<p>Decision-making among adolescents and young adults with cancer (AYA) is often complex, ongoing, and multifaceted, involving caregiver and oncology provider perspectives. Engagement in decision-making against the backdrop of normative developmental processes of acquiring autonomy and gaining independence contributes to the complexity of decision-making. Semi-structured qualitative interviews from 11 AYA and caregiver dyads and eight oncology providers examined decision-making processes with specific attention to the role of shared decision-making, cognitive and emotional processes, and coping with the decision-making experience. Five decision-making patterns were identified, with and most commonly described. Utilizing hypothesis coding, AYA and caregivers explained how cognitive (i.e., pros/cons) and emotional (i.e., shock and fear of missing out) processes influenced cancer-related decisions. Coping strategies provided clarity and respite when engaged in decision-making. Our findings illuminate important implications for how to best support decision-making among AYA and caregivers, including the role oncology providers can play during decision-making.</p>

<p><strong>PURPOSE: </strong>Parents of children with cancer exhibit high levels of psychological distress. Parents of children with serious illness report religion and spirituality are important coping resources. We sought to describe characteristics of religion, religious coping, social support, and resiliency in parents of children newly diagnosed with cancer and examine associations between psychological distress and self-reported religious coping, religiosity, resiliency, and social support.</p>

<p><strong>PATIENTS AND METHODS: </strong>Cross-sectional observational study of 100 parents of 81 unique children recently diagnosed with cancer. Parents provided demographic information and completed measures of psychological distress, importance of religion, religious coping, resiliency, and social support. Patients' type of tumor and intensity of treatment were collected by medical record abstraction.</p>

<p><strong>RESULTS: </strong>Compared to nationally reported data for adults, parents of children with cancer reported high scores for psychological distress but similar levels of religiosity, religious coping, and resiliency. Negative religious coping (feelings of negativity related to the divine) was associated with higher levels of psychological distress. This effect was most prominent in parents who reported the highest levels of religiosity. Positive religious coping, religiosity, and social support were not associated with levels of psychological distress.</p>

<p><strong>DISCUSSION: </strong>Findings confirm high levels of distress for parents of children with cancer. Negative religious coping was associated with higher levels of psychological distress but positive religious coping, religiosity, and other coping factors were not found to be significantly associated with distress. Further assessment of negative religious coping to inform interventions to promote resiliency is warranted as they may impact parental decision-making and care.</p>

<p><strong>BACKGROUND: </strong>Despite the promise of mobile health (mHealth), engagement is often too low for durable health behavior change, and little is known regarding why certain individuals abandon mHealth tools.</p>

<p><strong>PURPOSE: </strong>Guided by a mHealth engagement framework, we evaluated contextual predictors of objective engagement with an app for adolescents and young adults (AYA) who survived cancer.</p>

<p><strong>METHODS: </strong>One hundred and ten AYA survivors (M age = 20.5, 43% female, 30% racial/ethnic minority) were randomized to receive a disease self-management app that delivered 1-2 tailored messages/day for 16 weeks, and contained a survivorship care plan (SCP). Demographic, disease, psychosocial, and setting characteristics were examined as predictors of three objective engagement outcomes: (a) % of active app days, (b) % of messages read, and (c) viewed SCP in the app versus not. A subsample (n = 10) completed qualitative interviews to further assess engagement barriers.</p>

<p><strong>RESULTS: </strong>Self-reported uninterrupted app access (β = -0.56, p &lt; .001), iPhone (vs. Android) ownership (β = 0.30, p &lt; .001), and receiving the intervention in the summer (β = -0.20, p = .01) predicted more active days. Lower depressed mood (β = -0.30, p = .047) and uninterrupted app access (β = -0.50, p &lt; .001) predicted more messages read. Qualitatively, technical glitches and competing priorities were described as engagement barriers, whereas certain types of messages (e.g., health goal messages) were perceived as engaging. Among participants who had uninterrupted app access (n = 76), higher baseline motivation to change, better health perceptions, using the app during the summer, and iPhone ownership predicted higher engagement.</p>

<p><strong>CONCLUSIONS: </strong>Findings demonstrate the importance of comprehensively assessing and planning for multi-level ecological determinants of mHealth engagement in future trials.</p>

<p><strong>CLINICALTRIALS.GOV IDENTIFIER: </strong>NCT03363711.</p>

<p>Adolescent and young adult survivors of childhood cancer (AYA) are at risk for long-term health problems that are exacerbated by not meeting health behavior recommendations (e.g., exercise). To identify AYA at risk for not meeting health behavior recommendations, we explored demographic (e.g., age) and cancer-specific (e.g., intensity of treatment) factors associated with not meeting specific health behavior recommendations that have implications for cancer prevention and control. Regression (linear/binary) was used to examine demographic and cancer-specific associates regarding fruit/vegetable intake, binge drinking, sleep duration, sunscreen use, tobacco use, and physical activity among 307 AYA (M = 20.33, range = 15-34) across three combined studies, treated at a pediatric cancer center. Health behavior measures were adapted from The Health Behaviors Survey and the Youth Risk Behavior Surveillance System questionnaire. AYA in general did not meet health behavior recommendations. Compared with AYA with public insurance, AYA with private insurance ( = -0.19,  &lt; 0.01) were more likely to meet multiple health behavior recommendations. AYA at greatest risk for not meeting specific health behaviors were more likely to be diagnosed in middle childhood (11.35) compared with early childhood (8.38), be closer to diagnosis (8.77 vs. 11.76) and closer to treatment completion (6.97 vs. 9.91), and have a solid tumor (32.7%) compared with a brain tumor (10.6%). Not meeting health behavior recommendations is common among AYA survivors of childhood cancer. Early education in the context of survivorship care is critical to provide teachable moments to AYA; such interventions might impact future long-term health and reduce risk for secondary cancers.</p>

<p><strong>OBJECTIVE: </strong>The transition from active cancer treatment to survivorship represents a period of uncertainty for youth and their families, but factors associated with adaptation during this period are understudied. We evaluated associations among cancer and treatment-related variables, family factors (family functioning, caregiver health-related quality of life [HRQL], and caregiver distress), and patient HRQL after treatment completion. We assessed the indirect effects of neurocognitive difficulties on youth HRQL through family factors.</p>

<p><strong>METHODS: </strong>154 caregivers (of patients ages 0-18 years) and 52 youth (ages 7-18 years) completed questionnaires assessing family factors, neurocognitive difficulties, and HRQL for patients within six months following treatment completion. Electronic health records were reviewed for cancer and treatment-related information. Bootstrapping analyses assessed whether neurocognitive function had indirect effects on HRQL through family factors.</p>

<p><strong>RESULTS: </strong>Family factors were associated with self- and caregiver reports of children's HRQL. Controlling for demographic, cancer, and treatment covariates, caregiver reports of their child's neurocognitive difficulties had an indirect effect on their reports of child physical HRQL through family functioning. Caregiver reports of their child's neurocognitive difficulties indirectly related to caregiver reports of child psychosocial HRQL through family functioning and caregiver HRQL. Indirect effects for self-reported neurocognitive difficulties and HRQL were not supported.</p>

<p><strong>CONCLUSIONS: </strong>Findings highlight the need for routine psychosocial screening for youth and caregiver reports of family adjustment and HRQL during transition off treatment. Providers are encouraged to offer interventions matched to specific needs for families at risk for poor family functioning to improve patient outcomes as they transition off treatment. This article is protected by copyright. All rights reserved.</p>

<p><strong>BACKGROUND: </strong>This pilot study explored the feasibility and acceptability of implementing text-based assessments of oral chemotherapy adherence in adolescents and young adults (AYA) with leukemia.</p>

<p><strong>METHODS: </strong>AYA prescribed maintenance 6-mercaptopurine (6MP) received daily text message surveys and utilized an electronic pill bottle for 28&nbsp;days. Text surveys assessed 6MP adherence and contextual associates (eg, mood). Feasibility was defined by recruitment/retention rates, survey completion rates, cost, and technical issues. After the 28-day period, AYA completed an acceptability survey. Secondary analyses compared text survey and electronic pill bottle adherence rates, and explored the daily associations between contextual factors and 6MP nonadherence.</p>

<p><strong>RESULTS: </strong>Eighteen AYA enrolled (M age&nbsp;=&nbsp;18, range 15-22) and completed study procedures (100% recruitment and retention rates). Adherence survey completion rates were high (M&nbsp;=&nbsp;88.9%), the technology cost was $204.00, and there were few technical issues. AYA reported high satisfaction with the surveys and perceived them as a helpful medication reminder. While not significantly correlated, survey and electronic pill bottle adherence data converged on the majority of days (&gt;90%). Exploratory analyses showed that AYA were more likely to miss a dose of 6MP on weekends (OR&nbsp;=&nbsp;2.33, P&nbsp;=&nbsp;.048) and on days when their adherence motivation (OR&nbsp;=&nbsp;0.28, P&nbsp;=&nbsp;.047) and negative effect (OR&nbsp;=&nbsp;3.92, P&nbsp;=&nbsp;.02) worsened from their own typical functioning.</p>

<p><strong>CONCLUSIONS: </strong>For AYA with leukemia, daily text-based surveys are a feasible and acceptable method for delivering medication adherence assessments, and may operate as a short-term intervention. To develop personalized mobile health interventions, findings also highlighted the need to study time-varying predictors of 6MP nonadherence.</p>

<p>This mixed methods study sought to assess adolescent and young adult (AYA) adherence to three cancer treatment recommendations (medications, diet, physical activity), and determine the individual, family, and health system factors associated with suboptimal adherence. In Stage 1, 72 AYA-caregiver dyads completed a validated adherence interview and surveys about individual and family functioning. Matched providers ( = 34 who reported on 61 AYAs) completed global adherence ratings through survey. In Stage 2, a subset ( = 31) completed qualitative interviews. Medication adherence was higher ( = 94.8%) than diet ( = 73.9%) and physical activity ( = 55.4%), although ≥50% demonstrated "Imperfect Adherence" for each subtask. Univariately, AYAs who missed a medication had more depressive symptoms, worse health-related quality of life (HRQOL), and more medication barriers; their families had more financial stress, worse family functioning, and lower self-efficacy. The odds of adhering to medications were lower with worse HRQOL (odds ratio [OR] = 1.08; 95% confidence interval [CI], 1.02-1.15) and family functioning (OR = 0.18; 95% CI, 0.04-0.91). The odds of adhering to physical activity and diet were lower with worse family functioning (OR = 0.09; 95% CI, 0.01-0.91) and more barriers (OR = 0.24, CI: 0.10-0.61), respectively. Qualitative themes further supported multilevel influences on AYA adherence. Adherence challenges were identified across medications, diet, and physical activity. Multilevel contextual factors were associated with suboptimal adherence, including poorer HRQOL and family functioning. Findings support the need to improve clinical adherence assessment and develop contextually tailored interventions.</p>

<p><strong>PURPOSE: </strong>Despite cure, adolescents and young adults (AYA) who complete cancer treatment remain at risk for numerous physical and psychological late effects. However, engagement in recommended follow-up care, knowledge of cancer treatment history and risks, and adoption of health promoting behaviors are often suboptimal. The pilot randomized controlled trial assessed the feasibility and acceptability of a text messaging intervention (THRIVE; Texting Health Resources to Inform, motiVate, and Engage) designed to promote well-being, and health knowledge and behaviors.</p>

<p><strong>METHODS: </strong>Sixty-one AYA who recently completed cancer therapy enrolled and were randomized to receive THRIVE (n=31) or an AYA survivor handbook (n=30). Participants from both groups completed baseline measures and follow-up surveys 16 weeks later. AYA randomized to THRIVE received 1-2 health-related text messages per day over 16 weeks.</p>

<p><strong>RESULTS: </strong>THRIVE demonstrated a high level of acceptability and feasibility. Exploratory analyses highlighted promising improvements in knowledge, fruit/vegetable intake, and perceptions of health vulnerability.</p>

<p><strong>CONCLUSIONS: </strong>Text messaging is an acceptable and feasible intervention approach for improving well-being and health of AYA survivors. Future research is needed to test the impact of text messaging in a larger trial, including whether or not such an intervention can improve clinical outcomes, such as survivors' engagement in follow-up care.</p>

<p><strong>INTRODUCTION: </strong>Objectives were used to describe guardian proxy-report and child self-report quality of life (QoL) during chemotherapy for pediatric acute myeloid leukemia (AML) patients.</p>

<p><strong>METHODS: </strong>Patients enrolled on the phase 3 AML trial AAML1031 who were 2-18&nbsp;years of age with English-speaking guardians were eligible. Instruments used were the PedsQL Generic Core Scales, Acute Cancer Module, and Multidimensional Fatigue Scale. Assessments were obtained at the beginning of Induction 1 and following completion of cycles 2-4. Potential predictors of QoL included the total number of nonhematological grade 3-4 Common Terminology Criteria for Adverse Event (CTCAE) submissions.</p>

<p><strong>RESULTS: </strong>There were 505 eligible guardians who consented to participate and 348 of their children provided at least one self-report assessment. The number of submitted CTCAE toxicities was significantly associated with worse physical health summary scores (β&nbsp;±&nbsp;standard error (SE) -3.00&nbsp;±&nbsp;0.69; P&nbsp;&lt;&nbsp;0.001) and general fatigue (β&nbsp;±&nbsp;SE -2.50&nbsp;±&nbsp;0.66; P&nbsp;&lt;&nbsp;0.001). Older age was significantly associated with more fatigue (β&nbsp;±&nbsp;SE -0.58&nbsp;±&nbsp;0.25; P&nbsp;=&nbsp;0.022). Gender, white race, Hispanic ethnicity, private insurance status, risk status, bortezomib assignment, and duration of neutropenia were not significantly associated with QoL.</p>

<p><strong>DISCUSSION: </strong>The number of CTCAE toxicities was the primary factor influencing QoL among children with AML. Reducing toxicities should improve QoL; identifying approaches to ameliorate them should be a priority.</p>

<p>Reasons for the relatively low rates of adolescent and young adults (AYA) enrollment in cancer clinical trials in the United States require further empirical examination. In addition to structural factors such as lack of access and insurance barriers, attitudes toward clinical trials may be important to consider. This study aimed to evaluate and validate the Pediatric Research Participation Questionnaire (PRPQ)-a measure of attitudes to clinical trials adapted for AYA (15-29) with cancer and their caregivers. One hundred twenty-four AYA and 94 caregivers completed the PRPQ-AYA and measures of clinical trial knowledge and developmental/emotional maturity. Factor analysis evaluated the PRPQ-AYA structure, interitem reliability was computed, and Pearson correlations examined associations of validation measures with factor scores and computed scores reflecting perceived barriers, perceived benefits, and decision balance. Confirmatory factor analysis did not confirm the prior PRPQ factor structure. Exploratory factor analysis suggested a new four-factor structure for: AYA (1) trust/mistrust, (2) barriers/costs, (3) support for participation, and (4) incentives; and caregivers (1) trust/access, (2) mistrust/costs, (3) support for participation, and (4) risks to AYA. Factor scores and barriers, benefits, and decision balance scores demonstrated acceptable interitem reliability and were significantly correlated with clinical trial knowledge and emotional maturity in the expected direction. PRPQ-AYA factor structure for AYA and caregivers varied and should be interpreted cautiously due to limited power. Simple solutions of perceived benefits, perceived barriers, and decision balance were reliable and valid and provide important information to address and engage AYA through the clinical trial informed consent process.</p>