Social determinants of health predict health outcomes following pediatric allogeneic hematopoietic stem cell transplant.

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.

Barriers to medication adherence among adolescents and young adults with cancer.

BACKGROUND: Adherence promotion is a critical component of adolescent and young adult (AYA) cancer care, but predictors of nonadherence that could be targeted in intervention efforts remain largely unknown. The purpose of this multi-site longitudinal observational study was to examine the relationship between barriers and medication adherence among AYAs with cancer. PROCEDURE: Sixty-five AYAs (ages 15-24 years; mean age = 18.97 years, SD = 2.51; Mmean time since diagnosis = 1.42 years, SD = 1.95) with newly diagnosed or relapsed cancer completed self-report measures of barriers and adherence at quarterly study visits and used an electronic adherence monitoring device for 12 months. Longitudinal mixed effects models were used to examine our primary hypothesis that greater barriers are related to lower adherence over time. Descriptive statistics were used to explore our secondary aim of describing the frequency and patterns of barriers endorsed by AYAs with cancer. RESULTS: After controlling for covariates (time, medication type, race, ethnicity, diagnosis, time since diagnosis), a greater number of barriers was associated with lower electronically monitored (ß = -5.99, p = .005) and self-reported (ß = -1.92, p < .001) adherence. The specific barriers endorsed by AYAs differed across participants, and the majority of AYAs endorsed an entirely different pattern of barriers than any other AYA in the study. CONCLUSION: Barriers are associated with nonadherence and may be a promising target for intervention. Individual variability across barriers, however, suggests that tailoring may be necessary, and a promising next step is to explore personalized approaches to adherence promotion.

Pediatric Hematopoietic Stem Cell Transplant Medication Adherence Facilitators and Strategies: A Qualitative Study.

OBJECTIVE: Taking medications as prescribed after hematopoietic stem cell transplant (HCT) is key for ensuring children's survival; however, suboptimal medication adherence is common. Development of evidence-based interventions to improve medication adherence post-HCT is contingent upon understanding what adherence facilitators (i.e., unique traits, characteristics, or resources inherent to the individual, medical treatment, or healthcare team) and strategies (i.e., tools caregivers or medical providers intentionally use) promote medication adherence in this population. Therefore, this study examined caregiver-perceived medication facilitators post-HCT. METHODS: Semi-structured qualitative interviews and demographic questionnaires were completed by 29 caregivers of children (≤12 years) who had received an HCT within the past 2 years. RESULTS: Thematic analysis guided by grounded theory revealed 14 saturated themes that were grouped into 4 categories: family facilitators, medication facilitators, caregiver strategies, and multidisciplinary treatment team strategies. CONCLUSIONS: Overall, findings suggest that caregivers of children who received an HCT are highly resourceful and independently develop many strategies to assist them with medication management after their child's HCT. These facilitators and strategies varied between caregivers and over time. Despite prevalent facilitators and strategies, caregiver burden associated with medication adherence remains high. Caregivers may benefit from the multidisciplinary treatment team providing individualized and multicomponent (educational and behavioral) medication adherence supports to ease this burden particularly shortly after hospital discharge.

A Medication Adherence Promotion System to Reduce Late Kidney Allograft Rejection: A Quality Improvement Study.

RATIONALE & OBJECTIVE: Adolescent and young adult kidney transplant recipients have a high risk of rejection related to suboptimal adherence. Multicomponent interventions improve adherence in controlled trials, but clinical implementation is lacking. We describe an initiative to reduce allograft rejection using evidence-based adherence promotion strategies. STUDY DESIGN: Interrupted time series. SETTING & PARTICIPANTS: Kidney transplant recipients cared for at Cincinnati Children's Hospital ≥ 1 year after transplant and taking ≥1 immunosuppressive medication(s) from 2014 through 2017. QUALITY IMPROVEMENT ACTIVITIES: The following interventions, collectively called MAPS (Medication Adherence Promotion System), were implemented over 14 months: (1) adherence promotion training for clinical staff, 2) electronic health record-supported adherence risk screening, (3) systematic assessment of medication adherence barriers, (4) designation of specific staff to address adherence barriers, (5) shared decision-making with the patients to overcome adherence barriers, (6) follow-up evaluation to assess progress, and (7) optional electronic medication monitoring. OUTCOMES: Primary Outcome: Late acute rejection. Process measures were conducted to assess barriers, identify barriers, and perform interventions. The secondary outcomes/balancing measures were de novo donor-specific antibodies (DSA), biopsy rate, and rejections per biopsy. ANALYTICAL APPROACH: Time series analysis using statistical process control evaluated patient-days between acute rejections as well as monthly rejections per 100 patient-months before and after implementation. To control for known rejection risk factors including changes in treatment and case mix, multivariable analyses were performed. RESULTS: The monthly rejection rate fell from 1.61 rejections per 100 patient-months in the 26 months before implementation to 0.88 rejections per 100 patient-months in the 22 months after implementation. In the multivariable analysis, MAPS was associated with a 50% reduction in rejection incidence (incidence rate ratio, 0.50 [95% CI, 0.27-0.91]; P = 0.02). DSA and time since transplant (per each additional year) were also associated with rejection incidence (incidence rate ratio, 2.27 [P = 0.02] and 0.87 [P = 0.02], respectively). LIMITATIONS: Single-center study, and potential confounding by unmeasured variables. CONCLUSIONS: Clinical implementation of evidence-based adherence-promotion strategies was associated with a 50% reduction in acute rejection incidence over 2 years.

Pain, depressive symptoms, and health-related quality of life among survivors of pediatric hematopoietic stem cell transplant.

OBJECTIVE: Pediatric hematopoietic stem cell transplant (HCT) is an intensive medical procedure associated with significant late effects, of which pain is a prominent example. While pain is associated with increased depressive symptoms and health-related quality-of-life (HRQoL) impairments in other pediatric chronic illness populations, associations between these variables are not well understood in pediatric HCT. Clarifying these associations may inform clinical interventions to improve health outcomes following pediatric HCT. This study aimed to investigate the relations between pain intensity, depressive symptoms, and HRQoL in survivors of pediatric HCT. METHOD: Fifty-one survivors of pediatric HCT (Mage  = 14.3 years, standard deviation [SD] = 4.3; 58.8% male; 80.4% White) completed self-report measures of pain intensity, depressive symptoms, and HRQoL. Demographic and disease information was collected via demographic forms and medical record review. Path analysis was used to examine hypothesized associations between pain intensity, depressive symptoms, and HRQoL. RESULTS: Analyses revealed direct effects of pain intensity on depressive symptoms (estimate [Est.] = .23, p < .001) and HRQoL (Est. = -.2, p = .04), and direct effects of depressive symptoms on HRQoL (Est. = -.68, p < .001). Depressive symptoms also mediated the relationship between pain intensity and HRQoL (Est. = -.16, p = .006). CONCLUSIONS: Greater pain intensity was associated directly with increased depressive symptoms and indirectly with HRQoL through depressive symptoms. Results of this study suggest that multitargeted cognitive behavioral interventions that address pain and depressive symptoms may improve HRQoL ratings in survivors of pediatric HCT.

Caregivers' Experience of Medication Adherence Barriers during Pediatric Hematopoietic Stem Cell Transplant: A Qualitative Study.

OBJECTIVE: Medications are critical for reducing morbidity and mortality risk in pediatric hematopoietic stem cell transplant (HCT). Nonetheless, medication adherence is suboptimal in this population. Identifying and managing barriers to medication management (i.e., medication barriers) is a key component of supporting medication adherence. However, understanding how medication barriers uniquely impact the pediatric HCT population and which barriers characterize each treatment stage remain unclear. Therefore, this study examined caregiver-perceived medication barriers over the course of pediatric HCT. METHODS: Semi-structured qualitative interviews and demographic questionnaires were completed by 29 caregivers of children (≤12 years) who had received an HCT in the past 24 months and were either still admitted to, or had been discharged from, the hospital. RESULTS: Grounded methodology revealed 21 qualitative themes grouped into 6 hierarchical categories. Findings reflected barriers to be present across HCT treatment but to differ based on treatment stage with only child medication refusal being a consistent barrier across all stages. Barriers were particularly prevalent after hospital discharge post-HCT when caregivers assumed full responsibility for medication management. In addition, families approaching hospital discharge often lacked insight about these post-discharge barriers such that they did not report anticipating the range of barriers described by caregivers who had already been discharged from the hospital and taken on full responsibility for medication management. CONCLUSIONS: Findings support the benefit of medication barrier assessment across HCT treatment. These results suggest that families may benefit from intervention to address the specific barriers they experience around medication adherence especially during the post-HCT outpatient period.

Development and Preliminary Validation of a Multidimensional Psychosocial Assessment Strategy for Young Adults With Cancer.

OBJECTIVE: Regular psychosocial assessment is a best-practice guideline for young adult oncology care, but multipurpose, multidimensional, developmentally appropriate patient-reported outcome measurement strategies for young adults with cancer are lacking. This study reported on the development and preliminary validation of the Young Adult Psychosocial Assessment Strategy (YA-PAS), a tool designed to meet this clinical need. METHODS: The YA-PAS was developed based on the literature and clinician feedback. 20 young adults with cancer participated in cognitive interviews to provide feedback on complexity, readability, and applicability to inform measure refinement. Following refinements, 100 young adults with a history of cancer participated in an observational study including a preliminary evaluation of YA-PAS factor structure, internal consistency, test-retest reliability, construct and criterion validity, feasibility, and acceptability. RESULTS: Cognitive interviews and psychometric evaluation informed modifications and resulted in a measure with 9 domains (anxiety, depression, cognitive functioning, post-traumatic stress, family stressors, support, social isolation, self-efficacy for symptom management, and self-efficacy for medication management) and nonscoring items assessing substance use, life stressors, resources, educational/vocational status, and relationship status. 8 of 9 domains demonstrated acceptable internal consistency (Cronbach's α ≥ 0.70), substantial (r = 0.61-0.80) or almost perfect (r > 0.80) test-retest reliability, and evidence of domain and cut-point validity. 89% of participants were able to complete the YA-PAS within 20 min and 87% were satisfied with the measure. CONCLUSIONS: The YA-PAS demonstrated promising psychometric properties, feasibility, and acceptability. Clinical implications and research recommendations are discussed.

Psychometric evaluation of the brief RCOPE and relationships with psychological functioning among caregivers of children undergoing hematopoietic stem cell transplant.

OBJECTIVE: Spiritual and religious (S/R) coping is a relevant yet understudied domain of coping among caregivers of children undergoing hematopoietic stem cell transplantation (HCT). The aims of this manuscript are to: (1) conduct the first psychometric evaluation of the Brief RCOPE in this population; (2) examine levels of and changes in S/R coping over time; and (3) explore the relationship between S/R coping trajectories and psychological functioning post-HCT. METHODS: Caregivers (n = 170) of children (ages ≤12 years, n = 170) undergoing HCT completed the Brief RCOPE and the Brief Symptom Inventory (BSI) pre- and at multiple time points post-HCT discharge. Factor structure, internal consistency, and validity were examined. Growth mixture models were used to identify subgroups with similar S/R coping trajectories, with group memberships added to mixture models to explore relationships between group membership and caregiver psychological functioning trajectories. RESULTS: The Brief RCOPE exhibited the previously-supported two factor structure and each subscale demonstrated strong internal consistency (α = 0.85 and 0.92). Validity was supported by significant correlations with BSI scores. There were distinct subgroups of caregivers with different patterns of positive (n = 4 subgroups) and negative (n = 3 subgroups) S/R coping, with negative coping subgroup membership predicting changes in psychological functioning. CONCLUSIONS: The Brief RCOPE is a promising measure for assessing S/R coping among caregivers of children undergoing HCT and has the potential to identify caregivers at risk for poorer long-term psychological functioning.

Predicting acute rejection in children, adolescents, and young adults with a kidney transplant by assessing barriers to taking medication.

BACKGROUND: Nonadherence to immunosuppression is common among pediatric, adolescent, and young adult kidney transplant recipients and a leading cause of graft loss. Assessing barriers to medication adherence in clinical practice may identify patients at risk for rejection and provide therapeutic targets. METHODS: Kidney transplant patients and/or their caregivers were assessed for 14 barriers to medication adherence using the barriers assessment tool. We compared rejection rates between patients with at least one reported adherence barrier to those without reported adherence barriers using a Kaplan-Meier estimator and Cox proportional hazard models to adjust for other mediators of acute rejection at 2 years following barriers assessment. RESULTS: Ninety-eight patients were assessed for barriers to adherence. Over the 2-year observation period, 22 patients developed biopsy-proven acute rejection (BPAR). Kaplan-Meier estimates show that patients with an identified barrier to adherence were more likely to have BPAR (p = 0.02) than patients without an identified barrier in the 24 months following barriers assessment. The median time to rejection for patients who experienced acute rejection was 175.5 days (IQR 63-276 days) from the time of barriers assessment. An identified barrier to adherence remained the only statistically significant predictor of BPAR with Cox modeling (HR 2.6, p = 0.04), after accounting for age, sex, and race. CONCLUSIONS: Pediatric and adolescent kidney transplant recipients with identified adherence barriers are at increased risk for acute rejection. Barriers to adherence provide a potentially modifiable therapeutic target that can be assessed in clinic to guide targeted interventions.

Caregiver Religious Coping and Posttraumatic Responses in Pediatric Hematopoietic Stem Cell Transplant.

OBJECTIVE: Caregivers often experience their child's hematopoietic stem cell transplant (HCT) treatment as traumatic. Although many caregivers develop posttraumatic stress symptoms (PTSS) in response to supporting their child through HCT, other caregivers demonstrate posttraumatic growth (PTG). Religious coping may contribute to these different adjustment trajectories; however, more information is needed to clarify the unique associations of positive versus negative religious coping on caregiver PTSS and PTG in the context of pediatric HCT. This study aimed to examine the relationships between negative and positive religious coping on caregivers PTSS and PTG while controlling for caregiver sex, self-efficacy, and social support. METHODS: Caregivers (N = 140) of youth admitted to the hospital for their first HCT were asked to complete self-report measures of their use of positive and negative religious coping, PTSS, PTG, social support, and self-efficacy. Two hierarchical linear regressions were conducted to test hypotheses. RESULTS: Greater positive religious coping, but not negative religious coping, was associated with caregivers reporting more PTG in response to pediatric HCT. More negative religious coping, but not positive religious coping, was associated with caregivers experiencing greater PTSS. CONCLUSIONS: Engaging in positive religious coping appears to promote better caregiver adjustment to pediatric HCT, whereas negative religious coping may increase caregiver risk for developing PTSS. Screening caregivers' religious beliefs, including the type of religious coping they employ, could inform providers regarding the best approach to supporting caregivers towards a growth trajectory and mitigate PTSS.

Family Adjustment to Pediatric Hematopoietic Stem Cell Transplant During COVID-19.

OBJECTIVE: The COVID-19 pandemic has been difficult for families across the world due to fears about infection risk, increased social isolation, and significant changes in family roles and routines. Families with a child undergoing pediatric hematopoietic stem cell transplant (HCT) may be at even greater risk for poor adjustment during COVID-19 given their child's increased risk for infection. The purpose of the current study was to qualitatively examine the impact of COVID-19 on family adjustment during pediatric HCT to inform clinical care. METHODS: Twenty-nine caregivers of children (≤12 years) who underwent an HCT within the past 2 years completed semi-structured qualitative interviews and demographic questionnaires in the first 4 months following initial COVID-19 quarantine. RESULTS: Twenty-two themes emerged from the interviews using grounded theory methodology. Although nearly half of caregivers described COVID-19 as a stressor, 69% of caregivers reported adequate adjustment to COVID-19. Caregivers generally attributed their positive adjustment to HCT preparing the family for COVID-19 and more difficult adjustment to increased physical or social isolation and COVID-19 amplifying germ fears. The child's HCT treatment status also had important implications on family adjustment to COVID-19. CONCLUSIONS: Results suggest that families undergoing pediatric HCT are uniquely prepared to cope with the impacts of a global pandemic; however, families experiencing certain risk factors (e.g., more recent transplant, impaired access to social support, reduced access to coping tools) may experience poorer adjustment during pandemics such as COVID-19 and may benefit from increased psychosocial support from their healthcare team.

Relationship Between Caregiver Uncertainty, Problem-Solving, and Psychological Adjustment in Pediatric Cancer.

OBJECTIVE: The current study examined the roles of constructive and dysfunctional problem-solving strategies in the relationships between illness uncertainty and adjustment outcomes (i.e., anxious, depressive, and posttraumatic stress symptoms) in caregivers of children newly diagnosed with cancer. METHODS: Two hundred thirty-eight caregivers of children (0-19 years of age) newly diagnosed with cancer (2-14 weeks since diagnosis) completed measures of illness uncertainty, problem-solving strategies, and symptoms of anxiety, depression, and posttraumatic stress. RESULTS: A mediation model path analysis assessed constructive and dysfunctional problem-solving strategies as mediators between illness uncertainty and caregiver anxious, depressive, and posttraumatic stress symptoms. Dysfunctional problem-solving scores partially mediated the relationships between illness uncertainty and anxious, depressive, and posttraumatic stress symptoms. Constructive problem-solving scores did not mediate these relationships. CONCLUSIONS: The current findings suggest that illness uncertainty and dysfunctional problem-solving strategies, but not constructive problem-solving strategies, may play a key role in the adjustment of caregivers of children newly diagnosed with cancer. Interventions aimed at managing illness uncertainty and mitigating the impact of dysfunctional problem-solving strategies may promote psychological adjustment.

Implementation of the Psychosocial Standards for Caregiver Mental Health Within a Pediatric Hematology/Oncology Program.

The assessment of mental health needs and access to appropriate interventions for parents and caregivers is one of 15 evidence-based standards for the psychosocial care of children with cancer and their families. The objectives of this paper are to describe one program's approach to meeting this standard in oncologic, hematologic, and immunologic populations and outline key ethical, regulatory, and logistical considerations in providing mental health services to caregivers in a pediatric medical setting. A description of the Caregiver Mental Health Program (CMHP) is provided along with a case example to illustrate key considerations, including multiple family members needing care, access to psychiatric services, scope of treatment, confidentiality and privacy, and logistics. Challenges in the development of the CMHP as well as the program's benefits are discussed. Implementation of this standard of care will vary across institutions depending on various factors, such as staffing and programmatic resources and institutional culture.

Association between day of the week and medication adherence among adolescent and young adult kidney transplant recipients.

Disruption of usual routines may hinder adherence, increasing the risk of rejection. We aimed to compare weekend versus weekday medication adherence among adolescent and young adult kidney transplant recipients, hypothesizing poorer adherence on weekends. We examined data from the Teen Adherence in Kidney transplant Effectiveness of Intervention Trial (TAKE-IT). We assessed the 3-month run-in period (no intervention) and the 12-month intervention interval, considering a potential interaction between weekend/weekday and treatment group. Adherence was monitored using electronic pillboxes in participants 11-24 years followed in eight transplant centers in Canada and the United States. We used logistic regression with generalized estimating equations to estimate the association between weekends/weekdays and each of perfect taking (100% of prescribed doses taken) and timing (100% of prescribed doses taken on time) adherence. Taking (OR = 0.72 [95% CI 0.65-0.79]) and timing (OR = 0.66 [95% CI 0.59-0.74]) adherence were poorer on weekends than weekdays in the run-in (136 participants) and the intervention interval (taking OR = 0.74 [0.67-0.81] and timing OR = 0.71 [95% CI 0.65-0.77]). There was no interaction by treatment group (64 intervention and 74 control participants). Weekends represent a disruption of regular routines, posing a threat to adherence. Patients and families should be encouraged to develop strategies to maintain adherence when routines are disrupted. TAKE-IT registration number: Clinicaltrials.gov registration: NCT01356277 (May 17, 2011).

The impact of pediatric hematopoietic stem cell transplant timing and psychosocial factors on family and caregiver adjustment.

BACKGROUND: The impact of pediatric hematopoietic stem cell transplant (HCT) on family functioning varies, but little is known about how the timing of HCT in children's treatment course contributes to this variability. This study examines how preexisting child, sibling, and family problems, the length of time between diagnosis to HCT, and children's age at HCT are associated with family and caregiver functioning. PROCEDURE: Caregivers (n = 140) of children (≤18 years old) scheduled to undergo their first HCT completed the Psychological Assessment Tool-HCT and the Impact on Family Scale. Treatment information was extracted from electronic medical records. A bootstrapped multivariate path analysis was used to test the hypotheses. RESULTS: More preexisting family problems related to greater caregiver perceived negative impact of their child's HCT across family and caregiver functioning domains. Less time between diagnosis and HCT was associated with greater caregiver personal strain, particularly for those with younger children undergoing HCT. Younger child age at HCT was also associated with a larger negative impact on family social functioning. CONCLUSIONS: Families with preexisting problems are the most at-risk for experiencing negative impacts related to their child's HCT. The timing of a child's HCT within their treatment course and the child's age during HCT may impact families' social functioning and caregiver adjustment. Screening families for preexisting family problems, particularly for families with young children or who are abruptly learning of their child's need for an HCT, may assist providers in identifying families who would benefit from earlier or more intensive psychosocial support.

Psychosocial Risk Profiles Among American and Dutch Families Affected by Pediatric Cancer.

OBJECTIVE: Little is known about relations between domains of psychosocial risk among pediatric cancer populations. The Psychosocial Assessment Tool 2.0 (PAT2.0) is one internationally validated screening measure that can examine these relations. This study aimed to examine risk profiles and predictors of these patterns exhibited by American and Dutch families. METHODS: Caregivers of children newly diagnosed with cancer (N = 262; nUSA=145, nNL=117) completed the PAT2.0 as part of larger studies conducted in the United States and the Netherlands. Latent profile analysis and multinomial logistic regression examined differences in demographic and medical variables across risk profiles. Domains assessed included Family Structure/Resources, Child Problems, Sibling Problems, Family Problems, Caregiver Stress Reactions, and Family Beliefs. RESULTS: Four groups were identified: "Low-Risk" (n = 162) defined by generally low risk across domains; "Moderate-Caregiver" (n = 55) defined by elevated Caregiver Stress Reactions domain; "Moderate-Children" (n = 25) defined by elevated Child Problems and/or Sibling Problems, and "Elevated-Risk" (n = 20) marked by generally high overall risk. Dutch families had higher odds of being in the Elevated-Risk group, compared to the Low-Risk group. Caregiver age, gender, and educational attainment predicted group membership. Families classified as Targeted or Clinical had higher odds of being in the Moderate or Elevated risk groups. CONCLUSION: The PAT2.0 appears to identify largely similar patterns of risk, suggesting that families experience common psychosocial difficulties in both American and Dutch societies. The two Moderate groups demonstrated specific risk sources, suggesting that evaluation of domain patterns, rather than reliance on PAT2.0 risk level, could be of clinical benefit.

Parental Efficacy and Control Questionnaire in Hematopoietic Stem Cell Transplant: Preliminary Validation.

OBJECTIVE: Develop and evaluate the preliminary validity of a self-report measure of parents' treatment-related efficacy and control, Parental Efficacy and Control Questionnaire-Hematopoietic Stem Cell Transplant (PECQ-HCT), in a pediatric HCT sample. METHODS: Participants included 185 parents of children (≤12 years old) receiving HCT participating in a larger, longitudinal study. Parents completed the PECQ-HCT as well as measures of social problem-solving skills, collective family efficacy, family beliefs, and parental distress. RESULTS: Exploratory factor analysis results indicated that a 37-item four-factor model was the best fitting and most theoretically sound, χ2(df = 1,596) = 14,089.95, p < .01, comparative fit index = 0.92, Tucker-Lewis Index = 0.90, and root mean square error of approximation = 0.07. Preliminary subscale scores demonstrated adequate internal consistency as well as good content and criterion-related validity. CONCLUSIONS: If replicated using a confirmatory factor analysis in a separate sample, these findings suggest that the four-factor PECQ-HCT measure may be useful for measuring HCT-related parental efficacy and perceived control.

Patient-Reported Outcomes for Pediatric Adherence and Self-Management: A Systematic Review.

OBJECTIVE: Treatment adherence is approximately 50% across pediatric conditions. Patient-reported outcomes (PROs) are the most common method of measuring adherence and self-management across research and clinical contexts. The aim of this systematic review is to evaluate adherence and self-management PROs, including measures of adherence behaviors, adherence barriers, disease management skills, and treatment responsibility. METHODS: Following PRISMA guidelines for systematic reviews, literature searches were performed. Measures meeting inclusion/exclusion criteria were evaluated using Hunsley and Mash's (2018) criteria for evidence-based assessment across several domains (e.g., internal consistency, interrater reliability, test-retest reliability, content validity, construct validity, validity generalization, treatment sensitivity, and clinical utility). Rating categories were adapted for the present study to include the original categories of adequate, good, and excellent, as well as an additional category of below adequate. RESULTS: After screening 172 articles, 50 PROs across a variety of pediatric conditions were reviewed and evaluated. Most measures demonstrated at least adequate content validity (n = 44), internal consistency (n = 34), and validity generalization (n = 45). Findings were mixed regarding interrater reliability, test-retest reliability, and treatment sensitivity. Less than half of the measures (n = 22) exhibited adequate, good, or excellent construct validity. CONCLUSIONS: Although use of adherence and self-management PROs is widespread across several pediatric conditions, few PROs achieved good or excellent ratings based on rigorous psychometric standards. Validation and replication studies with larger, more diverse samples are needed. Future research should consider the use of emerging technologies to enhance the feasibility of broad implementation.

Screening for Family Psychosocial Risk in Pediatric Hematopoietic Stem Cell Transplantation with the Psychosocial Assessment Tool.

Family psychosocial risk screening is an important initial step in delivering evidence-based care in hematopoietic stem cell transplantation (HCT). Establishing an evidence-based screening approach that is acceptable, reliable, and valid is an essential step in psychosocial care delivery. This is a 3-institution multimethod study. In part 1, caregivers of children about to undergo HCT (n = 140) completed the Psychosocial Assessment Tool-Hematopoietic Cell Transplantation (PAT-HCT), a brief parent report screener adapted for HCT, and validating questionnaires. Families received feedback on their risks identified on the PAT-HCT. In part 2, 12 caregivers completed a semistructured interview about their perceptions of the PAT and the feedback process. The reliability and validity of the PAT-HCT total and subscale scores were tested using Kuder-Richardson-20 (KR-20) and Pearson correlations. Thematic content analysis was used to analyze the qualitative interview data. Internal consistency for the total score (KR-20 = .88) and the Child Problems, Sibling Problems, Family Problems, and Stress Reactions subscales were strong (KR-20 >.70). Family Structure, Social Support, and Family Beliefs subscales were adequate (KR-20 = .55 to .63). Moderate to strong correlations with the criteria measures provided validation for the total and subscale scores. Feedback was provided to 97.14% of the families who completed the PAT-HCT, and the mean rating of acceptability was >4.00 (on a 5-point scale). The qualitative data indicate that families appreciate the effort to provide screening and feedback. The PAT-HCT is a psychometrically sound screener for use in HCT. Feedback can be given to families. Both the screener and the feedback process are acceptable to caregivers.

A psychosocial clinical care pathway for pediatric hematopoietic stem cell transplantation.

OBJECTIVE: Currently, no evidence-based psychosocial clinical care pathways (PCCP) exist to triage psychosocial risk levels and guide delivery of psychosocial care to youth receiving a hematopoietic stem cell transplantation (HCT) and their families. The purpose of this paper is to describe the use of qualitative research methodologies to develop PCCP in pediatric HCT consistent with the Standards for Psychosocial Care developed for children with cancer. METHODS: We previously used qualitative methodologies to interview parents to identify four principles to inform the development of PCCPs. Then in this study a focus group with parents and multidisciplinary clinicians was conducted to assess the acceptability of the PCCP, suggest modifications, and provide input on its use. RESULTS: The PCCP is six-step pathway, starting with a standardized screening assessment with the Psychosocial Assessment Tool (PAT-HCT) that identifies the family's specific care needs. The focus group data support overall assessment with the PAT-HCT and the care principles underlying this approach. CONCLUSIONS: This PCCP is a systemic multidisciplinary model for providing psychosocial care that is ready for the next stage of development and evaluation in clinical care.