Family Psychosocial Risk Research Articles

Topical review: family psychosocial risk screening and social determinants of health assessment.

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. 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. 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. 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.

The Evaluation of Change in Psychosocial Risk With Caregivers of Children With Chronic Kidney Disease: A Short-term Longitudinal Mixed-Methods Study.

The COVID-19 pandemic and its accompanying safeguards intensified many of the ongoing daily challenges faced by caregivers of young people with chronic kidney disease (CKD) both pre-transplant and post-transplant, and also created a variety of new and pressing concerns. Little is known about how these families managed this unexpected adversity in their lives. To evaluate change in psychosocial risk for families of young people with CKD during the COVID-19 pandemic health emergency from the perspective of caregivers. A short-term longitudinal mixed-methods study with a convergent parallel design. Manitoba, Canada. Thirty-six caregivers of young people with CKD participated in a quantitative assessment prior to the pandemic; approximately half were transplant recipients. Thirteen were re-assessed during the pandemic (62% were caregivers of transplant recipients) using both qualitative and quantitative assessments. First, caregivers completed the Psychosocial Assessment Tool (PAT) prior to the pandemic. Second, caregivers were re-assessed using the PAT during the pandemic. They were also interviewed about their experiences. Changes in PAT scores over time were evaluated, including an investigation of whether psychosocial risk was related to transplant status. Interviews were coded using thematic analysis. In the interpretation stage, the qualitative findings were combined with the quantitative results to help explain the latter and reach a more fulsome understanding of caregivers' experience. Quantitatively, overall family psychosocial risk scores increased significantly during the pandemic health emergency, as did the domain of Caregiver Problems. Families of transplant recipients were found to be at significantly lower psychosocial risk pre-pandemic than families of transplant candidates. Coding identified Negative Pandemic Experiences, Positive Pandemic Experiences, and Coping Mechanisms. Mixed-methods analyses revealed several areas of convergence and divergence between the quantitative and qualitative findings. Limitations included a small sample size that limited generalizability, single site data collection, and single caregiver report. Although overall family psychosocial risk increased during the pandemic, caregivers described several resilience processes and characteristics. A mixed-method approach provided a unique perspective that highlighted the value of integrating quantitative and qualitative findings. Results were discussed within the pediatric psychosocial preventive health model framework.

Toward Equitable Access to Psychosocial Screening in Canada: Validation of the French-Canadian Psychosocial Assessment Tool.

The Psychosocial Assessment Tool (PAT) is a brief caregiver report, family-centered, psychosocial risk screening tool widely used in pediatrics and available in many languages. Although French is an official language of Canada, a French-Canadian version of the PAT has not yet been validated, which impedes access to this tool for family psychosocial screening. This study aimed to translate, adapt as necessary, and validate the French-Canadian version of the PAT. The PAT 3.0 was translated into French using the forward-backwards method. Interviews with healthcare workers (n = 5) and a focus group of parents of children newly diagnosed with cancer (n = 4) led to minor modifications to improve cultural adaptation and comprehensibility. Subsequently, 66 French-speaking parents of children newly diagnosed with cancer participated in a quantitative validation study; completing the French-Canadian PAT and related caregiver measures. The French-Canadian PAT has an overall internal consistency of KR-20 = 0.64, with subscales ranging from 0.57 to 0.86. The total PAT score significantly correlated with the Distress Thermometer (r = 0.54). Congruent validity was demonstrated for most PAT subscales, except for Family Beliefs and Family Problems. The sample followed this distribution on the Pediatric Psychosocial Preventative Health Model: 21.2% universal, 53% targeted, and 25.8% clinical. The French-Canadian PAT provides insight into family psychosocial risk. This study is a step toward equitable access to care by providing French-speaking families with access to a tool aligned with the psychosocial standards of care in pediatric oncology. Future research should focus on implementing the PAT in Canadian clinical settings.

Exploring Sex-Based Neuropsychological Outcomes in Pediatric Brain Cancer Survivors: A Pilot Study.

The increasing survival rates among pediatric cancer patients underscore the critical need to understand the long-term psychosocial impacts of cancer treatments, such as cisplatin and carboplatin. While these treatments are lifesaving, they may pose risks to neurodevelopmental processes. Despite the substantial body of research highlighting cognitive impairments associated with cancer treatments, there remains a gap in understanding how these effects differ by sex. As sex differences could inform tailored interventions and support mechanisms for affected individuals, this pilot study aimed to examine the sex differences in neuropsychological outcomes in patients treated for brain cancer with cisplatin and/or carboplatin. Our study employed rigorous/structured neuropsychological assessments to evaluate executive functions in pediatric cancer survivors treated with cisplatin and/or carboplatin. We utilized the BRIEF and TOL tests to assess the key domains of executive function, including inhibitory control, cognitive flexibility, and problem-solving abilities. Additionally, psychosocial factors were evaluated using the Resiliency Scale to measure resilience and the PAT test to assess family psychosocial risk. In our cohort of 17 patients, significant sex differences emerged, where males outperformed females in areas such as inhibitory control, impulse regulation, and strategic planning. These findings highlight the complexity of cognitive outcomes in pediatric cancer survivors. Understanding sex-specific differences is essential for developing tailored interventions that optimize cognitive and psychosocial outcomes. Future research should focus on larger cohorts and longitudinal studies to validate these findings and guide targeted interventions to improve survivorship outcomes.

Impact of Neighborhood Disadvantage on Preventive and Acute Care Utilization in Sickle Cell Disease.

Individuals with sickle cell disease (SCD) experience significant healthcare disparities; however, there is little known on the impact of psychosocial stressors and neighborhood disadvantage on preventive and acute care utilization in this population. A retrospective data collection was performed for all patients cared for at a comprehensive pediatric sickle cell center in the Midwest who had also completed the Psychosocial Assessment Tool (PAT), a validated caregiver-reported measurement of family psychosocial risk, from September 2021 through December 2022. Patient age, payor, primary language, frequency of acute and missed preventive care visits, as well as Area Deprivation Index (ADI) and Childhood Opportunity Index (COI) scores were collected for 256 patients. The average state ADI was 6.3 (±2.9), and the majority of patients were in the Very Low or Low COI categories. Total PAT score (p=0.003), state ADI (p<0.001), and state COI (p<0.001) were all significantly correlated with missed SCD clinic visits, with increased odds of a missed visit with increasing neighborhood disadvantage (OR 1.22, p<0.001). The odds of acute care were also increased in those with higher family psychosocial risk (OR 1.76, p<0.011), though this was not seen with ADI or COI, suggesting an additional effect of family stressors and resilience on acute care utilization. This highlights the importance of regular, universal social and psychological risk screening, as well as inclusion of psychosocial team members in SCD programs to identify and readily address risk factors that impact child outcomes in a minoritized chronic disease population.

Illness cognitions and parental stress symptoms following a child's cancer diagnosis.

This research aims to explore parents' cognitive beliefs, specifically illness cognitions, in response to their children being diagnosed with cancer. This study is an initial step toward providing regular psychosocial assessment as a standard for psychosocial care for children with cancer and their families in Latvia. Data were collected from 120 parents (mostly mothers, n = 109) as an initial evaluation of the psychosocial risks faced by families participating in the support program "Holistic and Multidisciplinary Support for Children with Functional Disabilities and Their Family Members," which was managed by the Children's Hospital Foundation at the Children's Clinical University Hospital in Riga (Latvia) from 2020 to 2023. The patients comprised 66 boys and 54 girls (M age = 7.1, SD = 4.7, range: 0-17 years) with diverse cancer diagnoses. The parents completed the Latvian version of the Psychosocial Assessment Tool [adapted from PAT 3.1], with five subscales included in the data analysis (Social Support, Child Problems, Family Problems, Stress Reactions, and Family Beliefs). The Family Belief subscale was adjusted specifically to address the unique objectives and research questions of the current study. Significant correlations were found between children's psychological problems (e.g., getting upset about medical procedures, hyperactivity, excessive use of electronic devices, etc.) and parental stress reactions after diagnosis and with self-reported symptoms of anxiety and depression. The associations were statistically significant, even after controlling for sociodemographic and medical factors such as diagnosis. The relationship between children's problems and parental stress reactions was partly mediated by Family Beliefs about illness. The most informative beliefs associated with parental stress symptoms and the family's psychosocial risk level were identified, and significant results were found according to the main component of beliefs (catastrophic vs. optimistic) that explained 42% of the variance in the Family Beliefs subscale. Understanding the habitual responses to stress and identifying the thinking patterns of parents that lead to distorted views and maladaptive coping are essential for customizing personalized interventions to enhance treatment compliance. The Latvian version of PAT is a useful psychosocial screening measure in pediatric oncology settings.

Translation and validation of a simplified Chinese version of the psychosocial assessment tool

BackgroundThe Psychosocial Assessment Tool (PAT2.0) is widely used to assess psychosocial risk in families of children with cancer. Our study aims to apply PAT2.0 to Chinese patients and assess the reliability, content validity, and construct validity of the Chinese version.MethodsA total of 161 participants completed the study, each with only one child diagnosed with cancer. Psychometric evaluations, including internal consistency, score distribution, test-retest reliability, and construct validity, were conducted.ResultsCronbach’s alpha values ranged from 0.732 to 0.843, indicating good internal consistency. Additionally, intraclass correlation coefficient values ranged from 0.869 to 0.984, indicating excellent test-retest reliability. The Simplified Chinese version of PAT2.0 demonstrated high construct validity in factor analyses and correlations with the General Functioning Subscale of the Family Assessment Device.ConclusionThe translation process of the Chinese version of PAT2.0 was successful, proving its applicability for psychosocial evaluation and interventions in families of children with cancer in China.

Preliminary Validation of the Psychosocial Assessment Tool in the Neonatal Intensive Care Unit.

Research suggests families whose infants are admitted to the Neonatal Intensive Care Unit (NICU) experience elevated distress and may have pre-existing risk factors for maladjustment. This study sought to validate the newly developed Psychosocial Assessment Tool (PAT-NICU/Cardiac Intensive Care Unit [CICU]), a comprehensive screening measure for family psychosocial risk in the NICU. The sample included 171 mothers, who completed the PAT-NICU/CICU and other related measures within 2 weeks of their infant's NICU admission at a level 4 unit within a large pediatric hospital. PAT-NICU/CICU scores were compared to a companion risk survey completed by NICU social workers. Test-retest reliability was assessed through repeated measures at 2-month follow-up. Analyses suggest the PAT-NICU/CICU is effective in classifying psychosocial risk. This is supported by statistically significant correlations between the PAT-NICU/CICU and validated measures, in addition to elevated scores on concurrent measures by risk classification. Internal consistency, test-retest reliability, and acceptability for the PAT-NICU/CICU were satisfactory. This preliminary study demonstrates the validity, reliability, and acceptability of the PAT-NICU/CICU as a psychosocial screening tool to aid identification of families who may benefit from supportive services during NICU admission. This new measure is a more comprehensive tool that assesses a wide variety of risk factors and stress responses. However, future studies of this measure are needed with more diverse samples. Prompt screening of NICU parents may facilitate earlier linkage with appropriate levels of resources or intervention. This research is crucial in improving risk assessment and psychosocial care for families in the NICU.

Adaptation and pilot implementation of the Psychosocial Assessment Tool for Autism Spectrum Disorders (PAT-ASD).

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.

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

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. 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. Nineteen participants (parent advocates, clinicians, leaders in professional organizations and healthcare policy) were interviewed. Directed content analysis was used to identify thematic descriptions. 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. Universal family psychosocial risk screening in pediatric oncology creates the opportunity to support efforts for health equity by guiding delivery of personalized psychosocial care. NCT04446728 23 June 2020.

Factors associated with Multidisciplinary Healthcare Resource Utilization Following Discharge from Pediatric Rehabilitation: A One-year Follow-up Study

Aims To characterize multidisciplinary healthcare resource utilization (mHRU), including physical, occupational, speech and psychosocial therapy one-year following discharge from prolonged inpatient and outpatient pediatric rehabilitation in Israel and to identify factors associated with long-term mHRU. Methods According to Andersen’s model of health service use, predisposing (child's age and sex), enabling (district of origin, income level, parental education, insurance) and need factors (injury type, functional status, family psychosocial risk) were collected from parents of children hospitalized for >1 month in a large rehabilitation hospital in Israel, and phone interviews were held 3-months (T1), 6-months (T2) and 12-months (T3) post-discharge. The effect of time and the role of various factors on mHRU, operationalized as number of therapy sessions in the previous 2 weeks, were evaluated. Results Sixty-one families participated at T1 and T2, and 46 participated at T3. HRU was similar over time. Predisposing factors (age) and need factors (functional status and psychosocial risk) were associated with specific disciplines of mHRU, but enabling factors were not. Conclusions mHRU is high and stable 12-months post-discharge. The lack of impact of enabling factors on mHRU, and the discipline-specific impact of predisposing and need factors, support equity of care provision for children following prolonged rehabilitation.

Validating the Factor Structure of the Psychosocial Assessment Tool Using Internet-Based Data.

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. 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. 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. 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.

Sharing psychosocial risk screening information with pediatric oncology healthcare providers: Service utilization and related factors.

Psychosocial morbidity in pediatric oncology patients and their caregivers is widely recognized. Although routine systematic psychosocial screening has been proposed as a standard of care, screening is still limited. The present study assessed whether supplying the patient's treating team of healthcare providers with psychosocial risk screening information near diagnosis would increase the rate of documented psychosocial contacts, particularly for patients/families with elevated risk. The effect of demographic and clinical factors was also examined. Ninety-three families with a child/youth newly diagnosed with cancer participated. Families were randomly assigned to a care as usual control group (n=44) or an intervention group (n=49) where the treating team was provided with a summary of family psychosocial risk, measured by the Psychosocial Assessment Tool (PAT). The PAT was completed by the primary caregiver, who also provided demographic information. The number of psychosocial intervention contacts documented in the medical charts was examined. The rate of psychosocial intervention did not significantly differ between the groups (P>0.05). The intensity of the child's cancer treatment was found to be the only significant predictor of the number of documented psychosocial intervention contacts (β=0.396, P<0.001). Clinical factors appear to be more predictive of the rate of psychosocial intervention provided to pediatric oncology patients and their families than informing the treating team of family psychosocial risk. Additional research is required to address the gap between psychosocial risk screening, psychosocial intervention, and family outcomes.

Psychosocial risk, symptom burden, and concerns in families affected by childhood cancer.

The revised Psychosocial Assessment Tool (PATrev) is a common family-level risk-based screening tool for pediatric oncology that has gained support for its ability to predict, at diagnosis, the degree of psychosocial support a family may require throughout the treatment trajectory. However, ongoing screening for symptoms and concerns (e.g., feeling alone, understanding treatment) remains underutilized. Resource limitations necessitate triaging and intervention based on need and risk. Given the widespread use of the PATrev, we sought to explore the association between family psychosocial risk, symptom burden (as measured by the revised Edmonton Symptom Assessment System (ESAS-r)), and concerns (as measured by the Canadian Problem Checklist (CPC)). Families (n = 87) with children ≤ 18years of age (M = 11.72, male: 62.1%) on or off treatment for cancer were recruited from the Alberta Children's Hospital. One parent from each family completed the PATrev and the CPC. Participants 8-18years of age completed the ESAS-r. Risk category (universal/low risk = 67.8%, targeted/intermediate risk = 26.4%, clinical/high risk = 5.7%) predicted symptom burden (F[2, 63.07] = 4.57, p = .014) and concerns (F[2, 82.06] = 16.79, p < .001), such that universal risk was associated with significantly lower symptom burden and fewer concerns. Family psychosocial risk is associated with cross-sectionally identified concerns and symptom burden, suggesting that resources might be prioritized for families with the greatest predicted need. Future research should evaluate the predictive validity of the PATrev to identify longitudinal concerns and symptom burden throughout the cancer trajectory.

Early trajectory of psychosocial risk in families of children and adolescents newly diagnosed with cancer.

We explored early trajectories of psychosocial risk levels (i.e., Universal, Targeted, or Clinical) in families of children and adolescents newly diagnosed with cancer using the Psychosocial Assessment Tool (PAT) in secondary analysis of data from a randomized trial assessing the effects of psychosocial screening. Families were allocated to an intervention group (IG, PAT summary provided to patient treating team) or a control group (CG, no PAT summary provided to treating team) in two pediatric cancer centers. Primary caregivers (N = 122) of newly diagnosed children and adolescents completed the PAT along with outcome measures for the trial at 2-4weeks post-diagnosis (T1) and 6months post-diagnosis (T2). The CG and IG were not significantly different, in terms of PAT risk levels at T1 and T2, but at T1, the PAT total and parent stress scores were higher in the CG (p's < .05). The distribution of families across PAT risk levels did not differ significantly between T1 and T2 (p > .05) with 63% of families remaining within the same PAT risk level at T2. A subgroup of families in the Targeted risk level at T1 moved to the Universal (34%) or Clinical (13%) levels of risk at T2 (p's < .01). Another subgroup with Universal risk at T1 trended to Targeted (28%) or Clinical (2%) at T2. While psychosocial risk remained relatively consistent for the majority of families, a smaller number of families experienced changes in risk level over time. Further investigation of these exploratory trends in psychosocial trajectories is needed to guide psychosocial support during child's cancer treatment.Clinical Trial Registration Number: NCT02788604 (registered with ClinicalTrials.gov).

Psychosocial Functioning Among Caregivers of Childhood Cancer Survivors Following Treatment Completion.

To inform efforts to better support caregivers of children with cancer during the transition from treatment to survivorship, this study sought to characterize caregiver mental health-related quality of life (HRQOL) and anxiety, and examine the influence of family psychosocial risk and caregiver problem-solving on these outcomes. Participants included 124 caregivers (child age M = 10.05 years; SD = 4.78), 12-19 months from the conclusion of cancer-directed treatment. Participants' self-reported mental HRQOL, anxiety, and problem-solving were compared with community norms using t-tests. Correlations and hierarchical multiple regressions examined the influence of psychosocial risk and problem-solving on caregiver mental HRQOL and anxiety. Overall, caregivers reported HRQOL and anxiety within normal limits. Caregivers also reported more adaptive patterns of problem-solving than community norms. Subsets of caregivers reported clinical levels of psychosocial risk (11%) and at-risk levels of mental HRQOL (2.5%) and anxiety (5.7%). Females reported greater anxiety than males. Psychosocial risk and negative problem orientation (NPO) were both related to poorer mental HRQOL and greater anxiety (r = .40-.51, p's < .001). Positive problem orientation related to better mental HRQOL and lower anxiety (r = .18-.21, p's < .05). Impulsivity/carelessness and avoidance were associated with greater anxiety (r = .19-.25, p's < .05). Only NPO accounted for additional variance in mental HRQOL and anxiety, over and above psychosocial risk and demographic characteristics. The majority of caregivers appear to be resilient and experience limited distress during the off therapy period. Targeting negative cognitive appraisals (NPO) through cognitive-behavioral therapy or problem-solving skills training may further improve caregiver psychosocial functioning.

The Moderating Effect of Parental Feeding Style in Relation to Familial Psychosocial Risk Factors and Childhood Obesity

Background: The prevalence of obesity in children is increasing in the world and it has become one of the major health problems. Parents are the first people who have the opportunity to shape child's eating experiences and habits, including food preferences, attitudes, and eating patterns. This study was conducted to determine the moderating role of parental feeding styles in relation to family psychosocial and social risk factors and childhood obesity in primary school children in 2018-2019 academic year in Shiraz, Iran. Methods: In this study, 298 children aged 6 to 11 years from primary schools in Shiraz were selected using multistage cluster sampling method. Their parents completed the stress-anxiety-depression scale tool and parenting feeding styles questionnaire. The data were analyzed using simultaneous multiple regression analysis, cluster analysis, and two-way analysis of variance (ANOVA). Results: The results showed that there was a statistically significant correlation between the identified risk factors and child's body mass index (BMI), as well as the variable effect of feeding styles on the child's BMI. The interaction of risk factors on feeding styles indicated that the effect of adjusting feeding styles on childhood obesity was significant due to risk factors. Conclusion: These findings support the moderating role of parental feeding styles in the development or prevention of childhood obesity.

Protocol for mapping psychosocial screening to resources in pediatric oncology: a pilot randomized controlled trial

BackgroundA pediatric cancer diagnosis and its treatment can have a detrimental effect on the mental health of children and their families. Screening to identify psychosocial risk in families has been recognized as a standard of care in pediatric oncology, but there has been limited clinical application of this standard thus far. A significant impediment to the implementation of psychosocial screening is the dearth of information on how to translate psychosocial screening to clinical practice, and specifically, how to follow-up from screening results. This manuscript aims to describe a protocol of a new intervention examining the feasibility and acceptability of mapping via a Psychosocial Navigator (PSN) psychosocial screening results to specific recommendations of resources for families based on measured risk for psychosocial distress and mental health symptoms.MethodsThe pilot randomized control trial (RCT) consists of dyads of youth (10–17 years) newly diagnosed with cancer and their primary caregiver. This RCT includes two arms (intervention and control group), with each group completing measurements near diagnosis and 1 year later. After the initial assessment, dyads in the intervention group receive monthly screening results and recommendations from the study PSN that are tailored to these results. The patient’s primary healthcare team (nurse, social worker, oncologist) also receive the risk, distress, and mental health results as well as the recommendations from the PSN.DiscussionThis study addresses a significant barrier to the implementation of psychosocial screening in pediatric oncology: specifically, the limited knowledge of how to follow-up from screening results. Findings from this pilot will inform a future definitive RCT to test the effectiveness of the intervention on patient and family mental health outcomes. This project has implications for enhancing clinical care in pediatric oncology, as well as other pediatric populations.Strengths and limitations of this studyThis is the first study of screening and follow-up using a psychosocial navigator.This study involves both patient and caregiver report.The small sample size necessitates a future larger study to investigate the effects of intervention.Trial registrationNCT04132856, Registered 10 October 2019—retrospectively registered.

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

BackgroundChildren 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.MethodsSemi-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.ResultsStakeholder 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.ConclusionsStakeholder 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 registrationNCT04446728 June 23, 2020

Psychosocial risk and health care utilization in pediatric sickle cell disease.

Pain and complications related to pediatric sickle cell disease (SCD) are associated with higher health care utilization. In other pediatric chronic conditions, psychosocial screening can help identify children and families at risk of increased health care utilization to guide resource allocation, address treatment needs, and improve care. This study aimed to investigate the utility of psychosocial screening in predicting increased health care utilization among youth with SCD. Youth with SCD (n=74, 8-18years) and their parents were recruited from comprehensive SCD clinics. Parents completed the Psychosocial Assessment Tool (PAT), which categorized family psychosocial risk into one of three categories: Universal (minimal distress), Targeted (elevated distress), and Clinical (persistent distress). Youth reported on their pain characteristics, and health care utilization was extracted from medical chart review. Differences in health care utilization were evaluated using analysis of variance (ANOVA) and moderation analyses. Based on PAT risk, families were categorized into Universal (56.8%), Targeted (29.7%), and Clinical (13.5%) risk groups, with no significant group differences across demographic variables. Patients in the Targeted group reported significantly higher pain frequency than those in the Universal group (F[2, 66]=3.7, p<.05). The association between pain frequency and health care utilization significantly varied on the basis of psychosocial risk, such that Clinical psychosocial risk strengthened the connection between pain frequency and health care utilization (β=.2, t=2.1, p<.05). Integrating the PAT into routine clinical care may help health care providers identify families in need of greater psychosocial or medical support to further optimize SCD management.