Quality of life of caregivers at the end of their child's pediatric cancer treatment: cancer-specific worry and material hardship.

OBJECTIVE: Emerging research suggests that completion of pediatric cancer treatment can be challenging for caregivers given shifting roles and responsibilities. Lower caregiver quality of life (QOL) has been associated with cancer-related variables, higher cancer caregiving strain, and more household material hardship during pediatric cancer treatment. Caregiver QOL at the end of treatment has not been fully investigated but has implications for child and family well-being. Using a psycho-oncology framework, this study aimed to understand the cumulative burden of household material hardship and cancer-related factors on caregiver QOL at the end of treatment. METHODS: Caregivers (N = 143) of children (Mage=10.51 years) within 1 year of ending active cancer treatment completed self-report questionnaires assessing their QOL, cancer-specific worry, and material hardship (e.g., housing, insurance). Total months of active cancer treatment were extracted from the medical record. Hierarchical linear regression was used to test the relative effects of length of treatment, material hardship, and cancer-specific worry on caregiver QOL. RESULTS: Cancer-specific worry was significantly associated with and accounted for significant variance in caregiver QOL, above and beyond the length of treatment and material hardship. Caregivers who endorsed more cancer-specific worry had poorer QOL. Material hardship was also significantly associated with caregivers' QOL, but length of treatment was not. CONCLUSIONS: Caregivers with sufficient resources and less worry about cancer have higher QOL. Findings highlight the importance of end-of-treatment screening of caregivers' subjective cancer-specific worry in addition to material hardship, irrespective of their cancer-related stressors, for ongoing psychosocial support.

Can extending time between vital sign checks improve sleep in hematopoietic stem cell transplant patients? Testing feasibility, acceptability, and preliminary efficacy.

BACKGROUND: Patients undergoing hematopoietic stem cell transplant (HSCT) experience barriers to quality sleep. Frequent vital sign checks are necessary early posttransplant given risk of complications but can disrupt sleep. This study tested feasibility and acceptability of extending time between checking vitals (EVs) from every 4 to every 6 h to improve sleep. PROCEDURE: HSCT patients ages 8-21 years (N = 50, mean age = 14.06, SD = 3.58) and their caregivers were enrolled 1-2 days prior to transplant, and 40 patients completed the 15-day study (NCT04106089). Patients wore an actigraph to estimate sleep and provided self- and caregiver-report of sleep. Sleep was observed for nights 0 to +4 posttransplant, and patients were then randomized to EVs either Days +5 to +9 or +10 to +14. Patients were assessed daily for medical eligibility to receive EVs; on days patients were eligible, nightshift nurses (N = 79) reported EV acceptability. RESULTS: Of 200 potential nights for EVs (5 nights x 40 patients), patients were eligible for EVs on 126 nights (63% of eligible nights), and patients received EVs on 116 (92%) of eligible nights. Most patients received EVs ≥3 nights (n = 26, 65%, median = 3 nights). Most patients (85%), caregivers (80%), and nurses (84%) reported that patients used the additional 2 h during EVs for sleep, with reporters indicating moderate to high acceptability. There was preliminary evidence of efficacy indicated by caregiver-reported sleep disturbance and actigraphy-estimated improvements in sleep efficiency during EVs. CONCLUSION: Extending time between vitals checks is highly acceptable to patients, caregivers, and nurses, and may offer a feasible approach to improve sleep in pediatric HSCT.

An Updated Equitable Model of Readiness for Transition to Adult Care: Content Validation in Young People With Sickle Cell Disease.

Importance: Despite elevated health risks during young adulthood, many adolescents and young adults with serious health care needs face barriers during the transfer to an adult specialty practitioner, and health disparities may occur during the transition. Objective: To validate the content of an updated Social-Ecological Model of Adolescent and Young Adult Readiness for Transition to Promote Health Equity (SMART-E) in a group of adolescents and young adults with sickle cell disease (SCD) and their supports. Design, Setting, and Participants: Health equity framework components were reviewed. Systems of power (eg, institutional and practitioner bias) and environments or networks (eg, peer or school support) were added as SMART-E preexisting factors, and health literacy was included within readiness factors. Adolescents and young adults aged 16 to 29 years with SCD, caregivers, and practitioners participated in this convergent, mixed-methods study within Children's Hospital of Philadelphia between January and August 2022. Main Outcomes and Measures: Content validity was assessed through nominations of top 3 most important transition barriers prior to interviews and focus groups, ratings on importance of SMART-E factors (0-4 scale; ratings >2 support validity) after interviews and focus groups, nominations of 3 most important factors for transition and for health equity, and qualitative content analysis of interview transcripts. Results: The study enrolled 10 pediatric adolescents and young adults (mean [SD] age, 18.6 [2.9] years; 4 female and 6 male), 10 transferred adolescents and young adults (mean [SD] age, 22.9 [2.1] years; 8 female and 2 male), 9 caregivers (mean [SD] age, 49.8 [8.7] years; 5 female and 4 male), and 9 practitioners (mean [SD] age, 45.6 [10.5] years; 8 female and 1 male). Quantitative ratings supported the content validity of SMART-E and met established criteria for validity. Systems of power was the most endorsed transition barrier (14 of 38 participants) reported prior to interviews and focus groups. After the interview, participants endorsed all SMART-E factors as important for transition, with new factors systems of power and environments and networks rated at a mean (SD) 2.8 (1.23) and 3.1 (0.90), respectively, on a 0 to 4 scale of importance. The most important factors for transition and equity varied by participant group, with all factors being endorsed, supporting the comprehensiveness of SMART-E. Qualitative data corroborated quantitative findings, further supporting validity, and minor modifications were made to definitions. Conclusions and Relevance: SMART-E obtained initial content validation with inclusion of health equity factors for adolescents and young adults with SCD, caregivers, and practitioners. The model should be evaluated in other populations of adolescents and young adults with chronic disease.

Caregiver condition management and family functioning after pediatric cancer treatment: Moderation by race and ethnicity.

OBJECTIVE: End of pediatric cancer treatment requires family adjustment. Caregivers who struggle to incorporate the child's condition into family life have poorer family outcomes. To better understand factors that contribute to successful transition off active childhood cancer treatment, we sought to examine caregiver perceived management ability of the youth's condition and family functioning as predictors of caregiver distress, evaluate family functioning as a mediator between perceived ability and distress, and explore race and ethnicity as a moderator between perceived ability and family functioning. METHODS: Caregivers (N = 141) completed measures assessing family management (condition management ability; CMA), family functioning, and distress as part of a clinical education and screening program within 1 year of the end of treatment. Bias-corrected bootstrap regression analyses examined mediation and moderated mediation models with patient race and ethnicity as the moderator. RESULTS: The overall mediation model was statistically significant for CMA→family functioning→distress. Race and ethnicity moderated the relationship between CMA and family functioning, but the full model was not significant. CMA was related to family functioning for caregivers of non-Hispanic white youth, but not caregivers of Hispanic youth. Family functioning was related to distress for all caregivers. CONCLUSIONS: Family functioning serves as an initial intervention target to reduce caregiver distress. Caregiver perceived management ability of their child's condition is a meaningful predictor of family functioning and distress for caregivers of non-Hispanic white youth, yet CMA may be limited as a screener of family management patterns for diverse populations, and other family management dimension may be more applicable.

Pediatric psychosocial preventative health model: Achieving equitable psychosocial care for children and families.

OBJECTIVE: The Pediatric Psychosocial Preventative Health Model (PPPHM) is a three-tier model of family psychosocial risk used to guide intervention approaches in pediatric healthcare settings. Screening all families to determine levels of risk supports equitable care. We review evidence from papers using the Psychosocial Assessment Tool (PAT), a brief caregiver-report measure of family psychosocial risk with scores that map to the PPPHM, to characterize the distribution of risk. We predict that across study samples the distribution of risk on the PPPHM will be approximately 60% universal (low), 30% targeted (moderate), and 10% clinical (high). METHOD: We conducted a scoping review searching PubMed, MEDLINE, Emcare, and PsycInfo for articles that reported PPPHM data using the PAT. RESULTS: Forty-seven samples from 43 papers were included, reporting on patients with 17 conditions. PPPHM scores were highly consistent with median percentages of 55% universal, 34% targeted, and 11% clinical. There is evidence of higher levels of risk for samples using the Spanish version of the PAT, from weight management programs and with families who have children with autism spectrum disorder. CONCLUSIONS: The data demonstrate consistent patterns of psychosocial risk distributions on the PPPHM and support implementation of universal family psychosocial risk screening, followed by delivery of personalized care based on level of risk. Screening all families promotes health equity in pediatric health care settings by normalizing the importance of understanding psychosocial risk and resiliencies and assuring family input in the delivery of integrated psychosocial care. (PsycInfo Database Record (c) 2023 APA, all rights reserved).

Advancing family science and health equity through the 2022-2026 National Institute of Nursing Research strategic plan.

BACKGROUND: Consistent with the National Institute of Nursing Research's mission of leading nursing research to address current health challenges, the new Strategic Plan identifies five research lenses: health equity, social determinants of health, population and community health, prevention and health promotion, and systems and models of care. Family research, central to nursing research and practice, is the cornerstone of social ecology and represents a critical intersection of social and structural determinants of health. PURPOSE: We argue why family health is essential to the 2022-2026 Strategic Plan and how the lenses can strengthen family research. METHODS: Drawing from collective expertise and existing literature in family research, sociology, psychology, and nursing science, the authors present a new conceptual model that integrates structural racism and heteropatriarchy to examine the salience of family structure statuses for family outcomes and discuss approaches to research design, empirical measurement, and interpretation in order to bring this new model into practice. DISCUSSION: The NINR Strategic Plan has the potential to dismantle structures that perpetuate racism and health inequity within and across family structures. An underaddressed research area under the new Strategic Plan relates to how social determinants of health influence and are influenced by families. CONCLUSION: We challenge all investigators, not just family scientists, to expand the scope of their research to conceptualize the role of family on health inequities.

Psychosocial needs of pediatric cancer patients and their caregivers at end of treatment: Why psychosocial screening remains important.

OBJECTIVE: The pediatric cancer Psychosocial Standards of Care calls for psychosocial screening across the cancer trajectory. The current study aims to describe pediatric cancer family needs at the end of treatment (EOT) and summarize feedback on a clinical EOT screening and education program. METHODS: During a clinic visit, families attended an education session regarding general EOT considerations and caregivers and youth aged 11+ years completed questionnaires. Scores were coded for clinical significance based on cutoff scores per questionnaire, and clinical significance frequencies were calculated. Caregivers provided qualitative feedback on the EOT program via an open-ended prompt. RESULTS: Screening was completed by 151 families. Ninety-four patients (67.1%) endorsed risk by self- or proxy-report in at least one domain. Across all patient age groups, a symptom of neurocognitive functioning was the most frequently endorsed risk, including executive functioning, sustained focused, and thinking slower than others. For caregivers, 106 (74.1%) endorsed risk in at least one domain, with concerns for ability to manage their child's medical condition as the most frequent endorsement. Families were agreeable to an EOT program with many caregivers advocating for receiving this program earlier. CONCLUSIONS: Both patients and caregivers experienced clinically significant needs that require intervention at EOT. While patients are experiencing neurocognitive effects and distress, their caregivers are balancing management of their own distress with management of their child's needs during a transition to decreased support from the medical team. The findings affirm the need for systematic screening at EOT and anticipatory guidance for off treatment expectations.

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.

Development and validation of a measure of adolescent and young adult goal-based quality of life (MAYA-GQOL).

PURPOSE: We developed and validated a measure assessing quality of life (QOL) through importance, attainability, and discrepancy of life goals among adolescents and young adults (AYA) with and without cancer. A specific goal-based QOL measure for AYA fills a critical gap in knowledge for AYA who are at a unique life stage, which may include shifts in priorities and goals. METHODS: Through review of our existing AYA databases on goals, the literature, and cognitive interviews we developed the MAYA-GQOL. Items were administered to AYA with cancer (on/off treatment) (n = 124) and healthy AYA controls (n = 103) aged 15-29 years old. Psychometric analyses for comparison with existing QOL measures and discrepancies in perceived importance/attainability of goals were examined. RESULTS: An item pool of 700 goals, based on prior research, was refined to 173 goals across nine categories: academic, administrative, body, health, job, leisure, interpersonal, intrapersonal, and religion. Validation between the MAYA-GQOL and existing QOL measures was supported. AYA survivors reported fewer overall current goals and fewer administrative, interpersonal, leisure, and religious goals. AYA survivors rated body goal importance significantly higher than healthy controls and intrapersonal goal importance significantly lower. Little discrepancy in importance and attainability across AYA was found. CONCLUSIONS: The MAYA-GQOL represents an innovative way of measuring QOL among AYA by focusing on the relative importance, attainability, and discrepancy of developmentally appropriate goals. The MAYA-GQOL can identify areas of resilience and competence via assessment of important and attainable goals and can further assess how AYA with chronic illness are functioning relative to peers on goal domains relevant to the AYA developmental period.

Health-Related Quality of Life at Diagnosis for Pediatric Thyroid Cancer Patients.

CONTEXT: Pediatric thyroid cancer (TC) incidence rates are increasing, yet TC has one of the highest survival rates. Despite increased prevalence, little is known about youth adjustment to TC, particularly compared to other pediatric cancers. OBJECTIVE: The current study sought to describe health-related quality of life (HRQoL) in pediatric TC patients early after diagnosis compared to other pediatric cancer patients and healthy youth and examine predictors of HRQoL. METHODS: Pediatric TC patients (ages 8.5-23.4 years) and their caregivers from a pediatric thyroid center completed psychosocial questionnaires as part of a clinic-based screening program around time of surgery. TC HRQoL was compared to other pediatric cancer and healthy youth reported norms. Clinical and demographic data extracted from the medical record were examined for predictors of HRQoL. The main outcome measures included the Pediatric Quality of Life Inventory (PedsQL) and Distress Thermometer. RESULTS: Findings evidenced significantly higher HRQoL for TC patients than other pediatric cancers for all but emotional and school functioning. Compared to healthy youth, TC patients reported significantly lower functioning, except comparable social functioning. No significant differences in HRQoL were identified based on disease severity, thyroid disease history, or treatment. Patient distress was associated with HRQoL. CONCLUSION: The findings suggest general resilience in TC patients compared to youth with other cancers, yet worse HRQoL than peers. Early universal screening is warranted due to a short TC treatment regimen. If administrative barriers preclude comprehensive screening, the single-item Distress Thermometer may identify patients for further comprehensive screening.

Advancing health equity in pediatric cancer through implementation of universal family psychosocial risk screening.

BACKGROUND: Unaddressed psychosocial risks may contribute to disparities in cancer care outcomes and may be addressed by early psychosocial risk screening. In a study implementing universal family psychosocial risk screening in 18 children's cancer programs in the United States, parents, clinicians, and organizational leaders described the importance of universal screening to health equity. PURPOSES: The purposes of this study were to (1) describe the perspectives of parents, clinicians, and organizational leaders regarding the importance of universal family psychosocial risk screening in childhood cancer care and (2) identify barriers and facilitators to improving health equity and decreasing health disparities in childhood cancer through universal family psychosocial screening. METHODS: Nineteen participants (parent advocates, clinicians, leaders in professional organizations and healthcare policy) were interviewed. Directed content analysis was used to identify thematic descriptions. RESULTS: Theme 1: Personal (individual child and family) and systemic barriers to health care contribute to health disparities and can be identified by universal family psychosocial risk screening in pediatric cancer. Theme 2: Universal family psychosocial risk screening in pediatric cancer creates the opportunity for health equity through personalized psychosocial care. Theme 3: Recognition of health inequities and guidance from the Standards of Psychosocial Care for Children with Cancer and their Families suggest that clinicians and healthcare systems are ethically obligated to screen, provide resources, and advocate for services to meet identified needs. CONCLUSIONS: Universal family psychosocial risk screening in pediatric oncology creates the opportunity to support efforts for health equity by guiding delivery of personalized psychosocial care. TRIAL REGISTRATION: NCT04446728 23 June 2020.

Trajectories of Pain Severity and Interference Among Adolescent and Young Adults With Cancer: A Microlongitudinal Study.

OBJECTIVE: Cancer-related pain is a pervasive concern among adolescent and young adults (AYA) with cancer and is an emerging long-term health concern. Few studies have examined the complex contributions to pain among AYA. We aimed to fill a gap by (1) identifying subgroups of AYA with distinct patterns of pain severity and interference over time and (2) explore possible predictors of these patterns. METHODS: Daily text messages over a 9-week period were used to model group-based trajectory analyses of pain severity and interference by identifying subgroups of AYA who experience common patterns of changes in pain. Demographic, medical, physical symptom burden, and psychological distress were examined as possible predictors of these patterns. RESULTS: AYA were on average 16.93 years old and 2.5 years since diagnosis. Subgroups of AYA were identified for pain severity and interference over time: high variability (37.7%; 37.7%, respectively), consistent high pain (35.8%; 18.9%, respectively), and consistent low pain (26.4%; 43.4%, respectively). AYA with greater psychological distress were more likely to belong to the high consistent pain severity and interference groups. AYA with greater physical symptoms were more likely to belong to the high consistent pain interference group. No significant associations between demographic/medical characteristics and trajectory subgroups were found. CONCLUSIONS: AYA with elevated physical and psychological symptoms were more likely to experience high consistent pain severity and pain interreference over time. Interventions aimed at reducing pain through focusing on teaching AYA how to alleviate physical symptoms and teaching coping skills to manage psychological distress may be beneficial.

Development of Training in Problem Solving for Caregivers of Childhood Brain Tumor Survivors.

BACKGROUND: Family management (FM) challenges of maternal caregivers of young adult survivors of childhood brain tumors are well documented, but there are no evidence-based caregiver interventions to improve FM. OBJECTIVES: The aims of this study were to (1) generate the knowledge necessary for developing a caregiver intervention (stage 0) and (2) modify an existing, efficacious intervention by engaging stakeholders (stage 1). METHODS: Stages 0 and 1 of the National Institutes of Health Stage Model for Behavioral Intervention Development and the FM Styles Framework were used in this study. RESULTS: In stage 0, families with condition-focused FM patterns were identified as at risk for poor problem solving. The 12-item Condition Management Ability scale of the FM Measures was selected as the screener to identify condition-focused maternal caregivers. Problem solving was identified as a potential mechanism for promoting behavior change. In stage 1, Bright IDEAS for Everyday Living was modified by integrating the FM Styles Framework creating Training in Problem Solving for Caregivers of Young Adult Survivors of Childhood Brain Tumors. Qualitative and quantitative assessments of feasibility and acceptability by maternal caregivers were excellent and used to improve selected areas of concern. CONCLUSION: Feedback from stakeholders indicates that Training in Problem Solving is a promising approach to shifting FM patterns and improving the functioning of caregivers, young adult survivors, and families. IMPLICATIONS FOR NURSING PRACTICE: When developing interventions, the use of systemic methods can provide both clinically based and scientifically acceptable solutions. Those interventions based on both problem solving and FM are potentially promising but need further testing.

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.

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.

Implementation science in pediatric oncology: A narrative review and future directions.

Implementation science (IS) has garnered attention within oncology, and most prior IS work has focused on adult, not pediatric, oncology. This narrative review broadly characterizes IS for pediatric oncology. It includes studies through 2020 using the following search terms in PubMed, Ovid Medline, and Cochrane: "implementation science," "pediatric," "childhood," "cancer," and "oncology." Systematic review was not performed due to the limited number of heterogeneous studies. Of 216 articles initially reviewed, nine were selected as specific to IS and pediatric oncology. All nine examined oncologic supportive care, cancer prevention, or cancer control. The supportive care focus is potentially due to the presence of cooperative study groups such as the Children's Oncology Group, which efficiently drive cancer-directed therapy changes through clinical trials. Future IS within pediatric oncology should embrace this ecosystem and focus on cancer control interventions that benefit patients across multiple cancer types and patients treated outside cooperative group studies.

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.

Cancer-Related Decision-Making Among Adolescents, Young Adults, Caregivers, and Oncology Providers.

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 collaborative decision-making and AYA-driven decisions 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.

Using qualitative and participatory methods to refine implementation strategies: universal family psychosocial screening in pediatric cancer.

BACKGROUND: Children with cancer and their families are at risk for short- and long-term psychosocial difficulties. Screening for psychosocial risk remains inconsistent, leading to inequitable access to psychosocial services. The Psychosocial Assessment Tool (PAT) is an evidence-based caregiver report screener of family psychosocial risk ready for implementation in a nationwide cluster randomized trial that will test two implementation strategies across 18 pediatric cancer centers. The current study, conducted in preparation for the trial, solicited the perspectives of key stakeholders about two proposed implementation strategies identified during previous research which focus on health equity and screening of all families (universal screening). Results were used to refine the implementation strategies for testing in the subsequent trial. METHODS: Semi-structured interviews with 19 key stakeholders (parents, health care providers, pediatric oncology organizations, and pediatric healthcare leaders) were conducted regarding the two implementation strategies. Strategy I is a training webinar; Strategy II is training + implementation enhanced resources, which includes a champion at each site and monthly peer support consultation calls. Data were analyzed using directed content analysis with deductively derived codes based on the Interactive Systems Framework and inductive codes based on emerging data. RESULTS: Stakeholder interviews provided rich data to rigorously modify the proposed implementation strategies. Implementation strategies were modified in consistent with these recommendations: engaging providers by framing family psychosocial screening as an opportunity for more efficient and effective practice; setting clear expectations about the importance of screening 100% of children and their families to achieve the goal of universal screening, equity of care, and reduction of disparities; and adapting successful strategies for systematic implementation of screening to ensure optimal engagement with children and their families throughout their care. CONCLUSIONS: Stakeholder input strengthened implementation strategies by suggesting modifications that emphasized health equity and reduction in health disparities. Using implementation science methods to build on a long-standing program of research provided practical insights about immediate needs of families and historical insights regarding structural inequities such as language differences and access to services. Resulting strategies address all levels of the social ecology for children's cancer care, including the patient, family, provider, healthcare system, and community. TRIAL REGISTRATION: NCT04446728 June 23, 2020.

Association of psychological distress and religious coping tendencies in parents of children recently diagnosed with cancer: A cross-sectional study.

PURPOSE: 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. PATIENTS AND METHODS: 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. RESULTS: 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. DISCUSSION: 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.