Health-related Internet Use by Caregivers of Children and Adolescents With Cancer.

Caregivers of children with cancer have needs for information and social support related to their child's diagnosis. The internet serves as a resource to help meet these needs. There is growing interest in health-related internet use (HRIU) by caregivers of pediatric patients as the internet rapidly evolves. This survey study describes patterns of internet use by caregivers of children with cancer and examines associations between socioeconomic status and internet use. 114 caregivers participated between 2014 and 2016. The majority (82%) reported frequent general internet use, but fewer (25-54%) reported frequent HRIU. Very few respondents (4%) reported difficulty accessing the internet; those reporting difficulty were more likely to report lower income, public/no insurance, and lower educational attainment. There were no consistent associations between socioeconomic status variables and frequency of HRIU. Less than half (43%) of caregivers reported that their internet use raised questions that they discussed or planned to discuss with the child's nurse or doctor, and only 4% reported having changed medical decisions based on information found on the internet. We conclude that caregivers of children with cancer engage in HRIU, and this is an area for improvement in oncology anticipatory guidance and family-centered care.

Phase II trial of response-based radiation therapy for patients with localized germinoma: a Children's Oncology Group study.

BACKGROUND: The study aimed to evaluate whether simplified chemotherapy followed by dose-reduced irradiation was effective for treating patients (ages 3-21 years) with localized germinoma. The primary endpoint was 3-year progression-free survival (PFS) rate. METHODS: Patients with a complete response to chemotherapy with carboplatin and etoposide received 18 Gy WVI + 12 Gy boost to the tumor bed. Patients with partial response proceeded to 24 Gy WVI + 12 Gy. Longitudinal cognitive functioning was evaluated prospectively on ALTE07C1 and was a primary study aim. RESULTS: One hundred and fifty-one patients were enrolled; 137 were eligible. Among 90 evaluable patients, 74 were treated with 18 Gy and 16 with 24 Gy WVI. The study failed to demonstrate noninferiority of the 18 Gy WVI regimen compared to the design threshold of 95% 3-year PFS rate, where, per design, patients who could not be assessed for progression at 3 years were counted as failures. The Kaplan-Meier (KM)-based 3-year PFS estimates were 94.5 ± 2.7% and 93.75 ± 6.1% for the 18 Gy and 24 Gy WVI cohorts, respectively. Collectively, estimated mean IQ and attention/concentration were within normal range. A lower mean attention score was observed at 9 months for patients treated with 24 Gy. Acute effects in processing speed were observed in the 18 Gy cohort at 9 months which improved at 30-month assessment. CONCLUSIONS: While a failure according to the prospective statistical noninferiority design, this study demonstrated high rates of chemotherapy responses, favorable KM-based PFS and OS estimates in the context of reduced irradiation doses and holds promise for lower long-term morbidities for patients with germinoma.

Joint-Specific Play Controller for Upper Extremity Therapy: Feasibility Study in Children With Wrist Impairment.

BACKGROUND: Challenges with any therapeutic program for children include the level of the child's engagement or adherence. Capitalizing on one of the primary learning avenues of children, play, the approach described in this article is to develop therapeutic toy and game controllers that require specific and repetitive joint movements to trigger toy/game activation. OBJECTIVE: The goal of this study was to evaluate a specially designed wrist flexion and extension play controller in a cohort of children with upper extremity motor impairments (UEMIs). The aim was to understand the relationship among controller play activity, measures of wrist and forearm range of motion (ROM) and spasticity, and ratings of fun and difficulty. DESIGN: This was a cross-sectional study of 21 children (12 male, 9 female; 4-12 years of age) with UEMIs. METHODS: All children participated in a structured in-clinic play session during which measurements of spasticity and ROM were collected. The children were fitted with the controller and played with 2 toys and 2 computer games for 5 minutes each. Wrist flexion and extension motion during play was recorded and analyzed. In addition, children rated the fun and difficulty of play. RESULTS: Flexion and extension goal movements were repeatedly achieved by children during the play session at an average frequency of 0.27 Hz. At this frequency, 15 minutes of play per day would result in approximately 1,700 targeted joint motions per week. Play activity was associated with ROM measures, specifically supination, but toy perception ratings of enjoyment and difficulty were not correlated with clinical measures. LIMITATIONS: The reported results may not be representative of children with more severe UEMIs. CONCLUSIONS: These outcomes indicate that the therapeutic controllers elicited repetitive goal movements and were adaptable, enjoyable, and challenging for children of varying ages and UEMIs.

Strategies to improve success of pediatric cancer cooperative group quality of life studies: a report from the Children's Oncology Group.

PURPOSE: Quality of life (QoL) has been increasingly emphasized in National Cancer Institute (NCI)-sponsored multisite clinical trials. Little is known about the outcomes of these trials in pediatric cancer. Objectives were to describe the proportion of Children's Oncology Group (COG) QoL studies that successfully accrued subjects and were analyzed, presented or published. METHODS: We conducted a survey to describe outcomes of COG QoL studies. We included studies that contained at least one QoL assessment and were closed to patient accrual at the time of survey dissemination. Respondents were the investigators most responsible for the QoL aim. RESULTS: Sixteen studies were included; response rate was 100%. Nine (56%) studies were embedded into a cancer treatment trial. Only 3 (19%) studies accrued their intended sample size. Seven (44%) studies were analyzed, 9 (56%) were presented, and 6 (38%) were published. CONCLUSIONS: NCI-sponsored pediatric QoL studies have high rates of failure to accrue. Many were not analyzed or disseminated. Using these data, strategies have been implemented to improve conduct in future trials. Monitoring of QoL studies is important to maximize the chances of study success.

Feasibility of conducting long-term follow-up of children and infants treated for CNS tumors on the same cooperative group clinical trial protocol.

Given the barriers to conducting long-term assessment of neurocognitive and psychosocial functioning of those treated in infancy for central nervous system (CNS) tumors, a multi-site feasibility study was conducted. The primary objective was to demonstrate that it is feasible to identify, locate and assess the functioning of children treated on the same protocol 10-years post-treatment. Six sites obtained institutional approval, identified and recruited subjects, and obtained comprehensive neurocognitive and psychosocial data. All feasibility objectives were met. Barriers to participation included length of time for Institutional Review Board submission and review, clinical demands, limited eligible participants at individual institutions, difficulty locating long-term subjects and stipend/reimbursement concerns. Results indicate that long-term studies are feasible and essential given the need to address long-term issues of children treated at a young age for CNS tumors, especially as they relate to later academic and vocational planning, but require significant coordination and commitment of cooperative group and institutional resources.

Parental needs for information related to neurocognitive late effects from pediatric cancer and its treatment.

BACKGROUND: Parents' needs for information about neurocognitive late effects (NCLE) associated with cancer treatment may differ as to the preferred source, format, timing, and amount of information about potential NCLE from treatment. Parental characteristics, treatment variables, and other risk factors may also modulate the needs for information about NCLE. PROCEDURE: A total of 90 parents completed a series of questionnaires related to their perceived knowledge of NCLE and need for further information about NCLE, coping style, stress, perceived risk for NCLE, and information related to their child's diagnosis and treatment. RESULTS: These findings indicate that although parents report feeling knowledgeable about NCLE, they continue to have a need for further information. Many parents would prefer multi-modal presentation of this material, but they do not have a clear consensus about the optimal time to first discuss this risk. Parents who reported higher levels of emotional distress expressed a preference to receive information earlier. Stepwise regression analyses revealed that parents of children who received cranial radiation reported being well informed about NCLE, whereas parents of children who received chemotherapy reported wanting more information about NCLE. CONCLUSIONS: It is important to recognize the high level of need for information about potential NCLE in caregivers of children with cancer. Further research is needed to understand how to tailor the timing and mode of presentation to individual families.

Pre-treatment factors related to cognitive functioning in women newly diagnosed with breast cancer.

Women treated for breast cancer have shown cognitive deficits with reduced capacity to focus and concentrate or to direct attention. This study examined the relationship between cognitive function prior to any treatment for breast cancer and individual factors including age, education, menopausal status, chronic health problems, and distress. Women newly diagnosed with breast cancer (N=184), ages 27-86 years, were assessed with standardized attention tests, self-reports of effectiveness in cognitive functioning, and measures of distress at about 18 days before surgery. Measured performance on the cognitive tests was not significantly correlated to self-reports of effectiveness in cognitive functioning. Age, education, presence of a chronic health problem, and menopausal status, but not distress, were associated with performance on the cognitive tests. Only age and education, however, were significant (p<0.001) predictors of overall performance on the cognitive tests, when controlling covariates. In contrast, symptom and mood distress significantly (p<0.001) predicted perceptions of effectiveness in cognitive functioning. Thus, different factors were associated with measured performance versus self-reports of cognitive functioning. Individual factors that predispose to lowered effectiveness in cognitive functioning prior to treatment in women newly diagnosed with breast cancer are discussed.

Parent and adolescent adjustment to pediatric cancer: associations with coping, social support, and family function.

This article presents preliminary results investigating the relationship between parental and adolescent adjustment and coping and their relationship to social support and family functioning in a sample of adolescents (ages 11-18) with cancer and one of their parents. Parents and adolescents from two pediatric oncology clinics completed measures of distress, coping, social support, and family cohesion/adaptability. Low levels of distress were reported by both children and their parents with positive correlations noted between parent and child adjustment. Adolescents reported that their parents and a close friend were the greatest sources of social support and described their families as having a high degree of cohesion and adaptability. Both adolescents and parents used more adaptive than maladaptive coping strategies, although distress was associated with reduced use of adaptive coping. Adolescents are able to adapt to cancer in the context of strong family and social supports. In addition, there is a relationship between parental and adolescents adjustment, and between greater use of adaptive coping styles and lower distress.