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.

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.

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.

Longitudinal predictors of caregiver resilience outcomes at the end of childhood cancer treatment.

OBJECTIVE: Caregiver resilience in the context of childhood cancer treatment has been described using cross-sectional and retrospective studies, but little is known about prospective predictors of resilience outcomes. We examined associations of demographics, cancer-related variables, and intrapersonal and interpersonal factors at diagnosis (family psychosocial risk, perceived social support, and healthcare self-efficacy) and psychosocial services provided during treatment with caregiver resilience outcomes at the end of treatment. METHODS: For a study validating a family psychosocial risk screener, 314 primary caregivers completed the measures at diagnosis of their child (aged 0-17 years) and when cancer treatment ended. Resilience outcomes were ratings of distress, posttraumatic stress, and posttraumatic growth. Multiple regression analyses evaluated the relative contribution of hypothesized predictors. RESULTS: Caregivers endorsed clinically significant distress, moderate posttraumatic growth, and low posttraumatic stress based on norms. Posttraumatic growth was not associated with posttraumatic stress or distress, which were significantly associated with each other. Over and above resilience at diagnosis, family psychosocial risk was associated with resilience at the end of treatment. Perceived social support, healthcare self-efficacy, and psychosocial services provided demonstrated associations with resilience in univariate analyses, but demographics and cancer-related variables did not. CONCLUSIONS: Resilience and family psychosocial risk at diagnosis were the strongest predictors of caregiver resilience outcomes at the end of the treatment. Intrapersonal and interpersonal predictors were weaker and varied by resilience measure. Consistent with psychosocial standards of care, broad evaluation of caregiver risks, resources, and resilience processes and outcomes is recommended at diagnosis and through the treatment trajectory including the end of treatment.

Implementation of family psychosocial risk assessment in pediatric cancer with the Psychosocial Assessment Tool (PAT): study protocol for a cluster-randomized comparative effectiveness trial.

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.