BACKGROUND:The Standards for Psychosocial Care for Children with Cancer and Their Families ("Standards") are evidence-based guidelines for psychosocial care in pediatric oncology. Care related to the three "Asking and Monitoring" Standards-Assessment of Psychosocial Needs, Assessment of Financial Needs, and Monitoring Neurocognitive Problems-is frequently provided, but community member input regarding the implementation of this care is notably absent in extant literature. The Implementing the Standards Together: Engaging Parents and Providers in Psychosocial Care (iSTEPPP) team conducted a mixed-methods, community-engaged study to understand parent and provider perceptions and prioritization of these three Standards. METHODS:A two-round Delphi technique identified consensus on prioritization of the Standards by pediatric oncology providers (medical and psychosocial) and parents. The survey included optional free-text responses to explain their reasoning for their selections. Data were analyzed using an iterative qualitative process. RESULTS:Responses were included from 129 parents and 62 providers. For Assessment of Psychosocial Needs and Assessment of Financial Needs, parent responses focused on immediate consequences when the Standards are not provided, while providers described their relevance to broader medical and psychosocial outcomes. For Monitoring Neurocognitive Problems, providers noted its importance because families prioritize it, while parents reflected on a lack of understanding and attention to neurocognitive deficits. CONCLUSION:While parents shared concerns about both immediate and long-term consequences if Standards-aligned care is not delivered, providers emphasized broader or longer term consequences. Findings reflect the critical importance of frequent, structured monitoring of psychosocial and financial needs and more comprehensive monitoring for neurocognitive deficits.

BACKGROUND: Adolescents and young adults (AYA: 15-39y) with acute lymphoblastic leukemia (ALL) face poor survival with minimal historical improvement compared to younger patients, prompting National Comprehensive Cancer Network (NCCN) treatment guidelines for ALL to include AYA-specific recommendations. Our team previously revealed that guideline adherence at NCI Community Oncology Research Program (NCORP) practices was influenced by the model of care delivery (adult, pediatric, mixed) but not by annual AYA ALL volume (Wolfson, JNCI-CS, 2025). Receipt of guideline-concordant care (GCC), however, has not been investigated in the setting of clinical trial availability. Earlier hypothesis-generating work documented superior AYA ALL survival at specialized cancer centers (Wolfson, CEBP, 2017); this was theorized to be driven partly by a clinical trials-oriented culture, but that phenomenon has not been examined. We investigated trial availability among AYAs with ALL at NCORP practices and its association with GCC and facility-level factors. METHODS: We utilized recently reported data from a cross-research base, AYA-specific Cancer Care Delivery study (ACCL16N1CD) to assemble a retrospective cohort of newly diagnosed AYAs with ALL treated at participating NCORP practices between 2012-2016. Methods were reported previously. In brief, NCORP sites abstracted patient data and completed facility-level questionnaires for each “clinical facility” (CF: study-defined entity). A central review committee assessed treatment concordance with NCCN AYA ALL guidelines. Therapeutic clinical trials open at participating NCORP practices (including study dates and locations) were identified via Clinical Trials Support Unit (and ClinicalTrials.gov). We summarized clinical trial availability, enrollment, and GCC by facility and patient characteristics. Using logistic regression, we modeled the odds of trial availability and enrollment (adjusting for facility characteristics and provider specialty) and receipt of GCC (adjusting for trial availability and CF volume). RESULTS: Among 227 AYAs (cohort details: PMID: 40238217), 172 (76%) were eligible for at least one trial at their institution. Trial Availability: A trial for AYA ALL was available at all (100%) pediatric, most (91%) mixed, and half (52%) of adult CFs. The proportion of AYAs eligible for an available trial was higher at pediatric (93%) or mixed (82%) than at adult (51%) CFs (p<0.0001). Trial availability did not differ significantly by diagnosis (T-cell, Ph-negative, Ph-positive; p=0.9) or average annual AYA ALL volume (p=0.5). For the subset of AYAs eligible for an available trial, all trials at pediatric and mixed CFs were cooperative group trials, while at adult CFs 97% of this subgroup were eligible for cooperative group trials and 26% for pharma trials. Most patients at mixed CFs with trials available were observed to be treated by pediatric (72%) rather than adult (28%) oncologists. In multivariable analysis, AYAs had higher odds of having a trial available if they were at pediatric (OR=11.0, 95%CI 4.0-35.5) or mixed (OR=4.0, 95%CI 1.8-9.1) rather than adult CFs, but AYA volume was not statistically significant. Enrollment: Among AYAs with trials available, 48% were enrolled. When they were eligible for an available trial, AYAs had higher odds of enrolling if they were treated by pediatric rather than adult oncologists (OR=22.5, 95%CI 8.5-73.4), while annual volume at the CF was not statistically significant. GCC: Although most (86%) AYAs received GCC, GCC was more common among AYAs who did (92%) vs. did not (67%, p<0.0001) have any trials available. We observed higher odds of GCC if any ALL trials were available at the treating CF both in univariable (OR=7.2, 95%CI 2.8-17.9) and multivariable (OR=4.4, 95%CI 1.2-15.6) analyses adjusting for model and volume. CONCLUSIONS: AYAs with ALL are at higher odds of receiving GCC if there are clinical trials available at the treating facility, regardless of whether they are eligible for a trial. AYAs with ALL at NCORPs have higher odds of having a trial available if treated at a pediatric or mixed (vs. adult) practice and of enrolling on a trial if treated by pediatric (vs. adult) oncology. Strategies to improve GCC for AYAs with ALL should include optimizing clinical trial availability (and by extension disease expertise) across facility models. Next steps will further examine the low enrollment among AYAs with available trials.

OBJECTIVE:Social-ecological factors are highly congruent with social determinants of health (SDOH): Economic Stability; Educational Access/Quality; Healthcare Access/Quality; Neighborhood/Built Environment; and Social/Community Context. In this topical review, the correspondence of social-ecological theory with SDOH and assessment approaches is reviewed. The Psychosocial Assessment Tool (PAT) is used to show how existing tools may facilitate SDOH screening. METHODS:SDOH are defined, and their link to pediatric health outcomes is presented, followed by a review of the social-ecological model. Feasible, valid, and actionable approaches to assessment of social ecology and SDOH are presented with a focus on the PAT, a brief caregiver report screener based on social-ecological theory, validated in English, Spanish, and in multiple conditions and adapted/translated internationally. Multidisciplinary healthcare providers (n = 25) completed an online survey, indicating whether each PAT item fit into SDOH categories. RESULTS:Despite different approaches to assessing SDOH, there are few feasible and evidence-based approaches. Most PAT items (78%) were consistent with one of the SDOH categories by the majority of raters. PAT items corresponded to all five SDOH categories. Some items about child behavior and family were not categorized as an SDOH, reflecting the broader context of screening with the PAT. CONCLUSION:The assessment of SDOH is a priority, but approaches to assessment and linking outcomes to intervention remain underdeveloped. As an evidence-based screener in pediatric healthcare, based on social-ecological and public health models, the PAT may provide a means of identifying relevant SDOH in pediatric practice.

BACKGROUND:The Standards for the Psychosocial Care of Children with Cancer and their Families (the Standards) support the provision of evidence-based psychosocial care across the pediatric cancer trajectory by specialized multidisciplinary staff. This paper presents data from the Implementing the Standards Together: Engaging Parents and Providers in Psychosocial care (iSTEPPP) study on the number and type of psychosocial staff at pediatric oncology programs in the United States in 2023, 8 years after the publication of the Standards. PROCEDURE:Up to two healthcare professionals from pediatric cancer programs in the United States participated in an online survey. The number and type of psychosocial staff are reported and compared with data from a similar 2016 survey. Challenges in delivering psychosocial care and the impact of the COVID-19 pandemic on staffing are also reported. RESULTS:Participants were clinical leaders from 129 pediatric oncology programs (73 medical and 109 psychosocial providers). Social workers are present in 97.2% of programs and child life specialists in 92.5%. Psychologists (69.2%), neuropsychologists (39.3%), and psychiatrists (15.0%) are less common. There has been some increase in the percentage of programs reporting social workers, psychologists, neuropsychologists, and psychiatrists and in the mean number of psychosocial staff since the Standards were published. Challenges in psychosocial staff are related to funding and are consistent with 2016 data. CONCLUSION:Although most participating pediatric oncology programs have psychosocial staff, many sites continue to lack the size and breadth of multidisciplinary teams needed to implement the Standards.

Incorporating and elevating the voices of patients and families is of utmost importance in pediatric psychosocial research. While recognized as a priority, this practice is not commonplace, and specific guidance regarding best practices and procedures is largely absent. This paper describes partnering equitably with pediatric oncology patient advocacy groups to conduct the Implementing the Standards Together: Engaging Parents and Providers in Psychosocial Care (iSTEPPP) study. The partnership was critical for all steps of the research process, including study development, refinement of the survey instrument, and recruitment procedures. We describe our overall approach, providing specific illustrative examples and highlighting opportunities for future growth.

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.

Recognizing the multifaceted and chronic demands on families of children with Autism Spectrum Disorder (ASD) and challenges in providing care matched to need, we adapted the Psychosocial Assessment Tool (PAT), a brief caregiver-report screener of family psychosocial risk, for this population. Study methods included literature review, focus groups with providers, and feedback from caregivers. The PAT-ASD is consistent with the original PAT, with new items reflecting core behavioral manifestations of ASD and parent and family challenges associated with chronicity. The PAT-ASD was implemented in a four-month pilot and was completed online by 59% of families. Although further testing of its validity is necessary, the PAT-ASD is a promising means of assessing family psychosocial risk for families of children with ASD.

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.

OBJECTIVE:The Psychosocial Assessment Tool (PAT) is a well-validated, brief screener of family psychosocial risk. Since 2014 a web-based version of the PAT (WebPAT) has been available for use by clinicians and researchers, but the psychometric properties have not been examined. The objective of this article was to examine the factor structure and internal consistency of the WebPAT, which was administered to caregivers of youth with cancer.METHODS:The WebPAT was administered to 1,252 caregivers of youth with cancer across 29 institutions. Confirmatory factor analysis (CFA) was used to examine the factor structure of the WebPAT. Internal consistencies of the total and subscale scores were examined via the Kuder-Richardson 20 coefficient. The distribution of total PAT score across the three risk categories of the Pediatric Psychosocial Preventative Health Model (PPPHM) was also examined.RESULTS:The CFA supported the original seven-factor structure of the PAT (Family Structure, Social Support, Child Problems, Sibling Problems, Family Problems, Stress Reactions, and Family Beliefs). Internal consistencies were strong for the total PAT score and four subscales (Social Support, Child Problems, Sibling Problems, and Family Problems). The distribution of total PAT scores across PPPHM risk categories was consistent with prior research.CONCLUSIONS:The WebPAT is a psychometrically sound screener of psychosocial risk in families of youth with cancer. Healthcare providers can use the WebPAT to assess families' psychosocial risk and guide the provision of psychosocial care. Future research should evaluate the implementation of the PAT and identify barriers and facilitators to implementation.

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.

Background Childhood cancer affects and is affected by multiple levels of the social ecology, including social and relational determinants of health (e.g., economic stability, housing, childcare, healthcare access, child and family problems). The 2015 Standards of Psychosocial Care in Pediatric Cancer outline optimal psychosocial care sensitive to these ecological factors, starting with assessment of psychosocial healthcare needs to promote medical and psychosocial outcomes across all children with cancer. To address the first standard of family psychosocial assessment, the Psychosocial Assessment Tool (PAT) is a validated screener ready for broad implementation. Method The PAT will be implemented across a national sample of 18 pediatric cancer programs ranging in size (annual new patients) in a mixed methods, comparative effectiveness study, guided by the Interactive Systems Framework for Dissemination and Implementation, comparing two implementation strategies. It is hypothesized that implementation will be more successful at the patient/family, provider, and institutional level when training (strategy I) is combined with implementation expanded resources (strategy II). There are three aims: (1) Refine the two implementation strategies using semi-structured qualitative interviews with 19 stakeholders including parent advocates, providers, pediatric oncology organization representatives, healthcare industry leaders; (2) Compare the two theoretically based and empirically informed strategies to implement the PAT in English and Spanish using a cluster-randomized controlled trial across 18 sites. Stratified by size, sites will be randomized to cohort (3) and strategy (2). Outcomes include adoption and penetration of screening (patient/family), staff job satisfaction/burnout (provider), and cost-effective use of resources consistent with family risk (institution); (3) Based on the results of the trial and feedback from the first and second aim, we will develop and disseminate a web-based PAT Implementation Toolkit. Discussion Use of the PAT across children’s cancer programs nationally can achieve the assessment standard and inform equitable delivery of psychosocial care matched to family need for all patients. Trial Registration ClinicalTrials.gov , NCT04446728 , registered 23 June 2020

This systematic review provides a synthesis of randomized-controlled trials of technology-focused family interventions for children with chronic illnesses and their families, focused on describing the current state of the literature and generating recommendations for future family systems work in the field of eHealth/mHealth. Twenty-three studies met inclusion criteria and were included in the systematic review. No identified studies featured an mHealth delivery modality. Relevant data were extracted and studies were assessed for quality. There was great variability with regard to intervention factors (e.g., format) and family-centered intervention targets. There is some evidence that eHealth interventions may lead to improvements in particular domains of family functioning (e.g., family conflict) for some groups of participants. However, mixed results and selection of numerous different intervention targets by investigators make it challenging to draw summative conclusions about the overall effectiveness of family systems eHealth interventions. Future research should move beyond feasibility/acceptability studies and examine family-centered processes as primary outcomes. Future research should also consider novel intervention formats to determine whether intervention effects are more robust for certain groups (e.g., individuals who prefer electronic intervention delivery to in-person intervention).

BackgroundWith published evidence-based Standards for Psychosocial Care for Children with Cancer and their Families, it is important to know the current status of their implementation. This paper presents data on delivery of psychosocial care related to the Standards in the United States. ProcedurePediatric oncologists, psychosocial leaders, and administrators in pediatric oncology from 144 programs completed an online survey. Participants reported on the extent to which psychosocial care consistent with the Standards was implemented and was comprehensive and state of the art. They also reported on specific practices and services for each Standard and the extent to which psychosocial care was integrated into broader medical care. ResultsParticipants indicated that psychosocial care consistent with the Standards was usually or always provided at their center for most of the Standards. However, only half of the oncologists (55.6%) and psychosocial leaders (45.6%) agreed or strongly agreed that their psychosocial care was comprehensive and state of the art. Types of psychosocial care provided included evidence-based and less established approaches but were most often provided when problems were identified, rather than proactively. The perception of state of the art care was associated with practices indicative of integrated psychosocial care and the extent to which the Standards are currently implemented. ConclusionMany oncologists and psychosocial leaders perceive that the delivery of psychosocial care at their center is consistent with the Standards. However, care is quite variable, with evidence for the value of more integrated models of psychosocial services.