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

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

Using Quality Improvement Methods to Implement an Electronic Medical Record (EMR) Supported Individualized Home Pain Management Plan for Children with Sickle Cell Disease.

Objective: Using quality improvement methodology, our goal was to develop and implement individualized home pain management plans (HPMP) that included pharmacologic as well as non-pharmacologic strategies for children with sickle cell disease (SCD). We hypothesized that successfully implemented HPMPs would have an impact on Emergency Department (ED) use, decreasing ED visits for uncomplicated SCD pain episodes.

Methods: A multidisciplinary quality improvement team developed a questionnaire to assess the frequency, location and severity of a patient's pain during a routine, comprehensive visit in order to help the patient and family develop an effective pain management strategy using both pharmacologic and non-pharmacologic actions.

Utility of the PedsQL rheumatology module as an outcome measure in juvenile fibromyalgia.

Objective: The PedsQL rheumatology module is currently the only available measure of disease-specific quality of life for children and adolescents with juvenile fibromyalgia (FM), but limited information has been published about the psychometric properties of the instrument, specifically in juvenile FM. The objective of this study was to assess there liability, validity, and sensitivity to change of the 5 scales (pain and hurt, daily activities, treatment, worry, and communication) of the patient and parent proxy versions of the PedsQL rheumatology module in the context of a randomized controlled trial in juvenile FM.

Methods: The entire PedsQL rheumatology module was administered as a supplementary outcome measure at baseline,posttreatment, and 6-month followup assessments of 114 children and adolescents with juvenile FM enrolled in a trial testing the efficacy of cognitive–behavioral therapy.