Recommendations for Providing Medication Adherence Support After Pediatric Hematopoietic Stem Cell Transplant: Caregivers' Lived Experience.

Background. Medication adherence is challenging after pediatric hematopoietic stem cell transplant (HCT), particularly after hospital discharge. Post-HCT medication adherence is important to manage morbidity and mortality risk. Designing interventions that are effective and acceptable to caregivers is key to improving post-HCT medication adherence. This study aimed to characterize caregiver preferences about medication adherence support from their child's medical team. Methods. Twenty-nine caregivers of children who received an HCT completed semi-structured qualitative interviews about their experience with, and recommendations for improving, medication adherence support provided by the medical team. Twenty-two caregivers also completed a card sort task to clarify the content of received support and caregiver recommendations for future HCT families. Results. Thematic analysis revealed eight themes grouped into two categories: Communication Is Key and Practical Medication Adherence Support. Caregivers emphasized the importance of communication in helping them manage their child's outpatient medications and provided suggestions to further strengthen communication. The types of practical medication adherence support used varied across caregivers highlighting the importance of tailoring adherence support to each family's needs. Caregivers also identified all the domains as potentially helpful for other families. Discussion. Findings suggest that caregivers prefer that efforts to improve outpatient medication adherence post-HCT prioritize the medical team initiating frequent, clear, and open communication about medications, and provide educational materials on adherence (e.g., handouts). Results also indicate that practical medication adherence supports should be offered based on family preferences but that families may particularly appreciate tips about addressing medication challenges based on other caregivers' lived experience.

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.

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.

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.

Mobile health use predicts self-efficacy and self-management in adolescents with sickle cell disease.

Sickle cell disease (SCD) is associated with significant health challenges that often worsen during adolescence. Living with SCD requires a substantial amount of self-management and mobile health (mHealth) holds considerable promise for assessing and changing behaviors to improve health outcomes. We integrated a mobile app as an adjunct to a group intervention (SCThrive) and hypothesized that more engagement with the mHealth app would increase self-management and self-efficacy for adolescents and young adults (AYA) with SCD. Twenty-six AYA ages 13-21 years (54% female; 46% HbSS genotype; all African-American/Black) received six weekly group sessions (three in-person, three online). Participants were provided with the mobile app (iManage for SCD) to record progress on their self-management goals and log pain and mood symptoms. The Transition Readiness Assessment Questionnaire (TRAQ-5) assessed self-management skills and the Patient Activation Measure (PAM-13) assessed self-efficacy at baseline and post-treatment. Logging on to the app more frequently was associated higher mood ratings (r = .54, CI[.18, .77], p = .006) and lower pain ratings (r = -.48, CI[-.77, -.02], p = .04). Regression analyses demonstrated that after controlling for scores at baseline, the number of logins to the app predicted self-management skills (p = .05, η2 = .17) and possibly self-efficacy (p = .08, η2 = .13). Our study findings indicate that it can be challenging to maintain engagement in mHealth for AYA with SCD, but for those who do engage, there are significant benefits related to self-management, self-efficacy, and managing pain and mood.

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.

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.

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.

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.

Longitudinal examination of family efficacy following pediatric stem cell transplant.

OBJECTIVE: Pediatric stem cell transplant (pSCT) is emotionally demanding for families. Yet, we know little of how the family unit responds to the adversity of pSCT within the first year after transplant. Family efficacy, an indicator of family resilience, is linked to positive parent, child, and family adjustment. Better understanding the factors that promote family efficacy during this difficult time could inform modifiable intervention targets and improve child and parent adjustment. The primary objectives were to examine patterns of family efficacy beliefs and identify factors that promote or hinder family efficacy. METHODS: Ninety caregivers (71% white, 7% black, 3% Hispanic, 4% Asian, 14% multiple ethnicities) of children receiving pSCT completed demographic forms, the Psychosocial Assessment Tool, and the Filial Parental and Collective Family Efficacy Beliefs scale prior to the family's discharge, and 1, 3, 6, and 9 months post-discharge. Latent growth curve modeling was used to examine family efficacy across time. Parent, child, and sibling distress, social support, and demographic factors served as predictors. RESULTS: Latent growth curve modeling demonstrated that family efficacy was stable for 9 months post pSCT discharge. Social support was positively related to family efficacy beliefs. No other variables predicted family efficacy. CONCLUSION: Most families perceive themselves as resilient following pSCT. Social relationships and support are critical in maintaining a family's sense of efficacy during the arduous pSCT course.

Earlier Pediatric Psychology Consultation Predicts Lower Stem Cell Transplantation Hospital Costs.

Objective: The purpose of this study was to examine the hypothesis that earlier time to psychology consultation would predict lower costs for the initial stem cell transplant (SCT) hospitalization among patients receiving care at a children's hospital. Methods: A retrospective medical record review identified 75 patients (ages 0-32 years) with one or more visits by a licensed clinical psychologist during the initial SCT hospitalization from 2010 to 2014. Demographic and clinical variables were obtained from the electronic medical record and hospitalization costs were obtained from patient billing records. A generalized linear model with a gamma distribution and log link function was used to estimate the relationship between time to psychology consultation and cost for the initial SCT hospitalization while controlling for demographic, clinical, and utilization factors. Results: After controlling for age at SCT, gender, race, insurance status, diagnosis, SCT type, length of stay, and number of psychology visits, earlier time to psychology consultation predicted lower costs for the initial SCT hospitalization (χ2 = 6.83, p = .01). When the effects of covariates were held constant, every day increase in the time to psychology consultation was associated with a 0.3% increase in SCT hospitalization costs (ß = 0.003, SE = 0.001). Conclusions: Results suggest that facilitating consultations with a pediatric psychologist early in the initial SCT hospitalization may reduce costs for patients undergoing SCT at children's hospitals. Future research is needed to determine the optimal timing of psychology consultation and quantify the economic impact of psychological services.

Development and evaluation of iManage: A self-management app co-designed by adolescents with sickle cell disease.

BACKGROUND: Adolescents and young adults (AYAs) with sickle cell disease (SCD) are a vulnerable population with high risk of morbidity that could be decreased with effective self-management. Previous research suggests that mobile applications (apps) may facilitate AYA engagement in health-promoting behaviors. The objectives of this study were: (i) describe Internet access and use in AYA with SCD; (ii) identify barriers for self-management in this population; (iii) collaborate with AYA to co-design a mobile app that would minimize barriers; and (iv) evaluate the feasibility and acceptability of the app. PROCEDURE: In phase 1, 46 AYAs with SCD 16-24 years of age completed a survey of Internet access and use. During phase 2, 19 AYAs with SCD (average age 20 ± 2.5 years) and eight healthcare providers participated in interviews to identify barriers and co-design sessions to develop the app. In phase 3, five AYAs with SCD completed app feasibility and usability testing. RESULTS: AYAs with SCD had daily Internet access (69%) using their computers (84%) or mobile phones (70%). Participants went online for health information (71%) and preferred Web sites with interactive/social features (83%). Barriers to self-management included failing to believe that their health would suffer, lack of tailored self-management support, lack of a mechanism to visualize self-management progress, and limited opportunities for peer interaction around self-management. The prototype app (iManage) was rated as highly feasible and beneficial. CONCLUSIONS: A mobile app prototype co-designed by AYAs with SCD may be a useful tool for engaging them in self-management strategies designed to improve health.

Pilot of the Chronic Disease Self-Management Program for Adolescents and Young Adults With Sickle Cell Disease.

PURPOSE: This study evaluated the feasibility of a group self-management intervention, the well-established Stanford Chronic Disease Self-Management Program (CDSMP), for adolescents and young adults (AYA) with sickle cell disease (SCD). METHODS: A total of 22 AYA participants with SCD, ages 16-24 years, completed self-efficacy and quality of life measures before the CDSMP, after, and 3 and 6 months later. RESULTS: This AYA cohort showed significant improvements in self-efficacy (primary outcome) after the intervention. Analyses of follow-up data revealed a medium effect of the CDSMP on patient activation 3 months post although this was not sustained. Participants were highly satisfied, but only 64% completed the program. CONCLUSIONS: This study demonstrates that the CDSMP is acceptable and has the ability to improve self-efficacy. Additional research is needed to determine feasibility and evaluate health outcomes for AYA with SCD.

Implementation of a Process for Initial Transcranial Doppler Ultrasonography in Children With Sickle Cell Anemia.

Stroke, a devastating complication of sickle cell anemia (SCA), can cause irreversible brain injury with physical and cognitive deficits. Transcranial Doppler ultrasonography (TCD) is a non-invasive tool for identifying children with SCA at highest risk of stroke. National guidelines recommend that TCD screening begin at age 2 years, yet there is research to suggest less than half of young children undergo screening. The purpose of this project was to use quality improvement methods to improve the proportion of patients aged 24-27 months who successfully completed their initial TCD from 25% to 75% by December 31, 2013. Quality improvement methods (e.g., process mapping, simplified failure mode effect analysis, and plan-do-study-act cycles) were used to develop and test processes for identifying eligible patients, scheduling TCDs, preparing children and families for the first TCD, and monitoring outcomes (i.e., TCD protocol). Progress was tracked using a report of eligible patients and a chart showing the age in months for the first successful TCD (population metric). As of December 2013, 100% of eligible patients successfully completed their initial TCD screen; this improvement was maintained for the next 20 months. In November 2014, a Welch's one-way ANOVA was conducted. Results showed a statistically significant difference between the average age of first TCD for eligible patients born in 2009 and eligible patients born during the intervention period (2010-2013; F[1,11.712]=16.03, p=0.002). Use of quality improvement methods to implement a TCD protocol was associated with improved TCD screening rates in young children with SCA.

A Qualitative Examination of a New Combined Cognitive-Behavioral and Neuromuscular Training Intervention for Juvenile Fibromyalgia.

OBJECTIVES: Adolescents with juvenile fibromyalgia (JFM) are typically sedentary despite recommendations for physical exercise, a key component of pain management. Interventions such as cognitive-behavior therapy (CBT) are beneficial but do not improve exercise participation. The objective of this study was to obtain preliminary information about the feasibility, safety, and acceptability of a new intervention--Fibromyalgia Integrative Training for Teens (FIT Teens), which combines CBT with specialized neuromuscular exercise training modified from evidence-based injury prevention protocols. MATERIALS AND METHODS: Participants were 17 adolescent females (aged 12 to 18 y) with JFM. Of these, 11 completed the 8-week (16 sessions) FIT Teens program in a small-group format with 3 to 4 patients per group. Patients provided detailed qualitative feedback via individual semistructured interviews after treatment. Interview content was coded using thematic analysis. Interventionist feedback about treatment implementation was also obtained. RESULTS: The intervention was found to be feasible, well tolerated, and safe for JFM patients. Barriers to enrollment (50% of those approached) included difficulties with transportation or time conflicts. Treatment completers enjoyed the group format and reported increased self-efficacy, strength, and motivation to exercise. Participants also reported decreased pain and increased energy levels. Feedback from participants and interventionists was incorporated into a final treatment manual to be used in a future trial. DISCUSSION: Results of this study provided initial support for the new FIT Teens program. An integrative strategy of combining pain coping skills via CBT enhanced with tailored exercise specifically designed to improve confidence in movement and improving activity participation holds promise in the management of JFM.

Psychometric Properties of the Psychosocial Assessment Tool-General in Adolescents and Young Adults With Sickle Cell Disease.

OBJECTIVES: Adolescents and young adults (AYAs) with sickle cell disease (SCD) experience psychosocial factors that increase their risk for poor disease management and health outcomes. Routine assessment of psychosocial factors that perpetuate health disparities is recommended. The Psychosocial Assessment Tool 2.0_General (PAT2.0_GEN) AYA is a psychosocial screener with potential clinical utility in AYAs with SCD. This article is a preliminary examination of the internal consistency and predictive validity of this measure in a sample of 45 AYAs with SCD. METHODS: Participants completed the PAT2.0_GEN AYA, Pediatric Quality of Life Inventory, and a demographics form; psychosocial referral data were also collected. RESULTS: Internal consistency for the PAT2.0_GEN AYA was acceptable except for the Family Beliefs (0.67) and Structure and Resources subscales (0.37). PAT2.0_GEN AYA scores were associated with an increased likelihood of referral for intervention within 4 months. CONCLUSIONS: The PAT2.0_GEN AYA holds promise as a screener to identify psychosocial risk factors that may compromise health outcomes in AYAs with SCD.

Automated parent-training for preschooler immunization pain relief: a randomized controlled trial.

OBJECTIVE: To examine a computerized parent training program, "Bear Essentials," to improve parents' knowledge and coaching to help relieve preschoolers' immunization distress. METHOD: In a randomized controlled trial, 90 parent-child dyads received Bear Essentials parent training plus distraction, distraction only, or control. Outcomes were parent knowledge, parent and child behavior, and child pain. RESULTS: Bear Essentials resulted in improved knowledge of the effects of parents' reassurance, provision of information, and apologizing on children's procedural distress. Trained parents also engaged in less reassurance and more distraction and encouragement of deep breathing. Children in Bear Essentials engaged in more distraction and deep breathing than children in other groups. There were no effects on measures of child distress or pain. CONCLUSIONS: Results suggest that the interactive computer training program impacted parent knowledge, parent behavior, and child behavior as hypothesized, but modifications will be necessary to have more robust outcomes on child procedural distress.

School Performance and Disease Interference in Adolescents with Sickle Cell Disease.

Sickle cell disease (SCD) results in neuropsychological complications that place adolescents at higher risk for limited educational achievement. A first step to developing effective educational interventions is to understand the impact of SCD on school performance. The current study assessed perceptions of school performance, SCD interference and acceptability of educational support strategies in adolescents with SCD. To identify potential risk factors, the relationship between school performance, SCD interference and demographics were also examined. Thirty adolescents aged 12 to 20 completed demographics and SCD school performance questionnaires. Approximately 37% of participants reported receiving special education services, but more than 60% reported that SCD interfered with their school performance. Females reported that SCD impacted their schooling more than males (X2 (1, N = 30) = 5.00, p < .05). Study findings provide important insights into demographic risk factors and support the need for individualized health and educational plans for adolescents with SCD.