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.

Association between family history of suicide attempt and neurocognitive functioning in community youth.

BACKGROUND: Suicidal behavior is highly familial. Neurocognitive deficits have been proposed as an endophenotype for suicide risk that may contribute to the familial transmission of suicide. Yet, there is a lack of research on the neurocognitive functioning of first-degree biological relatives of suicide attempters. The aim of the present study is to conduct the largest investigation to date of neurocognitive functioning in community youth with a family history of a fatal or nonfatal suicide attempt (FH). METHODS: Participants aged 8-21 years from the Philadelphia Neurodevelopmental Cohort completed detailed clinical and neurocognitive evaluations. A subsample of 501 participants with a FH was matched to a comparison group of 3,006 participants without a family history of suicide attempt (no-FH) on age, sex, race, and lifetime depression. RESULTS: After adjusting for multiple comparisons and including relevant clinical and demographic covariates, youth with a FH had significantly lower executive function factor scores (F[1,3432] = 6.63, p = .010) and performed worse on individual tests of attention (F[1,3382] = 7.08, p = .008) and language reasoning (F[1,3387] = 5.12, p = .024) than no-FH youth. CONCLUSIONS: Youth with a FH show small differences in executive function, attention, and language reasoning compared to youth without a FH. Further research is warranted to investigate neurocognitive functioning as an endophenotype for suicide risk. Implications for the prevention and treatment of suicidal behaviors are discussed.

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.

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.

Parental mental health screening in the NICU: a psychosocial team initiative.

OBJECTIVE: About 40-50% of parents with children admitted to Neonatal Intensive Care Units (NICU) experience clinically significant levels of depression, anxiety, and trauma. Poor parental mental health can negatively influence parent-child interactions and child development. Therefore, early identification of parents at-risk for clinical distress is of paramount importance. METHODS: To address this need, the psychosocial team, including psychology and psychiatry, at a large, level 4 Neonatal Intensive Care Unit (NICU) developed a quality-improvement initiative to assess the feasibility of screening parents and to determine rates of depression and trauma in the unit. RESULTS: About 40% of mothers and 20% of fathers were screened between 2 weeks of their child's hospitalization. About 40-45% of those parents endorsed clinically significant levels of depression and anxiety symptoms. CONCLUSIONS: Recommendations for enhancing the feasibility and effectiveness of this process are discussed and considerations for future clinical and research endeavors are introduced.

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.

Parent-Adolescent Agreement About Adolescents' Suicidal Thoughts.

: media-1vid110.1542/5972300121001PEDS-VA_2018-1771Video Abstract OBJECTIVES: To examine agreement between parent and adolescent reports of adolescents' suicidal thoughts and explore demographic and clinical factors associated with agreement in a large community sample. METHODS: Participants included 5137 adolescents 11 to 17 years old (52.1% girls; 43.0% racial minority) and a collateral informant (97.2% parent or stepparent) from the Philadelphia Neurodevelopmental Cohort. Families were recruited from a large pediatric health care network. Adolescents and parents completed a clinical interview that included questions about adolescents' lifetime suicidal thoughts. RESULTS: Agreement was moderate for thoughts of killing self (κ = 0.466) and low for thoughts of death or dying (κ = 0.171). Discrepancies stemmed from both parental unawareness of suicidal thoughts reported by adolescents and adolescent denial of suicidal thoughts reported by parents. Fifty percent of parents were unaware of adolescents' thoughts of killing themselves, and 75.6% of parents were unaware of adolescents' recurrent thoughts of death. Forty-eight percent of adolescents denied thoughts of killing themselves, and 67.5% of adolescents denied thoughts of death reported by parents. Several demographic (eg, age) and clinical (eg, treatment history) characteristics were associated with agreement. CONCLUSIONS: Early identification and intervention hinge on reliable and valid assessment of suicide risk. The high prevalence of parental unawareness and adolescent denial of suicidal thoughts found in this study suggests that many adolescents at risk for suicide may go undetected. These findings have important clinical implications for pediatric settings, including the need for a multi-informant approach to suicide screening and a personalized approach to assessment based on empirically derived risk factors for unawareness and denial.