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1.
Health Qual Life Outcomes ; 22(1): 27, 2024 Mar 22.
Artigo em Inglês | MEDLINE | ID: mdl-38519964

RESUMO

BACKGROUND: This study examined fatigue in patients treated for childhood acute lymphoblastic leukemia (ALL) over a 2-year period (3- to 27-months post-treatment completion), from the perspective of children and parent caregivers, compared to a healthy comparison group. METHODS: Eighty-three patients (4-16 years at enrolment) and their parents, reported on the child's fatigue using the Pediatric Quality of Life Inventory- Multidimensional Fatigue Scale (PedsQL-MFS), at 3- 15- and 27-months post-treatment completion, and 53 healthy children and their parents reported on fatigue across the same timepoints. RESULTS: Parent proxy-reporting showed that parents of ALL patients reported more total fatigue than parents of the comparison group at all time points, with all subscales elevated (general, cognitive, and sleep/rest fatigue). In contrast, patient self-report of fatigue over this period differed from the comparison children for the general fatigue subscale only. Self-reported total fatigue was worse than the comparison group at the 27-month timepoint, with cognitive and sleep/rest fatigue symptoms contributing to this difference. Expected improvements in fatigue over time were not evident in either patient or parent report and no demographic risk factors were identified. Parents and children from both groups reported significantly more fatigue at all time points compared to commonly utilised normative population data. CONCLUSIONS: Patients treated for childhood ALL are impacted by fatigue symptoms in the post-treatment and early survivorship period. These findings highlight that patients in the 2-years following treatment require increased symptom surveillance and may benefit particularly from interventions that target cognitive and sleep/rest fatigue.


Assuntos
Leucemia-Linfoma Linfoblástico de Células Precursoras , Qualidade de Vida , Criança , Humanos , Estudos Longitudinais , Fadiga/psicologia , Autorrelato , Leucemia-Linfoma Linfoblástico de Células Precursoras/complicações , Leucemia-Linfoma Linfoblástico de Células Precursoras/tratamento farmacológico , Leucemia-Linfoma Linfoblástico de Células Precursoras/psicologia
2.
J Fam Psychol ; 38(1): 149-160, 2024 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-37289501

RESUMO

The present study is a systematic review of factors and consequences of parental distress following their children's acute lymphoblastic leukemia (ALL) diagnosis. PubMed, Web of Science, and APA PsycInfo databases were searched. Twenty-eight papers were included, with only three longitudinal studies. Fifteen studies explored factors of parental distress, including sociodemographic, psychosocial, psychological, family, health, and ALL-specific variables. Correlations were found between social support, illness cognitions, coping strategies, and parental distress, as well as contradictory results regarding sociodemographic variables. Family cohesion and the overall impact of illness were associated with parental distress. Resilience factors contributed negatively to parental distress symptoms, and perceived caregiver strain and negative child's emotional functioning contributed positively. Thirteen papers explored the consequences of parental distress, including psychological, family, health, and social/education factors. Distress was correlated with care burden and contributed to family strain, child's symptom burden, and parental protective behavior. Significant correlations were found between parental distress, at diagnosis, and further adjustment of parents and children. Most papers reported correlations between parental distress and psychological condition and quality of life; few studies reported no association. Correlations between maternal depression and child's participation in education and social life were found. Differences on distress were found regarding parents' gender, age, children's group risk, and treatment phases. Longitudinal studies are needed to better understand the phenomenon and its consequences. Future interventions should address parents' mental health needs in an early and ongoing assessment in order to promote healthier outcomes. (PsycInfo Database Record (c) 2024 APA, all rights reserved).


Assuntos
Leucemia-Linfoma Linfoblástico de Células Precursoras , Qualidade de Vida , Criança , Humanos , Estresse Psicológico/etiologia , Estresse Psicológico/psicologia , Pais/psicologia , Família , Leucemia-Linfoma Linfoblástico de Células Precursoras/complicações , Leucemia-Linfoma Linfoblástico de Células Precursoras/psicologia
3.
Pediatr Blood Cancer ; 70(11): e30560, 2023 11.
Artigo em Inglês | MEDLINE | ID: mdl-37461125

RESUMO

BACKGROUND: Children treated for acute lymphoblastic leukemia (ALL) receive prolonged treatment, resulting in toxicities that affect health-related quality of life (HR-QoL). Longitudinal assessment of HR-QoL allows improved understanding of experiences with ALL. PROCEDURE: Parent-proxy and child self-report HR-QoL over the first year of chemotherapy were evaluated in the context of DFCI Protocol 05-001, a phase 3 therapeutic trial for childhood ALL. HR-QoL was assessed with the Pediatric Quality-of-Life inventory (PedsQL) domains for Pain and Hurt, Procedural Anxiety, Treatment Anxiety, Emotional Functioning, General Fatigue, and Sleep/Rest Fatigue. RESULTS: Total of 281 subjects participated, with 141 contributing at least one child report and 280 at least one parent report. Children with ALL experienced impairment in HR-QoL by both patient and parent report compared to the published PedsQL reference population at each time point on each subscale. Agreement between parent and child assessment of HR-QoL impairment was high, particularly among those for whom HR-QoL was not impaired. During the consolidation phase, which included intensive asparaginase administration, multivariable models demonstrated more impairment in Treatment Anxiety and Procedural Anxiety for children treated with intramuscular asparaginase than intravenous asparaginase, but randomized groups were otherwise similar in HR-QoL. Impairments in fatigue, both General and Sleep/Rest, were evident throughout and worse during intensive asparaginase therapy. CONCLUSIONS: This report examines HR-QoL for children with ALL during treatment longitudinally by parent and patient report across multiple domains. Children with ALL demonstrated substantial impairment in HR-QoL, particularly related to fatigue during intensive consolidation therapy including asparaginase.


Assuntos
Leucemia-Linfoma Linfoblástico de Células Precursoras , Qualidade de Vida , Criança , Humanos , Asparaginase/efeitos adversos , Fadiga/etiologia , Dor , Leucemia-Linfoma Linfoblástico de Células Precursoras/tratamento farmacológico , Leucemia-Linfoma Linfoblástico de Células Precursoras/psicologia , Qualidade de Vida/psicologia
4.
Psychooncology ; 31(12): 2159-2168, 2022 12.
Artigo em Inglês | MEDLINE | ID: mdl-36307941

RESUMO

OBJECTIVE: Improved treatment landscape has led to better outcomes for paediatric acute lymphoblastic leukemia (ALL) survivors. As the number of survivors increase, we need to elucidate the long-term quality of life (QoL) and domains of complaints in these patients. Furthermore, the main priorities of these patients need to be clarified. We assessed long-term QoL outcomes of survivors of childhood ALL compared to matched population controls. METHODS: QoL data were collected from survivors recruited in France and Belgium between 2012 and 2017, including the Short Form Health Survey (SF-12) and the Quality of Life Systemic Inventory (QLSI). The Wilcoxon test was used to compare SF-12 scale scores between survivors and matched population controls. For the QLSI, comparisons were mainly descriptive. RESULTS: One hundred and eighty-six survivors (mean age: 27.6 years; range: 18.1-52.8) at follow-up completed QoL measures, amongst whom 180 were matched to controls. Overall, survivors had higher QoL on all SF12 scale scores, indicating that they had better functioning compared to controls. Statistically significant differences on the SF12 were observed for Vitality, Social Functioning, Role Limitations due to Emotional Problems and Mental Health scales. QLSI outcomes suggested that survivors were happier than controls with Couple and Social Relations. Controls were unhappiest compared to survivors with Money, Love life, Self-esteem, Nutrition and Paid Work. CONCLUSIONS: Our findings suggest that survivors of childhood ALL have better QoL outcomes on some domains compared to the general population, specifically around social and emotional functioning, and that they tend to prioritize their relationships more. Interventions for improving QoL outcomes, might build on existing positive experiences with family, friends and partners.


Assuntos
Leucemia-Linfoma Linfoblástico de Células Precursoras , Qualidade de Vida , Criança , Humanos , Adulto , Sobreviventes/psicologia , Leucemia-Linfoma Linfoblástico de Células Precursoras/terapia , Leucemia-Linfoma Linfoblástico de Células Precursoras/psicologia , Saúde Mental , Autoimagem
5.
J Clin Psychol Med Settings ; 29(2): 421-431, 2022 06.
Artigo em Inglês | MEDLINE | ID: mdl-35113314

RESUMO

This study describes the behavioral and emotional adjustment of 77 children and adolescents 3 months post-treatment for acute lymphoblastic leukemia (ALL), compared to 52 age and sex-matched healthy peers. Parents, teachers, and self-report ratings on the Behavioral Assessment System for Children, Second Edition (BASC-2) were utilized to measure psychological function. While overall mean scores were in the average range for both groups, parents and teachers rated patients higher on behavior symptoms, internalizing problems and adaptive skill difficulties. No significant differences between groups were observed on self-report, and inter-rater correlations were low to moderate. For the ALL group, maternal university completion was associated with elevations on parent report of behavioral problems, while no other factors predicted either parent or teacher report on other scales. Findings indicate that a subset of patients will require specialist psychosocial support to optimise their adjustment following treatment completion.


Assuntos
Nível de Saúde , Leucemia-Linfoma Linfoblástico de Células Precursoras , Adolescente , Criança , Emoções , Humanos , Grupo Associado , Leucemia-Linfoma Linfoblástico de Células Precursoras/psicologia , Leucemia-Linfoma Linfoblástico de Células Precursoras/terapia , Autorrelato
6.
Arch Pediatr ; 29(2): 145-152, 2022 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-34955301

RESUMO

OBJECTIVE: To develop and test a brief Composite Intervention Module for Pre-adolescents with Acute Lymphoblastic Leukemia (CIMPALL). DESIGN: Single-center randomized controlled design. SETTING: A tertiary care center of national importance PARTICIPANTS: A total of 36 children with acute lymphoblastic leukemia in the maintenance phase of the treatment. INTERVENTION: A five-session (540 min) brief, multidomain, audiovisually aided, therapist-facilitated conjoint intervention module for children with cancer and their parents. MAIN OUTCOME MEASURES: Standardized psychological tools for children including CBCL, CPSS (Child Posttraumatic Stress Disorder Symptoms Scale), PedsQol (Pediatric Quality of Life), and NIMHANS (National Institute of Mental Health and Neurosciences) neuropsychological battery and parents including PTSD CC (Posttraumatic Stress Disorder Civilian Checklist), CHIP (Coping Health Inventory for Parents), CBS (Caregiver Burden Scale), and SRQ (Self-Reporting Questionnaire). RESULTS: A total of 36 patients were randomized to an experimental or a control group. Over 80% agreement was observed on indices of expert evaluation; 100% of participants found the sessions to be helpful, useful, appropriate in terms of time, duration, and place, and interventionist. The participation rate in the sessions was 94% and the study flow was smooth; 97.3% eligible candidates agreed to participate. Furthermore, 100% agreement on performance of activities was observed and the attrition rate was 5.26%. CONCLUSION: This pilot study presents the CIMPALL, which to the best of our knowledge is the first of its kind in India. The data suggest that the CIMPALL intervention is feasibly delivered by a clinical psychologist and that the CIMPALL intervention has an impact on important psychosocial variables for children with acute lymphoblastic leukemia and their parents.


Assuntos
Pais/psicologia , Leucemia-Linfoma Linfoblástico de Células Precursoras/terapia , Intervenção Psicossocial/métodos , Qualidade de Vida/psicologia , Adolescente , Criança , Estudos de Viabilidade , Feminino , Humanos , Masculino , Relações Pais-Filho , Projetos Piloto , Leucemia-Linfoma Linfoblástico de Células Precursoras/psicologia
7.
Pediatr Blood Cancer ; 69(1): e29329, 2022 01.
Artigo em Inglês | MEDLINE | ID: mdl-34492743

RESUMO

OBJECTIVE: To describe the experiences and perspectives of parents of pediatric patients with acute lymphoblastic leukemia (ALL) regarding oral chemotherapy administration during maintenance therapy. METHODS: English-speaking parents of patients 4 to <18 years who were receiving ALL maintenance oral chemotherapy were eligible to participate in this mixed methods study. Using semi-structured interviews, we asked participants how difficult they found oral chemotherapy administration. We also probed regarding barriers and facilitators of oral chemotherapy administration and strategies used to overcome challenges. Lastly, we asked participants for their advice to future parents giving oral chemotherapy to their children. RESULTS: Twenty-three participants were interviewed. One-fifth of participants stated that oral chemotherapy administration at home was hard or very hard. Common factors influencing oral chemotherapy administration were product-related (e.g., formulation) and treatment-related adverse effects (e.g., nausea), lifestyle adjustment (e.g., fitting in with family schedule), and attitudes (e.g., onus of medication administration). Strategies to address oral chemotherapy administration included several administration techniques, scheduling of medication administration, and normalization of medication taking. CONCLUSIONS: Oral chemotherapy administration during ALL maintenance therapy was hard for some parents. Identification of these parents and discussion of strategies to facilitate adherence to oral chemotherapy regimens may optimize patient outcomes.


Assuntos
Adesão à Medicação , Pais , Leucemia-Linfoma Linfoblástico de Células Precursoras , Adolescente , Criança , Pré-Escolar , Humanos , Administração Oral , Pais/psicologia , Leucemia-Linfoma Linfoblástico de Células Precursoras/tratamento farmacológico , Leucemia-Linfoma Linfoblástico de Células Precursoras/psicologia
8.
Cancer Rep (Hoboken) ; 5(9): e1560, 2022 09.
Artigo em Inglês | MEDLINE | ID: mdl-34596316

RESUMO

BACKGROUND: Recent shifts from radiation to chemotherapy-based treatment for acute lymphoblastic leukemia (ALL) have contributed to reduced long-term morbidity. Despite this, ALL survivors remain at increased risk for long-term cognitive impairments. AIM: To identify demographic and treatment factors associated with school performance in pediatric survivors of ALL. METHODS: We collected standardized test scores for reading, math, and science obtained in a school setting from grades 3-11 in 63 ALL survivors (46.0% boys). Most participants were assessed across multiple grades (median number of grades n = 5, range 1-7), and 269 observations were considered in the analyses. Treatment exposures were extracted from medical records. Socio-economic status was estimated using participation in free/reduced lunch programs at school. Mixed effects linear regression models were conducted to determine factors associated with school performance. RESULTS: ALL survivors' scores were comparable to state norms on reading, math, and science performances. On multivariable analysis, participation in free/reduced lunch programs was significantly associated with lower reading scores (ß = -12.52; 95% CI -22.26:-2.77, p = .01). Exposure to radiation during treatment was also associated with lower reading test scores (ß = -30.81, 95% CI -52.00:-9.62, p = .01). No significant associations between demographics and treatment parameters were observed for math and science test scores. CONCLUSIONS: We utilized population-based achievement tests conducted from grades 3-11 to characterize school performance in ALL survivors. Our results imply that survivors with low socio-economic status and those exposed to radiation during treatment could benefit from early monitoring and intervention to maximize academic success.


Assuntos
Desempenho Acadêmico , Leucemia-Linfoma Linfoblástico de Células Precursoras , Criança , Feminino , Humanos , Masculino , Leucemia-Linfoma Linfoblástico de Células Precursoras/tratamento farmacológico , Leucemia-Linfoma Linfoblástico de Células Precursoras/psicologia , Leitura , Sobreviventes/psicologia
9.
Pain ; 163(6): 1070-1077, 2022 06 01.
Artigo em Inglês | MEDLINE | ID: mdl-34813516

RESUMO

ABSTRACT: Children with acute lymphoblastic leukemia (ALL) often experience treatment-related neurocognitive deficits and significant pain. Pain may exacerbate these cognitive impairments. This study examined neuropathic pain and neurocognitive outcomes in survivors of childhood ALL treated with contemporary therapy on a clinical trial (NCT00137111). There were 345 survivors (45% female, M = 6.9 years at diagnosis) who completed neurocognitive assessments including measures of sustained attention, learning and memory, and parent ratings of attention during at least one of 4 time points: on-therapy (Induction and Reinduction), end of therapy, and 2 years post-therapy. At-risk performance was defined as a score at least 1SD below the age-adjusted mean. Data on neuropathic pain (events, duration, and severity according NCI Common Toxicity Criteria) and pharmacologic pain management (opioids and gabapentin) were ascertained. Results showed that 135 survivors (39%) experienced neuropathic pain during treatment. Compared with those without pain, survivors with pain had greater memory impairments at end of therapy (California Verbal Learning Test [CVLT]-Total, 24% vs 12%, P = 0.046). Within the pain group, survivors who experienced a greater number of pain events (CVLT-Total = -0.88, P = 0.023) and those who were treated with opioids (versus gabapentin) had poorer learning and memory performance (CVLT-Total = -0.73, P = 0.011; Short Delay = -0.57, P = 0.024; Long Delay = -0.62, P = 0.012; and Learning Slope = -0.45, P = 0.042) across time points. These are considered medium-to-large effects (SD = 0.45-0.88). Neuropathic pain may be a risk factor for learning problems after therapy completion, and treatment for pain with opioids may also adversely affect neurocognitive performance. Therefore, patients who experience pain may require closer monitoring and additional intervention for neurocognitive impairment.


Assuntos
Neuralgia , Leucemia-Linfoma Linfoblástico de Células Precursoras , Analgésicos Opioides/efeitos adversos , Criança , Feminino , Gabapentina/uso terapêutico , Humanos , Masculino , Testes Neuropsicológicos , Leucemia-Linfoma Linfoblástico de Células Precursoras/complicações , Leucemia-Linfoma Linfoblástico de Células Precursoras/tratamento farmacológico , Leucemia-Linfoma Linfoblástico de Células Precursoras/psicologia
10.
Turk J Med Sci ; 51(5): 2510-2515, 2021 10 21.
Artigo em Inglês | MEDLINE | ID: mdl-34174789

RESUMO

Background/aim: There are no extensive studies on the QL in children who completed acute lymphoblastic leukemia (ALL) treatment and currently living without any disease in Turkey. Our study aimed to analyze both the QL and the effects of physical, neurocognitive capacities on QL in childhood ALL survivors aged 7­12 years at the time of recruitment. Materials and methods: PedsQL cancer module 3.0 child and proxy report, for ages 5­7 and 8­12 years, WeeFIM scale, BOTMP Short Form, RPM, reading, writing, and mathematics assessment tools, sociodemographic information form were carried out to the children and their family. Results: There was no effect of the months since the completion of therapy on pain, anxiety, cognitive problems, perceived physical appearance, and the total QL scores of children and proxy reports (p > 0.05). Children's physical capacities were significantly worse than healthy controls and have not reached the level of healthy children even after a long time since completion of ALL therapy. There was a significant association between physical capacity and daily independent living status (p < 0.001). Reading, writing, and mathematical skills were significantly associated with the mean time off-treatment (p < 0.001), and the total score of RPM and PedsQL of those with mathematical difficulties were significantly lower than those without any difficulty (p < 0.05). Conclusion: The months after the treatment (off-treatment time) have not affected total and subunit QL scores. As motor skills difficulties will lead to low academic achievement, early recognition direct the parents for immediate intervention. lead to low academic achievement, early recognition could direct the parents for immediate intervention. Planning psychosocial support programs for physical activity and age-appropriate development of patients from the initiation of treatment will increase the QL in childhood ALL with a survival rate of 80% or more.


Assuntos
Exercício Físico , Transtornos Neurocognitivos , Leucemia-Linfoma Linfoblástico de Células Precursoras/psicologia , Qualidade de Vida/psicologia , Atividades Cotidianas , Criança , Escolaridade , Feminino , Humanos , Masculino , Leucemia-Linfoma Linfoblástico de Células Precursoras/complicações , Sobreviventes , Turquia
11.
Pediatr Blood Cancer ; 68(9): e29118, 2021 09.
Artigo em Inglês | MEDLINE | ID: mdl-34019328

RESUMO

BACKGROUND: Survivors of childhood acute lymphoblastic leukemia and lymphoma (ALL/LL) are at risk for cognitive dysfunction, but little is known about its relationship with language proficiency and sociodemographics. PROCEDURE: In this cross-sectional cohort study of Latino survivors of childhood ALL/LL, English and Spanish language proficiency and cognitive and academic functioning were measured and their associations determined using paired t-tests, Pearson correlations, and linear regressions. RESULTS: Participants (N = 57; 50.9% female) had mean ages (years ± SD) of 4.3 ± 2.6 at diagnosis and 10.6 ± 2.9 at testing (range 6-16); mean time post treatment was 3.7 ± 2.6 years. The majority (73.7%) had low socioeconomic status (SES). Most (78.8%) were dual-language learners in English and Spanish. English proficiency was graded as limited-to-fluent and was significantly higher than Spanish (p < .001). Higher SES was correlated with higher English proficiency (r = 0.31, p = .020). Males had higher Spanish proficiency (r = -0.32, p = .034). Controlling for SES and sex, English proficiency accounted for 43% of cognitive functioning variance (F = 14.86, p < .001), 55% of reading comprehension variance (F = 22.14, p < .001), and 21% of mathematics variance (F = 5.76, p = .002). CONCLUSIONS: Low language proficiency correlated with SES but was independently associated with lower cognitive and academic functioning. Research and surveillance for neurocognitive late effects in Latino ALL/LL survivors should incorporate measures of language proficiency and SES to account for their effects on cognitive and academic functioning.


Assuntos
Sobreviventes de Câncer/psicologia , Cognição , Idioma , Leucemia-Linfoma Linfoblástico de Células Precursoras , Adolescente , Criança , Pré-Escolar , Estudos Transversais , Feminino , Hispânico ou Latino , Humanos , Masculino , Leucemia-Linfoma Linfoblástico de Células Precursoras/etiologia , Leucemia-Linfoma Linfoblástico de Células Precursoras/psicologia
12.
Asian Pac J Cancer Prev ; 22(2): 485-490, 2021 Feb 01.
Artigo em Inglês | MEDLINE | ID: mdl-33639664

RESUMO

OBJECTIVE: To analyze the effect of psycho-educational intervention on knowledge of oral hygiene and psychological distress to the parents of children suffering from leukemia. METHODS: Design of this study was a quasi-experimental pre-posttest control group design. The sample were 70 mothers who had children with leukemia (intervention group = 35 mothers; control group = 35 mothers). The independent variable was psycho-educational, while the dependent variables were oral hygiene knowledge and psychological distress. The instruments used were the knowledge questionnaire and the Depression-Anxiety-Stress Scale (DASS-21). Data were analyzed using the Wilcoxon signed rank test and the Mann Whitney U-test with the significance α =0.05. RESULTS: The knowledge most widely known by parents was about how to perform of oral care (37.3%). All parameters of knowledge about oral hygiene have increased after being given a psycho-educational intervention. Psycho-educational interventions had an effect on reducing psychological distress; depression (p=0.000), anxiety (p=0.001) and stress (p=0.000). CONCLUSION: Most parents whose children suffer from cancer experience psychological distress in the form of depression, anxiety and stress with a range of symptoms ranging from mild to moderate. Psycho-educational interventions can increase knowledge about oral hygiene and decrease psychological distress in parents. 
.


Assuntos
Educação em Saúde , Mães/educação , Mães/psicologia , Higiene Bucal/educação , Leucemia-Linfoma Linfoblástico de Células Precursoras/terapia , Angústia Psicológica , Adulto , Criança , Estudos Controlados Antes e Depois , Feminino , Conhecimentos, Atitudes e Prática em Saúde , Humanos , Masculino , Pessoa de Meia-Idade , Leucemia-Linfoma Linfoblástico de Células Precursoras/complicações , Leucemia-Linfoma Linfoblástico de Células Precursoras/psicologia , Fatores Socioeconômicos , Inquéritos e Questionários
13.
Pediatr Blood Cancer ; 68(4): e28913, 2021 04.
Artigo em Inglês | MEDLINE | ID: mdl-33522102

RESUMO

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


Assuntos
Sucesso Acadêmico , Antineoplásicos/uso terapêutico , Dexametasona/uso terapêutico , Metotrexato/uso terapêutico , Leucemia-Linfoma Linfoblástico de Células Precursoras/tratamento farmacológico , Prednisona/uso terapêutico , Adaptação Psicológica , Adolescente , Sobreviventes de Câncer , Criança , Pré-Escolar , Feminino , Humanos , Lactente , Masculino , Leucemia-Linfoma Linfoblástico de Células Precursoras/epidemiologia , Leucemia-Linfoma Linfoblástico de Células Precursoras/psicologia , Resultado do Tratamento
14.
Health Qual Life Outcomes ; 19(1): 55, 2021 Feb 12.
Artigo em Inglês | MEDLINE | ID: mdl-33579311

RESUMO

BACKGROUND: The improvement in treatment of pediatric acute lymphatic leukemia (ALL) has introduced new challenges for pediatric oncology care in understanding and handling long-term treatment-related complications later in adult life. The aim of this study was to describe health related quality of life (HRQoL) and the relation to buffering factors among young adult (YA) pediatric ALL survivors and their siblings. METHODS: This cross-sectional study was performed among 227 adults, treated for pediatric ALL in Sweden between 1985 and 1997 and their siblings (n = 70). Group means of HRQoL (SF-36) were compared between YA ALL survivors and the siblings, as well as to normative values from the general population. Self-efficacy (GSES) and social support (SS-13 subscale AVSI) was considering potential buffering factors for HRQoL and mental health. Associations between HRQoL and mental health respectively and self-efficacy and social support was analyzed. RESULTS: The YA ALL survivors scored significantly lower on the HRQoL parameters general health (69.6 vs. 78.4, p = 0.004) and role emotional (77.1 vs. 88.1, p = 0.014), than the siblings. Further, they reported significantly lower general health (69.6 vs. 75.8), vitality (56.9 vs. 68.8), social functioning (84.5 vs. 88.6), role emotional (77.1 vs. 85.7) and mental health (71.3 vs. 80.9) compared with Swedish norms. Both YA ALL survivors and the siblings reported lower vitality and worse mental health than the general population. The HRQoL parameters, depression, stress and anxiety were all associated with both self-efficacy and social support among the YA ALL survivors. Among the siblings however, only general health, vitality, role emotional, mental health and depression were associated with social support, and only general health and mental health were associated with general self-efficacy. CONCLUSION: The results from this study show that buffering factors, like social support and self-efficacy, may play an important role for psychosocial outcomes and HRQoL among YA ALL survivors later in life. The results suggest that this group could benefit from continuous support in adult life to handle consequences of their pediatric disease.


Assuntos
Sobreviventes de Câncer/psicologia , Leucemia-Linfoma Linfoblástico de Células Precursoras , Qualidade de Vida , Autoeficácia , Apoio Social , Adolescente , Adulto , Criança , Pré-Escolar , Estudos Transversais , Feminino , Nível de Saúde , Humanos , Masculino , Saúde Mental , Leucemia-Linfoma Linfoblástico de Células Precursoras/psicologia , Irmãos/psicologia , Suécia , Adulto Jovem
15.
Artigo em Português | LILACS | ID: biblio-1223281

RESUMO

Objetivo: Comparar as capacidades funcionais e a qualidade de vida entre crianças com leucemia linfoblástica aguda em tratamento com quimioterapia e/ou radioterapia e crianças sem o tratamento, de 4 a 7 anos de idade. Método: Participaram do estudo 50 crianças, sendo 25 em tratamento (grupo experimental) e 25 que já terminaram o tratamento (grupo controle), avaliados por meio do Inventário de Avaliação Pediátrica de Incapacidade (PEDI) e da Escala de Qualidade de Vida da Criança (AUQEI). Resultados: Não houve diferença entre os grupos nos escores brutos do PEDI e na pontuação do AUQEI. Os escores normativos do PEDI apresentaram-se predominantemente abaixo do esperado para a idade em ambos os grupos. A pontuação do AUQEI demonstrou uma qualidade de vida prejudicada no grupo experimental e no controle. Conclusão: Sugere-se que a leucemia linfoblástica aguda e seus tratamentos (quimio e radioterápicos) geram prejuízos funcionais e psicossociais, tanto no momento do tratamento oncológico como após sua conclusão e remissão da doença. É relevante que haja promoção de um acompanhamento longitudinal e multiprofissional da criança com câncer, a fim de minimizar os danos e reinseri-la na comunidade efetivamente.


Assuntos
Humanos , Masculino , Feminino , Pré-Escolar , Criança , Leucemia-Linfoma Linfoblástico de Células Precursoras/tratamento farmacológico , Leucemia-Linfoma Linfoblástico de Células Precursoras/radioterapia , Estudos Transversais , Leucemia-Linfoma Linfoblástico de Células Precursoras/complicações , Leucemia-Linfoma Linfoblástico de Células Precursoras/psicologia , Estado Funcional
16.
Cancer Nurs ; 43(6): 489-497, 2020.
Artigo em Inglês | MEDLINE | ID: mdl-33084295

RESUMO

BACKGROUND: Improved survival rates of acute lymphoblastic leukemia (ALL) in children are often associated with repeated and prolonged hospitalization, creating an immensely stressful situation for the family. OBJECTIVE: The aims of this study were to assess perceived family impact and coping during the child's hospitalization for ALL treatment and identify potential predictors of perceived family impact. INTERVENTIONS/METHODS: A total of 212 families with children hospitalized participated. The hospitalization impact and coping scales were used to assess perceived family impact and coping, respectively. RESULTS: The mean (SD) total score for perceived family impact was 88.11 (22.39); social impact received the highest average score. The mean (SD) total score for family coping was 39.02 (9.84). A significant decrease in family coping was associated with more readmissions. Predictors of perceived family impact were severity of the child's illness, total days of all admissions, and coping, accounting for 37% of the observed variance. CONCLUSIONS: Families were moderately affected by children's hospitalizations; social functioning was most affected. Families' perceived coping effectiveness decreased as the readmissions increased. The higher risk category a child's diagnosis is, the longer a child's hospitalization is, and the less perceived coping effectiveness, the higher family perceived impact. IMPLICATIONS FOR PRACTICE: The findings provide a direction for the development of family-centered supportive intervention programs. Nurses should be aware that the total days of admission and severity of a child's illness are significant factors associated with perceived family impact and likely justify special attention. Family coping enhancement interventions could alleviate perceived family impact.


Assuntos
Adaptação Psicológica , Família/psicologia , Hospitalização , Leucemia-Linfoma Linfoblástico de Células Precursoras/psicologia , Leucemia-Linfoma Linfoblástico de Células Precursoras/terapia , Estresse Psicológico , Adolescente , Adulto , Criança , Pré-Escolar , Estudos Transversais , Feminino , Hong Kong , Hospitais Pediátricos , Humanos , Lactente , Masculino , Fatores Socioeconômicos
17.
Asian Pac J Cancer Prev ; 21(9): 2683-2688, 2020 Sep 01.
Artigo em Inglês | MEDLINE | ID: mdl-32986369

RESUMO

BACKGROUND: Families who have children with Acute Lymphoblastic Leukemia (ALL) are at high risk of experiencing stress. Stress on the family can cause the formation of negative communication in children so that families tend to spend more time in dealing with negative emotions through negative actions. This study aimed to analyze the correlation between stress, anxiety, and depression in caregiver with pediatric ALL outcome. METHODS: A cross sectional study was conducted on children with ALL and their caregivers at the Pediatric Ward, Dr. Soetomo Hospital, Surabaya. Beck Anxiety Inventory (BAI) and Beck Depression Inventory (BDI) questionnaire were used to measure anxiety and depression in caregivers. Previous stressful experiences in children and caregivers were assessed by The Perceived Stress Scale (PSS), Children quality of life was assessed by pediatric quality of life inventory (PedsQL™) questionnaire. Pearson and Spearman correlation strength test was performed for the statistical analysis. RESULTS: There is no significant correlation between stress level of caregivers with the quality of life of children with ALL (P > 0.05). There is negative correlation between the level of anxiety and depression in caregivers with the quality of life of children (P < 0.05). There is negative correlation between children stress level with the quality of life of children (P < 0.05). CONCLUSION: The psychological condition of the caregiver affects the quality of life of children. The higher the level of anxiety and depression in caregivers, the lower the quality of life of children.
.


Assuntos
Ansiedade/epidemiologia , Cuidadores/psicologia , Depressão/epidemiologia , Leucemia-Linfoma Linfoblástico de Células Precursoras/psicologia , Qualidade de Vida , Estresse Psicológico/epidemiologia , Adolescente , Adulto , Criança , Estudos Transversais , Feminino , Seguimentos , Humanos , Indonésia/epidemiologia , Masculino , Pessoa de Meia-Idade , Leucemia-Linfoma Linfoblástico de Células Precursoras/terapia , Prognóstico , Escalas de Graduação Psiquiátrica , Inquéritos e Questionários , Adulto Jovem
18.
Pediatr Blood Cancer ; 67(10): e28419, 2020 10.
Artigo em Inglês | MEDLINE | ID: mdl-32798263

RESUMO

INTRODUCTION: Our objectives were to assess the quality of life (QoL) of parents of childhood leukemia survivors compared with population norms and to identify the determinants of parents' long-term QoL. METHODS: Parents of minors who had survived childhood leukemia participating in the French LEA cohort (Leucémie de l'Enfant et de l'Adolescent-French Childhood Cancer Survivor Study for Leukemia) were asked to complete the French version of the WHOQOL-BREF. Results were compared with age- and sex-matched values from a French reference population. Parents' and survivors' characteristics likely to be associated with QoL, long after the child's leukemia diagnosis, were explored using multivariate analysis. RESULTS: We included 487 parents (mean age 42.9 ± 6.0 years, mean follow-up time from diagnosis 7.3 ± 3.3 years). Compared with the reference population, scores for physical health and social relationships for parents of childhood leukemia survivors were significantly lower (P < 0.001, effect size = 0.24 and P < 0.001, effect size = 0.29, respectively) contrary to scores for psychological health which were significantly higher (P < 0.001, effect size = 0.29). Even if health- and cancer-related characteristics were associated with parents' QoL in some dimensions, the only factor associated with each of the three dimensions (social relationships, physical health, and psychological) in the multivariate analysis was the parent's financial situation. CONCLUSIONS: Long after leukemia diagnosis, the parents reported lower scores in the physical health and social relationship domains. Despite the difficulties of actually influencing socioeconomic characteristics, it is important to consider the social situation of each family in the long-term care of survivors and their families.


Assuntos
Sobreviventes de Câncer/psicologia , Nível de Saúde , Saúde Mental , Pais/psicologia , Leucemia-Linfoma Linfoblástico de Células Precursoras/psicologia , Qualidade de Vida , Adulto , Criança , Feminino , Seguimentos , França , Humanos , Masculino , Leucemia-Linfoma Linfoblástico de Células Precursoras/fisiopatologia , Prognóstico , Estudos Prospectivos , Taxa de Sobrevida
19.
Psychooncology ; 29(10): 1630-1637, 2020 10.
Artigo em Inglês | MEDLINE | ID: mdl-32672854

RESUMO

OBJECTIVE: As survival rates increase, growing numbers of childhood acute lymphoblastic leukemia (ALL) survivors are at risk for somatic and psychosocial late effects. Adolescent and young adult (AYA) survivors represent a distinct and vulnerable group. This study aimed to explore how AYA survivors of childhood ALL experience everyday life after cancer while adjusting to the potential impact of prior disease and treatment. METHODS: Semi-structured interviews were performed with survivors aged 15-22 years. Criterion-based homogenous purposive sampling was used to identify similarities within the group. Data were analyzed using an inductive, thematic approach. RESULTS: Data saturation occurred after 18 interviews. Identified themes included the post-chemo body, negotiating identities, and disruption. More than 80% reported physical or cognitive late effects, but survivors adapted to these and had a positive view on own health. However, a co-existing experience of frailty persisted. Social disruption during treatment had a negative impact on social relations even years following cure. Identity issues revolved around the paradox of seeking recognition for their cancer-related experiences, while also wanting to be treated like everyone else. Some participants aged 18-22 years experienced delayed reactions and a new, but unmet, need to process the past. CONCLUSIONS: AYA survivors of childhood ALL adapt well to their new life situations, but many experience ongoing cancer-related disruptions and experience not being fully understood. We suggest exploration and verbalization of these issues alongside somatic follow-up around the age of 16-18 years to support the AYA survivors during their transition into adulthood.


Assuntos
Sobreviventes de Câncer/psicologia , Leucemia-Linfoma Linfoblástico de Células Precursoras/psicologia , Qualidade de Vida/psicologia , Adaptação Fisiológica , Adolescente , Criança , Feminino , Humanos , Entrevistas como Assunto , Masculino , Leucemia-Linfoma Linfoblástico de Células Precursoras/terapia , Pesquisa Qualitativa , Adulto Jovem
20.
Nutrients ; 12(7)2020 Jul 18.
Artigo em Inglês | MEDLINE | ID: mdl-32708379

RESUMO

There is little information about how diet influences the health of childhood acute lymphoblastic leukemia (cALL) survivors. This study explores the associations between diet quality indices, cardiometabolic health indicators and inflammatory biomarkers among cALL survivors. Participants were part of the PETALE study (n = 241, median age: 21.7 years). Adherence to 6 dietary scores and caloric intake from ultra-processed foods were calculated. Multivariate logistirac regressions, Student t-tests and Mann-Whitney tests were performed. We found that 88% of adults and 46% of children adhered poorly to the Mediterranean diet, 36.9% had poor adherence to the World Health Organisation (WHO) recommendations and 76.3% had a diet to be improved according to the HEI-2015 score. On average, ultra-processed foods accounted for 51% of total energy intake. Low HDL-C was associated with a more inflammatory diet (E-DIITM score) and higher intake of ultra-processed foods. A greater E-DII score was associated with elevated insulin resistance (HOMA-IR), and consumption of ultra-processed foods was correlated with high triglycerides. Circulating levels of TNF-α, adiponectin and IL-6 were influenced by diet quality indices, while CRP and leptin were not. In conclusion, survivors of cALL have poor adherence to dietary recommendations, adversely affecting their cardiometabolic health.


Assuntos
Sobreviventes de Câncer , Fenômenos Fisiológicos da Nutrição Infantil/fisiologia , Dieta Saudável , Ingestão de Energia/fisiologia , Fast Foods/efeitos adversos , Fatores de Risco de Doenças Cardíacas , Cooperação do Paciente , Leucemia-Linfoma Linfoblástico de Células Precursoras , Adolescente , Adulto , Sobreviventes de Câncer/psicologia , Criança , Dieta Mediterrânea , Feminino , Humanos , Interleucina-6/sangue , Masculino , Leucemia-Linfoma Linfoblástico de Células Precursoras/psicologia , Prognóstico , Recomendações Nutricionais , Triglicerídeos/sangue , Fator de Necrose Tumoral alfa/sangue , Adulto Jovem
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