OBJECTIVES:This qualitative study sought to explore the unique experiences of children receiving hematopoietic stem cell transplant (HCT) and their caregivers, with a primary focus on the multifaceted aspects of adherence following discharge. METHODS:Convenience sampling was used to enroll 14 caregivers and 15 children at a large Midwestern children's hospital. Children had an allogenic HCT for a malignant or nonmalignant disorder and were 1-12 months off immunosuppression. Participants completed a semi-structured interview in the HCT-clinic or via phone about the child's experience taking medications and adhering to post-transplant guidelines. RESULTS:Caregivers were primarily female (n = 13, 87%), White (n = 11, 73%), and not Hispanic (n = 15, 100%). Children were primarily male (n = 9, 60%), White (n = 10, 67%; missing: n = 3), and not Hispanic (n = 13, 87%; missing: n = 2). Children's average age was 13.14 years (SD = 2.88). Two primary themes emerged from the interviews, (1) family navigation and self-management of post-HCT medications and restrictions with 3 subthemes highlighting structured routines, adaptations to life post-HCT, and experiences with daily restrictions and other aspects of care; (2) advice from families on navigating post-HCT care with 2 subthemes highlighting communication and strategies for maneuvering post-HCT treatment. Of note, half of caregivers (n = 7, 50%) reported the child was responsible for taking their medications, and 43% (n = 6) of children were responsible for knowing when to take their medications. SIGNIFICANCE OF RESULTS:This study contributes a nuanced understanding of adherence in pediatric HCT, emphasizing the need for tailored interventions that transcend traditional medical frameworks and enable clear communication between families and the medical team. Findings underscore the importance of providers adopting a comprehensive and patient-centered approach. Healthcare providers should consider the psychosocial aspects of HCT, implement tailored family-centered strategies to optimize adherence, and prioritize comprehensive communication to improve outcomes.

Graduate school admissions are competitive, and few studies have documented post-baccalaureate (post-bacc) training program outcomes. This paper describes a post-bacc training program at an academic medical center and aims to (a) characterize participants and program recruitment, (b) examine productivity and graduate school matriculation, and (c) assess change in key outcomes (e.g., publications), demographic characteristics, and program reflections. Seventy-nine post-baccs have completed the post-bacc training program since 2017. Publication data were obtained via institution record-keeping and public resources (e.g., PubMed). Starting in 2021, new post-baccs (n = 28) completed entry and exit surveys (reporting demographics/academic history, awards/honors, publications/presentations, research skill confidence, and next steps). Of 79 post-baccs, 89% (n = 70) matriculated to graduate or medical school (41% clinical psychology). The median number of publications during training was three. Publications, presentations, and confidence were higher at exit vs. entry (p's < .05). There were no differences based on underrepresented group status (p > .05). Program satisfaction was high. Findings demonstrate success preparing post-baccs for admission into advanced degree programs, improving research productivity/skill (regardless of underrepresented group status), and garnering high satisfaction among post-baccs. This program model can serve as a bridge, offering rigorous clinical research training for the future workforce of clinical psychologists and related professionals.

Purpose:To describe the rationale, methods, and baseline sample descriptives of the Adolescent and Young Adult Tracking Engagement and Management Skills (AYA TEAMS) cohort. The AYA TEAMS study is a longitudinal observational cohort study that aims to identify determinants and patterns of self-management and engagement in cancer-related long-term follow-up (LTFU) care and validate a novel transition readiness assessment among adolescent and young adult (AYA) survivors of childhood cancer. Participants:AYA survivors of childhood cancer (ages 16-25) and their caregivers were enrolled from 3 large pediatric oncology centers across the United States from 2020-2022 and followed for 2 years (minimum) to 3 years and 3 months (if transferred to adult care). AYA inclusion criteria were: past childhood cancer diagnosis, at least 2 years off-treatment, 5 years since diagnosis, engaged with the participating pediatric health care system within the last 18 months, cognitively able to complete study procedures, and English speaking. AYA completed a comprehensive battery of measures including assessments of self-management and transition readiness at baseline and annually for 2 years. For AYA transferred to adult care, separate measures were administered at the time of transfer (following last pediatric visit) and 15 months post transfer. Caregivers (English or Spanish-speaking) completed a single survey at baseline to capture family functioning, psychosocial risk, and transition readiness. Cancer diagnosis, treatment modalities, treatment-related late effects, and engagement in LTFU care were captured via electronic medical record review. In total, 709 AYA were enrolled and 587 were included in the final cohort [Mage=19.7 years, 52.5% female, 38.2% from racial and/or ethnic minoritized groups, (REMG)]. The cohort was on average 7.3 years old at the time of diagnosis and 10.5 years off treatment. Half (52.5%) were survivors of leukemia/lymphoma, 38.0% solid tumors, and 9.5% central nervous system tumors. Three hundred and ninety-nine caregivers participated (90% mothers). Findings to Date:Enrolled AYA excluded from the baseline cohort were more likely to be male, from REMG, and/or to enroll without a caregiver. Baseline cohort differences between sites emerged for age, race and ethnicity, socioeconomic status, and treatment modalities and intensity. Future Plans:Data collection was completed in April 2025. Findings from this cohort will elucidate important predictors of self-management and engagement in recommended annual LTFU and inform the design of interventions to reduce disengagement in LTFU.

BACKGROUND:Pain is a prevalent, frequent, and often persistent symptom among children with acute lymphoblastic leukemia (ALL). Despite its high prevalence, pain has remained understudied, and no evidence-based recommendations exist for how best to assess and treat pain in this population. Without proper assessment, clinical efforts to improve pain management in pediatric ALL will be ineffective. AIMS:Therefore, the purpose of this systematic review is to describe and identify gaps in measurement approaches that have been used to assess pain in pediatric ALL, evaluate the psychometric properties of available pediatric pain measures, and provide recommendations for clinical research and practice. METHODS:Literature searches were performed following Cochrane and PRISMA guidelines for systematic reviews. Domains of pain assessed, measures used to assess pain, measure format, respondent, and timing of pain assessment were extracted from studies that met inclusion criteria. The psychometric properties of included measures were then evaluated. A total of 238 full-text articles were screened and 123 met inclusion criteria. RESULTS:Most studies assessed pain using generic health-related quality of life instruments rather than pain-specific measures. A total of 39 measures were used across the 123 included studies, and the psychometric properties of the measures varied considerably. CONCLUSIONS:Recommendations include a selection of well-validated pain assessment measures that are currently available and can be used to facilitate best practices in ALL pain assessment. Clinicians and investigators are encouraged to utilize a multidimensional pain assessment approach to inform and enhance pain care in pediatric ALL.

BackgroundAdherence to treatment following hematopoietic stem cell transplant (HSCT) is critical, yet the complexity and demands of postdischarge regimens often lead to suboptimal adherence among families unprepared for the transition home. Discharge teaching has been reliably evaluated using the Quality of Discharge Teaching Scale (QDTS) across several health conditions, with higher scores associated with improved parental readiness and pediatric health outcomes. This scale may be helpful in identifying areas for improvement in pediatric HSCT discharge teaching if validated in a pediatric HSCT population.MethodThis study recruited 120 caregivers of children who recently underwent HSCT to complete the QDTS along with measures of parental efficacy/control, psychological distress, and psychosocial risk factors. Confirmatory factor analysis (CFA) was used to examine the factor structure and measurement invariance of the scale, while internal reliability was assessed using Cronbach's alpha and correlations with related constructs.ResultsCFA showed that the QDTS had adequate model fit and was invariant across biological sex and income, but not diagnosis. The QDTS demonstrated good internal reliability (content α = .76; delivery α = .90) and criterion validity, with significant correlations with the subscales of related constructs. Independent samples t-tests revealed that caregivers of children with malignant diagnoses reported worse quality of discharge teaching compared to those with nonmalignant diagnoses.DiscussionThis study supports the use of the QDTS as a valid and reliable tool for assessing the quality of discharge teaching for caregivers of children undergoing pediatric HSCT.

Hematopoietic stem cell transplantation (HSCT) is a life-saving yet complex treatment for pediatric patients that introduces significant physical, emotional, and logistical challenges for caregivers. This multicenter, prospective qualitative longitudinal study explored caregiver experiences across 4 time points: pre-transplant (n = 47), 30 d post-transplant (n = 43), 100 d post-transplant (n=34), and 6 months post-transplant (n=26). Forty-nine caregivers participated in semi-structured interviews, which were transcribed and thematically analyzed. This manuscript encompasses the following themes that emerged from the interviews: treatment-related side effects and complications, communication gaps, and the impact of the COVID-19 pandemic. Caregiver priorities evolved over time, shifting from managing acute complications such as pain, infections, mucositis, and medication administration to addressing longer-term concerns like developmental delays, nutritional rehabilitation, and psychosocial adaptation. Caregivers reported challenges such as information overload, inconsistent messaging, and limited preparation for transitions in care. They employed various strategies to cope, including advocacy, peer support, and the use of healthcare team resources. These findings highlight the importance of stage-specific, tailored interventions to support caregivers throughout the HSCT journey. Clear communication, accessible education, and coordinated multidisciplinary care are essential to fostering caregiver resilience and improving patient and family-centered outcomes.

BACKGROUND:Acute lymphoblastic leukemia/lymphoma therapy includes a maintenance phase involving daily administration of an oral chemotherapy called 6-mercaptopurine (6-MP). Adolescents and young adults (AYAs) exhibit lower 6-MP adherence than younger patients, which increases their relapse risk. However, effective oral chemotherapy adherence interventions for this AYA population are lacking. OBJECTIVE:This study describes the human-centered design process of co-creating ADAPTS, an app-based just-in-time adaptive intervention for 6-MP adherence in AYAs. METHODS:Across three design waves with input from AYAs (n = 19) and their caregivers (n = 14), we conducted interviews to co-develop and refine ADAPTS. Qualitative data were coded using conventional content analysis to identify themes that informed app design. RESULTS:Four design priorities for an oral chemotherapy adherence digital intervention were identified: (i) personalize messages to the contextual factors that fluctuate and impact adherence, such as symptoms and mood; (ii) enhance the persuasiveness of adherence messages by framing them positively (e.g., a focus on maintaining remission rather than preventing a relapse), and including the perspectives of peers in popular social media formats; (iii) include customizable app features and the ability to track personal adherence progress; and (iv) facilitate dyadic adherence communication between AYAs and their caregivers, who are often involved. CONCLUSIONS:By developing ADAPTS with AYAs and their caregivers, this digital health intervention offers a novel and patient-centric approach to enhancing adherence. The resulting design priorities and human-centered design methods employed have generalizable potential for addressing other AYA cancer health behaviors.

Background: Health-related social needs (HRSNs), such as food security and housing, significantly impact health outcomes and wellbeing. Although screening tools are widely adopted to identify the needs, sustainable linkage to resources remains challenging. Conversational agents (chatbots) offer potential solutions for tailored and personalized feedback, real-time navigation, yet their usability and trustworthiness among populations with high needs require further exploration. Methods: We conducted a mixed-methods study to evaluate user experiences with the DAPHNE chatbot, which is designed to identify unmet HRSNs and provide personalized resource recommendations. Quantitative and qualitative data were collected from 128 adults having child(ren). Online study design combined scenario/ task-based chatbot use and free form, to guide the engagement. Study measures included usability, task load, satisfaction, and trust. Qualitative analysis involved user feedback and user-chatbot conversation transcripts. We used regression analyses to explore associations between demographic characteristics, self-reported unmet HRSNs and user experience outcomes (usability, satisfaction, task load and trust). Results: Most participants were female (68%), aged 30-49 years (71%), and White (44%) or Black/African American (36%) and Hispanic/Latino (27%), relied on Medicaid/Medicare (83%), and cared for a child with special needs (78%). Participants reported high usability (SUS= 84.7, SD=12.4), low task load (NASA-TLX= 6.8, SD=2.8), strong satisfaction (NPS= 8.0, SD=2.4), and high trust (Mean= 4.1, SD=0.8). Nearly all participants (98%) reported unmet HRSNs, notably food insecurity (76%) and financial limitations (75%). Free-form conversation sessions averaged 3 min and ~20 turns, with greater amount use of assistive buttons than typing. Dialogues centered on financial, housing, and nutrition needs, and 94% of participants reported that the tool helpful finding resources, while requesting design features like saved histories, voice interaction, and richer local resource details. Regression models revealed limited but informative associations. Usability and trust were broadly consistent across most demographic groups, though participants with higher education and lower income showed modest decrements in usability. Several HRSNs, including transportation and utility disruptions, were associated with higher trust and satisfaction, suggesting the assistant may hold particular value for users facing structural barriers. Discussion: The DAPHNE chatbot demonstrates potential as a useful tool for addressing HRSNs, with strong usability and trust among diverse populations. Future designs should focus on longitudinal impact assessments and effectiveness to enhance accessibility and address practical implementation challenges. ### Competing Interest Statement The authors have declared no competing interest. ### Funding Statement This study received BIIG start award from The Ohio State University Translational Data Analytics Institute. ### Author Declarations I confirm all relevant ethical guidelines have been followed, and any necessary IRB and/or ethics committee approvals have been obtained. Yes The details of the IRB/oversight body that provided approval or exemption for the research described are given below: The study protocol (STUDY00004369) was reviewed and approved by the Institutional Review Board at Nationwide Children's Hospital. I confirm that all necessary patient/participant consent has been obtained and the appropriate institutional forms have been archived, and that any patient/participant/sample identifiers included were not known to anyone (e.g., hospital staff, patients or participants themselves) outside the research group so cannot be used to identify individuals. Yes I understand that all clinical trials and any other prospective interventional studies must be registered with an ICMJE-approved registry, such as ClinicalTrials.gov. I confirm that any such study reported in the manuscript has been registered and the trial registration ID is provided (note: if posting a prospective study registered retrospectively, please provide a statement in the trial ID field explaining why the study was not registered in advance). Yes I have followed all appropriate research reporting guidelines, such as any relevant EQUATOR Network research reporting checklist(s) and other pertinent material, if applicable. Yes All data produced in the present study are available upon reasonable request to the authors

Caregivers of children undergoing allogeneic hematopoietic stem cell transplantation (HSCT) face substantial psychological, social, and logistical challenges throughout the transplant journey. This multicenter, longitudinal qualitative study explored the evolving mental health experiences, stressors, and coping strategies of 49 caregivers interviewed across four key time points: transplant (d 0), d +30, d +100, and d +180. Participants reported acute distress early in the process, exacerbated by restrictive hospital environments, the demands of hypervigilant caregiving, financial strain, and the emotional toll of family separation. As care transitioned to the outpatient setting, challenges shifted toward navigating complex home care, managing lingering uncertainty, and balancing the needs of other family members. Throughout the process, caregivers expressed heightened anxiety related to fear of relapse, infection, and long-term complications. Despite these burdens, many caregivers described powerful sources of resilience. Children's emotional strength, honest communication, and a desire to return to normal life helped sustain caregiver optimism. Support from the healthcare team, financial assistance, and access to professional mental health services further alleviated stress. Caregivers emphasized the need for enhanced inpatient environments, clearer outpatient guidance, structured mental health resources, and practical tools like caregiver handbooks. These findings underscore the need for holistic, family-centered care that addresses caregiving's psychological and practical dimensions during pediatric HSCT. Tailored, time-sensitive support strategies are essential to improving caregiver well-being and, in turn, optimizing patient outcomes across the transplant continuum.

In high-risk pediatric hematopoietic stem cell transplant (HCT) populations, caregivers must manage complex treatment regimens at home with limited logistic and social support. These factors increase the risk for medication non-adherence with previously observed rates indicating 52% to 73% of pediatric HCT patients do not take their medications as prescribed during the treatment course. Poor medication adherence places patients at high risk for poor health outcomes, thus, adherence post-HCT remains a critical issue. The development of innovative smartphone solutions, which have proven effective in improving adherence and clinical outcomes in a range of pediatric conditions, have the potential to benefit caregivers, who are managing the medication regimens, of children receiving HCT. The aim of this study was to assess the usability and feasibility of a mHealth app (BMT4me©) designed to serve as a real-time, personalized intervention for medication management/adherence, symptom tracking, and journal keeping. Following a mixed methods approach, 14 caregivers of children (ages 0-18) in the acute phase (first 100 days) post-HCT were recruited from a Midwestern children’s hospital. Caregivers completed semi-structured interviews, standardized measures of usability, and weekly adherence. Quantitative data were analyzed using descriptive statistics. Thematic analysis was used for qualitative data. The mean System Usability Scale score was 86.15 (SD=12.81) at enrollment and 73.13 (SD=16.13) at study completion, with most participants reporting the app easy to use and acceptable during both time points. At enrollment, 80% (n=12) of caregivers reported that the app was effective in motivating them to stay on schedule, and 87% (n=13) indicated they would recommend it to others. At study completion, 75% (n=6) of caregivers found the app helpful for tracking their child's medication schedule, and 64% (n=5) would recommend it to others. Caregivers described the app as “accessible,” “useful,” and “valuable.” Qualitative interviews during both time points revealed caregivers’ positive reactions to the app, particularly regarding medication reminders, tracking symptoms, and notes features, while also providing suggestions for improvements, such as integrating the BMT4me© app with electronic medical records, incorporating educational content, adding fields for recording vital signs, and important phone numbers. The BMT4me© app demonstrated promising usability as a digital health intervention for managing medication adherence and tracking symptoms among pediatric patients undergoing HCT. Caregivers considered the app user-friendly and valuable, with positive feedback on its features, such as medication reminders and symptom tracking. Despite minor reported issues with app functionality, the overall acceptance of the app suggests its potential to support families in managing complex treatment regimens and to improve adherence outcomes. The findings from this study will inform the feasibility of testing in larger randomized controlled trials. ClinicalTrials.gov NCT04976933; https://clinicaltrials.gov/ct2/show/NCT04976933

Background: Researchers and clinicians often use the six-item abbreviated Posttraumatic Stress Disorder Checklist-Civilian (PCL-6) for screening; however, the PCL-6 has not been validated for parents of children with cancer. A valid and reliable short screener like the PCL-6 would allow bedside and/or advanced practice nurses to quickly screen parents for traumatic stress and expedite referrals for support services. Method: This study used data collected during a multisite trial examining an intervention for children with cancer and their parents. This dataset included parental self-report measures of traumatic stress (PCL-6; Impact of Events Scale-Revised [IES-R]), mood disturbance (Profile of Mood States-Short Form [POMS-SF]), and wellbeing (Index of Wellbeing [IWB]). The sample included 136 parents of children (3-8 years old) undergoing cancer treatment at four hospitals. Analysis: For construct validity, we calculated Spearman's correlation coefficient using baseline scores of the PCL-6 with baseline scores for the IES-R, POMS-SF, and IWB. For internal consistency, we calculated Cronbach's alpha using the scores of each of the six items of the PCL-6 for all parent/caregiver participants at baseline. Results: Results indicate good convergent construct validity, reasonable divergent construct validity, and good internal consistency.

BACKGROUND:Pediatric hematopoietic stem cell transplantation (HCT) is an intensive medical procedure that places substantial financial and logistical burdens on families and is associated with significant health risks, such as graft-versus-host disease (GVHD), and infections. The influence of the social determinants of health (SDoH) on outcomes following pediatric HCT is understudied. This study aimed to examine whether SDoH predicts outcomes following pediatric HCT.PROCEDURE:Data were collected from 84 children who received HCT (Mage  = 5.8 years, SD = 3.7) and their primary caregiver. Detailed demographic information was collected from caregivers at baseline, and child health information was extracted from the electronic medical records. Multivariate logistic regression was used to examine the association between SDoH and health outcomes within a 24-month period following pediatric HCT.RESULTS:After controlling for malignancy as reason for transplant and donor type, lower family income predicted the incidence of chronic GVHD. Neighborhood deprivation, total family income, public health insurance, caregiver relationship status, caregiver educational attainment, and perceived family financial difficulties did not predict acute GVHD or the number of infections.CONCLUSIONS:Total family income is a simple family indicator of SDoH that predicts chronic GVHD after pediatric allogeneic HCT. These findings provide further support for the importance of screening of child and family SDoH risks to ensure that fundamental needs can be met to mitigate potential health disparities for up to 2 years following pediatric HCT.

Background The purpose of this study was to describe taking, timing, and dosing adherence to home caregiver-administered intravenous (IV) immunosuppressants in a sample of pediatric hematopoietic stem cell transplant (HCT) recipients.Procedures Sixteen children who had undergone HCT, ages 3 months to 15 years, and their caregivers participated. All caregivers were biological mothers. Caregivers completed a demographic questionnaire as part of a larger study and brought in portable infusion pumps to download the pump data at the time of their child's post-HCT clinic visit. Pump data were then examined for dose taking, timing, and amount for 30 days following discharge.Results Despite the importance of the precise timing of IV immunosuppressants, adherence taking, dosing, and timing varied widely in this sample. The mean percentage of doses administered was 98.72%, and 81.3% of children received all doses of immunosuppressant. However, only 62% of doses were given on time and the mean difference between the prescribed and actual administration time was 67.03 minutes.Conclusions Although taking adherence was high, the timing and dosing adherence to IV immunosuppressants in the home was poor. Additional support to promote adherence should be provided including assisting caregivers to identify and use adherence strategies specific to their child's IV immunosuppressant regimen in the home.

Background Underrepresented minority patients with surgical malignancies experience disparities in outcomes. The impact of provider-based factors, including communication, trust, and cultural competency, on outcomes is not well understood. This study examines modifiable provider-based barriers to care experienced by patients with surgical malignancies. Methods A parallel, prospective, mixed-methods study enrolled patients with lung or gastrointestinal malignancies undergoing surgical consultation. Surveys assessed patients’ social needs and patient-physician relationship. Semi-structured interviews ascertained patient experiences and were iteratively analyzed, identifying key themes. Results The cohort included 24 patients (age 62 years; 63% White and 38% Black/African American). The most common cancers were lung ( n = 18, 75%) and gastroesophageal ( n = 3, 13%). Survey results indicated that food insecurity ( n = 5, 21%), lack of reliable transportation ( n = 4, 17%), and housing instability ( n = 2, 8%) were common. Lack of trust in their physician ( n = 3, 13%) and their physician’s treatment recommendation ( n = 3, 13%) were identified. Patients reported a lack of empathy ( n = 3, 13%), lack of cultural competence ( n = 3, 13%), and inadequate communication ( n = 2, 8%) from physicians. Qualitative analysis identified five major themes regarding the decision to undergo surgery: communication, trust, health literacy, patient fears, and decision-making strategies. Five patients (21%) declined the recommended surgery and were more likely Black (100% vs. 21%), lower income (100% vs. 16%), and reported poor patient-physician relationship (40% vs. 5%; all p < 0.05). Conclusions Factors associated with declining recommended cancer surgery were underrepresented minority race and poor patient-physician relationships. Interventions are needed to improve these barriers to care and racial disparities.

Purpose: Complementary and integrative medicine (CIM) therapies (i.e., non-conventional Western medicine interventions) may reduce side-effects associated with pediatric oncology treatment. CIM therapies may also improve caregiver psychological and physical health that is exacerbated during pediatric cancer treatment. Despite known benefits, these therapies are not widely used within pediatric oncology populations in the United States. To guide and promote CIM use among this population, the aim of this project was to qualitatively explore factors that contribute to caregivers' decision to include CIM use in their own and child's care. Methods: Twenty caregivers of children (ages 0.5-14 years) being treated for cancer participated in this study. Each completed a demographic form and the CIM use questionnaire. Qualitative interviews followed by a card sort task were used to assess barriers and facilitators of uptake for caregivers and their child with cancer. Results: A number of predisposing (e.g., child age, beliefs) and needs factors (e.g., potential to treatment-related side-effects) provide insight into caregivers' decisions to use CIM for their child. Analyses also revealed the importance of enabling factors (e.g., resources) for caregiver use. Caregivers also reported benefiting from additional information about risk/benefit analysis of these therapies, and current research for CIM use in caregivers and children being treated for cancer. Conclusion: Children may benefit from individually tailored complementary and integrative medicine consultations that explore patient history and specific needs factors to improve preference concordant care and uptake. Caregivers may benefit from support that improves enabling factors associated with care (e.g., improved accessibility).