Returning research results: caregivers’ reactions following computerized cognitive training among childhood cancer survivors

Abstract Background Few researchers routinely disseminate results to participants; however, there is increasing acknowledgment that benefits of returning results outweigh potential risks. Our objective was to determine whether use of specific guidelines developed by the Children’s Oncology Group (COG) when preparing a lay summary would aid in understanding results. Specifically, to determine if caregivers of childhood cancer survivors found a lay summary comprehensive, easy to understand, and helpful following participation in a computerized cognitive training program. Methods In a previous study, 68 childhood survivors of acute lymphoblastic leukemia or brain tumor with identified cognitive deficits were randomly assigned to participate in a computerized cognitive intervention or assigned to a wait list. Following conclusion of this study, participants’ caregivers were contacted and provided with a summary of results based on COG guidelines and survey. Forty-three participants returned the surveys, examining caregivers’ interpretation of the summary, reaction to the results, and information regarding preference for receiving results. Results Caregivers reported results as important (93%), helpful (93%), easy to understand (98%), and relevant to their child (91%). They interpreted the results as generally positive, with many caregivers endorsing satisfaction (84%); however, concern of long-term implications was expressed (25%). Most preferred receiving results through postal letter (88%) or email (47%). Conclusions Benefits of returning research results to families appear to outweigh potential negative consequences. Returning results may help inform families when making future health care-related decisions. There is a great need to develop and assess the utility of guidelines for returning research results.

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Social Functioning of Childhood Cancer Survivors after Computerized Cognitive Training: A Randomized Controlled Trial

Children ◽

10.3390/children6100105 ◽

2019 ◽

Vol 6 (10) ◽

pp. 105

Author(s):

Leanne K. Mendoza ◽

Jason M. Ashford ◽

Victoria W. Willard ◽

Kellie N. Clark ◽

Karen Martin-Elbahesh ◽

...

Keyword(s):

Cancer Survivors ◽

Childhood Cancer ◽

Social Functioning ◽

Cognitive Training ◽

Childhood Cancer Survivors ◽

Cognitive Intervention ◽

Control Group ◽

Post Intervention ◽

Computerized Cognitive Training ◽

Study Results

Childhood cancer survivors are at risk for cognitive and social deficits. Previous findings indicate computerized cognitive training can result in an improvement of cognitive skills. The current objective was to investigate whether these cognitive gains generalize to social functioning benefits. Sixty-eight survivors of childhood cancer were randomly assigned to a computerized cognitive intervention (mean age 12.21 ± 2.47 years, 4.97 ± 3.02 years off-treatment) or waitlist control group (mean age 11.82 ± 2.42 years, 5.04 ± 2.41 years off-treatment). Conners 3 Parent and Self-Report forms were completed pre-intervention, immediately post-intervention and six-months post-intervention. Piecewise linear mixed-effects models indicated no significant differences in Peer Relations between groups at baseline and no difference in change between groups from pre- to immediate post-intervention or post- to six-months post-intervention (ps > 0.40). Baseline Family Relations problems were significantly elevated in the control group relative to the intervention group (p < 0.01), with a significantly greater decline from pre- to immediate post-intervention (p < 0.05) and no difference in change between groups from post- to six-months post-intervention (p > 0.80). The study results suggest cognitive gains from computerized training do not generalize to social functioning. Training focused on skill-based social processing (e.g., affect recognition) may be more efficacious.

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Predicting and Preventing Anthracycline-Related Cardiotoxicity

American Society of Clinical Oncology Educational Book ◽

10.1200/edbk_100015 ◽

2018 ◽

pp. 3-12 ◽

Cited By ~ 21

Author(s):

Saro Armenian ◽

Smita Bhatia

Keyword(s):

Heart Failure ◽

Congestive Heart Failure ◽

Cancer Survivors ◽

Childhood Cancer ◽

Prediction Models ◽

Lymphoblastic Leukemia ◽

Childhood Cancer Survivors ◽

Chemotherapeutic Agents ◽

Increased Risk ◽

Risk Reducing

Anthracyclines (doxorubicin, daunorubicin, epirubicin, and idarubicin) are among the most potent chemotherapeutic agents and have truly revolutionized the management of childhood cancer. They form the backbone of chemotherapy regimens used to treat childhood acute lymphoblastic leukemia, acute myeloid leukemia, Hodgkin lymphoma, Ewing sarcoma, osteosarcoma, and neuroblastoma. More than 50% of children with cancer are treated with anthracyclines. The clinical utility of anthracyclines is compromised by dose-dependent cardiotoxicity, manifesting initially as asymptomatic cardiac dysfunction and evolving irreversibly to congestive heart failure. Childhood cancer survivors are at a five- to 15-fold increased risk for congestive heart failure compared with the general population. Once diagnosed with congestive heart failure, the 5-year survival rate is less than 50%. Prediction models have been developed for childhood cancer survivors (i.e., after exposure to anthracyclines) to identify those at increased risk for cardiotoxicity. Studies are currently under way to test risk-reducing strategies. There remains a critical need to identify patients with childhood cancer at diagnosis (i.e., prior to anthracycline exposure) such that noncardiotoxic therapies can be contemplated.

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Computerized intervention for amelioration of cognitive late effects among childhood cancer survivors.

Journal of Clinical Oncology ◽

10.1200/jco.2013.31.15_suppl.10034 ◽

2013 ◽

Vol 31 (15_suppl) ◽

pp. 10034-10034

Author(s):

Heather M. Conklin ◽

Jason M. Ashford ◽

Kellie N. Clark ◽

Karen Martin-Elbahesh ◽

Kristina K. Hardy ◽

...

Keyword(s):

Cancer Survivors ◽

Childhood Cancer ◽

Rating Scale ◽

Lymphoblastic Leukemia ◽

Childhood Cancer Survivors ◽

Control Group ◽

Parent Rating ◽

Spatial Span ◽

Computerized Intervention ◽

Study Results

10034 Background: Children treated for cancer with CNS-directed therapy are at significant risk for attention and working memory (WM) problems. There is empirical support for pharmacotherapy and therapist-delivered cognitive rehabilitation; yet, the reach of these approaches is limited by medical contraindications, need for facility proximity and high resource utilization. A computer-based WM intervention has demonstrated efficacy for healthy individuals with attention disorders. We investigated this approach with childhood cancer survivors. Methods: Sixty-eight survivors of childhood acute lymphoblastic leukemia (ALL) or brain tumor (BT) with identified WM deficits were randomly assigned to a computerized WM intervention (18 males/16 females, 23 ALL/11 BT, age= 12.21±2.47) or a wait-list control group (18 males/16 females, 24 ALL/10 BT, age= 11.82±2.42). Participants in the intervention group were asked to complete 25 training sessions at home with weekly, phone-based coaching support. Cognitive assessments were completed pre- and post-intervention. Results: Among 34 participants randomized to intervention, 30 (88%) were adherent while 4 were removed from intervention because they failed to complete training in the allotted time. Survivors who completed the intervention demonstrated significantly greater improvements than controls on measures of attention (e.g., WISC-IV Spatial Span Forward 3.30±3.87 vs 1.33±2.20, p= .02, ES= .63), WM (e.g., WISC-IV Spatial Span Backward 3.13±3.19 vs 0.80±2.46, p= .002, ES= .82) and processing speed (e.g., Conners’ CPT Hit Reaction Time -2.10±8.04 vs 2.36±6.68, p= .02, ES=.60), and showed greater reductions in parent reported executive dysfunction (e.g., Conners’ Parent Rating Scale, III -6.73±8.25 vs .13±8.86, p= .003, ES= .80). No group differences in academic fluency were found (e.g., Woodcock Johnson III Math Fluency 0.90±4.59 vs 1.90±7.18, p= .52, ES= .17). Conclusions: Study results suggest computerized intervention is feasible and efficacious for childhood cancer survivors, with some evidence for generalized benefits. Computerized training may offer a safer, less time intensive and more portable alternative to existing interventions. Clinical trial information: NCT01217996.

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Feasibility and acceptability of a remotely administered computerized intervention to address cognitive late effects among childhood cancer survivors

Neuro-Oncology Practice ◽

10.1093/nop/npu036 ◽

2015 ◽

Vol 2 (2) ◽

pp. 78-87 ◽

Cited By ~ 13

Author(s):

Lauren E. Cox ◽

Jason M. Ashford ◽

Kellie N. Clark ◽

Karen Martin-Elbahesh ◽

Kristina K. Hardy ◽

...

Keyword(s):

Cancer Survivors ◽

Childhood Cancer ◽

Lymphoblastic Leukemia ◽

Childhood Cancer Survivors ◽

Pediatric Cancer Survivors ◽

Computerized Intervention ◽

Close Proximity ◽

Treatment Medication ◽

Almost All ◽

At Home

Abstract Background Childhood cancer survivors frequently develop working memory (WM) deficits as a result of disease and treatment. Medication-based and therapist-delivered interventions are promising but have limitations. Computerized interventions completed at home may be more appealing for survivors. We evaluated the feasibility and acceptability of a remotely administered, computerized WM intervention (Cogmed) for pediatric cancer survivors using a single-blind, randomized, wait-list control design. Methods Of 80 qualifying patients, 12 were excluded or declined to participate. Participants randomized to intervention (n = 34/68) included survivors of childhood brain tumors (32%) or acute lymphoblastic leukemia (ALL; 68%) between the ages of 8 and 16 years (x¯ = 12.2) who were at least 1 year post therapy (x¯ = 5.0). The majority of brain tumor participants were treated with cranial radiation therapy (72.7%), whereas most of the ALL participants were treated with chemotherapy only (87%). Participants completed 25 WM training sessions over 5–9 weeks at home with weekly phone-based coaching. Results Participants lived in 16 states. Compliance was strong, with 30 of the 34 participants (88%) completing intervention. Almost all participants completed pre- and postintervention neuroimaging exams (91% and 93%, respectively). Families had the necessary skills to utilize the computer program successfully. Caregivers reported they were generally able to find time to complete training (63%), viewed training as beneficial (70%), and would recommend this intervention to others (93%). Conclusions Cogmed is a feasible and acceptable intervention for childhood cancer survivors. It is a viable option for survivors who do not live in close proximity to cancer care centers. Efficacy and neural correlates of change are currently being evaluated.

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Substance use by an adolescent with a history of childhood cancer: the role of counseling in risk management

Developmental and Adolescent Health ◽

10.54088/k87djd ◽

2021 ◽

Author(s):

Filippos Papazis ◽

Flora Bacopoulou

Keyword(s):

Substance Use ◽

Cancer Survivors ◽

Childhood Cancer ◽

Mental Health Professionals ◽

Lymphoblastic Leukemia ◽

Childhood Cancer Survivors ◽

Adolescent Male ◽

History Of Childhood ◽

Counseling Intervention ◽

History Of

Background: Childhood cancer survivors may have a tendency to risk-taking. Adolescents with a history of childhood cancer experience psychological and neurocognitive long-term effects that also impact negatively their social life. Adolescents are exposed to many risk factors in order to be socially accepted, such as drug use, alcohol use, as well as provocative behavior at school and in the wider social environment. Therefore, the counseling process is vital, to cope with the negative effects of the disease and ensure a positive adjustment in adulthood. Case Report: The present case study is focused on an adolescent male with a history of childhood cancer (acute lymphoblastic leukemia) who suffered cognitive effects on his memory that resulted in poor school performance and stress and reported cannabis use. The counseling intervention was based on the combination of cognitive-behavioral and systemic approach, and family counseling, with the aim to enhance the adolescent’s socialization through psychosocial interventions. The duration of the counseling was seventeen sessions. The results of the intervention showed that the initial goal of the student was achieved, i.e. to socialize with his peers and to give up substance use. At the same time, the adolescent discovered many hidden aspects of himself, learned to trust, to communicate without fear and shame, to set limits in the relationships with his family and to claim his rights. The psychological, emotional and moral support of childhood cancer survivors by mental health professionals is important, even years after treatment, to ensure adolescent smooth personal development and social integration.

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Dexrazoxane and heart function among long-term childhood cancer survivors: A Children’s Oncology Group study.

Journal of Clinical Oncology ◽

10.1200/jco.2020.38.15_suppl.10513 ◽

2020 ◽

Vol 38 (15_suppl) ◽

pp. 10513-10513

Author(s):

Eric Jessen Chow ◽

Sanjeev Aggarwal ◽

David R Doody ◽

Richard Aplenc ◽

Saro Armenian ◽

...

Keyword(s):

Cancer Survivors ◽

Childhood Cancer ◽

Cancer Diagnosis ◽

Heart Function ◽

Lymphoblastic Leukemia ◽

Childhood Cancer Survivors ◽

Left Ventricular ◽

Lv Function ◽

Cardioprotective Effects

10513 Background: Dexrazoxane (DRZ) has cardioprotective effects among doxorubicin (DOX) treated childhood cancer survivors up to 5 years after therapy. However, longer-term data are lacking. Methods: P9404, P9425, P9426, and DFCI 95-01 were randomized trials of acute lymphoblastic leukemia and Hodgkin lymphoma, where patients were randomly assigned to DOX±DRZ. P9754 enrolled osteosarcoma patients who all received DOX+DRZ. In all studies, DRZ was given as an intravenous bolus before DOX (10:1mg ratio). DOX doses ranged from 100-600 mg/m2 across these 5 trials. A subset of COG institutions prospectively assessed cardiac function in long-term survivors from these trials, plus a matched group of osteosarcoma survivors treated with DOX alone. Echocardiograms (left ventricular [LV] Biplane ejection fraction [EF], shortening fraction [SF]) and blood biomarkers (b-type natriuretic peptides [BNP], N-terminal [NT] proBNP) were all analyzed centrally, with DRZ status masked. Lower LV function was defined as EF<50% or SF<30%. T-test, rank-sum, and multivariate regression adjusted for sex, cancer diagnosis age, current age, DOX dose, and chest radiotherapy were used to examine differences and associations by DRZ status. Results: Among 173 participants assessed (52% DRZ+; 54% male; mean DOX 294±96 mg/m2) 17.6±2.4y since cancer diagnosis, DRZ+ participants were slightly younger (27.8 vs 29.6y, p=0.02), but baseline characteristics otherwise did not differ significantly by DRZ status. DRZ status was associated with higher FS (34.7±3.6% vs 33.4±4.3%, p=0.04) and EF (63.4±5.4% vs 61.4±5.5%, p=0.01), and lower BNP (median 10.4 pg/mL [IQR 6.0-18.0] vs 13.0 [IQR 6.0-28.2], p=0.03) and NT-proBNP (median 30.8 pg/mL [IQR 18.9-58.2] vs 47.1 [IQR 23.0-83.1], p<0.01). In stratified analyses, the cardioprotective effects associated with DRZ tended to be more pronounced in females (vs males) and those who received DOX ≥300 mg/m2 (vs <300mg/m2). Results from multivariate models were similar: DRZ was associated with higher SF (1.4% [95% CI 0.2, 2.6]) and EF (2.7% [95% CI 0.8, 4.6]), and reduced BNP (-4.0 pg/mL [95% CI -7.6, -0.4]) and NT-proBNP (-20.7 pg/mL [95% CI -33.5, -7.9]). Overall, DRZ was associated with a reduced risk of having lower LV function (odds ratio 0.27 [95% CI 0.08-0.96]). Conclusions: After >17y, childhood cancer survivors treated with DOX+DRZ had better LV systolic function and less myocardial wall stress compared with those treated with DOX alone. DRZ may preferentially benefit females and those treated with greater DOX doses.

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