RESUMO
Chemotherapy-induced peripheral neuropathy (CIPN), a debilitating side effect of pediatric cancer therapy, can be challenging to diagnose. We estimated the prevalence of newly identified and previously diagnosed CIPN in the regional HEROS Childhood Cancer Survivorship Clinic. From 2016 to 2018, 148 survivors (45.3% female, age 17.1 [SD 7.7] years, 81.8% in ongoing routine oncology follow-up) had their initial survivorship evaluation at an average of 7.4 (SD 6.6) years from diagnosis. Fifty-six survivors (37.8%) had CIPN, of these 46 (82.1%) were newly identified. Our findings demonstrate CIPN may be missed in routine oncology care, and new methods are needed to screen for CIPN.
Assuntos
Antineoplásicos , Sobreviventes de Câncer , Neoplasias , Doenças do Sistema Nervoso Periférico , Adolescente , Antineoplásicos/efeitos adversos , Criança , Feminino , Humanos , Masculino , Neoplasias/tratamento farmacológico , Doenças do Sistema Nervoso Periférico/induzido quimicamente , Doenças do Sistema Nervoso Periférico/tratamento farmacológico , Doenças do Sistema Nervoso Periférico/epidemiologia , SobrevivênciaRESUMO
PURPOSE: Adult childhood cancer survivors are frequently accompanied by a parent to survivorship clinic. From clinical evaluations among young adult survivors of childhood cancer we aimed to (1) investigate the association between accompaniment and the survivors' health complexity; and (2) determine whether accompaniment is associated with adherence to recommended surveillance tests and follow-up in clinic. METHODS: This was a cross-sectional study of all patients ≥ 18 years old at their first visit to the regional Yale Childhood Cancer Survivorship Clinic from 2003 to 2018. Patients underwent standardized evaluations for medical, neurocognitive, and emotional late effects of therapy; individuals accompanying patients were documented. RESULTS: The 168 patients were a median of 12.0 (range: 0-17.9) years at diagnosis and 22.7 (range: 18.1-39.9) years at evaluation, and 45.8% were accompanied by a parent. In multivariable analyses, 18.0-24.99 years vs. 25.0-39.99 years at visit (OR = 3.43, p = 0.022) and central nervous system (CNS) tumor diagnosis (OR = 6.09 vs. leukemia/lymphoma diagnosis, p = 0.010) were significantly associated with parental accompaniment. Accompaniment was not associated with number and severity of medical late effects, neurocognitive impairment, or emotional distress. Accompaniment was not associated with completed surveillance tests or a clinic follow-up within 2 years. CONCLUSION: Forty-six percent of survivors were accompanied by a parent, and accompaniment was not associated with survivor health status. Accompaniment was not associated with adherence to recommended surveillance tests or clinic follow-up.
Assuntos
Sobreviventes de Câncer/psicologia , Nível de Saúde , Neoplasias/mortalidade , Pais/psicologia , Adolescente , Assistência Ambulatorial , Criança , Pré-Escolar , Estudos Transversais , Feminino , Humanos , Lactente , Recém-Nascido , Masculino , Neoplasias/terapia , SobrevivênciaRESUMO
BACKGROUND: Neuroblastoma survivors may be at elevated risk for psychological impairments because of their young age at diagnosis and neurotoxic treatment, but this is not well described. METHODS: A total of 859 ≥5-year survivors of neuroblastoma younger than 18 years (diagnosed in 1970-1999), who had a median age at diagnosis of 0.8 years (range: 0.0-7.3 years) and a median follow-up of 13.3 years (range: 8.0-17.9 years), were compared with 872 siblings of childhood cancer survivors who were younger than 18 years with the parent-reported Behavior Problem Index (BPI) for psychological functioning. Age- and sex-adjusted multivariate log-binomial models were used to identify factors associated with impairment in BPI domains (scores worse than the sibling 10th percentile). The impact of psychological impairment on educational outcomes was examined among survivors. RESULTS: Compared with siblings, neuroblastoma survivors had an increased prevalence of impairment in the domains of anxiety/depression (19% vs 14%; P = .003), headstrong behavior (19% vs 13%; P < .001), attention deficits (21% vs 13%; P < .001), peer conflict/social withdrawal (26% vs 17%; P < .001), and antisocial behavior (16% vs 12%; P = .01). Common treatment exposures (vincristine, cisplatin, and retinoic acid) were not associated with impairment. Having 2 or more chronic health conditions predicted impairment in 4 domains (P < .001). Specifically, pulmonary disease predicted impairment in all 5 domains (P ≤ .004). Endocrine disease (P ≤ .004) and peripheral neuropathy (P ≤ .02) each predicted impairment in 3 domains. Psychological impairment was associated with special education service usage and educational attainment less than college. CONCLUSIONS: Neuroblastoma survivors are at elevated risk for psychological impairment, which is associated with special education service usage and lower adult educational attainment. Those with chronic health conditions may represent a high-risk group for targeted screening and intervention. Cancer 2018. © 2018 American Cancer Society.
Assuntos
Sobreviventes de Câncer/psicologia , Depressão/psicologia , Neuroblastoma/psicologia , Estresse Psicológico , Adolescente , Sobreviventes de Câncer/educação , Criança , Pré-Escolar , Depressão/complicações , Feminino , Nível de Saúde , Humanos , Recém-Nascido , Masculino , Neuroblastoma/complicações , Neuroblastoma/epidemiologia , Neuroblastoma/patologia , Fatores de Risco , Irmãos , Inquéritos e QuestionáriosRESUMO
BACKGROUND: Children with average-risk acute lymphoblastic leukemia (AR-ALL) face many challenges that can adversely affect their quality of life (QOL). However, to the authors' knowledge, patterns and predictors of QOL impairment during therapy have not been well characterized to date. METHODS: Patients with AR-ALL who were enrolled on the Children's Oncology Group AALL0932 trial were offered participation in this prospective cohort study if they were aged ≥4 years at the time of diagnosis and had an English-speaking parent. At approximately 2 months, 8 months, 17 months, 26 months, and 38 months (boys only) after diagnosis, parents completed the Pediatric Quality of Life Inventory Generic Core Scales Version 4.0 (PedsQL4.0) and McMaster Family Assessment Device instruments for QOL (physical, emotional, and social functioning) and family functioning, respectively. The proportions of individuals scoring in the impaired range (2 standard deviations below the population mean) were calculated at each time point. Longitudinal impairment patterns and predictors were examined. RESULTS: A total of 594 participants with AR-ALL were diagnosed at a mean age of 6.0 years (standard deviation, 1.6 years). At 2 months, a substantial proportion of participants had impaired scores for physical (36.5%; 95% confidence interval [95% CI], 32.3%-40.8%) and emotional (26.2%; 95% CI, 22.5%-30.2%) functioning compared with population norms of 2.3%. These elevations persisted at 26 months. Emotional impairment at 2 months (odds ratio, 3.4; 95% CI, 1.5-7.7) was found to significantly predict emotional impairment at 26 months. In repeated measures analysis with multivariate modeling, unhealthy family functioning (odds ratio, 1.5; 95% CI, 1.1-2.1) significantly predicted emotional impairment controlling for age and sex. QOL outcomes were similar between sexes at the end of therapy (26 months for girls and 38 months for boys). CONCLUSIONS: Many children with AR-ALL experience physical and emotional functioning impairment that begins early in treatment and persists. Early screening may identify high-risk patients who might benefit from family-based interventions. Cancer 2018;124:571-9. © 2017 American Cancer Society.
Assuntos
Leucemia-Linfoma Linfoblástico de Células Precursoras/psicologia , Qualidade de Vida , Sintomas Afetivos/epidemiologia , Criança , Pré-Escolar , Feminino , Humanos , Estudos Longitudinais , Masculino , Leucemia-Linfoma Linfoblástico de Células Precursoras/terapia , Caracteres SexuaisRESUMO
BACKGROUND: Parents' perception of their children's vulnerability to illness following cancer treatment is largely unknown, but is important to understand given known challenges of transitioning survivors to postcancer care. We investigated the frequency of and factors associated with perceived vulnerability by parents of childhood cancer survivors attending a regional survivorship clinic. PROCEDURE: This cohort study was offered to all parents of pediatric patients (currently ≤18 years) attending the Yale childhood cancer survivorship clinic January 2010 to October 2016 who were ≥1 year postcurative cancer therapy. Participating parents (one per patient) completed the standardized Child Vulnerability Scale at the beginning of the clinic visit (cutoff score ≥10 for perceived vulnerability). Patient sociodemographics, cancer history, and posttherapy complications were abstracted from medical records. RESULTS: Overall, 116 parents participated (98% participation rate) consisting of 89% mothers; survivors were 46% female, had a current mean age of 12.7 ± 3.9 years, and were a mean of 6.4 ± 3.8 years posttherapy. Twenty-eight percent (n = 33) of parents perceived their children as vulnerable. Survivor sociodemographics (age, sex, race/ethnicity, family income, insurance, parental marital status, number of siblings), cancer diagnosis, years off-therapy, survivorship visit number, treatment intensity, and late complications (number, type, severity) were not associated with perception of vulnerability. CONCLUSIONS: A sizeable proportion of parents continue to perceive their children as vulnerable even years after cancer therapy completion independent of current health status or past cancer history. Our data suggest the need to educate all parents of childhood cancer survivors regarding health risk, including those at lower risk for late complications.
Assuntos
Sobreviventes de Câncer , Conhecimentos, Atitudes e Prática em Saúde , Pais/psicologia , Adulto , Criança , Estudos de Coortes , Feminino , Humanos , Masculino , Percepção , Inquéritos e QuestionáriosRESUMO
Therapy for childhood acute lymphoblastic leukemia (ALL) is associated with 5-year survival rates of â¼90% even after largely eliminating cranial radiation. This meta-analysis assesses the long-term neurocognitive functioning after chemotherapy-only regimens among survivors of childhood ALL. We conducted a systematic review to identify studies that evaluated long-term neurocognitive functioning following treatment of ALL by searching MEDLINE/PubMed, Database of Abstracts of Reviews of Effects, and secondary sources. Studies were included if ALL survivors were in continuous first remission, did not receive any radiation, were at least ≥2 years off therapy or ≥5 years since diagnosis, and were compared with a healthy control group. Weighted mean differences with 95% confidence intervals (CIs) were calculated. Ten nonexperimental studies met all eligibility criteria and included 509 patients and 555 controls. Meta-analysis demonstrated statistically significant moderate impairment across multiple neurocognitive domains evaluated, with intelligence most affected. Significant differences in standard deviation (SD) scores were found for Full Scale intelligence quotient (IQ) (-0.52 SD; 95% CI, -0.68 to -0.37), Verbal IQ (-0.54 SD; 95% CI, -0.69 to -0.40), and Performance IQ (-0.41 SD; 95% CI, -0.56 to -0.27); these SD scores correspond to changes in IQ of 6 to 8 points. Working memory, information processing speed, and fine motor domains were moderately, but statistically significantly, impaired. Meta-analysis of ALL survivors treated without cranial radiation demonstrated significant impairment in IQ and other neurocognitive domains. Patients and their families should be informed about these potential negative effects to encourage surveillance and educational planning. Both preventive and intervention strategies are needed.
Assuntos
Protocolos de Quimioterapia Combinada Antineoplásica/efeitos adversos , Neoplasias Encefálicas/induzido quimicamente , Transtornos Cognitivos/induzido quimicamente , Leucemia-Linfoma Linfoblástico de Células Precursoras/tratamento farmacológico , Criança , Humanos , Taxa de Sobrevida , SobreviventesRESUMO
Neurocognitive problems, including executive dysfunction, are potential late effects of pediatric acute lymphoblastic leukemia treatment. Surveillance for neurocognitive impairment in a timely and efficient manner is imperative to ongoing clinical care. We sought to determine if the Behavior Rating Inventory of Executive Function (BRIEF) Parent Form identified leukemia survivors with cognitive impairment. In this 28-site cross-sectional study, parents of 256 children, a mean of 8.9±2.2 years after treatment for standard-risk precursor-B acute lymphoblastic leukemia and in first remission, completed the BRIEF. We used a multivariate logistic regression to calculate the association between elevated scores on 3 composite BRIEF indices (Behavioral Regulation Index, Metacognition Index, Global Executive Composite [GEC]) and special education and attention-deficit/hyperactivity disorder (ADHD) outcomes. All BRIEF index scores were significantly associated with receipt of special education services or ADHD. The BRI was most strongly associated with ADHD (odds ratios=4.33; 95% confidence interval, 1.72-10.9). The GEC was most strongly associated with ADHD (odds ratios=4.46; 95% confidence interval, 1.77-11.22). Elevated scores on the BRIEF GEC were associated with low sensitivity (24.1 to 39.1) for detecting the outcomes but better specificity (range, 87.7 to 89.3). These results suggest that the parent-completed BRIEF is associated with clinical outcomes but is not a sensitive tool to identify leukemia survivors that require a comprehensive neuropsychological assessment.
Assuntos
Função Executiva/fisiologia , Transtornos Neurocognitivos/etiologia , Leucemia-Linfoma Linfoblástico de Células Precursoras/complicações , Adolescente , Transtorno do Deficit de Atenção com Hiperatividade , Criança , Estudos Transversais , Humanos , Modelos Logísticos , Transtornos Neurocognitivos/diagnóstico , Pais , Leucemia-Linfoma Linfoblástico de Células Precursoras/terapia , Inquéritos e Questionários , SobreviventesRESUMO
Standard risk acute lymphoblastic leukemia (SR-ALL) has high cure rates, but requires 2-3 years of therapy. We aimed to (i) prospectively evaluate health-related quality of life (HRQOL) during and after SR-ALL therapy, and (ii) identify associated predictors. Parents of 160 SR-ALL patients enrolled on Children's Oncology Group (COG) therapeutic trial AALL0331 at 31 sites completed the Pediatric Quality of Life Inventory (PedsQL) 4.0 Generic Core Scales (physical, emotional and social functioning) and Family Assessment Device-General Functioning (FAD-GF) at 1, 6 and 12 months after diagnosis, and 3 months post-therapy. Mean PedsQL scores in physical, emotional and social functioning were impaired 1 month after diagnosis but steadily improved. Three months post-therapy, impaired physical and social functioning was observed in 27.8 and 25.8% of patients, respectively. In repeated-measures analysis, problematic family functioning predicted emotional (OR = 1.85, 95% CI 1.03-3.34) and social (OR = 1.99, 95% CI 1.21-3.27) impairment. Larger household size was associated with social impairment (OR = 1.21, 95% CI 1.02-1.45). Adverse neurological event(s) during therapy predicted post-therapy physical (OR = 5.17, 95% CI 1.61-16.63) and social (OR = 8.17, 95% CI 1.19-56.16) impairment. HRQOL 1 month after diagnosis was not predictive of HRQOL 3 months after therapy completion. In conclusion, children with SR-ALL experience considerable impairment in HRQOL at the end of induction, but rapidly improve. However, many still experience physical and social impairment 3 months post-therapy, suggesting a role for continued family and physical functioning support. Longer follow-up is needed to determine if post-therapy deficits change over time.
Assuntos
Leucemia-Linfoma Linfoblástico de Células Precursoras/complicações , Leucemia-Linfoma Linfoblástico de Células Precursoras/psicologia , Qualidade de Vida , Protocolos de Quimioterapia Combinada Antineoplásica/efeitos adversos , Criança , Pré-Escolar , Feminino , Humanos , Estudos Longitudinais , Masculino , Leucemia-Linfoma Linfoblástico de Células Precursoras/tratamento farmacológico , Estudos Prospectivos , Inquéritos e QuestionáriosRESUMO
BACKGROUND: The months immediately after the completion of treatment for childhood acute lymphoblastic leukemia (ALL) are often regarded as a stressful time for children and families. In this prospective, longitudinal study, the prevalence and predictors of anxiety and depressive symptoms after the completion of treatment were examined. METHODS: Participants included 160 children aged 2 to 9 years with standard-risk ALL who were enrolled on Children's Oncology Group protocol AALL0331. Parents completed standardized rating scales of their children's emotional-behavioral functioning and measures of coping and family functioning at approximately 1 month, 6 months, and 12 months after diagnosis and again 3 months after the completion of chemotherapy. RESULTS: At 3 months off therapy, approximately 24% of survivors had at-risk/clinically elevated anxiety scores and 28% had elevated depression scores, which are significantly higher than the expected 15% in the general population (P = .028 and .001, respectively). Patients with elevated anxiety 1 month after diagnosis were at greater risk of off-therapy anxiety (odds ratio, 4.1; 95% confidence interval, 1.31-12.73 [P = .022]) and those with elevated depressive symptoms 6 months after diagnosis were at greater risk of off-therapy depression (odds ratio, 7.88; 95% confidence interval, 2.61-23.81 [P = .0002]). In adjusted longitudinal analyses, unhealthy family functioning (P = .008) and less reliance on social support coping (P = .009) were found to be associated with risk of emotional distress. Children from Spanish-speaking families (P = .05) also were found to be at a greater risk of distress. CONCLUSIONS: A significant percentage of children experience emotional distress during and after therapy for ALL. These data provide a compelling rationale for targeted early screening and psychosocial interventions to support family functioning and coping skills. Cancer 2016;122:1608-17. © 2015 American Cancer Society.
Assuntos
Ansiedade/etiologia , Depressão/etiologia , Leucemia-Linfoma Linfoblástico de Células Precursoras/tratamento farmacológico , Leucemia-Linfoma Linfoblástico de Células Precursoras/psicologia , Protocolos de Quimioterapia Combinada Antineoplásica/uso terapêutico , Ansiedade/psicologia , Criança , Pré-Escolar , Depressão/psicologia , Relações Familiares/psicologia , Feminino , Humanos , Estudos Longitudinais , Masculino , Prevalência , Estudos Prospectivos , Ensaios Clínicos Controlados Aleatórios como AssuntoRESUMO
OBJECTIVE: Assess the association between fine motor (FM) and visual-motor integration (VMI) skills and academic achievement in pediatric acute lymphoblastic leukemia (ALL) survivors. METHODS: In this 28-site cross-sectional study of 256 children in first remission, a mean of 8.9 ± 2.2 years after treatment for standard-risk precursor-B ALL, validated measures of FM, VMI, reading, math, and intelligence were administered at mean follow-up age of 12.8 ± 2.5 years. RESULTS: VMI was significantly associated with written math calculation ability (p < .0069) after adjusting for intelligence (p < .0001). VMI was more strongly associated with math in those with lower intelligence (p = .0141). Word decoding was also significantly associated with VMI but with no effect modification by intelligence. FM skills were not associated with either reading or math achievement. CONCLUSION: These findings suggest that VMI is associated with aspects of math and reading achievement in leukemia survivors. These skills may be amenable to intervention.
Assuntos
Logro , Inteligência/fisiologia , Destreza Motora/fisiologia , Leucemia-Linfoma Linfoblástico de Células Precursoras/psicologia , Sobreviventes/psicologia , Adolescente , Criança , Estudos Transversais , Feminino , Humanos , Masculino , Matemática , Leucemia-Linfoma Linfoblástico de Células Precursoras/fisiopatologia , LeituraRESUMO
BACKGROUND: The authors prospectively assessed anxiety, depression, and behavior in children with standard-risk acute lymphoblastic leukemia (SR-ALL) during the first year of therapy and identified associated risk factors. METHODS: A cohort study was performed of 159 children (aged 2 years-9.99 years) with SR-ALL who were enrolled on Children's Oncology Group protocol AALL0331 at 31 sites. Parents completed the Behavior Assessment System for Children, the General Functioning Scale of the Family Assessment Device, and the Coping Health Inventory for Parents at approximately 1, 6, and 12 months after diagnosis. RESULTS: Overall, mean scores for anxiety, depression, aggression, and hyperactivity were similar to population norms. However, more children scored in the at-risk/clinical range for depression than the expected 15% at 1 month (21.7%; P= .022), 6 months (28.6%; P< .001), and 12 months (21.1%; P= .032). For anxiety, more children scored in the at-risk/clinical range at 1 month (25.2% vs 15%; P= .001), but then reverted to expected levels. On adjusted analysis, unhealthy family functioning was found to be predictive of anxiety (odds ratio [OR], 2.24; P= .033) and depression (OR, 2.40; P= .008). Hispanic ethnicity was associated with anxiety (OR, 3.35; P= .009). Worse physical functioning (P= .049), unmarried parents (P= .017), and less reliance on social support (P= .004) were found to be associated with depression. Emotional distress at 1 month predicted anxiety (OR, 7.11; P= .002) and depression (OR, 3.31; P= .023) at 12 months. CONCLUSIONS: Anxiety is a significant problem in a subpopulation of patients with SR-ALL immediately after diagnosis, whereas depression remains a significant problem for at least 1 year. Children of Hispanic ethnicity or those with unhealthy family functioning may be particularly vulnerable. These data suggest that clinicians should screen for anxiety and depression throughout the first year of therapy.
Assuntos
Ansiedade/etiologia , Depressão/etiologia , Leucemia-Linfoma Linfoblástico de Células Precursoras/tratamento farmacológico , Leucemia-Linfoma Linfoblástico de Células Precursoras/psicologia , Agressão/psicologia , Protocolos de Quimioterapia Combinada Antineoplásica/uso terapêutico , Asparaginase/administração & dosagem , Comportamento , Criança , Pré-Escolar , Estudos de Coortes , Ciclofosfamida/administração & dosagem , Dexametasona/administração & dosagem , Emoções , Feminino , Humanos , Estudos Longitudinais , Masculino , Polietilenoglicóis/administração & dosagem , Leucemia-Linfoma Linfoblástico de Células Precursoras/diagnóstico , Estudos Prospectivos , Agitação Psicomotora/etiologia , Vincristina/administração & dosagemRESUMO
BACKGROUND: Despite higher cure rates, childhood acute lymphoblastic leukemia (ALL) may continue to result in considerable family strain. We sought to (i) measure incidence of divorce, reduced career opportunities, changes to work hours, home relocation, and changes to family planning at one year after ALL diagnosis; and (ii) Identify family and patient factors associated with these events. PROCEDURE: We conducted a prospective cohort study of 159 children with average risk-ALL enrolled and treated on COG protocol AALL0331 at 31 selected sites. Eligibility criteria included age ≥2 years and English or Spanish comprehension. Parents completed surveys at three time points during the first 12 months of therapy. RESULTS: Parents were at significantly increased risk of loss of employment (46% vs. 9.1%, P ≤ 0.001) than peers nationally. 13% divorced/separated, 27% relocated homes, 22% decided not to have more children, 51% declined occupational opportunities, and 68% decreased work hours. In adjusted analyses, relocation correlated with less maternal education (OR: 4.27 [95% CI: 1.43-12.82]). Declining parental opportunities associated with family income <$50,000 (OR: 4.25 [95% CI: 1.50-12.02]) and child <5 years old (OR: 4.21 [95% CI: 1.73-10.25]). Deciding not to have more children correlated with smaller family size 2-3 versus 4-5 (OR: 3.62 [95% CI: 1.10-11.96]). CONCLUSION: Families experience a high incidence of major life changes in the first year of ALL treatment. Understanding these burdens helps health care providers to provide appropriate anticipatory guidance and support. No unifying factor was associated with the different family events. Ongoing follow-up is planned to measure long-term outcomes.
Assuntos
Relações Familiares , Acontecimentos que Mudam a Vida , Pais/psicologia , Leucemia-Linfoma Linfoblástico de Células Precursoras/psicologia , Leucemia-Linfoma Linfoblástico de Células Precursoras/terapia , Estresse Psicológico , Criança , Pré-Escolar , Feminino , Seguimentos , Humanos , Renda , Lactente , Estudos Longitudinais , Masculino , Casamento , Prognóstico , Estudos ProspectivosRESUMO
OBJECTIVES: Childhood cancer survivors are at risk for chemotherapy-induced peripheral neuropathy (CIPN). Physical therapy (PT) improves CIPN symptoms, but little is known about survivors' PT utilization. We described characteristics of survivors with ≥ grade 2 CIPN, investigated PT referral and attendance, and described characteristics of survivors who attended and did not attend PT. METHODS: Childhood cancer survivors <21 years old at cancer diagnosis and ≥2 years posttherapy, living in the United States, evaluated at a regional survivorship clinic were included in this retrospective analysis if they had motor CIPN. Symptomatic CIPN (≥grade 2 by Common Terminology Criteria for Adverse Events) and PT referral/attendance were tabulated. Patient characteristics from the medical record, and neighborhood characteristics (retrieved using survivors' zip code from the National Neighborhood Data Archive) were described by group. RESULTS: Among 91 survivors with CIPN (median 17.5 years old, 8.1 years postcancer diagnosis, 45.1% female), 35 (38.5%) had ≥ grade 2 CIPN. Survivors with ≥ grade 2 CIPN were 28.6% female, and 45.7% were <13 years old. Twenty-four (68.6%) survivors with ≥ grade 2 CIPN agreed to PT referral, and 15 (42.9%) attended PT. Among survivors who attended PT, 73.3% were <13 years old. Neighborhood characteristics of survivors included median percentage of adults without a high school diploma (6.7% PT attendees, 12.5% nonattendees), median percentage of adults who are foreign-born (11.5% PT attendees, 16.4% nonattendees), and median percentage of households with an annual income of <$15,000 (3.2% PT attendees, 6.5% nonattendees). CONCLUSIONS: While 68.6% of survivors with ≥ grade 2 CIPN were referred to PT, only 42.9% attended. Studies to better understand barriers to PT attendance and interventions to improve attendance are needed, especially in older survivors. IMPLICATIONS FOR NURSING PRACTICE: Nurses can play a key role in survivor education and care coordination to help optimize PT attendance.
Assuntos
Antineoplásicos , Sobreviventes de Câncer , Neoplasias , Doenças do Sistema Nervoso Periférico , Modalidades de Fisioterapia , Encaminhamento e Consulta , Humanos , Feminino , Masculino , Sobreviventes de Câncer/estatística & dados numéricos , Doenças do Sistema Nervoso Periférico/induzido quimicamente , Encaminhamento e Consulta/estatística & dados numéricos , Adolescente , Estudos Retrospectivos , Criança , Neoplasias/tratamento farmacológico , Modalidades de Fisioterapia/estatística & dados numéricos , Adulto Jovem , Antineoplásicos/efeitos adversos , Adulto , Estados Unidos/epidemiologia , Pré-EscolarRESUMO
Medical specialty camps can play an important role in the positive development of psychosocial outcomes for children and youth with sickle cell disease (SCD). This study examined how sense of mastery and attitude towards illness outcomes changed over 6 months for 100 campers aged 8-16 years with SCD. The outcomes were measured twice before and twice after camp. Latent growth curve modeling was used to analyze data. Results showed no changes in the outcomes for this study population. Implications for future research designs, populations, and outcomes are discussed, as are implications for communications about camp, and policy and practice.
Assuntos
Anemia Falciforme , Medicina , Criança , Humanos , Adolescente , Anemia Falciforme/terapiaRESUMO
Little is known about cognitive impairment in patients with sickle cell disease in Africa. This study aimed to assess cognitive impairment and identify possible risk factors in patients with sickle cell disease in Egypt. This study was conducted at Cairo University Children Hospital. Patients with sickle cell disease, between ages of 6-20 years were enrolled. Cognitive ability was tested using the Stanford Binet intelligence quotient (IQ) test, fourth edition. Transcranial Doppler, magnetic resonance imaging and magnetic resonance angiography of the brain were performed within a week of the IQ test. Among the 40 enrolled patients, 55% had a Full Scale IQ at least 1 standard deviation below the mean, and 27.5% had an IQ 2 standard deviations below the mean. High lactate dehydrogenase was significantly associated with low IQ (p = 0.004). In univariate analyses, IQ was significantly correlated with older age (p = 0.025), high lactate dehydrogenase (p = 0.008) and older age at the start of hydroxyurea (p = 0.025). Impaired cognition is prevalent among sickle cell disease patients. Early initiation of hydroxyurea therapy, which should also reduce hemolysis and lactate dehydrogenase, may be a simple measure to preserve mental abilities in these patients.
Assuntos
Anemia Falciforme/complicações , Anemia Falciforme/epidemiologia , Cognição , Disfunção Cognitiva/epidemiologia , Disfunção Cognitiva/etiologia , Adolescente , Adulto , Fatores Etários , Anemia Falciforme/diagnóstico , Biomarcadores/sangue , Encéfalo/diagnóstico por imagem , Encéfalo/fisiopatologia , Criança , Disfunção Cognitiva/diagnóstico , Disfunção Cognitiva/prevenção & controle , Diagnóstico por Imagem , Egito/epidemiologia , Feminino , Humanos , Hidroxiureia/administração & dosagem , Hidroxiureia/uso terapêutico , Testes de Inteligência , L-Lactato Desidrogenase/sangue , Masculino , Prevalência , Fatores de Risco , Adulto JovemRESUMO
BACKGROUND: The ability to regulate emotion is associated with affective disorders and the experience of pain. However, little is known about emotion regulation in youth with Sickle Cell Disease (SCD), a population that regularly experiences pain and symptoms of depression and anxiety. This study examines the relationship between emotion regulation and symptoms of depression, anxiety, and pain interference in youth with SCD. METHODS: Participants ages 8-20 at a university-based pediatric sickle cell clinic completed the Emotion Regulation Questionnaire (ERQ) and the Cognitive Emotion Regulation Questionnaire (CERQ), self-report measures assessing use of emotion regulation strategies. Participants also completed the Patient-Reported Outcomes Measurement Information System (PROMIS), measures for symptoms of anxiety, depression, and pain interference. Multiple regression models tested associations between use of emotion regulation strategies and symptoms of depression, anxiety, and pain interference. RESULTS: Participants were 51 patients with SCD, 30 female and 21 male, with a mean age of 13.02 years (SD = 0.47, mid-max = 8-20). Use of maladaptive emotion regulation strategies was associated with increased symptoms of depression (r = .58), anxiety (r = .45) and pain interference (r = .30) in youth with SCD. LIMITATIONS: Potential limitations of our study include small sample size, use of youth self-report measures, and participant selection contingent on the ability to attend an outpatient appointment. CONCLUSION: Identifying maladaptive emotion regulation strategies in youth with SCD may provide clinicians with targeted pathways for improving emotional and psychological functioning.
Assuntos
Anemia Falciforme , Regulação Emocional , Adolescente , Adulto , Sintomas Afetivos , Anemia Falciforme/complicações , Criança , Depressão , Feminino , Humanos , Masculino , Dor , Inquéritos e Questionários , Adulto JovemRESUMO
BACKGROUND: Many childhood cancer survivors develop neurocognitive impairment, negatively affecting education and psychosocial functioning. Recommended comprehensive neuropsychological testing can be time- and cost- intensive for both institutions and patients and their families. It is important to find quick and easily administered surveillance measures to identify those in need of evaluation. METHODS: We evaluated, individually and in combination, the sensitivity and specificity of the 1) Behavior Rating Inventory of Executive Functioning-Metacognition Index (BRIEF-MCI), and 2) CogState Composite Index (computerized assessment of cognition) in identifying below grade-level performance on state-administered tests of reading and mathematics among childhood cancer survivors. RESULTS: The 45 participants (39% female) were a mean age of 7.1 ± 4.4 years at diagnosis, 14.0 ± 3.0 at evaluation, with a history of leukemia (58%), lymphoma (9%), central nervous system tumors (20%), and other tumors (13%). Impairment on the BRIEF-MCI was associated with low sensitivity (26% reading, 41% mathematics) but stronger specificity (88% reading, 96% mathematics). We found similar associations for the CogState Composite Index with sensitivity of 26% for reading and 29% for mathematics and specificity of 92% for both reading and mathematics. Combining the two measures did not improve sensitivity appreciably (47% reading, 59% mathematics) while reducing specificity (84% reading, 88% mathematics). CONCLUSIONS: While individuals identified from the BRIEF-MCI or CogState Composite would likely benefit from a full neuropsychological evaluation given the strong specificity, use of these measures as screening tools is limited. With poor sensitivity, they do not identify many patients with academic difficulties and in need of a full neuropsychological evaluation. Continued effort is required to find screening measures that have both strong sensitivity and specificity.
Assuntos
Sobreviventes de Câncer , Transtornos Cognitivos/etiologia , Cognição , Testes Neuropsicológicos , Adolescente , Comportamento , Criança , Transtornos Cognitivos/fisiopatologia , Função Executiva , Feminino , Humanos , Masculino , Programas de Rastreamento , Monitorização Neurofisiológica , Sensibilidade e EspecificidadeRESUMO
OBJECTIVES: Frequent hospitalizations for sickle cell disease (SCD) vaso-occlusive crises (VOCs) are associated with school absenteeism, emotional distress, and financial hardships. Our goal was to decrease hospital days for VOC admissions by 40% over a 5-year period. METHODS: From October 2011 to September 2016, a multidisciplinary quality-improvement project was conducted with a plan-do-study-act methodology. Five key drivers were identified and 9 interventions implemented. Interventions included individualized home pain plans, emergency department and inpatient order sets, an inpatient daily schedule, psychoeducation, and a biofeedback program. High users (≥4 admissions per year) received an individualized SCD plan and assigned mental health provider. We expanded the high-use group to include at-risk patients (3 admissions per year). Data were analyzed for patients ages 0 to 21 years admitted for VOC. Hospital days were the primary measure; the 30-day readmission rate was the balancing measure. RESULTS: A total of 216 SCD pediatric patients were managed in 2011 with a 14% increase over 5 years. A total of 122 patients were admitted for VOC. Hospital days decreased by 61% from 59.6 days per month in the preintervention period to 23.2 days per month in the postintervention period (P < .0001). Length of stay decreased from 4.78 (SD = 4.08) to 3.84 days (SD = 2.10; P = .02). Among high users, hospital days decreased from 35.4 to 15.5 days per month. The thirty-day readmission rate decreased from 33.9% to 19.4%. Overall savings in direct hospital costs per year were $555 120. CONCLUSIONS: A dedicated team effort with simple interventions can have a significant impact on the well-being of a patient population and hospital costs.
Assuntos
Anemia Falciforme/terapia , Manejo da Dor/normas , Admissão do Paciente/normas , Equipe de Assistência ao Paciente/normas , Melhoria de Qualidade/normas , Adolescente , Anemia Falciforme/diagnóstico , Anemia Falciforme/epidemiologia , Criança , Pré-Escolar , Feminino , Humanos , Masculino , Dor/diagnóstico , Dor/epidemiologia , Manejo da Dor/métodosRESUMO
BACKGROUND: Functional magnetic resonance imaging is a noninvasive method of assessing language dominance in a pediatric population. OBJECTIVE: To determine the pattern of receptive language lateralization in healthy children. DESIGN: We used functional magnetic resonance imaging to assess an auditory language task in 11 children (7 girls, 4 boys; mean age, 8.5 years). Participants alternately rested and listened to descriptors of nouns presented auditorily, naming the object described silently. Asymmetry indices ([(left - right)/(left + right)]) were calculated for a priori-determined regions of interest. RESULTS: The results showed strong activation bilaterally, with greater activation on the left in the superior and middle temporal gyri. Other areas of activation included the cuneus, the left inferior temporal gyrus, the prefrontal area, and the left fusiform and lingual gyri. Regions of interest analysis of individual scans showed additional activation in the left frontal lobe. Asymmetry indices showed strong left lateralization of the inferior frontal gyrus, middle frontal gyrus, and the Wernicke region. CONCLUSIONS: Hemispheric lateralization was clearly demonstrated in 8 children. As in adults, left hemisphere lateralization of receptive language is present at age 8 years.
Assuntos
Mapeamento Encefálico/métodos , Córtex Cerebral/fisiologia , Dominância Cerebral , Idioma , Imageamento por Ressonância Magnética , Criança , Feminino , Lateralidade Funcional , Humanos , Modelos Lineares , MasculinoRESUMO
Restricted stimulus control refers to discrimination learning with atypical limitations in the range of controlling stimuli or stimulus features. In the study reported here, 4 normally capable individuals and 10 individuals with intellectual disabilities (ID) performed two-sample delayed matching to sample. Sample-stimulus observing was recorded with an eye-tracking apparatus. High accuracy scores indicated stimulus control by both sample stimuli for the 4 nondisabled participants and 4 participants with ID, and eye tracking data showed reliable observing of all stimuli. Intermediate accuracy scores indicated restricted stimulus control for the remaining 6 participants. Their eye-tracking data showed that errors were related to failures to observe sample stimuli and relatively brief observing durations. Five of these participants were then given interventions designed to improve observing behavior. For 4 participants, the interventions resulted initially in elimination of observing failures, increased observing durations, and increased accuracy. For 2 of these participants, contingencies sufficient to maintain adequate observing were not always sufficient to maintain high accuracy; subsequent procedure modifications restored it, however. For the 5th participant, initial improvements in observing were not accompanied by improved accuracy, an apparent instance of observing without attending; accuracy improved only after an additional intervention that imposed contingencies on observing behavior. Thus, interventions that control observing behavior seem necessary but may not always be sufficient for the remediation of restricted stimulus control.