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.

Ethical considerations in using sensors to remotely assess pediatric health behaviors.

Sensors, including accelerometer-based and electronic adherence monitoring devices, have transformed health data collection. Sensors allow for unobtrusive, real-time sampling of health behaviors that relate to psychological health, including sleep, physical activity, and medication-taking. These technical strengths have captured scholarly attention, with far less discussion about the level of human touch involved in implementing sensors. Researchers face several subjective decision points when collecting health data via sensors, with these decisions posing ethical concerns for users and the public at large. Using examples from pediatric sleep, physical activity, and medication adherence research, we pose critical ethical questions, practical dilemmas, and guidance for implementing health-based sensors. We focus on youth given that they are often deemed the ideal population for digital health approaches but have unique technology-related vulnerabilities and preferences. Ethical considerations are organized according to Belmont principles of respect for persons (e.g., when sensor-based data are valued above the subjective lived experiences of youth and their families), beneficence (e.g., with sensor data management and sharing), and justice (e.g., with sensor access and acceptability among minoritized pediatric populations). Recommendations include the need to increase transparency about the extent of subjective decision making with sensor data management. Without greater attention to the human factors involved in sensor research, ethical risks could outweigh the scientific promise of sensors, thereby negating their potential role in improving child health and care. (PsycInfo Database Record (c) 2024 APA, all rights reserved).

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.

Increasing digital mental health reach and uptake via youth partnerships.

Youth in the United States are facing an unprecedented mental health crisis. Yet, brick-and-mortar mental healthcare, such as face-to-face therapy, is overwhelmingly inaccessible to youth despite research advances in youth mental health. Digital Mental Health tools (DMH), the use of technologies to deliver mental health assessments and interventions, may help to increase mental healthcare accessibility. However, for a variety of reasons, evidence-based DMH have not been successful in reaching youth in real-world settings, particularly those who are most encumbered with access barriers to mental healthcare. This Comment therefore focuses on increasing DMH reach and uptake by young people, particularly among minoritized youth, by engaging in community-based youth partnerships. This idea recognizes and grows from decades' worth of community-based participatory research and youth partnerships successfully conducted by other disciplines (e.g., social work, public health, urban planning, education). Increasing uptake and engagement is an issue that is unlikely to be solved by adult-driven theory and design. As such, we emphasize the necessity of reframing youth input into DMH design and deployment from one-time participants to integral community-based partners. Indeed, recognizing and valuing their expertise to equitably address DMH implementation challenges, youth should help to pose the very questions that they will help to answer throughout the design and implementation planning for DMH moving forward.

Psychosocial impact of COVID-19 on caregivers and adolescents and young adult survivors of childhood cancer.

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.

Addressing Barriers to Career Development Awards for Early Career Women in Pediatric Psychology.

OBJECTIVE: To provide person and system-level recommendations for supporting early career women in the field of pediatric psychology in writing and submitting National Institutes of Health (NIH) Career Development Award (K award) applications. Recommendations are provided in the context of common barriers, with a focus on practical solutions. METHODS: Publicly available NIH reporter data were compiled to examine rates of funding for Society of Pediatric Psychology (SPP) members. Barriers that women face when initiating programs of research are described and applied to the field of pediatric psychology. RESULTS: Of current SPP members, 3.9% (n = 50) have ever received an NIH K award. Approximately 88.5% of SPP members identify as women, including 89.0% of SPP K award recipients. A table of person- and systems-level recommendations is provided to offer strategies for mentees, mentors/sponsors, institutions, and national organizations to address the barriers discussed. CONCLUSIONS: By addressing gender-specific barriers to submitting K award applications, we hope to increase the number of women K awardees and support the scientific advancement of pediatric psychology.

Effectiveness and implementation of an electronic health record-integrated digital health intervention for managing depressive symptoms in ambulatory oncology: The My Well-Being Guide study rationale and protocol.

BACKGROUND: Rates of clinically elevated depressive symptoms among ambulatory oncology patients are higher than in the general population and are associated with poorer health-related quality of life. Furthermore, a reduction in depressive symptoms may be associated with improved cancer survival. Several interventions have demonstrated efficacy in reducing oncologic depressive symptoms, including cognitive-behavioral stress management (CBSM). However, more work is needed to understand how to best implement CBSM into practice, such as through stepped-care approaches and digital health interventions linked to electronic health records (EHR). This manuscript presents the protocol of the My Well-Being Guide study, a pragmatic type 1 effectiveness-implementation hybrid study. This trial will test the effectiveness of My Well-Being Guide, a seven-week structured, CBSM-based digital health intervention designed to reduce depressive symptoms. This trial will also evaluate My Well-Being Guide's implementation across two health systems. METHODS: The final sample (N = 4561) will be oncology patients at Northwestern Medicine or University of Miami Health System who are ≥18 years of age; have a cancer diagnosis; elevated depressive symptoms on the Patient-Reported Outcomes Measurement Information System Depression; and primary language is English or Spanish. Data collection will occur at baseline, and 2-, 6-, and 12-months post baseline. Outcome domains include depressive symptoms and implementation evaluation. DISCUSSION: This study may provide valuable data on the effectiveness of our depressive symptom management digital health intervention linked to the EHR and the scalability of digital health interventions in general.

A Call to Action: Using and Extending Human-Centered Design Methodologies to Improve Mental and Behavioral Health Equity.

Mental health disparities directly tie to structural racism. Digital mental health (DMH), the use of technologies to deliver services, have been touted as a way to expand access to care and reduce disparities. However, many DMH fail to mitigate the persistent disparities associated with structural racism that impact delivery (e.g., costs, dependable internet access)-and may even exacerbate them. Human-centered design (HCD) may be uniquely poised to design and test interventions alongside, rather than "for," marginalized individuals. In employing HCD methodologies, developers may proceed with a vested interest in understanding and establishing empathy with users and their needs, behaviors, environments, and constraints. As such, HCD used to mindfully address structural racism in behavioral health care may address shortcomings of prior interventions that have neglected to elevate the voices of marginalized individuals. We argue that a paradigm shift in behavioral health services research is critically needed-one that embraces HCD as a key methodological framework for developing and evaluating interventions with marginalized communities, to ultimately promote more accessible, useful, and equitable care. The current commentary illustrates practical examples of the use of HCD methodologies to develop and evaluate DMH designed with marginalized populations, while also highlighting its limitations and need for even greater inclusivity. Following this, calls to action to learn from and improve upon HCD methodologies will be detailed. Acknowledging potential limitations of current design practices, methodologies must ultimately engage representative voices beyond research participation and invest in their active role as compensated and true collaborators to intervention design.

Sociodemographics, Health Competence, and Transition Readiness Among Adolescent/Young Adult Cancer Survivors.

OBJECTIVE: Fewer than one-third of childhood cancer survivors receive follow-up from an adult provider, and adolescent and young adults (AYAs) from structurally minoritized sociodemographic groups often face health disparities that can impact transition to adult-oriented care. The primary aim of this study was to determine the relation among sociodemographic factors, cumulative effects, and transition beliefs/expectations and goals, and the moderating role of health competence beliefs in AYA survivors of childhood cancer. METHODS: A total of 195 AYAs (aged 15-29) reported sociodemographic information, completed the Transition Readiness Inventory assessing positive beliefs/expectations and goals related to transition, and completed the Health Competence Beliefs Inventory assessing health perceptions, healthcare satisfaction, cognitive competence, and autonomy. A cumulative sociodemographic factor variable was computed to investigate the potential additive effects of multiple sociodemographic factors associated with disparities. T-tests, Pearson correlations, and multivariate linear regressions were used. RESULTS: Cumulative sociodemographic factors were not related to transition readiness, and insurance type was the only factor associated with health competence beliefs and transition readiness, such that AYAs with public insurance reported lower healthcare satisfaction, cognitive competence, and transition goals relative to those with private insurance. There were no interaction effects; however, health competence beliefs were significantly associated with transition beliefs/expectations and goals. CONCLUSION: Public insurance is a barrier to holding positive beliefs/expectations and goals about transition, yet other sociodemographic factors associated with risks for poor transfer were not related to transition readiness. Multi-level interventions to reduce disparities and improve transition readiness should target health competence beliefs and barriers created by insurance.

COVID-19 Exposure and Family Impact Scales for Adolescents and Young Adults.

OBJECTIVE: To understand the impact of the coronavirus disease 2019 (COVID-19) pandemic on adolescents and young adults (AYAs), we adapted the COVID-19 Exposure and Family Impact Scales (CEFIS; Kazak et al., 2021) for AYAs. Here, we report on the development, structure, and psychometric properties of the CEFIS-AYA. METHODS: The CEFIS-AYA was developed by a multidisciplinary, multi-institutional team using a rapid iterative process. Data from 3,912 AYAs from 21 programs at 16 institutions across the United States were collected from May 2020 to April 2021. We examined the underlying structure of the CEFIS-AYA using principal component analysis (PCA), calculated internal consistencies, and explored differences in scores by gender and age. RESULTS: Participants reported exposure to a range of COVID-19-related events (M = 9.08 events, of 28). On the bidirectional 4-point Impact scale, mean item scores were mostly above the midpoint, indicating a slightly negative impact. Kuder-Richardson 20/Cronbach's Alpha was good for Exposure (α = .76) and excellent for Impact (α = .93). PCA identified seven factors for Exposure (Severe COVID-19, Loss of Income, Limited Access to Essentials, COVID-19 Exposure, Disruptions to Activities, Disruptions to Living Conditions, and Designation as an Essential Worker) and five for Impact (Self and Family Relationships, Physical Well-Being, Emotional Well-Being, Social Well-Being, and Distress). Gender and age differences in CEFIS-AYA scores were identified. DISCUSSION: Initial reliability data are strong and support use of the CEFIS-AYA for measuring the effect of the COVID-19 pandemic on AYAs in research and clinical 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.

Contextual Predictors of Engagement in a Tailored mHealth Intervention for Adolescent and Young Adult Cancer Survivors.

BACKGROUND: 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. PURPOSE: 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. METHODS: 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. RESULTS: Self-reported uninterrupted app access (ß = -0.56, p < .001), iPhone (vs. Android) ownership (ß = 0.30, p < .001), and receiving the intervention in the summer (ß = -0.20, p = .01) predicted more active days. Lower depressed mood (ß = -0.30, p = .047) and uninterrupted app access (ß = -0.50, p < .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. CONCLUSIONS: Findings demonstrate the importance of comprehensively assessing and planning for multi-level ecological determinants of mHealth engagement in future trials. CLINICALTRIALS.GOV IDENTIFIER: NCT03363711.

Acceptability and feasibility of survivorship care plans and an accompanying mobile health intervention for adolescent and young adult survivors of childhood cancer.

BACKGROUND: Self-management interventions for adolescent and young adult (AYA) survivors of childhood cancer are needed. The present study reports on the acceptability and feasibility of delivering survivorship care plans (SCPs) and an accompanying app to AYA. PROCEDURE: AYA (n = 224) ages 15-29 who completed treatment for cancer were randomized and received a digital SCP only or an SCP plus a mobile app intended to enhance self-management. For 16 weeks, the app delivered one to two daily messages complementing information in their SCP and tailored based on age, treatment, and health goal. Data are presented on feasibility, self-reported acceptability (including satisfaction and perceived benefits) and its relationship to app engagement (for those in app group), and feedback from qualitative interviews conducted with 10 AYA. RESULTS: The SCP and app proved feasible as evidenced by high recruitment and retention, access to technology, time analysis, moderate app engagement, and minimal technical issues. However, 12% reported never reading the SCP and 8% never used the app. The app and SCP were acceptable to AYA, and SCP acceptability ratings did not differ between groups. For those with the app, acceptability was positively related to message engagement. AYA recommended enhanced individualization and design features of the SCP and app. CONCLUSIONS: Results support the use of tailored SCPs and mobile health interventions for most AYA, as well as the need for further refinement and research. Delivery of SCPs and digital interventions are acceptable and feasible to AYA survivors, and may help promote health-related knowledge and survivorship self-management.

Daily text message assessments of 6-mercaptopurine adherence and its proximal contexts in adolescents and young adults with leukemia: A pilot study.

BACKGROUND: 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. METHODS: AYA prescribed maintenance 6-mercaptopurine (6MP) received daily text message surveys and utilized an electronic pill bottle for 28 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. RESULTS: Eighteen AYA enrolled (M age = 18, range 15-22) and completed study procedures (100% recruitment and retention rates). Adherence survey completion rates were high (M = 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 (>90%). Exploratory analyses showed that AYA were more likely to miss a dose of 6MP on weekends (OR = 2.33, P = .048) and on days when their adherence motivation (OR = 0.28, P = .047) and negative affect (OR = 3.92, P = .02) worsened from their own typical functioning. CONCLUSIONS: 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.

The Needle in the Haystack: Identifying Credible Mobile Health Apps for Pediatric Populations during a Pandemic and beyond.

BACKGROUND: The COVID-19 pandemic has ignited wider clinical adoption of digital health tools, including mobile health apps (mHealth apps), to address mental and behavioral health concerns at a distance. While mHealth apps offer many compelling benefits, identifying effective apps in the crowded and largely unregulated marketplace is laborious. Consumer demand and industry productivity are increasing, although research is slower, making it challenging for providers to determine the most credible and safe apps for patients in need. OBJECTIVES/METHODS: This commentary offers a practical, empirically guided framework and associated resources for selecting appropriate mHealth apps for pediatric populations during the pandemic and beyond. RESULTS: In the first stage, Narrow the target problem, end user, and contender apps. Beginning the search with continuously updated websites that contain expert app ratings can help expedite this process (e.g., Psyberguide). Second, Explore each contender app's: (a) scientific and theoretical support (e.g., are app components consistent with health behavior change theories?), (b) privacy policies, and (c) user experience (e.g., through crowdsourcing feedback about app usability and appeal via social media). Third, use clinical expertise and stakeholder feedback to Contextualize whether the selected app is a good fit for a particular patient and/or caregiver (e.g., by considering age, race/ethnicity, ability, gender, sexual orientation, technology access), including conducting a brief self-pilot of the app. CONCLUSION: Youth are increasingly turning to technology for support, especially during the pandemic, and pediatric psychologists must be primed to recommend the most credible tools. We offer additional recommendations for rapidly disseminating evidence-based apps to the public.

Pediatric Psychosocial Standards of Care in action: Research that bridges the gap from need to implementation.

OBJECTIVE: To describe innovative models of psychosocial care delivery that align with published Standards of Psychosocial Care of Children with Cancer and their Families, in efforts to bridge the divide between research and practice. METHODS: The Mattie Miracle Cancer Foundation, in partnership with the American Psychosocial Oncology Society reviewed 22 letters of intent and 13 full grants and awarded small grants to researchers with high quality projects that aimed to implement any of the published 15 Standards of Care. For three of the highest rated funded research projects, we describe the Standard implemented, the novel research design and implementation strategies, and how the research findings might inform the development, implementation, and dissemination of effective solutions for bridging Standard-to-practice gaps. RESULTS: The first study presented is an innovative eHealth intervention for parents of children with cancer designed to improve family functioning and decrease symptoms of acute distress, anxiety, and posttraumatic stress. The second study addresses the acceptability and feasibility of using daily text message assessments of oral chemotherapy adherence in adolescents and young adults with leukemia, and the third creates a blueprint for providing psychosocial services to siblings, including ways to overcome common implementation barriers. CONCLUSIONS: Several themes emerged from the studies presented, including (1) attention to barriers to previous attempts at implementation; (2) technology's role in delivering care; (3) the need for stakeholder involvement; and (4) consideration for multi-pronged solutions that address heterogeneity in care settings. Next steps for integrating the Standards of Psychosocial Care into clinical practice are discussed.

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.