Biopsychosocial factors related to transition among adolescents and young adults with sickle cell disease: A systematic review.

It is critical to support adolescents and young adults (AYAs) with sickle cell disease (SCD) during transition to adult healthcare. We provide a systematic review of literature related to biopsychosocial influences on transition among AYAs with SCD. Data sources included studies published between January 2010 and May 2020.

Caregiver-reported outcomes of pediatric transplantation: Changes and predictors at 6 months post-transplant.

Background: It is widely assumed that pediatric solid organ transplantation results in better caregiver-reported outcomes, including reduced caregiver psychological distress and increased child health-related quality of life (HRQOL), yet little empirical evidence of this expectation exists. The current investigation aims to fill this gap and identify key clinical course factors predictive of caregiver-reported outcomes.

Methods: Forty-nine caregivers of children (M  = 10.

The comfort ability program for adolescents with sickle cell pain: Evaluating feasibility and acceptability of an inpatient group-based clinical implementation.

Background: Integration of nonpharmacological therapies, such as cognitive and behavioral pain management strategies, is recommended to support comprehensive disease and pain management among children and adolescents with sickle cell disease (SCD). The Comfort Ability Program for Sickle Cell Pain (CAP for SCP) introduces psychological and biobehavioral pain management strategies to children and adolescents with SCD. This study aimed to pilot the implementation of the CAP for SCP in a group setting to children and adolescents hospitalized for SCD pain examining feasibility, acceptability, and preliminary effectiveness on improving pain knowledge and coping efficacy.

Specific healthcare responsibilities and perceived transition readiness among adolescent solid organ transplant recipients: Adolescent and caregiver perspectives.

Objective: Adolescents and young adults (AYAs) with solid organ transplants must attain responsibility for healthcare tasks during transition to adult healthcare. However, healthcare systems often initiate transfer based on age and not independence in care. This study examines specific responsibilities distinguishing AYA organ transplant recipients reporting readiness to transfer.

Caregivers' Barriers to Facilitating Medication Adherence in Adolescents/Young Adults With Solid Organ Transplants: Measure Development and Validation.

Objective: To evaluate the factor structure, validity, and reliability of the Caregiver Medication Barriers to Adherence Scale (CMBAS), which assesses caregivers' barriers to facilitating medication adherence in adolescent and young adults (AYAs) with solid organ transplants.

Methods: The sample included 93 caregivers of AYAs ages 12-22 years who received a liver, kidney, or heart transplant. Caregivers completed the CMBAS and surveys to assess its validity, including internalizing symptoms, personality traits (i.

Looking beyond the individual: How family demands and capabilities affect family adjustment following pediatric solid organ transplant.

Introduction: Better family adjustment following pediatric solid organ transplantation has been associated with a number of beneficial medical and psychosocial outcomes. Yet few studies have examined which pretransplant variables are associated with posttransplant family adjustment. This information can aid in identifying families that may need support going into the transplantation process and those who are at lower risk of worse posttransplant adjustment.

Sleep quality is associated with psychosocial functioning and health-related quality of life in pediatric transplant recipients.

This study examined patient-reported sleep quality in a single-center cross-sectional sample of adolescents with solid organ transplants and evaluated associations between sleep quality, psychosocial functioning (ie, depression/anxiety symptoms), and HRQOL. Health disparities associated with minority race/ethnicity and socioeconomic variables were also examined. Sixty-nine adolescents (M = 16.

Readiness for transition and health-care satisfaction in adolescents with complex medical conditions.

Background: The purpose of this study is to examine contributions to patient perceptions of transition readiness and satisfaction with care amongst adolescents and young adults (AYAs) with complex health conditions engaging in paediatric care.

Methods: Participants included 94 patients aged 14-20 years (M = 16.41, SD = 1.

A preliminary investigation of sleep quality and patient-reported outcomes in pediatric solid organ transplant candidates.

The current cross-sectional, single-center study aimed to examine sleep quality in a sample of adolescents awaiting solid organ transplantation and to explore associations between sleep quality and both health-related quality of life and barriers to adherence. Thirty adolescents between the ages of 12 and 18 years (M age = 15.26, SD = 1.

Multimethod Assessment of Medication Nonadherence and Barriers in Adolescents and Young Adults With Solid Organ Transplants.

Objective: To (a) examine levels of medication nonadherence in adolescent and young adult (AYA) solid organ transplant recipients based on AYA- and caregiver proxy-reported nonadherence to different medication types and the medication-level variability index (MLVI) for tacrolimus, and (b) examine associations of adherence barriers and AYA and caregiver emotional distress symptoms with reported nonadherence and the MLVI.

Method: The sample included 47 AYAs (M age = 16.67 years, SD = 1.

Transition readiness, adolescent responsibility, and executive functioning among pediatric transplant recipients: Caregivers' perspectives.

This study aimed both to evaluate caregivers' perspectives of EF and transition readiness among adolescent transplant recipients and to examine the indirect effects of adolescent responsibility and parent involvement across domains of EF. Fifty-seven caregivers of adolescent solid organ transplant recipients participated in this study and completed measures of adolescent EF, transition readiness, responsibility in healthcare behavior, and parent involvement. Bootstrapping procedures were used to test indirect effects.

The interactive effect of parent personality and medication knowledge on adherence in children awaiting solid organ transplantation.

Objective: The study aimed to examine parent personality factors as predictors of parent medication knowledge and parent-report of child medication adherence.

Method: Seventy-eight parents (Mage = 37.68, 87.

Pretransplant patient, parent, and family psychosocial functioning varies by organ type and patient age.

The goal of this study was to compare pretransplant patient HRQOL, parent psychological functioning, and the impact of the patient's ongoing illness on the family between organ types (ie, kidney, liver, heart) and age-groups (ie, children, AYAs). The sample included 80 pediatric patients with end-stage organ disease who were evaluated for transplantation and their parents. Parents completed self- and proxy reports at patients' pretransplant evaluations.

Group-Based Trajectory Modeling of Distress and Well-Being Among Caregivers of Children Undergoing Hematopoetic Stem Cell Transplant.

Objective: To examine the trajectories of caregiver psychological responses in the year following their child's hematopoetic stem cell transplant (HSCT), and whether cognitive and social processing strategies differentiated between trajectories.

Method: One hundred and eight caregivers randomized to the control condition of a cognitive-behavioral intervention study completed measures of distress, coping, and social support at baseline, 1 month, 6 months, and 1 year post HSCT of their child.

Results: The majority reported moderate or low anxiety, depression, or distress that decreased over time, but a small group demonstrated high anxiety, depression, or distress that persisted or increased over time.

A randomized clinical trial of a parent-focused social-cognitive processing intervention for caregivers of children undergoing hematopoetic stem cell transplantation.

Objective: Providing care to one's child during and after a hematopoietic stem cell transplant (HSCT) is a universally stressful experience, but few psychological interventions have been developed to reduce caregiver distress. The goal of this study was to test the efficacy of a brief cognitive-behavioral intervention delivered to primary caregivers.

Method: Two hundred eighteen caregivers were assigned either best-practice psychosocial care (BPC) or a parent social-cognitive intervention program (P-SCIP).

Barriers to psychological care among primary caregivers of children undergoing hematopoietic stem cell transplantation.

Purpose: This substudy of an intervention trial aimed to describe barriers to participation in psychological care among primary caregivers of children who were about to undergo a hematopoietic stem cell transplantation (HSCT), including demographic and medical correlates.

Method: Three hundred and twelve primary caregivers of children undergoing HSCT who were approached to participate in a psychological intervention trial (n = 218 enrollees and 94 decliners) completed a measure of barriers to psychological care.

Results: The most frequently endorsed barriers to care were focusing on the child as priority, not wanting to leave the child's bedside, and already having adequate psychosocial support.

Executive Functioning, Barriers to Adherence, and Nonadherence in Adolescent and Young Adult Transplant Recipients.

OBJECTIVE : To evaluate levels of executive functioning in a sample of adolescent and young adult (AYA) transplant recipients, and to examine executive functioning in association with barriers to adherence and medication nonadherence.  METHOD : In all, 41 caregivers and 39 AYAs were administered self- and proxy-report measures.  RESULTS : AYA transplant recipients have significant impairments in executive functioning abilities.

Providers' assessment of transition readiness among adolescent and young adult kidney transplant recipients.

The Readiness for Transition Questionnaire- provider version (RTQ-Provider) was developed to evaluate adolescent patients' transition readiness and healthcare behaviors from the perspective of the healthcare provider. The RTQ-Provider is a parallel version of the RTQ-Teen and RTQ-Parent completed by patients and parents. This study seeks to evaluate the psychometric properties of the RTQ-Provider and its utility as a clinical transition planning tool.

Longitudinal stability of medication adherence among adolescent solid organ transplant recipients.

Solid organ transplantation requires ongoing adherence to immunosuppressants and other medications. Although adolescence is a risk factor for poor medication-taking, little is known about the patterns of adherence within individuals over time. This study aimed to examine the stability of adherence over time using three different assessment techniques.

Clinical cutoffs for adherence barriers in solid organ transplant recipients: how many is too many?

Objective: The current study used multiple statistical methods to determine empirically derived and clinically relevant cutoff scores on the Adolescent Medication Barriers Scale (AMBS) and Parent Medication Barriers Scale (PMBS) to detect adolescents and young adults with solid organ transplants who experienced medication nonadherence or negative medical outcomes.

Methods: Participants included 71 patients and 80 caregivers. Cutoff scores were determined via receiver operating characteristic curve analyses, t-test analyses, and the sensitivity and specificity of using certain cutoff scores.

Intellectual and academic performance in children undergoing solid organ pretransplant evaluation.

Although prior research has shown lower intellectual functioning across pediatric solid organ transplant recipients relative to matched siblings or norm comparisons, few studies have assessed intellectual and academic performance prior to transplant across organ groups. The current data examine intellectual and academic functioning in children being evaluated for kidney, liver, or heart transplant. This investigation included intellectual and academic testing data from 195 children and adolescents between the ages of six and 19 yr evaluated for solid organ transplantation.

Psychological distress and psychiatric diagnoses among primary caregivers of children undergoing hematopoietic stem cell transplant: an examination of prevalence, correlates, and racial/ethnic differences.

Objective: The aims of the study were to examine the prevalence of self-reported psychological distress, examine the prevalence of interview-rated psychiatric diagnoses, identify correlates of psychological distress and psychiatric diagnosis and examine racial/ethnic group differences on measures of psychological distress among primary caregivers of children preparing to undergo hematopoietic stem cell transplant (HSCT).

Methods: Caregivers (N = 215) completed the Beck Anxiety Inventory, Beck Depression Inventory (BDI), Impact of Events Scale, and a psychiatric interview assessing major depressive disorder, generalized anxiety disorder and panic disorder. Regression analyses examined correlates of distress and psychiatric diagnosis.

The role of social and cognitive processes in the relationship between fear network and psychological distress among parents of children undergoing hematopoietic stem cell transplantation.

The current study examined whether cognitive and social processing variables mediated the relationship between fear network and depression among parents of children undergoing hematopoietic stem cell transplant (HSCT). Parents whose children were initiating HSCT (N = 179) completed survey measures including fear network, Beck Depression Inventory, cognitive processing variables (positive reappraisal and self-blame) and social processing variables (emotional support and holding back from sharing concerns). Fear network was positively correlated with depression (p < .

Longitudinal stability of specific barriers to medication adherence.

Objective: Higher levels of barriers are related to lower medication adherence and negative medical outcomes in pediatric transplant recipients. Although total number of barriers appears to be stable over time, it is unclear whether the same is true for specific barriers. This study examined the frequency of endorsement and the stability of specific barriers over 18 months.

Emotional functioning, barriers, and medication adherence in pediatric transplant recipients.

Objective: This study assessed relationships among internalizing symptoms, barriers to medication adherence, and medication adherence in adolescents with solid organ transplants.

Method: The sample included 72 adolescents who had received solid organ transplants. Multiple mediator models were tested via bootstrapping methods.