Background Data regarding the acceptability, feasibility, and quality of telehealth among adolescents and young adults (AYA) and their parents and caregivers (caregivers) are lacking. Objective The aim of this study was to assess the noninferiority of telehealth versus in-person visits by comparing acceptability with respect to efficiency, effectiveness, equity, patient-centeredness, and confidentiality. Methods Cross-sectional web-based surveys were sent to caregivers and AYA following video visits within an Adolescent Medicine subspecialty clinic in May-July 2020. Proportions of AYA and caregivers who rated telehealth as noninferior were compared using chi-squared tests. Feasibility was assessed via items measuring technical difficulties. Deductive thematic analysis using the Institute of Medicine dimensions of health care quality was used to code open-ended question responses. Results Survey response rates were 20.5% (55/268) for AYA and 21.8% (123/563) for caregivers. The majority of the respondents were White cisgender females. Most AYA and caregivers rated telehealth as noninferior to in-person visits with respect to confidentiality, communication, medication management, and mental health care. A higher proportion of AYA compared to caregivers found telehealth inferior with respect to confidentiality (11/51, 22% vs 3/118, 2.5%, P<.001). One-quarter (14/55) of the AYA patients and 31.7% (39/123) of the caregivers reported technical difficulties. The dominant themes in the qualitative data included advantages of telehealth for efficiency and equity of health care delivery. However, respondents’ concerns included reduced safety and effectiveness of care, particularly for patients with eating disorders, owing to lack of hands-on examinations, collection of vital signs, and laboratory testing. Conclusions Telehealth was highly acceptable among AYA and caregivers. Future optimization should include improving privacy, ameliorating technical difficulties, and standardizing at-home methods of obtaining patient data to assure patient safety.
Despite a remarkable increase in the genomic profiling of cancer, integration of genomic discoveries into clinical care has lagged behind. We report the feasibility of rapid identification of targetable mutations in 153 pediatric patients with relapsed/refractory or high-risk leukemias enrolled on a prospective clinical trial conducted by the LEAP Consortium. Eighteen percent of patients had a high confidence Tier 1 or 2 recommendation. We describe clinical responses in the 14% of patients with relapsed/refractory leukemia who received the matched targeted therapy. Further, in order to inform future targeted therapy for patients, we validated variants of uncertain significance, performed ex vivo drug-sensitivity testing in patient leukemia samples, and identified new combinations of targeted therapies in cell lines and patient-derived xenograft models. These data and our collaborative approach should inform the design of future precision medicine trials. Significance: Patients with relapsed/refractory leukemias face limited treatment options. Systematic integration of precision medicine efforts can inform therapy. We report the feasibility of identifying targetable mutations in children with leukemia and describe correlative biology studies validating therapeutic hypotheses and novel mutations. See related commentary by Bornhauser and Bourquin, p. 1322. This article is highlighted in the In This Issue feature, p. 1307
Background Caregivers and adolescents and young adult (AYA) cancer survivors may be at greater psychosocial risk from the COVID‐19 pandemic than healthy peers due to complex and traumatic medical histories. This study describes COVID‐19‐related event exposures, impact, and distress among a large sample of caregivers and AYA cancer survivors and the relationship of these variables to demographic and cancer characteristics. Procedure From May 2020 to December 2021, 422 caregivers and 531 AYA survivors completed the COVID‐19 Exposures and Family Impact Survey (CEFIS) and CEFIS‐AYA, respectively. Total COVID‐19‐related exposures, average COVID‐19‐related impact, and COVID‐19‐related distress were calculated. Conventional content analysis was used to analyze free‐text responses about the negative and positive effects of COVID‐19. Results Caregivers and AYA reported an average of 7.4–7.8 COVID‐19 exposures to pandemic‐related events and a slightly negative impact of COVID‐19 across psychosocial domains, with some positive impacts reported. COVID‐19‐related distress was moderate and clinically meaningful (4.9–5.2/10) for AYA and caregivers. Racial and ethnically minoritized AYA and caregivers reported higher COVID‐19‐related distress than non‐Hispanic white caregivers. For AYA, distress was also higher among female, college‐age (18–22 years), and long‐term survivors compared with males, younger AYA, White and those recently off treatment. CEFIS outcomes remained relatively stable over time. Conclusions COVID‐19 had a significant and consistent negative impact on caregivers and AYA survivors. Racial and ethnically minoritized families and female, college‐age, and long‐term AYA survivors may require additional psychosocial support. Assessing for COVID‐19 impact and distress is important in pediatric oncology to evaluate adjustment and plan targeted interventions.
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