Activating Adolescent and Young Adult Involvement with Cancer Care Responsibilities: A Dyadic Qualitative Study with Caregivers.

Purpose: Empowering adolescents and young adult (AYA) patients to be involved in cancer responsibilities (e.g., remembering medications), as opposed to solely relying on caregivers, may have important short- and long-term benefits for development and disease management. This study explored perceptions of AYA engagement with cancer-related responsibilities and plans for transferring these responsibilities from caregivers to AYAs. Methods: A total of 30 AYA-caregiver dyads (including 11 early adolescents, 10 adolescents, and 9 young adults who were receiving chemotherapy and/or radiation) jointly completed a semi-structured interview. Interviews assessed the present allocation of cancer responsibilities within the family, how cancer responsibilities were divided this way, and prompted a dyadic discussion to draft a plan to transfer a responsibility to the AYA in the future. Directed content analysis techniques were used to identify and organize relevant themes. Results: Themes showed that (1) cancer responsibilities were initially assumed "naturally" by caregivers, without much formal discussion; (2) greater AYA involvement in cancer care reflected AYA (e.g., age, willingness) and caregiver factors (e.g., knowledge/skills, anxiety); (3) over time, dyads mutually prioritized AYA engagement with cancer care; and (4) the need for more proactive clinical support with transferring care tasks to AYAs. Discussion: Caregivers play a key role in managing cancer care with or for AYAs, with the allocation of these responsibilities being influenced by several factors that can shift over time. Dyads typically viewed the transfer process as important but desired more clinical support. This reflects a potential self-management care gap to address in future studies and dyadic interventions.

Grit and Health-Related Quality of Life in Adolescents and Young Adults with Cancer: Mediating Role of Health Self-Efficacy and Treatment Adherence.

OBJECTIVE: Challenges with health-related quality of life (HRQOL) are common among adolescents and young adults (AYA) with cancer. Literature on HRQOL has largely been focused on individual deficits, rather than individual strengths. The present study investigated the relations between a strengths-based concept called grit (i.e., perseverance and passion for long-term goals), self-management (i.e., health self-efficacy and adherence), and HRQOL among AYA with cancer. METHODS: Sixty-seven AYA receiving cancer treatment (Mage=17.1; 50.7% female; 25.4% Black, Hispanic, Asian, or a race other than white) and their caregivers (73.0% mothers) completed a semistructured, validated interview about adherence. AYA also completed self-report questionnaires about perceptions of their grit, health self-efficacy, and HRQOL. RESULTS: After controlling for sex, health self-efficacy (i.e., a cognitive self-management variable) mediated the relation between grit and HRQOL (95% confidence interval = .74-6.52). When testing adherence to medications, diet, or physical activity as mediators of the relation between grit and HRQOL, mediation models were non-significant. CONCLUSIONS: Among AYA with cancer, this study identified grit as an individual strength associated with more positive self-management beliefs, which in turn, related to better HRQOL. This adds to a growing body of literature supporting the need for resiliency-oriented, strengths-based approaches to AYA HRQOL research. Future directions include exploring the role of caregiver grit in relation to AYA cancer self-management, given that caregivers have demonstrated a high degree of involvement in AYA cancer care.

Understanding Adolescent and Young Adult 6-Mercaptopurine Adherence and mHealth Engagement During Cancer Treatment: Protocol for Ecological Momentary Assessment.

BACKGROUND: Adolescents and young adults (AYAs) with cancer demonstrate suboptimal oral chemotherapy adherence, increasing their risk of cancer relapse. It is unclear how everyday time-varying contextual factors (eg, mood) affect their adherence, stalling the development of personalized mobile health (mHealth) interventions. Poor engagement is also a challenge across mHealth trials; an effective adherence intervention must be engaging to promote uptake. OBJECTIVE: This protocol aims to determine the temporal associations between daily contextual factors and 6-mercaptopurine (6-MP) adherence and explore the proximal impact of various engagement strategies on ecological momentary assessment survey completion. METHODS: At the Children's Hospital of Philadelphia, AYAs with acute lymphoblastic leukemia or lymphoma who are prescribed prolonged maintenance chemotherapy that includes daily oral 6-MP are eligible, along with their matched caregivers. Participants will use an ecological momentary assessment app called ADAPTS (Adherence Assessments and Personalized Timely Support)-a version of an open-source app that was modified for AYAs with cancer through a user-centered process-and complete surveys in bursts over 6 months. Theory-informed engagement strategies will be microrandomized to estimate the causal effects on proximal survey completion. RESULTS: With funding from the National Cancer Institute and institutional review board approval, of the proposed 30 AYA-caregiver dyads, 60% (18/30) have been enrolled; of the 18 enrolled, 15 (83%) have completed the study so far. CONCLUSIONS: This protocol represents an important first step toward prescreening tailoring variables and engagement components for a just-in-time adaptive intervention designed to promote both 6-MP adherence and mHealth engagement. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/32789.

Microrandomized trials for promoting engagement in mobile health data collection: Adolescent/young adult oral chemotherapy adherence as an example.

Long-term engagement with mobile health (mHealth) apps can provide critical data for improving empirical models for real-time health behaviors. To learn how to improve and maintain mHealth engagement, micro-randomized trials (MRTs) can be used to optimize different engagement strategies. In MRTs, participants are sequentially randomized, often hundreds or thousands of times, to different engagement strategies or treatments. The data gathered are then used to decide which treatment is optimal in which context. In this paper, we discuss an example MRT for youth with cancer, where we randomize different engagement strategies to improve self-reports on factors related to medication adherence. MRTs, moreover, can go beyond improving engagement, and we reference other MRTs to address substance abuse, sedentary behavior, and so on.