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1.
Pediatr Blood Cancer ; 71(7): e31039, 2024 Jul.
Article in English | MEDLINE | ID: mdl-38689540

ABSTRACT

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


Subject(s)
Neuroblastoma , Opsoclonus-Myoclonus Syndrome , Humans , Opsoclonus-Myoclonus Syndrome/therapy , Opsoclonus-Myoclonus Syndrome/etiology , Male , Female , Neuroblastoma/complications , Neuroblastoma/therapy , Neuroblastoma/mortality , Child, Preschool , Child , Infant , Immunoglobulins, Intravenous/therapeutic use , Follow-Up Studies , Adolescent , Combined Modality Therapy , Prognosis , Adaptation, Psychological , Cognition , Antineoplastic Combined Chemotherapy Protocols/therapeutic use
2.
Pediatr Blood Cancer ; 71(7): e31046, 2024 Jul.
Article in English | MEDLINE | ID: mdl-38679847

ABSTRACT

PURPOSE: Infancy/toddlerhood is a period of rapid development. All infants/toddlers (0-36 months-of-age) undergoing cancer-directed treatment at one hospital are offered developmental assessments and related services. Yet, literature comparing development of infants/toddlers with brain tumors to those with non-CNS solid tumors is sparse. DESIGN AND METHODS: Developmental assessment data were abstracted from electronic health records of infants/toddlers undergoing treatment for a brain tumor (n = 36; mean age = 21.83 ± 9.96 months) or a solid tumor (n = 40; mean age = 17.35 ± 8.50). Z-scores compared obtained data with age expectations. Chi-square analyses assessed whether a greater proportion of participants scored within the clinical range than normative expectations. Multivariate analysis of variance and chi-square analyses compared developmental outcomes between groups. RESULTS: Compared with age expectations, the overall group demonstrated significantly less well-developed skills. Infants/toddlers with solid tumors demonstrated clinical deficits at rates higher than expected for most domains; the rate of impairment for the solid tumor group did not differ significantly from that of the brain tumor group across most subtests. CONCLUSIONS: Like young patients with brain tumors, the developmental functioning of infants/toddlers with solid tumors should be studied across time to determine the trajectory of functioning for these young patients and to inform future developmental intervention studies. PRACTICE IMPLICATIONS: Infants/toddlers with a malignant solid tumor may be at increased risk for delayed development. These very young patients would likely benefit from developmental assessment, early intervention services during and after treatment, and ongoing monitoring of development across time.


Subject(s)
Brain Neoplasms , Humans , Infant , Brain Neoplasms/pathology , Brain Neoplasms/therapy , Male , Female , Child, Preschool , Infant, Newborn , Child Development , Neoplasms/pathology , Neoplasms/therapy , Follow-Up Studies , Developmental Disabilities/etiology , Prognosis
3.
Pediatr Blood Cancer ; 71(2): e30764, 2024 Feb.
Article in English | MEDLINE | ID: mdl-37950459

ABSTRACT

BACKGROUND: Difficulties with social functioning are common among survivors of pediatric brain tumors. Social participation is an understudied measure of social functioning that is associated with emotional health across the lifespan. This paper uses a diary method to assess the social participation of survivors of pediatric brain tumors in middle childhood. PROCEDURE: Survivors of pediatric brain tumors (N = 47; age 10.6 ± 1.4 years; 51.1% male, 89.4% White) who were 5.3 (SD = 2.4, range: 2-9.9) years post therapy completed a daily diary assessment of social interaction (5-7 days) and an objective measure of facial affect recognition. The participant's caregiver completed the NIH Toolbox Emotion Measures and a background information questionnaire. RESULTS: Overall, frequency and quality of reported social interactions were low for survivors, with a large subset of survivors (n = 16, 34%) endorsing fewer than 10 social interactions over the course of a typical school week, and almost half of parents (48.9%) reporting that their child participates in zero social activities outside of school during a typical week. Participants engaged in more positive social participation exhibited stronger social skills (facial affect recognition (F(2,44)  = 4.85, p < .05). CONCLUSIONS: School-aged survivors of pediatric brain tumors seemed to be infrequently engaged in social participation and quality interaction with peers. More specifically, the interactions most commonly reported on the diary assessment are not indicative of friendship development and maintenance. Survivors of pediatric brain tumors would likely benefit from interventions designed to increase quality time spent with peers.


Subject(s)
Brain Neoplasms , Social Participation , Humans , Male , Child , Female , Brain Neoplasms/psychology , Survivors/psychology , Social Adjustment , Schools
4.
J Clin Oncol ; 42(6): 707-716, 2024 Feb 20.
Article in English | MEDLINE | ID: mdl-37967297

ABSTRACT

The diagnosis of cancer during adolescent and young adulthood (AYA) may alter the development and psychological trajectory of survivors across their lifespan. The current review focuses broadly on emotional health, social functioning, health behaviors, and cancer-related cognitive impairment (CRCI) among AYA survivors. Overall, AYA survivors appear to be at elevated risk of emotional distress symptoms, mood and anxiety disorders, suicide, and mental health care service utilization compared with individuals without a cancer history. Difficulties with social relationships and reduced achievement of expected social outcomes including educational attainment and employment have been reported. Despite risk for health-related morbidities, including subsequent neoplasms, many AYA survivors do not engage in health behaviors at the recommended levels for physical activity, diet, or tobacco and alcohol use. Although CRCI has not been comprehensively characterized in this population, subgroups of AYA survivors appear to be at risk for experiencing CRCI, including survivors of central nervous system tumors, Hodgkin lymphoma, testicular, and breast cancer. Across each considered domain of psychological functioning, intervention efforts have largely focused on acceptability and feasibility with an increasing focus on e/mHealth approaches. Future research should include multiphase studies, including randomized controlled trials designed to evaluate intervention efficacy and effectiveness. It is imperative that psychological interventions consider the unique needs of AYA survivors by developmental stage and across multiple levels of influence (patient, support system, institution, and health care system).


Subject(s)
Breast Neoplasms , Cancer Survivors , Cognitive Dysfunction , Neoplasms , Humans , Adolescent , Young Adult , Adult , Female , Cancer Survivors/psychology , Neoplasms/therapy , Neoplasms/psychology , Survivors/psychology , Health Behavior
5.
J Psychosoc Oncol ; : 1-14, 2023 Aug 31.
Article in English | MEDLINE | ID: mdl-37651311

ABSTRACT

PURPOSE: Cancer disrupts the social lives of adolescents and young adults (AYA). Social media may be a resource to engage with social networks, seek entertainment, and receive social support. However, some aspects of social media engagement may be emotionally burdensome and sensitive for AYA to navigate. The aim of this qualitative study was to contextualize the impact of cancer on AYA social media interaction. METHODS: Eight AYA ages 15-21 years and recently diagnosed with cancer participated in a semi-structured interview. AYA were asked about their social media interactions, engagement habits, and online cancer-related disclosure. Interviews averaged 36 min in length and were de-identified and transcribed verbatim and analyzed using thematic analysis. RESULTS: Four salient themes emerged from the data: (1) AYA engage in active and passive social media use depending on the platform, (2) AYA social media habits change due to treatment experiences, (3) AYA evaluate and protect their self-image, privacy, and time, and (4) AYA access social support online and interpret its meaning in different ways. AYA reported using social media, but many altered their frequency and type of interaction after diagnosis. Some were comfortable sharing about cancer and continued to interact actively online; others felt protective and vulnerable, transitioning to media consumption, or withdrawing from use. While social media provided space to receive direct and indirect social support, AYA interpreted the meaning of support in complex ways. CONCLUSIONS: Social media may serve a variety of socio-emotional needs, but not all AYA will benefit from the same types of social media interaction. This study highlights the importance of talking to AYA with cancer about their social media interactions during treatment to better support their coping and adjustment.

6.
Cancer ; 129(19): 3064-3075, 2023 10 01.
Article in English | MEDLINE | ID: mdl-37329245

ABSTRACT

BACKGROUND: Survivors of pediatric central nervous system (CNS) tumors are at risk for neurocognitive and social difficulties throughout childhood. This study characterized social cognition (perception and reasoning from social cues) and adjustment in adulthood. METHODS: A total of 81 adult survivors of pediatric CNS tumors (51% female; mean [SD] age, 28.0 [5.8] years), were recruited across four groups: (1) no radiation therapy (RT) [n = 21], (2) infratentorial (IT) tumors + focal RT [n = 20], (3) IT tumors + craniospinal irradiation [n = 20], and (4) supratentorial tumors + focal RT [n = 20]. Prevalence of social cognitive and adjustment impairments was compared to test norms. Multivariable models examined clinical and neurocognitive predictors of social cognition and its impact on functional outcomes. RESULTS: Survivors demonstrated elevated risk of severe social cognitive impairments (social perception Morbidity Ratio [95% CI] 5.70 [3.46-9.20]), but self-reported few social adjustment problems. Survivors of IT tumors treated with craniospinal irradiation performed nearly 1 SD worse than survivors treated without RT on multiple measures of social cognition (e.g., social perception: ß = -0.89, p = .004). Impaired executive functioning and nonverbal reasoning were associated with worse social cognitive performance (e.g., social perception: ß = -0.75, p < .001; ß = -0.84, p < .001, respectively). Better social perception was associated with higher odds of attaining full-time employment (odds ratio, 1.52 [1.17-1.97]) and at least some college education (odds ratio, 1.39 [1.11-1.74]). CONCLUSIONS: Adult survivors of CNS tumors are at elevated risk of severely impaired social cognition, but do not perceive social adjustment difficulties. Better understanding of potential mechanisms underlying social cognitive deficits may inform intervention targets to promote better functional outcomes for at-risk survivors.


Subject(s)
Central Nervous System Neoplasms , Cognition Disorders , Child , Adult , Humans , Female , Male , Social Cognition , Central Nervous System Neoplasms/radiotherapy , Central Nervous System Neoplasms/epidemiology , Survivors , Social Adjustment , Cognition Disorders/epidemiology , Cognition/physiology
7.
Cancer ; 129(13): 2075-2083, 2023 07 01.
Article in English | MEDLINE | ID: mdl-36943740

ABSTRACT

BACKGROUND: There is limited understanding of associations between a combination of health behaviors (physical activity, sedentary/screen-time, diet) and cardiometabolic health risk factors, physical performance, and emotional health among young (<18) childhood cancer survivors (CCS). The aims of this research were to address this gap by 1) deriving health behavior adherence profiles among CCS, and 2) examining associations among demographic, diagnosis and/or treatment exposures, cardiometabolic, physical performance, and emotional functioning with health behavior profile membership. METHODS: Participants included 397 CCS (≥5 years post-diagnosis; 10-17 years old) enrolled in the St. Jude Lifetime Cohort Study who completed physical health evaluations and questionnaires assessing health behaviors and psychological functioning. Latent profile analysis was used to derive profiles of health behavior adherence. Logistic regression and t-tests were used to examine mean-level differences and associations between profile membership with demographic, diagnosis, treatment exposures, cardiometabolic health, psychological functioning, and physical performance. RESULTS: Two profiles emerged: inactive-unhealthy-diet ("IU") and active-sedentary-unhealthy-diet ("ASU") to guidelines. More participants in IU demonstrated higher resting heart rate (mean [M], 76.54; SD = 12.00) and lower motor proficiency scores (M = 34.73; SD = 29.15) compared to ASU (resting heart rate, M = 71.95, SD = 10.74; motor proficiency, M = 50.40, SD = 31.02). CONCLUSIONS: CCS exhibited low adherence to multiple health behavior guidelines, with adherence patterns differentially associated with cardiometabolic health (i.e., resting heart rate) and physical performance. However, robust protection against all health variables was not observed. Findings suggest interventions designed to improve health outcomes should target multiple health behaviors simultaneously. PLAIN LANGUAGE SUMMARY: Pediatric cancer survivors are at-risk for detrimental health outcomes associated with cancer and treatment. Engagement in healthy lifestyle behaviors serves to reduce health vulnerabilities among adult survivors but less is known about associations with lifestyle behaviors on young survivors. This study documents patterns of lifestyle behaviors among survivors of pediatric cancer, factors that increase susceptibility to nonadherence, and associations among lifestyle behaviors and health indicators.


Subject(s)
Cancer Survivors , Cardiovascular Diseases , Neoplasms , Humans , Child , Adolescent , Cohort Studies , Neoplasms/epidemiology , Neoplasms/therapy , Neoplasms/psychology , Survivors , Health Behavior
8.
Sleep Med ; 103: 123-130, 2023 03.
Article in English | MEDLINE | ID: mdl-36780752

ABSTRACT

OBJECTIVE/BACKGROUND: Retinoblastoma is an ocular cancer diagnosed in early childhood. Previous research has indicated the impact of cancer treatment on sleep, but little is known about how sleep is impacted among survivors of retinoblastoma. The current study aimed to describe sleep habits of school-age survivors of retinoblastoma, to examine associations between sleep and quality of life, and to examine concordance between parent and child reports of sleep habits. PATIENTS/METHODS: Sixty-nine survivors of retinoblastoma (Mage = 10.89, SD = 1.07, 50.7% female; 56.5% unilateral disease) and their caregivers participated, providing information on both self- and parent-reported sleep habits, quality of life, and demographic data. RESULTS: Greater sleep concerns than national norms were reported by parents (bedtime resistance (t(58) = 2.69, p = .009), greater sleep onset delay (t(66) = 2.46, p = .017), shorter sleep duration (t(57) = 2.12, p = .038), increased daytime sleepiness (t(53) = 6.45, p= <.001)) and children (sleep location (t(61) = 2.39, p = .02), restless legs syndrome (t(62) = -2.21, p = .03), parasomnias (t(64) = 19.19, p=<.001)) . Both children and parents of children who received enucleation endorsed greater sleep concerns across several domains (e.g., electronic use before bed, sleep-disordered breathing). Child- and parent-reported sleep concerns were generally associated with decreased quality of life. Finally, child- and parent-report of sleep habits appeared generally consistent. CONCLUSIONS: Survivors of retinoblastoma experience sleep difficulties. As such, assessment and targeted intervention is important to mitigate any effects on quality of life. Future research should examine sleep habits of survivors of retinoblastoma across cultures and developmental periods.


Subject(s)
Retinal Neoplasms , Retinoblastoma , Sleep Wake Disorders , Humans , Child, Preschool , Female , Child , Male , Quality of Life , Surveys and Questionnaires , Sleep , Sleep Wake Disorders/diagnosis , Survivors , Habits
9.
Pediatr Blood Cancer ; 70(2): e29983, 2023 02.
Article in English | MEDLINE | ID: mdl-36385462

ABSTRACT

BACKGROUND: Retinoblastoma is the most common intraocular childhood cancer and is typically diagnosed in young children. With increasing number of survivors and improved medical outcomes, long-term psychosocial impacts need to be explored. Thus, the current study sought to assess functioning in school-aged survivors of retinoblastoma. PROCEDURE: Sixty-nine survivors of retinoblastoma underwent a one-time evaluation of psychosocial functioning. Survivors (Mage = 10.89 years, SD = 1.07 years; 49.3% male; 56.5% unilateral disease) and parents completed measures of quality of life (QoL; PedsQL) and emotional, behavioral, and social functioning (PROMIS [patient-reported outcome measurement information system] Pediatric Profile, BASC-2 parent report). Demographic and medical variables were also obtained. RESULTS: On the whole, both survivors and caregivers indicated QoL and behavioral and emotional health within the typical range of functioning. Survivors reported better physical QoL compared to both parent report and a national healthy comparison sample, whereas caregivers reported that survivors experienced lower social, school, and physical QoL than a healthy comparison. Regarding behavioral and emotional health, survivors indicated more anxiety than a nationally representative sample. Parents of female survivors endorsed lower adaptive scores than parents of male survivors. CONCLUSIONS: Results indicated that survivors of retinoblastoma reported QoL and behavioral and emotional health within normal limits, although parents appear to perceive greater impairment across several assessed domains. Understanding both survivor and parent reports remains important for this population. Future research should explore psychosocial functioning of these survivors as they transition to adolescence and early adulthood, given the increased independence and behavioral and emotional concerns during these developmental periods.


Subject(s)
Retinal Neoplasms , Retinoblastoma , Adolescent , Humans , Male , Child , Female , Child, Preschool , Adult , Retinoblastoma/therapy , Retinoblastoma/psychology , Quality of Life/psychology , Survivors/psychology , Health Status , Retinal Neoplasms/psychology , Surveys and Questionnaires
10.
J Pediatr Hematol Oncol ; 44(8): 462-464, 2022 11 01.
Article in English | MEDLINE | ID: mdl-36301047

ABSTRACT

Socialization with peers is essential for development yet reduced when children and adolescents are undergoing cancer treatment. Providing opportunity for social experiences is a key role for providers working in the pediatric oncology setting. Traditional in-person socialization activities were significantly impacted by coronavirus disease-2019 restrictions, and psychosocial providers were forced to adapt their practice. This case series illustrates four unique scenarios that highlight virtual social interactions as both feasible and beneficial. While virtual socialization groups were intended to be temporary, the experiences described suggest that ongoing video-based options for some socialization activities are likely prudent for some pediatric populations.


Subject(s)
COVID-19 , Neoplasms , Child , Adolescent , Humans , Socialization , Pandemics , Peer Group , Neoplasms/psychology
11.
J Pediatr Psychol ; 47(8): 929-938, 2022 08 12.
Article in English | MEDLINE | ID: mdl-35286389

ABSTRACT

OBJECTIVES: Psychosocial late effects among survivors of pediatric brain tumors are common. For school-aged survivors, social skills deficits and isolation present a particular challenge. Social problem-solving is a social skill that is an important determinant of social outcomes and may yield a potential target for intervention. METHODS: School-aged youth (N = 65) 8-12 years of age (10.59 ± 1.36 years; 55.4% female, 86.2% white) who were 5.23 (SD = 2.44, range 2-10.9) years post-treatment for a brain tumor completed the Attributions and Coping Questionnaire, a measure of social problem-solving that uses vignettes to assess attribution of intent, subsequent emotional response, and imagined behavioral response to an interpersonal problem. Youth also completed self-reports of social functioning (PROMIS Peer Relationships, Self-Perception Profile). A caregiver completed additional measures of child social functioning (NIH Toolbox-Emotion Measures). RESULTS: Survivors attributed unpleasant situations to accidental causes (neutral attribution) and responded in ways that prioritized the friendship (appeasement) or relied on adult intervention. Self-reported social functioning was higher among those who were less likely to avoid challenging social problem-solving situations. CONCLUSIONS: Findings identified characteristic social problem-solving approaches among survivors, including a tendency to attribute ambiguous situations to accidental causes and to request adult assistance and/or maintain social relationships. This may indicate a possible avenue for intervention, with a focus on increasing survivors' understanding of the causes of potentially negative peer interactions and reducing their reliance on adults.


Subject(s)
Brain Neoplasms , Survivors , Adaptation, Psychological , Adolescent , Adult , Brain Neoplasms/psychology , Caregivers/psychology , Child , Child, Preschool , Female , Humans , Male , Problem Solving , Survivors/psychology
12.
Assessment ; 29(7): 1522-1531, 2022 10.
Article in English | MEDLINE | ID: mdl-34105383

ABSTRACT

The Social and Emotional Assets and Resilience Scale (SEARS) is a promising instrument for prediction of resilience in youth; however, there is limited data to support its use. The purpose of the current study was to examine the factor structure, measurement invariance, internal consistency, and validity of the SEARS-Adolescent Report in youth 8 to 20 years of age. Two hundred and twenty-five childhood cancer survivors (Mage = 15.9, SD = 4.2; 51.4% male; 74.5% White) and 122 student controls without history of significant health problems (Mage = 14.2, SD = 3.5; 54.1% female; 79.5% White) 8 to 20 years of age completed the SEARS-A. The SEARS-A was found to have an adequate factor structure and model fit (χ2 = 1215.5, p < .001; root mean square error of approximation = .057; comparative fit index = .95; standardized root mean square residual = .06) and demonstrated invariance across domains of age, health status, gender, race, and socioeconomic status (Δ comparative fit index < -0.01). It also demonstrated excellent internal reliability, criterion validity, and current validity when compared with another well-established measure of psychological adjustment. As such, the SEARS-A has potential to be a useful, valid, and psychometrically sound tool for predicting social-emotional adjustment outcomes among at-risk youth 8 to 20 years of age.


Subject(s)
Emotions , Adolescent , Child , Factor Analysis, Statistical , Female , Humans , Male , Psychometrics , Reproducibility of Results , Surveys and Questionnaires
13.
J Cancer Surviv ; 16(2): 329-337, 2022 04.
Article in English | MEDLINE | ID: mdl-33733380

ABSTRACT

OBJECTIVE: The primary aims of this research were to examine substance use among adolescent and young adult survivors of pediatric cancer (AYA survivors) and AYA without a history of chronic or life threatening illness (AYA comparisons) and to explore links between demographic, medical, caregiver-AYA, and family system factors with AYA substance use patterns. METHODS: Participants included 289 AYA (survivors, n = 171; comparisons = 118; 51% female; Mage = 17.15, SDage = 2.86) and their caregivers (Mage = 46.54, SDage = 6.81; 88% mothers). AYA and caregivers completed the family environment scale, and caregivers completed the parenting relationship questionnaire at the initial assessment. Two years later, AYA completed an assessment of substance use. Chi-square and frequency analyses were used to compare differences in substance use among AYA survivors and comparisons. Multivariate analysis of variance was used to examine links between AYA substance use patterns with family and caregiver-AYA system level factors. RESULTS: Patterns of substance use did not differ between AYA survivors and comparisons. AYA survivors were more likely to report polysubstance use if caregivers endorsed problematic caregiver-AYA relationship patterns. Family functioning and caregiver relationship patterns did not predict AYA comparison substance use. CONCLUSION: AYA survivors were just as likely as AYA comparisons to engage in substance use, increasing their vulnerability to problematic health outcomes. Findings indicate that the role caregiver-AYA relationship patterns may have on youth at risk for substance use and potential mechanisms for future intervention.


Subject(s)
Cancer Survivors , Neoplasms , Substance-Related Disorders , Adolescent , Child , Child, Preschool , Female , Humans , Male , Middle Aged , Parent-Child Relations , Substance-Related Disorders/epidemiology , Survivors , Young Adult
14.
J Clin Oncol ; 39(24): 2676-2684, 2021 08 20.
Article in English | MEDLINE | ID: mdl-33891476

ABSTRACT

PURPOSE: To describe the trajectory of cognitive and adaptive functioning in pediatric patients with retinoblastoma from diagnosis through age 10. This is an extension of a previous report that discussed findings from diagnosis through age 5. PATIENTS AND METHODS: Ninety-eight participants with retinoblastoma completed psychological assessments as part of their enrollment on an institutional treatment protocol, with 73 completing an additional assessment at age 10. Trajectories of adaptive and cognitive functioning were determined, with data analyzed by treatment strata, and patients with 13q- analyzed separately. RESULTS: Longitudinal trajectories identified a significant change point in trends at age 5, with functioning declining from diagnosis through age 5 and then increasing from age 5 to age 10. This pattern was observed for all strata for adaptive functioning, but only for enucleation-only patients (strata C low) for cognitive functioning. Cognitive trajectories were also influenced by laterality and enucleation status. At age 10, overall functioning was generally within the average range, although estimated intelligence quotient was significantly below the normative mean for enucleation-only (C low) patients. Patients with 13q- demonstrated very low functioning, but few analyses were significant because of small sample size. CONCLUSION: The results generally indicate that previously demonstrated declines in functioning from diagnosis through age 5 improve by age 10. However, these early declines, as well as the continuous difficulties observed in patients treated with enucleation only, suggest the need for early intervention services for young patients with retinoblastoma. Continuous monitoring of the psychological functioning of patients with retinoblastoma, increased awareness of risk factors such as unilateral disease, enucleation, race, and surgery-only treatment plans, and referral to Early Intervention for all patients are indicated.


Subject(s)
Cognition/physiology , Intelligence Tests/standards , Retinoblastoma/epidemiology , Child , Child, Preschool , Female , Humans , Infant , Infant, Newborn , Longitudinal Studies , Male
15.
J Pediatr Psychol ; 46(7): 790-800, 2021 08 11.
Article in English | MEDLINE | ID: mdl-33682007

ABSTRACT

OBJECTIVES: The preschool years (ages 4-6) are essential for the development of social-emotional skills, such as problem solving, emotion regulation, and conflict resolution. For children with cancer treated during this period, especially those with brain tumors, there are questions regarding the consequences of missed normative social experiences. The objective of this pilot study was to explore the social-emotional functioning of young children with brain tumors, as compared to those with non-CNS solid tumors, who have recently completed treatment. METHODS: Children with brain (n = 23) or solid tumors (n = 20) 4-6 years of age (5.42 ± 0.73 years; 60.5% male, 65.1% white) who were 8.21 (SD = 2.42) months post-treatment completed objective measures (Challenging Situations Task, NEPSY-II) of social functioning while a caregiver completed questionnaires (e.g., BASC-3, NIH Toolbox Emotion Measures). RESULTS: A large portion of the sample (brain tumor: 65.2%, solid tumor: 44.4%) fell in the clinical range on parent-report measures of peer interaction. There were no statistically significant differences between patient groups across measures, but effect sizes suggest youth with brain tumors potentially experienced more difficulties on some indices. All children were more likely to choose prosocial responses when presented with a challenging social situation where they were physically provoked (e.g., hit) versus socially provoked (e.g., left out). CONCLUSIONS: Preschool-aged children with cancer may experience weaknesses in social functioning shortly after treatment, with youth with brain tumors potentially demonstrating greater concerns. Emphasizing social interaction is critical to ensure young children have the opportunity to develop critical social-emotional skills.


Subject(s)
Brain Neoplasms , Emotions , Adolescent , Brain , Child , Child, Preschool , Female , Humans , Male , Pilot Projects , Social Adjustment
16.
J Pediatr Oncol Nurs ; 38(4): 225-232, 2021.
Article in English | MEDLINE | ID: mdl-33729902

ABSTRACT

Background: Adolescents and young adults (AYAs) with cancer use social media in unique ways throughout treatment. The purpose of this article is to describe the social media experiences of AYAs with cancer as a means of exploring the potential impact of social media on AYA psychosocial development after diagnosis and throughout cancer treatment. Methods: Seven AYAs treated for cancer, aged 15-20 years, completed a semi-structured interview regarding their social media preferences and habits. Each interview was transcribed verbatim and de-identified. Data were coded and themes were identified via latent thematic analysis. Results: Four themes emerged regarding social media experiences for AYAs with cancer: (1) changes in audience and feedback after diagnosis; (2) attitudes about body image and peer support; (3) control over personal, familial, and societal messages about illness; and (4) maintaining normalcy despite hospital stressors. Discussion: Social media appear especially useful for promoting social and identity development as AYAs undergo cancer treatment. Specifically, social media provide spaces to negotiate body image and sense of self, to manage peer relationships, to reclaim control and independence, and to maintain normalcy. Understanding these experiences will prepare healthcare providers and caregivers to assess ongoing psychosocial development and adjustment throughout cancer treatment.


Subject(s)
Neoplasms , Social Media , Adolescent , Body Image , Caregivers , Humans , Neoplasms/therapy , Peer Group , Young Adult
17.
Pediatr Blood Cancer ; 68(4): e28913, 2021 04.
Article in English | MEDLINE | ID: mdl-33522102

ABSTRACT

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.


Subject(s)
Academic Success , Antineoplastic Agents/therapeutic use , Dexamethasone/therapeutic use , Methotrexate/therapeutic use , Precursor Cell Lymphoblastic Leukemia-Lymphoma/drug therapy , Prednisone/therapeutic use , Adaptation, Psychological , Adolescent , Cancer Survivors , Child , Child, Preschool , Female , Humans , Infant , Male , Precursor Cell Lymphoblastic Leukemia-Lymphoma/epidemiology , Precursor Cell Lymphoblastic Leukemia-Lymphoma/psychology , Treatment Outcome
18.
J Pediatr Psychol ; 46(4): 433-442, 2021 04 16.
Article in English | MEDLINE | ID: mdl-33355354

ABSTRACT

OBJECTIVE: One of the peak incidences of childhood cancer is during the early childhood years. This is also an important time for psychosocial and personality development, and it is well known that early childhood temperament influences later psychosocial functioning. However, this association has not been examined in young children with cancer. METHODS: Parents of children with cancer (N = 39) and healthy comparisons (N = 35) completed an indicator of temperament (Children's Behavior Questionnaire) when children were young (Mage=4.99 ± 1.05 years). Five years later, parents and youth completed measures of psychosocial functioning (Mage=10.15 ± 1.10 years; Behavior Assessment Scale for Children, 2nd edition and Social Emotional Assets and Resilience Scale). RESULTS: Parents of healthy comparisons reported that their children demonstrated greater surgency than youth with cancer; there were no differences in negative affect or effortful control. Children with cancer and healthy comparisons were rated similarly on measures of psychosocial functioning. Health status was not a significant predictor of later functioning, but socioeconomic status and temperament were. The influence of temperament was stronger for strengths-based functioning (e.g., social competence, adaptive functioning) versus distress (internalizing and externalizing problems). CONCLUSIONS: Early childhood temperament is a strong predictor of later psychosocial functioning, regardless of health status. Findings highlight the need to consider temperament in the clinical assessment of psychosocial functioning in children with cancer. Additional research is needed to specifically assess how a diagnosis of cancer in early childhood influences temperament over time.


Subject(s)
Neoplasms , Temperament , Adolescent , Child , Child, Preschool , Emotions , Humans , Parents , Social Adjustment
19.
J Sex Med ; 17(10): 1981-1994, 2020 10.
Article in English | MEDLINE | ID: mdl-32723681

ABSTRACT

INTRODUCTION: There is a growing population of childhood cancer survivors at risk for adverse outcomes, including sexual dysfunction. AIM: To estimate the prevalence of and risk factors for sexual dysfunction among adult female survivors of childhood cancer and evaluate associations between dysfunction and psychological symptoms/quality of life (QOL). METHODS: Female survivors (N = 936, mean 7.8 ± 5.6 years at diagnosis; 31 ± 7.8 years at evaluation) and noncancer controls (N = 122) participating in the St. Jude Lifetime Cohort Study completed clinical evaluations, Sexual Functioning Questionnaires (SFQ), and Medical Outcomes Survey Short Forms 36 (SF-36). Linear models compared SFQ scores between sexually active survivors (N = 712) and controls; survivors with scores <10th percentile of controls were classified with sexual dysfunction. Logistic regression evaluated associations between survivor characteristics and sexual dysfunction, and between sexual dysfunction and QOL. OUTCOMES: Sexual dysfunction was defined by scores <10th percentile of noncancer controls on the SFQ overall, as well as the domains of arousal, interest, orgasm, and physical problems, while QOL was measured by scores on the SF-36 with both physical and mental summary scales. RESULTS: Sexual dysfunction was prevalent among 19.9% (95% CI 17.1, 23.1) of survivors. Those diagnosed with germ cell tumors (OR = 8.82, 95% CI 3.17, 24.50), renal tumors (OR = 4.49, 95% CI 1.89, 10.67), or leukemia (OR = 3.09, 95% CI 1.50, 6.38) were at greater risk compared to controls. Age at follow-up (45-54 vs 18-24 years; OR = 5.72, 95% CI 1.87, 17.49), pelvic surgery (OR = 2.03, 95% CI 1.18, 3.50), and depression (OR = 1.96, 95% CI 1.10, 3.51) were associated with sexual dysfunction. Hypogonadism receiving hormone replacement (vs nonmenopausal/nonhypogonadal; OR = 3.31, 95% CI 1.53, 7.15) represented an additional risk factor in the physical problems (eg, vaginal pain and dryness) subscale. Survivors with sexual dysfunction, compared to those without sexual dysfunction, were more likely to score <40 on the physical (21.1% vs 12.7%, P = .01) and mental health (36.5% vs 18.2%, P < .01) summary scales of the SF-36. Only 2.9% of survivors with sexual dysfunction reported receiving intervention. CLINICAL IMPLICATIONS: Health care providers should be aware of the increased risk of sexual dysfunction in this growing population, inquire about symptomology, and refer for appropriate intervention. STRENGTHS & LIMITATIONS: Strengths of this study include the use of a validated tool for evaluating sexual function in a large population of clinically assessed female childhood cancer survivors. Limitations include potential for selection bias, and lack of clinically confirmed dysfunction. CONCLUSION: Sexual dysfunction is prevalent among female childhood cancer survivors and few survivors receive intervention; further research is needed to determine if those with sexual dysfunction would benefit from targeted interventions. Bjornard KL, Howell CR, Klosky JL, et al. Psychosexual Functioning of Female Childhood Cancer Survivors: A Report From the St. Jude Lifetime Cohort Study. J Sex Med 2020;17:1981-1994.


Subject(s)
Cancer Survivors , Neoplasms , Sexual Dysfunctions, Psychological , Adult , Cancer Survivors/psychology , Child , Cohort Studies , Female , Humans , Quality of Life , Sexual Dysfunctions, Psychological/etiology , Survivors
20.
Psychooncology ; 29(8): 1288-1295, 2020 08.
Article in English | MEDLINE | ID: mdl-32419288

ABSTRACT

OBJECTIVES: Social interaction and peer relationships are critical for development, especially for adolescents and young adults (AYA). Cancer treatment may disrupt social functioning and impact quality of life. Prior research into AYA social functioning has primarily been qualitative in nature or assessed via broad measures of functioning. Given the multi-dimensional nature of social functioning, and its importance for AYA, a person-centered approach to analyses is needed. METHODS: AYA survivors of childhood cancer, ages 13 to 23 (n = 192, 51% male) and at least 1 year post-treatment (M = 7.35 ± 4.18 years post), completed measures to assess perceived social functioning, social support, and positive and negative affect. Caregivers also completed a measure of social functioning. Latent profile analysis was used to empirically derive profiles of perceived social functioning using the self-perception profile for adolescents (SPPA). RESULTS: A 3-class solution provided the best fit to the data: 58.9% average, 33.7% high, and 7.5% low functioning. The average group reported mean scores that were similar to normative values available in the SPPA manual. Demographic and medical factors were unrelated to class membership. Social support and positive/negative affect differed significantly by class; caregiver-report of social functioning did not. CONCLUSIONS: Overall, the majority of AYA survivors of childhood cancer are doing well socially, with perceived adequate social functioning associated with both high levels of social support as well as greater perceptions of positive affect. Future work is needed to elucidate longitudinal trajectories of social functioning, as well as to identify and intervene with those survivors who are struggling.


Subject(s)
Cancer Survivors/psychology , Quality of Life/psychology , Social Adjustment , Social Interaction , Adaptation, Psychological , Adolescent , Caregivers/psychology , Female , Humans , Male , Neoplasms/psychology , Social Support , Socioeconomic Factors , Stress, Psychological/psychology , Young Adult
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