Treatment for medulloblastoma during childhood impairs neurocognitive function in survivors. While those diagnosed at younger ages are most vulnerable, little is known about the long-term neurocognitive, functional, and physical outcomes in survivors as they approach middle age. In this retrospective cohort study, we assessed 20 adults who were treated with surgery and radiotherapy for medulloblastoma during childhood (median age at assessment, 21.9 years [range, 18-47 years]; median time since diagnosis, 15.5 years [range, 6.5-42.2 years]). Nine patients also underwent chemotherapy. Cross-sectional analyses of current neurocognitive, functional, and physical status were conducted. Data from prior neuropsychological assessments were available for 18 subjects; longitudinal analyses were used to model individual change over time for those subjects. The group was well below average across multiple neurocognitive domains, and 90% had required accommodations at school for learning disorders. Longer time since diagnosis, but not age at diagnosis, was associated with continued decline in working memory, a common sign of aging. Younger age at diagnosis was associated with lower intelligence quotient and academic achievement scores, even many years after treatment had been completed. The most common health complications in survivors were hearing impairment, second cancers, diabetes, hypertension, and endocrine deficiencies. Adult survivors of childhood medulloblastoma exhibit signs of early aging regardless of how young they were at diagnosis. As survival rates for brain tumors continue to improve, these neurocognitive and physical sequelae may become evident in survivors diagnosed at different ages across the lifespan. It will become increasingly important to identify factors that contribute to risk and resilience in this growing population.

Glioblastoma (GBM) is the most common adult CNS malignancy but its impact on quality of life (QOL) is poorly understood. In other patient populations, illness intrusiveness (the extent to which disease and treatment disrupts valued activities and interests) is associated with low subjective well-being, after controlling for disease and treatment variables. In this cross-sectional cohort study, we examined the relations among illness intrusiveness, disease burden, and subjective well-being in GBM. 73 GBM patients completed validated self-report measures of depression, positive affect, illness intrusiveness, and health-related QOL. Responses were compared to data from six other cancer groups using repeated measures analyses of variance. Hierarchical multiple-regression analyses tested the hypothesis that illness intrusiveness accounts for well-being after controlling for the effects of disease burden. GBM patients reported less positive affect, more depression, and more illness intrusiveness than people with other cancers. Illness intrusiveness correlated with depression and (low) positive affect. Associations among cancer symptoms, depression, and positive affect decreased when illness intrusiveness was added to regression equations. Good performance status and high cancer-symptom burden were associated with illness intrusiveness and depression. GBM patients report greater distress, lower positive affect, and more illness intrusiveness than people with other cancers. Subjective well-being is mediated in part by illness intrusiveness in this population. In addition to medical treatment, efforts to help patients remain engaged in valued activities and interests may help preserve QOL after the diagnosis of a GBM.

Patients treated for lung cancer are often elderly presenting a unique challenge for developing patient education materials. This study developed and evaluated a patient education pamphlet on lung stereotactic body radiotherapy (SBRT) designed specifically for an elderly population. The SBRT pamphlet was developed using a participatory design involving a convenience sample of patients. This prospective study assessed patient's opinions of pamphlet effectiveness through self-report questionnaires. The pamphlet was deemed "effective" if patients rated 16/18 evaluation statements as "strongly agree" or "agree." Demographic data and health literacy (Rapid Estimate of Adult Literacy in Medicine short-form (REALM-SF)) were also assessed. Patient opinion of pamphlet "effectiveness" was compared between patients with REALM-SF scores of 7 versus <7 using Fisher's exact test. The overall EQ-5D-5L score was compared for patients who did and did not find the pamphlet effective using the Wilcoxon-Mann-Whitney test. Thirty-seven patients participated. The median age was 76 years (range 56-93) and 22 patients (59 %) had ≤high school education. Most patients preferred to have verbal (65 %) or written (78 %) educational materials as opposed to online information or educational classes. Thirty-two patients (86 %) rated the pamphlet as effective. The proportion of patients who found the pamphlet effective was 85.7 versus 86.7 % (p = 1.00) in those with REALM 7 versus <7. The mean EQ-5D score was 67.5 (SD 19.1) versus 71.8 (SD 8.7) (p = 0.84) in those who found the pamphlet effective versus not. Participatory design is an effective method for developing education materials for challenging patient groups such as elderly patients. Despite advanced age and comorbidity, this patient group had adequate health literacy.

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Pediatric Longitudinal Experience with Residents (PedLER) is a unique program at the University of Toronto, designed to foster formal mentorship between pediatric residents and first-year medical students.

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INTRODUCTION: Recent trials have shown that the addition of procarbazine, lomustine, and vincristine (PCV) chemotherapy to radiotherapy (RT) improves survival in anaplastic oligodendroglioma. With improved survival, the quality of survival becomes pivotal. Because data regarding longterm functioning in anaplastic glioma patients are lacking, we evaluated cognitive functioning and health-related quality of life (HRQOL) in a cohort of Dutch and French long-term survivors from the European Organisation for Research and Treatment of Cancer (EORTC) trial 26951 on adjuvant PCV for anaplastic glioma. METHODS: Of the 28 Dutch patients and 9 French patients, 25 (89%) and 7 (78%), respectively, included in EORTC trial 26951 who were still alive agreed to participate. Cognitive functioning (assessed using neuropsychological tests for six cognitive domains) was compared with matched healthy controls. Patients' HRQOL (assessed with the EORTC QLQ-C30 and BN20 questionnaires) was compared with that of healthy controls, with the patients' own HRQOL 2.5 years following initial RT, and with the patient by proxy. Tumor histology, location, and recurrence; treatment; and the presence of epilepsy in the last year were recorded. RESULTS: The median survival time was 147 months. A total of 41% of patients did not have cognitive impairment, and 34% had severe impairment (≥ 4 domains affected). A total of 31% of patients were employed, 78% were independent in the activities of daily living. Patients' HRQOL was worse than controls' but was similar to 2.5 years after initial treatment. Treatment (in 35% of patients RT only, in 65% RT/PCV), histology and location were not correlated with cognition or HRQOL. Current epilepsy was associated with slower speed and poorer memory. Recent recurrence (13%) was associated with worse HRQOL. CONCLUSIONS: Cognitive functioning in longterm anaplastic glioma survivors is variable. However, most patients function independently. HRQOL is relatively stable during the course of the disease but is affected by recent recurrence. No effect of the addition of PCV to RT on cognition or on quality of survival could be identified in this patient group.

Objectives To determine whether a change in clinical management (e.g., new tracheostomy or adenotonsillectomy) occurred following a polysomnogram (PSG) in children with medical complexity (CMC) and to explore whether families’ goals of care (regarding results and treatment implications) were discussed prior to the completion of a PSG. Methods All CMC enrolled in a complex care program at the Hospital for Sick Children, Canada, who underwent a baseline PSG from 2009 to 2015 were identified. Exclusion criteria included (1) PSGs for ventilation titration and (2) PSGs outside the study time frame. Health records were retrospectively reviewed to determine demographics, medical histories, families’ wishes, PSG results, and their impact on clinical care. Descriptive statistics were used to summarize results. Results Of 145 patients identified, 96 patients met inclusion criteria. Fifty (52%) were male. Median age was 3 years. Forty-eight (50%) were diagnosed with clinically significant (i.e., moderate to severe obstructive sleep apnea, central sleep apnea, and/or hypoventilation) sleep-related breathing disorders. Of those diagnosed, 9 (19%) had surgery, 25 (52%) underwent respiratory technology initiation, and 3 (6%) underwent both. In the remaining 11 (23%) patients, treatment was either considered too risky or did not align with the families’ wishes. Only 3 of 96 patients had clear documentation of their families’ wishes prior to PSG completion. Conclusion Recognizing the burden of medical tests for both the child and the health care system, a process of shared-decision making that includes clarifying a family’s wishes may be prudent prior to conducting a PSG.