS: 621 caregivers of children with newly diagnosed cancer were randomly assigned to standard BI delivered face-to-face or a web-based version delivered via mobile device. The primary outcome was caregiver-reported problem-solving skills. The noninferiority margin was defined as 0.2 standard deviation units of the change from baseline to end of intervention. Secondary outcomes included caregiver-reported mood disturbance, depression, and posttraumatic stress symptoms. The study was registered with ClinicalTrials.gov Identifier: NCT01711944. FINDINGS: The effect of the standard treatment was preserved; parents in the standard BI arm improved their problem-solving (effect size = 0.53, t = 8.88, p < .001). Parents in the web-based BI group also improved their problem-solving (effect size = 0.32, t = 5.32, p < .001). Although the web-based intervention preserved 60% of the standard treatment effect, the test of noninferiority was non-significant (effect size = -0.21, p = 0.55). Similarly, the web-based intervention preserved > 60% of the standard intervention effect on all secondary outcomes; however, tests of noninferiority were non-significant. INTERPRETATION: Noninferiority of web-based BI relative to standard face-to-face administration was not established. Further development of the web-based BI is needed before it can be recommended as a stand-alone intervention. However, the documented benefits of the web-based intervention as well as the advantages of low resource utilization and ease of delivery suggest that further development of web-based BI is indicated, and that it may play a valuable role in alleviating distress in caregivers of children with serious or chronic illness. FUNDING: National Institutes of Health (U.S.), R01 CA159013 (P.I. Sahler).

12.
J Pediatr Psychol ; 34(8): 817-21, 2009 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-19129268

RESUMO

OBJECTIVE: To examine negative affectivity and problem-solving abilities for lone mothers and those who are married/partnered subsequent to a child's diagnosis with cancer. METHODS: Negative affectivity and problem-solving strategies were assessed for 464 mothers (87 lone and 377 married/partnered) within 2-16 weeks of their child's diagnosis with cancer. RESULTS: The two groups of mothers did not differ significantly on measures of perceived posttraumatic stress or problem-solving; lone mothers reported significantly more symptoms of depression. This difference was no longer significant when maternal education was taken into account. CONCLUSIONS: Negative affectivity and problem-solving abilities were similar for lone mothers and those that are married/partnered shortly after their child has been diagnosed with cancer. Findings are discussed within the context of contemporary strategies to assess marital status as proxy variable for various underlying constructs.


Assuntos
Ansiedade/terapia , Depressão/terapia , Terapia Familiar/métodos , Mães/psicologia , Neoplasias/psicologia , Resolução de Problemas , Transtornos de Estresse Pós-Traumáticos/terapia , Adaptação Psicológica , Adolescente , Adulto , Ansiedade/diagnóstico , Ansiedade/psicologia , Criança , Estudos Transversais , Depressão/diagnóstico , Depressão/psicologia , Feminino , Humanos , Masculino , Mães/educação , Neoplasias/diagnóstico , Neoplasias/terapia , Inventário de Personalidade/estatística & dados numéricos , Psicometria , Pais Solteiros/educação , Pais Solteiros/psicologia , Transtornos de Estresse Pós-Traumáticos/diagnóstico , Transtornos de Estresse Pós-Traumáticos/psicologia
13.
J Pediatr Psychol ; 34(5): 551-63, 2009 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-19091804

RESUMO

OBJECTIVES: To evaluate the feasibility and efficacy of a handheld personal digital assistant (PDA)-based supplement for maternal Problem-Solving Skills Training (PSST) and to explore Spanish-speaking mothers' experiences with it. METHODS: Mothers (n = 197) of children with newly diagnosed cancer were randomized to traditional PSST or PSST + PDA 8-week programs. Participants completed the Social Problem-Solving Inventory-Revised, Beck Depression Inventory-II, Profile of Mood States, and Impact of Event Scale-Revised pre-, post-treatment, and 3 months after completion of the intervention. Mothers also rated optimism, logic, and confidence in the intervention and technology. RESULTS: Both groups demonstrated significant positive change over time on all psychosocial measures. No between-group differences emerged. Despite technological "glitches," mothers expressed moderately high optimism, appreciation for logic, and confidence in both interventions and rated the PDA-based program favorably. Technology appealed to all Spanish-speaking mothers, with younger mothers showing greater proficiency. CONCLUSIONS: Well-designed, supported technology holds promise for enhancing psychological interventions.


Assuntos
Adaptação Psicológica , Computadores de Mão/estatística & dados numéricos , Mães/psicologia , Resolução de Problemas , Estresse Psicológico , Terapia Assistida por Computador , Criança , Conhecimentos, Atitudes e Prática em Saúde , Hispânico ou Latino/etnologia , Hispânico ou Latino/psicologia , Humanos , Relações Mãe-Filho , Mães/educação , Neoplasias , Estresse Psicológico/complicações , Terapia Assistida por Computador/métodos , Resultado do Tratamento
14.
Curr Oncol Rep ; 10(6): 469-76, 2008 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-18928661

RESUMO

Advances in pediatric cancer treatment over the past 50 years have dramatically improved survival rates. Once considered almost uniformly fatal, pediatric cancer's overall survival rates now approach 85%. Formerly, little psychosocial support existed for the child with cancer other than that provided by nurses and family. The prospect for long-term survival was so remote that plans for the future (eg, school, social relationships, late effects of treatment, and emotional adjustment) were abandoned. As the survival rate for children with cancer improved, so did the need for and quality of psychosocial care, largely because of hope for a cure. Today children with cancer benefit from comprehensive behavioral pediatric psychosocial support programs in psychiatry, psychology, neuropsychology, child life, education (school), creative arts, chaplaincy, social work, and career and vocational counseling. Pediatric psycho-oncology research has provided insights into clinical care and the psychosocial adaptation of children and families to cancer treatment and survivorship.


Assuntos
Oncologia/métodos , Neoplasias/psicologia , Neoplasias/terapia , Pediatria/métodos , Adaptação Psicológica , Adolescente , Criança , Família/psicologia , Humanos , Neuropsicologia/métodos , Pacientes/psicologia , Grupos de Autoajuda , Apoio Social , Estresse Psicológico/psicologia , Estresse Psicológico/terapia , Sobreviventes/psicologia
15.
Bioengineering (Basel) ; 5(3)2018 Sep 11.
Artigo em Inglês | MEDLINE | ID: mdl-30208602

RESUMO

The late neurocognitive and psychosocial effects of treatment for pediatric brain tumor (PBT) represent important areas of clinical focus and ongoing research. Neurocognitive sequelae and associated problems with learning and socioemotional development negatively impact PBT survivors' overall health-related quality of life, educational attainment and employment rates. Multiple factors including tumor features and associated complications, treatment methods, individual protective and vulnerability factors and accessibility of environmental supports contribute to the neurocognitive and psychosocial outcomes in PBT survivors. Declines in overall measured intelligence are common and may persist years after treatment. Core deficits in attention, processing speed and working memory are postulated to underlie problems with overall intellectual development, academic achievement and career attainment. Additionally, psychological problems after PBT can include depression, anxiety and psychosocial adjustment issues. Several intervention paradigms are briefly described, though to date research on innovative, specific and effective interventions for neurocognitive late effects is still in its early stages. This article reviews the existing research for understanding PBT late effects and highlights the need for innovative research to enhance neurocognitive and psychosocial outcomes in PBT survivors.

16.
Anticancer Res ; 27(1B): 523-9, 2007.
Artigo em Inglês | MEDLINE | ID: mdl-17348436

RESUMO

BACKGROUND: Comprehensive, efficient health status assessment tools are needed for multi-center studies examining childhood brain tumor treatment outcomes. The Fertigkeitenskala Münster Heidelberg (FMH) is presented as a quantitative measure of health status. PATIENTS AND METHODS: The FMH was compared with the medical assessments, intelligence scores, and behavioral/emotional adjustment scores of 21 survivors of medulloblastoma to examine the instrument's feasibility and discriminate validity. The subjects, aged from 3 to 38 years, represented a broad range of health functioning, from asymptomatic to severely handicapped. The median age at diagnosis was 10.5 years. The median time of assessment was 1.5 years from diagnosis. RESULTS: Correlations calculated between the physicians' assessments and the other measures showed a very close relationship between the physicians' ratings and the FMH scores (rho =0. 784, p < 0. 0005) and physicians' ratings and Performance IQ (rho=0.679, p=0.005). Additionally, a correlation between the FMH and Full Scale IQ was demonstrated (r=0.627, p=0.012). The Child Behavior Checklist (CBCL) did not correlate with any other tests. Of the three assessment methods, the FMH showed the highest correlation with degree of handicap (p <0.0005). The FMH took less than 10 minutes to administer and was the only test feasible in all patients. CONCLUSION: The FMH is useful as an objective, easily administered measure of health status in brain tumor patients. The FMH offers health status information that is correlated with physicians' assessments and FSIQ, but not behavioral/emotional adjustment as assessed by the CBCL.


Assuntos
Neoplasias Cerebelares/terapia , Nível de Saúde , Meduloblastoma/terapia , Avaliação de Resultados em Cuidados de Saúde/métodos , Inquéritos e Questionários , Adolescente , Adulto , Neoplasias Cerebelares/psicologia , Criança , Pré-Escolar , Humanos , Lactente , Meduloblastoma/psicologia , Avaliação de Resultados em Cuidados de Saúde/estatística & dados numéricos , Reprodutibilidade dos Testes
17.
J Adolesc Young Adult Oncol ; 5(3): 278-85, 2016 09.
Artigo em Inglês | MEDLINE | ID: mdl-27042872

RESUMO

PURPOSE: Adolescent and young adult (AYA)-aged central nervous system (CNS) tumor survivors are an understudied population that is at risk of developing adverse health outcomes, such as obesity. Long-term follow-up guidelines recommend monitoring those at risk of obesity, thus motivating the need for an eating behavior questionnaire. An abbreviated online version of the Three-Factor Eating Questionnaire (TFEQ-R18v2) has been developed, but its applicability to this population is not yet known. This study investigated the instrument's factor structure and reliability in this population. METHODS: AYA-aged CNS tumor survivors (n = 114) aged 15-39 years completed the TFEQ-R18V2 questionnaire online. Confirmatory factor analysis was used to examine the fit of the three-factor structure (uncontrollable eating, cognitive restraint, and emotional eating [EE]) and reliability (internal consistency of the TFEQ-R18v2). Associations between the three factors and body mass index (BMI) were assessed by linear regression. RESULTS: The theorized three-factor structure was supported in our population (RMSEA = 0.056 and CFI = 0.98) and demonstrated good reliability (α of 0.81-0.93). EE (ß = 0.07, 95% CI 0.02-0.13) was positively associated with BMI, whereas the other two subscale scores were not. CONCLUSION: The TFEQ-R18v2 instrument holds promise for research and clinical use among AYA-aged CNS tumor survivors. The instrument may be a useful tool for researchers to develop tailored weight management strategies. It also may be a valuable tool for clinicians to monitor survivors who are at risk of obesity and to facilitate referral. Our results also suggest that EE in this population should be further investigated as a potential target for intervention.


Assuntos
Neoplasias do Sistema Nervoso Central/mortalidade , Ingestão de Alimentos/fisiologia , Psicometria/métodos , Adolescente , Adulto , Estudos Transversais , Feminino , Humanos , Masculino , Inquéritos e Questionários , Sobreviventes , Adulto Jovem
18.
Health Psychol ; 33(2): 130-8, 2014 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-23544994

RESUMO

OBJECTIVE: This work evaluated the psychometric properties of the Pediatric Parenting Stress Inventory (PPSI), a new measure of problems and distress experienced by parents of children with chronic illnesses. METHOD: This secondary data analysis used baseline data from 1 sample of English-, Spanish-, and Hebrew-speaking mothers of children recently diagnosed with cancer (n = 449) and 1 sample of English- and Spanish-speaking mothers of children recently diagnosed with cancer (n = 399) who participated in 2 problem-solving skills training interventions. The PPSI was administered at baseline with other measures of maternal distress. Factor structure was evaluated using exploratory factor analysis (EFA) on the first sample and confirmatory factor analysis (CFA) on both samples. Internal consistency was evaluated using Cronbach's alpha. Construct validity was assessed via Spearman correlations with measures of maternal distress. RESULTS: EFA resulted in a stable four-factor solution with 35 items. CFA indicated that the four-factor solution demonstrated reasonable fit in both samples. Internal consistency of the subscales and full scale was adequate to excellent. Construct validity was supported by moderate to strong correlations with measures of maternal distress, depression, and posttraumatic stress symptoms. CONCLUSIONS: The PPSI demonstrated good psychometric properties in assessing current problems and distress experienced by mothers of children newly diagnosed with cancer. This tool may be used to identify individualized targets for intervention in families of children with cancer. Future studies could evaluate the utility and psychometrics of the PPSI with other pediatric populations.


Assuntos
Cuidadores/psicologia , Mães/psicologia , Poder Familiar/psicologia , Psicometria/normas , Estresse Psicológico/diagnóstico , Adolescente , Adulto , Criança , Análise Fatorial , Feminino , Humanos , Israel , Masculino , Pessoa de Meia-Idade , Relações Mãe-Filho , Mães/educação , Neoplasias/diagnóstico , Neoplasias/psicologia , Psicometria/instrumentação , Ensaios Clínicos Controlados Aleatórios como Assunto , Reprodutibilidade dos Testes , Estresse Psicológico/etiologia , Resultado do Tratamento , Estados Unidos
19.
J Clin Oncol ; 31(10): 1329-35, 2013 Apr 01.
Artigo em Inglês | MEDLINE | ID: mdl-23358975

RESUMO

PURPOSE: Diagnosis of cancer in a child can be extremely stressful for parents. Bright IDEAS, a problem-solving skills training (PSST) intervention, has been shown to decrease negative affectivity (anxiety, depression, post-traumatic stress symptoms) in mothers of newly diagnosed patients. This study was designed to determine the specificity of PSST by examining its direct and indirect (eg, social support) effects compared with a nondirective support (NDS) intervention. PATIENTS AND METHODS: This randomized clinical trial included 309 English- or Spanish-speaking mothers of children diagnosed 2 to 16 weeks before recruitment. Participants completed assessments prerandomization (T1), immediately postintervention (T2), and at 3-month follow-up (T3). Both PSST and NDS consisted of eight weekly 1-hour individual sessions. Outcomes included measures of problem-solving skill and negative affectivity. RESULTS: There were no significant between-group differences at baseline (T1). Except for level of problem-solving skill, which was directly taught in the PSST arm, outcome measures improved equally in both groups immediately postintervention (T2). However, at the 3-month follow-up (T3), mothers in the PSST group continued to show significant improvements in mood, anxiety, and post-traumatic stress; mothers in the NDS group showed no further significant gains. CONCLUSION: PSST is an effective and specific intervention whose beneficial effects continue to grow after the intervention ends. In contrast, NDS is an effective intervention while it is being administered, but its benefits plateau when active support is removed. Therefore, teaching coping skills at diagnosis has the potential to facilitate family resilience over the entire course of treatment.


Assuntos
Adaptação Psicológica , Relações Mãe-Filho , Mães/psicologia , Neoplasias/psicologia , Estresse Psicológico/terapia , Adolescente , Adulto , Transtornos de Ansiedade/psicologia , Transtornos de Ansiedade/terapia , Criança , Pré-Escolar , Transtorno Depressivo/psicologia , Transtorno Depressivo/terapia , Feminino , Seguimentos , Humanos , Pessoa de Meia-Idade , Mães/educação , Neoplasias/diagnóstico , Resolução de Problemas , Estresse Psicológico/psicologia , Resultado do Tratamento
20.
J Pediatr Oncol Nurs ; 26(3): 167-75, 2009.
Artigo em Inglês | MEDLINE | ID: mdl-19398713

RESUMO

It has been well established that mothers of children diagnosed with cancer experience high levels of distress. Latina mothers may be at risk for higher levels of distress related to language barriers, cultural factors, and economic, immigration, and acculturation stressors. Despite the increasing US Latino population, few studies have examined the role of culture within pediatric oncology, including how mothers cope with their child's cancer. This study used qualitative analysis of 24 sessions from 3 Latina and 3 European American mothers of children recently diagnosed with cancer. The session transcripts were divided into a total of 2328 thought segments that were then analyzed for themes using a collaborative iterative process. Analysis identified 9 shared coping themes that included, with some variations: gathering information, professional help-seeking, activities, problem solving, positive thinking, present orientation, reframing, avoidance, and religion. Three themes were culture specific: only European American mothers discussed compromise, whereas normalization and perspective taking were unique to the Latina mothers and suggest that the cultural value of simpatía influences coping. Clinical and research recommendations are discussed.


Assuntos
Adaptação Psicológica , Mães/psicologia , População Branca , Adulto , Criança , Humanos
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