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. Forty-four studies were included. Biopsychosocial factors related to improved transition outcomes included older AYA age, greater disease severity, intact neurocognitive functioning, and greater pain coping skills. Financial and insurance barriers were noted. The importance of cultural considerations and provider communication were noted across two qualitative studies. Ten studies assessed efficacy of transition interventions, with 80 % resulting in improvements; however, retention in programs was low and gaps in knowledge and skills remained. Incorporation of early, ongoing assessments of transition readiness and barriers into culturally-tailored interventions aimed at improving transition outcomes is recommended. Examination of longitudinal relationships and interactions across biopsychosocial influences is needed.

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 (Mage  = 10.30 years, SD = 5.43) presenting for kidney, liver, or heart transplant evaluation reported on their psychological distress levels (anxiety, depression, somatization, and global psychological stress) and their children's HRQOL at children's pretransplant evaluations and 6 months post-transplant. Clinical course factors were abstracted via medical chart review. RESULTS: Caregivers did not report significant changes in their psychological distress from pre- to post-transplant but reported significantly improved child HRQOL across most domains (ds = -.45 to -.54). Higher post-transplant caregiver global psychological distress was predicted by older child age, shorter time since diagnosis, and lower pretransplant caregiver-reported child HRQOL even after controlling for pretransplant caregiver psychological distress. Lower post-transplant child total HRQOL was predicted by more post-transplant hospitalizations even after controlling for pretransplant child total HRQOL. CONCLUSIONS: These preliminary results indicate pediatric solid organ transplantation was associated with some improved caregiver-reported outcomes, specifically children's HRQOL, but not caregivers' psychological distress. Linear regression models identify several clinical course and pretransplant factors associated with transplantation outcomes. Characterizing how caregivers view their psychological distress levels and children's HRQOL across the transplantation process could inform family-centered holistic care and support caregiver adaptation to transplantation.

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. METHOD: Adaptation of CAP for SCP into a three-session group format was guided by four phases of the Dynamic Adaptation Process model: Exploration, Preparation, Implementation, and Sustainment. Youth with SCD (n = 57) hospitalized for pain participated in at least one session and completed self-report of knowledge of pain management skills, pain coping efficacy, and treatment acceptance. Completion rates of sessions and qualitative feedback were gathered to evaluate feasibility and acceptability. RESULTS: Feasibility of conducting inpatient group sessions was suboptimal; however, patients and medical providers reported moderate to high levels of treatment acceptance. Patients also reported significant improvements in knowledge of pain management skills following session 1. CONCLUSIONS: CAP for SCP is a patient-centered first-line psychoeducational intervention that can be integrated into clinical practice settings to introduce youth to cognitive and behavioral pain management strategies to support SCD pain management.

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. METHODS: 65 AYAs (ages 12-21) with heart, kidney, or liver transplants and 63 caregivers completed questionnaires assessing AYA's transition readiness, healthcare responsibility, and executive functioning. Categorizations included mostly/completely ready versus not at all/somewhat ready to transition; responsibility was compared between groups. RESULTS: 42% of AYAs and 24% of caregivers reported AYAs as mostly/completely ready to transition. AYAs mostly/completely ready reported similar routine healthcare responsibility (e.g., medication taking, appointment attendance), but greater managerial healthcare responsibility (e.g., knowing insurance details, appointment scheduling), compared to AYAs not at all/somewhat ready to transition. CONCLUSIONS: All AYAs should be competent in routine healthcare skills foundational for positive health outcomes. However, the managerial tasks distinguish AYAs perceived as ready to transfer to adult healthcare. PRACTICE IMPLICATIONS: Emphasis on developing responsibility for managerial tasks is warranted. The Hierarchy of Healthcare Transition Readiness Skills is a framework by which AYA responsibility can be gradually increased in preparation for 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.e., neuroticism, conscientiousness), and AYAs' nonadherence to immunosuppressant medications. AYA nonadherence to tacrolimus was objectively assessed via the Medication Level Variability Index (MLVI). RESULTS: Confirmatory factor analyses of the CMBAS revealed a two-factor model: Caregiver Emotional Distress and Caregiver Cognitive Burden/Responsibility. Higher CMBAS scores were related to higher levels of caregiver internalizing symptoms (rs = .28 to .30), neuroticism (r = .27), and caregiver proxy-reported immunosuppressant nonadherence (r = .27), as well as lower levels of caregiver conscientiousness (rs = -.25 to -.26). The CMBAS was not associated with the MLVI (rs = -.13 to -.16). CONCLUSIONS: The CMBAS demonstrated reliability and validity for caregivers of AYAs with solid organ transplants. Findings support the use of the CMBAS as a brief clinical screening tool to identify caregivers' barriers to facilitating AYA medication adherence.

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. METHOD: The sample included 66 parents of children with solid organ transplants and 22 children with solid organ transplants. Information regarding demographic factors, parent and child emotional functioning, and child social support was collected during the child's pretransplant evaluation and information on family adjustment was collected 6 months after transplantation. RESULTS: Results indicated that pretransplant demands such as worse parent and child emotional functioning were related to worse family adjustment 6 months after transplantation. Pretransplant capabilities (i.e., higher family income, parent education level, parent marital status, child social support) were not associated with posttransplant family adjustment. DISCUSSION: Pretransplant family demands such as parent and child emotional functioning, as opposed to family capabilities, should be assessed by family health care team members prior to transplantation because they may be related to worse family adjustment after the transplant. We offer recommendations for ways to assess and, if indicated, intervene upon pretransplant family demands in an effort to decrease the risk of worse posttransplant family adjustment. (PsycINFO Database Record (c) 2019 APA, all rights reserved).

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 = 16.51 years; SD = 1.63) who received a solid organ transplant (kidney: n = 25; liver: n = 24; heart: n = 20) completed self-report measures of sleep quality, psychosocial functioning, and HRQOL. Adolescent transplant recipients endorsed significantly lower levels of sleep quality (ie, falling asleep) compared with previously published norms of healthy peers (t = -3.60; P ≤ .001). Higher sleep quality was significantly associated with fewer anxiety and depressive symptoms (r = -.31 to -.40), and higher physical and psychosocial HRQOL (r = .33-.43). Adolescents from minority backgrounds had significantly worse sleep quality compared with non-Hispanic Whites. Adolescent transplant recipients, particularly those from minority backgrounds, may be at increased risk for experiencing poor sleep quality. Suboptimal sleep is a risk factor for higher levels of anxiety and depressive symptoms, as well as lower levels of physical and psychosocial HRQOL. Sleep is an important modifiable factor that, if improved, may contribute to lower anxiety/depressive symptoms and better HRQOL in adolescent transplant recipients.

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 = 1.56) with cystic fibrosis (n = 31), sickle cell disease (n = 27), and solid organ transplants (n = 36). Participants completed self-report questionnaires and medical providers completed measures of their medication regimen complexity. One-way analysis of variance compared differences between disease groups on study variables. Pearson product-moment correlation coefficients and linear regression models evaluated factors associated with AYA reported transition readiness and satisfaction with health care. RESULTS: There were no significant differences between disease groups on patient-reported transition readiness, barriers to medication adherence, health care self-management, or satisfaction. Patient age, self-reported health-care responsibility, medication barriers, and academic performance predicted a large portion of the variance in AYA perceptions of transition readiness (R2  = 0.27, F (4, 83) = 7.74, p < 0.001, Cohen's f2 = 0.37). Patient gender, self-reported health-care responsibility, and medication barriers predicted a medium portion of the variance in AYA satisfaction with health care (R2  = 0.23, F (3, 88) = 8.56, p < 0.001, Cohen's f2 = 0.30). CONCLUSIONS: Patient perceptions of health care self-management and barriers to medication adherence are important predictors of readiness for transition and satisfaction with care. Considering a holistic approach that includes these factors allows for improved understanding of individual needs for transition interventions that can improve adult outcomes for individuals with complex health conditions.

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 = 1.89) who were awaiting transplantation participated in this study. Participants completed measures of sleep quality, health-related quality of life, and barriers to adherence. T test and correlational analyses were performed to examine study aims. Adolescents awaiting transplantation had significantly lower levels of overall sleep quality compared to published norms of healthy peers. Domains of sleep quality were positively related to emotional and psychosocial health-related quality of life. Sleep quality domains were also negatively related to adherence barriers. This study provides preliminary evidence demonstrating that sleep quality among transplant candidates is compromised, and that poor sleep quality is related to adolescents' functioning across a number of domains during the pretransplant period. Results highlight the clinical importance of assessing and targeting sleep functioning in adolescents awaiting transplantation in order to reduce the negative influence of suboptimal sleep on functioning during this vulnerable period.

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 = 1.74; transplant types: 25% kidney, 47% liver, 28% heart) and their caregivers (94 total participants). AYAs and caregivers reported on AYAs' adherence barriers and their own emotional functioning. Nonadherence was measured with AYA self- and caregiver proxy-report and the MLVI for tacrolimus. Results: The majority of AYAs and caregivers denied nonadherence, with lower rates of nonadherence reported for antirejection medications. In contrast, 40% of AYAs' MLVI values indicated nonadherence to tacrolimus. AYAs and caregivers who verbally acknowledged nonadherence had more AYA barriers and greater caregiver emotional distress symptoms compared with those who denied nonadherence. AYAs with MLVIs indicating nonadherence had more barriers than AYAs with MLVIs indicating adherence. Conclusions: Multimethod nonadherence evaluations for AYA transplant recipients should assess objective nonadherence using the MLVI, particularly in light of low reported nonadherence rates for antirejection medications. Assessments should include adherence barriers measures, given associations with the MLVI, and potentially prioritize assessing barriers over gauging nonadherence via self- or proxy-reports. Caregiver emotional distress symptoms may also be considered to provide insight into family or environmental barriers to adherence.

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. Caregiver report of adolescent EF was significantly related to transition readiness among transplant recipients. Significant indirect effects were found for adolescent responsibility but not parent involvement. No significant differences were found between metacognitive and behavioral regulation domains of EF in the association with transition readiness. Assessment of adolescent EF skills may help guide the development of individualized transition readiness guidelines to promote successful gains in self-management abilities as well as eventual transfer to adult medical services.

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, 87.2% female) of children (Mage = 8.89, range: 0-20 years) undergoing evaluation for a solid organ transplant were recruited. Parents completed questionnaires about their personality, knowledge of their child's medications, and their child's level of medication adherence. RESULTS: Greater time since the child's diagnosis predicted lower levels of medication knowledge, while higher levels of Neuroticism and Extraversion predicted greater levels of medication knowledge. Greater medication knowledge predicted greater levels of medication adherence, with this effect being moderated by conscientiousness. Children of parents with low knowledge and low conscientiousness had the lowest levels of adherence. CONCLUSIONS: Parent personality is significantly related to medication knowledge and children's adherence prior to transplant. As parent personality is theoretically stable, Neuroticism (N), Extraversion (E), and Conscientiousness (C) serve as risk and protective factors that may influence medication knowledge and adherence even after transplantation. Parent medication knowledge and adherence are modifiable factors that would be appropriate targets for intervention during the pretransplant period. (PsycINFO Database Record

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. Maladaptive coping was highest among caregivers in the high-persistent distress subgroup compared with the moderate-decreasing and low-stable groups. Adaptive coping was minimally associated with trajectory subgroups. Conclusions: Screening HSCT caregivers for distress and maladaptive coping may be useful in identifying caregivers likely to experience persistently high distress who may benefit from psychological intervention.

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. Results indicated that patients evaluated for heart transplants consistently had lower HRQOL and their parents had greater psychological distress compared to the kidney and liver groups. Within the heart group, parents and families of children (<12 years old) experienced significantly more distress and impact of the patient's illness on the family compared to those of AYAs (≥12 years old). Pediatric patients awaiting heart transplants, particularly younger children, and their parents and families may have greater psychosocial needs compared to patients awaiting kidney or liver transplants.

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). The 5 session P-SCIP was delivered during the HSCT hospitalization. Caregivers completed measures of distress, optimism, coping, and fear appraisals preintervention, 1, 6 months, and 1 year. RESULTS: P-SCIP reduced caregiver's distress significantly more than BPC between the pretransplant assessment (Time 1) and 1-month follow-up assessment (Time 2). P-SCIP had a stronger effect than BPC among caregivers who began the hospitalization reporting higher depression and anxiety, and among caregivers whose children developed graft-versus-host disease (GvHD). Long-term treatment effects of P-SCIP were seen in traumatic distress among caregivers who reported higher anxiety pretransplant as well as among caregivers whose children had GvHD at HSCT discharge. CONCLUSIONS: Screening caregivers for elevations in pretransplant anxiety and targeting interventions specifically to these caregivers, as well as targeting caregivers to children who develop GvHD, may prove beneficial.

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. The least frequently endorsed barriers were location, wait times, and stigma around seeking psychological care. CONCLUSIONS: Results suggest that explaining how psychological care for a primary caregiver can positively affect their ill child may reduce barriers to seeking needed support services. Certain practical barriers to care may be irrelevant in inpatient settings where psychological support is offered.

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. Greater dysfunction in specific domains of executive functioning was significantly associated with more barriers to adherence and greater medication nonadherence. CONCLUSION : AYA transplant recipients are at increased risk for executive dysfunction. The assessment of executive functioning abilities may guide intervention efforts designed to decrease barriers to adherence and promote developmentally appropriate levels of treatment responsibility.

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. Participants consisted of 49 kidney transplant recipients between the ages of 15 and 21. The RTQ-Provider was completed by the pediatric nephrologist and psychologist from the multidisciplinary healthcare team and compared to RTQ data from teens and parents. The RTQ-Provider demonstrated good-to-excellent internal consistency and interrater reliability. Construct validity was supported through significant predictive relationships between providers' perceptions of transition readiness and older patient age, increased patient healthcare responsibility, and decreased parent involvement in health care. By providing parallel teen, parent, and provider forms, the RTQ has the potential to foster open communication between patients, families, and healthcare team members regarding transition readiness. The study provides initial support for the RTQ-Provider as a clinical tool to assess providers' perceptions of transition readiness; however, future longitudinal research is needed to evaluate predictive validity following patients' transfer to adult care.

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. Sixty-six AYA transplant recipients and/or their caregiver completed interviews of adherence at baseline and at least one yr later. Serum immunosuppressant assay levels were collected via medical chart review. Non-adherence percentages based on AYA report, caregiver report, and bioassay did not differ from Time 1 to Time 2. However, correlations for these measures across time were non-significant. Further, the majority of AYAs shifted to a different adherence category from Time 1 to Time 2. Overall, these results demonstrate individual variability in non-adherence over the course of adolescence and young adulthood and highlight the importance of frequent assessment across time for solid organ transplant recipients.

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. RESULTS: AMBS scores of ≥3 barriers and PMBS scores of ≥2 barriers were determined as the ideal cutoffs for identifying patients meeting criteria for the outcome variables. CONCLUSIONS: Clinicians should consider using these recommended cutoff scores when assessing adherence barriers in adolescents and young adults with solid organ transplants and their families. Patients or caregivers endorsing barriers above the cutoffs may benefit from further assessment or intervention to address barriers, nonadherence, or related medical issues.