A Developmental Science Approach to Informing Age Subgroups in Adolescent and Young Adult Cancer Research.

PURPOSE: Adolescent and young adult (AYA; diagnosed ages 15-39) cancer survivors are developmentally heterogenous, and this population consists of at least three distinct theoretically informed subgroups, as follows: adolescents, emerging adults, and young adults. However, there are limited evidence-based recommendations for delineating the validity of these subgroups in cancer-specific research. We sought to inform recommended chronological age ranges for each subgroup based on developmental processes. METHODS: The data were collected using a 2x3 stratified sampling design (on-vs. off-treatment; ages 15-17, 18-25, 26-39) and a cross-sectional survey. AYAs (N = 572) completed three subscales of the Inventory of Dimensions of Emerging Adulthood (identity exploration, experimentation/possibilities, and other-focused), and we used regression tree analyses to identify distinct shifts in mean subscale scores that would indicate unique subgroups. Models included (a) chronological age, (b) chronological age + cancer-related variables, and (c) chronological age + sociodemographic/psychosocial variables as predictors of each developmental measure. RESULTS: The recommended age ranges for AYA survivors receiving active treatment were consistent with prior research as follows: adolescents ages 15-17, emerging adults ages 18-24, and young adults ages 25-39. Models for off-treatment survivors suggested four distinct subgroups: adolescents ages 15-17, emerging adults ages 18-23, and 'younger' (ages 24-32) and 'older' young adults (ages 33-39). No sociodemographic or psychosocial variables meaningfully shifted these recommendations. DISCUSSION: Our results suggest that three developmental subgroups remain appropriate for on-treatment survivors, but a second young adult subgroup (ages 33-39) emerged for off-treatment survivors. Therefore, development disruptions may be more likely to occur or manifest in post-treatment survivorship.

Indicators of developmental status among adolescents and young adults with cancer: Perceived adult status, social milestones, and health-related quality of life.

OBJECTIVE: Developmental disruption contributes to poor psychosocial outcomes among adolescents and young adults (AYAs) with cancer, though indicators of AYAs' developmental status are not well understood. In this study, we describe perceived adult status as a novel developmental indicator and examine its associations with social milestones achievements and health-related quality of life (HRQoL). METHODS: For this secondary analysis, AYAs with cancer were recruited using a 2 (on/off treatment) × 2 [emerging adults (EAs) 18-25 years-old, young adults (YAs) 26-39 years-old] stratified sampling design through an online research panel. Surveys assessed perceived adult status (i.e., self-perception of the extent to which one has reached adulthood), social milestones (marital, child-rearing, employment, educational status), demographic and treatment characteristics, and HRQoL. Generalized linear models tested associations between perceived adult status, social milestones, and HRQoL. RESULTS: AYAs (N = 383; Mage  = 27.2, SD = 6.0) were majority male (56%) and treated with radiation without chemotherapy (37%). Most EAs (60%) perceived they had reached adulthood in some ways; most YAs (65%) perceived they had reached adulthood. EAs who perceived they had reached adulthood were more likely to be married, raising a child, and working than EAs who did not perceive they had reached adulthood. Among EAs, lower perceived adult status was associated with lower HRQoL when accounting for social milestones. Among YAs, perceived adult status was not associated with social milestones and neither perceived adult status nor social milestones were associated with HRQoL. CONCLUSIONS: Perceived adult status may be a useful developmental indicator for EAs with cancer. Findings highlight unique developmental needs of EAs and utility of patient perspectives for understanding developmental outcomes.

Feasibility and Acceptability of the Promoting Resilience in Stress Management-Parent (PRISM-P) Intervention for Caregivers of Children with Craniofacial Conditions.

OBJECTIVES: Few evidence-based psychosocial programs exist within craniofacial care. This study (a) assessed feasibility and acceptability of the Promoting Resilience in Stress Management-Parent (PRISM-P) intervention among caregivers of children with craniofacial conditions and (b) described barriers and facilitators of caregiver resilience to inform program adaptation. DESIGN: In this single-arm cohort study, participants completed a baseline demographic questionnaire, the PRISM-P program, and an exit interview. PARTICIPANTS: Eligible individuals were English-speaking legal guardians of a child <12-years-old with a craniofacial condition. INTERVENTION: PRISM-P included 4 modules (stress-management, goal-setting, cognitive-restructuring, meaning-making) delivered in 2 one-on-one phone or videoconference sessions 1-2 weeks apart. MAIN OUTCOME MEASURES: Feasibility was defined as >70% program completion among enrolled participants; acceptability was defined as >70% willingness to recommend PRISM-P. Intervention feedback and caregiver-perceived barriers and facilitators of resilience were summarized qualitatively. RESULTS: Twenty caregivers were approached and 12 (60%) enrolled. The majority were mothers (67%) of a child <1-year-old diagnosed with a cleft lip and/or palate (83%) or craniofacial microsomia (17%). Of these, 8 (67%) completed PRISM-P and 7 (58%) completed interviews; 4 (33%) were lost-to-follow-up before PRISM-P and 1 (8%) before the interview. Feedback was highly positive, with 100% willing to recommend PRISM-P. Perceived barriers to resilience included uncertainty about their child's health; facilitators included social support, parental identity, knowledge, and control. CONCLUSIONS: PRISM-P was acceptable among caregivers of children with craniofacial conditions but not feasible based on program completion rates. Barriers and facilitators of resilience support the appropriateness of PRISM-P for this population and inform adaptation.

Seeking virtual support: Digital technology use in adolescent and young adults with advanced cancer.

BACKGROUND: A cancer diagnosis, especially advanced cancer, interferes with adolescent/young adult (AYA) peer relationships. AYAs increasingly use digital technologies (i.e., social media, video games) as a social instrument; little is known about the role of digital technologies in the AYA cancer experience. The objective of this analysis was to describe the use and impact of digital technologies among AYAs with advanced cancer. PROCEDURE: As part of the "Exploring the Concept of a 'Good Death'" study, semi-structured interviews were conducted with 32 English-speaking AYAs (14-25 years) with advanced cancer (relapsed/refractory disease, estimated survival <50%). Interviews were audio recorded, deidentified, and transcribed verbatim. Questions focused on communication and sources of psychosocial support. Directed content analysis was used for codebook creation. Three reviewers completed transcript coding and reconciled discrepancies. Thematic analysis identified hierarchical themes. The present analysis focused on the specific theme of "digital technologies as a support mechanism." RESULTS: When asked about sources of support, social media and multiplayer online games were most often recognized by AYAs. Three themes emerged regarding the role of digital technologies: distraction, maintaining existing peer support, and connecting with peers with cancer. Two AYAs acknowledged negative consequences of social media. CONCLUSIONS: AYAs with advanced cancer cite digital technologies as a mechanism for maintaining and seeking peer support. Digital technologies may be leveraged to provide psychosocial support for AYAs with advanced cancer.

Quality of Life in Adolescents and Young Adults: The Role of Symptom Burden.

CONTEXT: Adolescents and young adults (AYAs) with cancer report worse health-related quality of life (HRQOL) than other age groups. Symptom burden is a modifiable predictor of HRQOL. OBJECTIVES: The objective of this study was to identify which symptoms are most burdensome to AYAs with advanced cancer. METHODS: In this observational study, English-speaking individuals aged 12-25 years undergoing treatment for advanced cancer completed assessments of symptom burden (Memorial Symptom Assessment Scale) and HRQOL (Pediatric Quality of Life Inventory Generic Form and Cancer Module; minimal clinically important difference 4.4). We dichotomized participants as having low (<7) or high (≥7) symptom prevalence. Mixed regression models estimated HRQOL differences between groups. For individual symptoms, unadjusted mixed models estimated HRQOL reductions. RESULTS: N = 58 AYAs completed baseline surveys. The median age was 17 years (IQR 15-19), 58% were male, 59% identified as white, and 44% were diagnosed with leukemia/lymphoma. High symptom prevalence was associated with a mean generic HRQOL 7 points lower (95% CI: -11, -3; P < 0.01) and cancer-specific HRQOL score 12 points lower (95% CI: -17, -7; P < 0.01) than low symptom prevalence. The most prevalent symptoms were fatigue (71%), pain (58%), and difficulty sleeping (58%). Fatigue (-8), difficulty concentrating (-7), and mouth sores (-6) were associated with the greatest generic HRQOL score reductions. Dysphagia (-12), difficulty concentrating (-12), and sadness (-11) were associated with the greatest cancer-specific HRQOL score reductions. CONCLUSION: The symptom experience among AYAs with advanced cancer is unique. Separate evaluation of AYA's symptoms may optimize management and improve HRQOL.

Assessing Aspects of Social Relationships in Youth Across Middle Childhood and Adolescence: The NIH Toolbox Pediatric Social Relationship Scales.

OBJECTIVE: Social relationships are a critical context for children's socioemotional development and their quality is closely linked with concurrent and future physical and emotional wellbeing. However, brief self-report measures of social relationship quality that translate across middle childhood, adolescence, and adulthood are lacking, limiting the ability to assess the impact of social relationships on health outcomes over time. To address this gap, this article describes the development and testing of the National Institutes of Health (NIH) Toolbox Pediatric Social Relationship Scales, which were developed in parallel with the previously-reported Adult Social Relationship Scales. METHODS: Item sets were selected from the NIH Toolbox adult self-report item banks in the domains of social support, companionship, and social distress, and adapted for use in preadolescent (ages 8-11 years) and adolescent (ages 12-18 years) cohorts. Items were tested across a U.S. community sample of 1,038 youth ages 8-18 years. Classical test and item response theory approaches were used to identify items for inclusion in brief unidimensional scales. Concurrent validity was assessed by comparing resultant scales to established pediatric social relationship instruments. RESULTS: Internal reliability and concurrent validity were established for five unique scales, with 5-7 items each: Emotional Support, Friendship, Loneliness, Perceived Rejection, and Perceived Hostility. CONCLUSIONS: These brief scales represent developmentally appropriate and valid instruments for assessing the quality of youth social relationships across childhood and adolescence. In conjunction with previously published adult scales, they provide an opportunity for prospective assessment of social relationships across the developmental spectrum.

The Promoting Resilience in Stress Management (PRISM) intervention for adolescents and young adults receiving hematopoietic cell transplantation: a randomized controlled trial protocol.

BACKGROUND: Psychological distress is prevalent among adolescents and young adults (AYAs) receiving hematopoietic cell transplantation (HCT). The Promoting Resilience in Stress Management (PRISM) intervention is a resilience-coaching program that has been shown to mitigate distress and improve quality of life among AYAs receiving chemotherapy for newly diagnosed or advanced cancer. This article describes the protocol of an ongoing randomized-controlled trial (RCT) examining the efficacy of PRISM among AYAs receiving HCT for cancer and/or blood disorders. METHODS/DESIGN: The goal of this multi-site, parallel, RCT is to evaluate the effect of PRISM compared to psychosocial usual care (UC) among AYAs receiving HCT. Our primary hypothesis is that AYAs who receive PRISM will report lower depression and anxiety 6-months following enrollment compared to those who receive UC. The PRISM program includes four scripted coaching sessions targeting skills in stress-management, goal setting, cognitive-restructuring, and meaning-making, followed by a facilitated family meeting. Sessions are delivered one on one, 1-2 weeks apart, in-person or via videoconference. We aim to recruit 90 AYAs from 4 US pediatric AYA oncology centers. Eligible AYAs are aged 12-24 years; receiving HCT for malignancy or a bone marrow failure syndrome associated with cancer predisposition; < 4 weeks from their HCT date; able to speak English and read in English or Spanish; and cognitively able to complete sessions. Enrolled AYAs are randomized 1:1 within each site to receive PRISM+UC or UC alone. AYAs on both study-arms complete patient-reported outcome surveys at baseline, 3- and 6-months. Age-valid instruments assess depression and anxiety, overall and cancer-specific health-related quality of life, symptom burden, resilience, and hope. Covariate-adjusted regression models will compare AYA-reported depression and anxiety at 6-months in the PRISM versus UC groups. Secondary and exploratory objectives include assessments of PRISM's cost-effectiveness and its impact on (i) parent and caregiver quality of life and mental health, (ii) pharmaco-adherence to oral graft-versus-host disease (GVHD) prophylaxis, (iii) biologic outcomes such as transplant engraftment and graft-versus-host disease, and (iv) biomarkers of stress such as heart rate variability and the Conserved Transcriptional Response to Adversity (CTRA) gene expression profile. DISCUSSION: If successful, this study has the potential to address a critical gap in whole-patient care for AYAs receiving HCT. TRIAL REGISTRATION: ClinicalTrials.gov Identifier NCT03640325 , August 21, 2018.

Caregiver perceived financial strain during pediatric cancer treatment: Longitudinal predictors and outcomes.

OBJECTIVE: Previous work has examined family income and material hardship in pediatric cancer. However, few studies have focused on perceived financial strain (PFS), or the extent to which caregivers perceive financial stress and worry related to their child's cancer. The current study addresses this gap by a) describing the trajectory of perceived financial strain over the first year of pediatric cancer treatment; b) examining sociodemographic predictors of that trajectory; and c) examining associations between PFS and caregiver and child psychological adjustment. METHOD: Primary caregivers of children (Mage = 6.31) recently diagnosed with cancer provided 12 monthly reports of their own perceived financial strain and depression, anxiety, and posttraumatic stress symptoms, as well as their child's internalizing and externalizing symptoms. Data were analyzed using multilevel models. RESULTS: Caregiver PFS decreased over the first year of treatment. Nonmarried caregivers and those with lower income reported higher levels of PFS over time. Caregivers with higher PFS relative to other caregivers and relative to their own average PFS in a given month experienced psychological maladjustment. PFS was not associated with child adjustment. CONCLUSIONS: On average caregivers perceive less financial strain over the first year of treatment; however, nonmarried caregivers and those with lower income are at risk for higher PFS over time, and PFS may contribute to psychological maladjustment in caregivers. Caregivers may benefit from psychosocial support focused on managing financial strain. (PsycInfo Database Record (c) 2022 APA, all rights reserved).

A novel combined resilience and advance care planning intervention for adolescents and young adults with advanced cancer: A feasibility and acceptability cohort study.

BACKGROUND: Few evidence-based psychosocial programs have been tested among adolescents and young adults (AYAs) with advanced cancer (AC), and early advance care planning (ACP) in this population is rare. The authors aimed to determine the feasibility and acceptability of 1) delivering an established resilience-coaching program, and 2) integrating ACP into that program, among AYAs with AC. METHODS: Eligible AYAs were 12 to 24 years old, diagnosed with advanced cancer (recurrent/refractory disease or a diagnosis associated with <50% survival) and fluent in English. The Promoting Resilience in Stress Management-Advanced Cancer (PRISM-AC) program included PRISM's standard sessions targeting stress-management, goal-setting, cognitive-restructuring, and meaning-making, delivered 1:1, 1 to 2 weeks apart, plus a new session involving elements of the AYA-specific Voicing My Choices ACP guide. Participants completed surveys at baseline and 12 weeks, and exit interviews following study completion. Feasibility was defined as ≥70% completion of 1) standard 4-session PRISM and 2) the new ACP session among those completing standard PRISM. Acceptability was defined qualitatively. Trajectories of patient-reported anxiety, depression, and hope were examined descriptively. RESULTS: Of 50 eligible, approached AYAs, 26 (52%) enrolled and completed baseline surveys. The AYAs had a mean age of 16 years (SD = 2.7 years), and the majority were male (73%) and White/Caucasian (62%). Twenty-two AYAs (85%) completed standard PRISM, and of those, 18 (82%) completed the ACP session. Feedback was highly positive; 100% and 91% described the overall and ACP programs as valuable, respectively. Anxiety, depression, and hope were unchanged after the program. CONCLUSIONS: Resilience coaching followed by integrated ACP is feasible and acceptable for AYAs with AC. Participating did not cause distress or decrease hope. LAY SUMMARY: Advance care planning (ACP) among adolescents and young adults (AYAs) with advanced cancer can be difficult to introduce. We investigated whether it is feasible and acceptable to integrate ACP into an existing resilience-coaching program for AYAs. In this cohort study of 26 AYAs with advanced cancer, we found the Promoting Resilience in Stress Management-Advanced Cancer program to be feasible (≥70% intervention-completion) and highly acceptable (positive post-participation feedback, no evidence of participant-distress). We conclude that an intervention integrating resilience coaching and ACP is feasible and acceptable among AYAs with advanced cancer.

Stress and psychological adjustment in caregivers of children with cancer.

OBJECTIVE: To examine effects of stress on caregiver psychological adjustment during the first year of pediatric cancer. METHOD: Caregivers (N = 159) of children with cancer completed monthly questionnaires assessing domains of caregiver psychological adjustment (depression, anxiety, and posttraumatic stress symptoms) and stress (general life stress, treatment-related stress, caregiver perceptions of treatment intensity and life threat). Effects of stress were assessed at two levels to examine whether within-person changes in stress predicted concurrent changes in caregiver adjustment and whether average stress was associated with between-person differences in caregiver adjustment trajectories. RESULTS: Overall, higher levels of stress factors were associated with poorer caregiver adjustment at both the between- and within-person levels, with high average levels of treatment-related stress and general life stress emerging as leading predictors of worse adjustment. CONCLUSIONS: Both types of stressors, those directly related as well as unrelated to a child's cancer, contribute uniquely to caregiver distress. Caregiver distress is impacted by both overall levels of stress over time as well as month-to-month changes in stress. Implications for informing care for at-risk caregivers are discussed. (PsycInfo Database Record (c) 2021 APA, all rights reserved).

Relationships Between Adolescents with Cancer and Healthy Peers: A Qualitative Study.

Purpose: Despite the developmental relevance and role in social support, research on relationships between adolescents with cancer and healthy peers is limited. To address this gap, we aimed to describe adolescents' perceptions of their friendships during the 1st year following a cancer diagnosis, including relationship changes, factors that promote/inhibit relationships, and definitions and experiences of peer support. Methods: Eligible adolescents were 12-20 years old, <1 year of a new cancer diagnosis, and English speaking. Participants completed 1:1 semistructured interviews that were analyzed using inductive content analysis. Results: Fourteen adolescents enrolled and completed interviews (mean [M]age = 14.8, standard deviation [SD] = 1.8; M = 6.3 months postdiagnosis, SD = 3.2 months). Domains included (1) shifting relationships, (2) staying connected, (3) making it hard to stay close, and (4) showing me they care. Relationship changes were positive and negative, and many described a process of recognizing true friends. Staying connected with peers through communication, technology, and feeling up to date promoted closeness, while distance, treatment-related restrictions, and friends' discomfort were hindrances. Adolescents defined supportive friends as those who were there for them, checked in often, and gave them gifts. Conclusion: Despite relationship changes, adolescents with cancer desire connection with peers during treatment and perceive that healthy peers provide valuable support. Supporting connectedness to healthy peers during treatment may be a promising future direction to mitigate social disruption and promote well-being.

Sexual Activity and Substance Use Among Adolescents and Young Adults Receiving Cancer Treatment: A Report from the PRISM Randomized Controlled Trial.

Purpose: Despite health implications, sexual activity and substance use among adolescents and young adults (AYAs) receiving cancer treatment are understudied. Methods: AYAs 12-25 years of age participated in a randomized controlled trial testing the efficacy of a resilience intervention. They were fluent in English and either diagnosed with new cancer (NC) or advanced cancer (AC). At baseline and 6 months, participants self-reported sexual activity and substance use. We describe the percentage of AYAs who endorsed each behavior and a count of total behaviors endorsed by each respondent. We describe frequencies by sex/gender (male/female), age (<18/≥18), and disease status (AC/NC). Results: Participants (N = 92) were majority white/Caucasian (57%), 12-17 years old (73%), and diagnosed with leukemia/lymphoma (62%); 32% had AC. Responses were not associated with the intervention; hence, we summarized data from the whole cohort. At both time points, median behavior endorsed was 2. At baseline and follow-up, 87% and 81% endorsed at least 1 behavior: 13% and 15% were sexually active, 75% and 73% of whom used birth control inconsistently; and 22% and 22% reported drinking alcohol, 31% and 27% using prescription opioids/sedatives, 19% and 22% using other drugs, and 9% and 7% using tobacco. Young adults engaged in most behaviors more frequently than adolescents (e.g., 48% vs. 12% alcohol at baseline); males engaged in sexual activity more frequently than females (e.g., 20% vs. 5% sexually active at baseline); and AYAs with NC engaged in most behaviors more frequently than those with AC (18% vs. 0% sexually active at baseline). Conclusion: AYAs engage in sexual activity and substance use during cancer treatment.