Associations between executive functioning, personality, and posttraumatic stress symptoms in adolescent solid organ transplant recipients.

BACKGROUND: Pediatric solid organ transplant recipients are susceptible to posttraumatic stress symptoms (PTSS), given the presence of a life-threatening chronic medical condition and potential for complications. However, little is known about what individual characteristics are associated with an increased risk for PTSS among youth who received an organ transplant. The aim of the current study was to evaluate PTSS and its associations with executive functioning (EF) and personality (i.e., neuroticism and conscientiousness) among adolescents with solid organ transplants. METHODS: Fifty-three adolescents (Mage  = 16.40, SD = 1.60) with a kidney, heart, or liver transplant completed self-report measures of PTSS and personality, whereas caregivers completed a caregiver-proxy report of adolescent EF. RESULTS: Twenty-two percent of adolescent transplant recipients reported clinically significant levels of PTSS. Higher EF difficulties and neuroticism levels, and lower conscientiousness levels were significantly associated with higher PTSS (rs -.34 to .64). Simple slope analyses revealed that adolescents with both high EF impairment and high levels of neuroticism demonstrated the highest PTSS (t = 3.47; p < .001). CONCLUSIONS: Most adolescent transplant recipients in the present study did not report clinically significant levels of PTSS; however, those with high neuroticism and greater EF difficulties may be particularly vulnerable to PTSS following organ transplantation. Following transplantation, medical providers should assess for PTSS and risk factors for developing PTSS. Identification of those at risk for PTSS is critical, given the strong associations between PTSS and certain medical outcomes (e.g., medication nonadherence) among these youth.

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.

Stressful life events, depression, and the moderating role of psychophysiological reactivity in patients with pediatric inflammatory bowel disease.

OBJECTIVE: The development of depressive symptoms in youth with IBD is a concerning disease complication, as higher levels of depressive symptoms have been associated with poorer quality of life and lower medication adherence. Previous research has examined the association between disease activity and depression, but few studies have examined individual differences in experience of stressful life events in relation to depressive symptoms. The purpose of the current study is to examine the relation between stressful life events and depression within pediatric IBD and to determine whether individual differences in stress response moderates this association. METHODS: 56 youth ages 8-17 years old diagnosed with IBD completed questionnaires about their depressive symptoms and history of stressful life events. We assessed skin conductance reactivity (SCR) to a stressful task as an index of psychophysiological reactivity. RESULTS: Stressful life events (r = 0.36, p = .007) were positively related to depressive symptoms. Youth who demonstrated a greater maximum SC level during the IBD-specific stress trial compared to baseline (n = 32) reported greater depressive symptoms. For these same participants, the relationship between stressful life events and depressive symptoms depended on SCR F(3, 28) = 4.23, p = .01, such that at moderate and high levels of SCR, a positive relationship between stressful life events and depressive symptoms was observed. CONCLUSIONS: The relationship between stressful life events and depressive symptoms in youth with IBD may depend on individual differences in processing stress, such that risk may increase with greater psychophysiological reactivity.

Age, Disease Symptoms, and Depression are Associated With Body Image Dissatisfaction in Newly Diagnosed Pediatric Inflammatory Bowel Disease.

OBJECTIVES: Body image refers to the subjective, mental representation one makes regarding their physical appearance. Children and adolescents with inflammatory bowel disease (IBD) may be prone to experiencing negative self-evaluations regarding their body image given disease-related symptoms and treatment side-effects. In this study, we aimed to examine demographic, medical, and psychosocial variables related to body image dissatisfaction (BID) in pediatric patients diagnosed with IBD and to determine which variables are most predictive of higher dissatisfaction. METHODS: A total of 52 youth newly diagnosed with IBD (Crohn's disease, ulcerative colitis, indeterminate colitis) ages 8 to 17 years completed questionnaires regarding their psychosocial functioning (ie, depression, anxiety, health-related quality of life, stress), disease symptoms, and BID. BID was assessed using the modified Adapted Satisfaction with Appearance questionnaire, yielding a total score and subscale scores assessing Perceived Social Impact and Subjective Dissatisfaction. Physician global assessment of disease activity and demographic and medical characteristics were abstracted from electronic chart review. RESULTS: Youth endorsed low overall BID concerns but noted the highest dissatisfaction with their abdomen, chest, and arms. Older child age, greater patient-reported disease symptoms, and worse depression symptoms were most strongly associated with overall body dissatisfaction when evaluated in a hierarchical regression model. CONCLUSIONS: Demographic, disease-related, and psychosocial factors are associated with BID in youth newly diagnosed with IBD. Given associations between BID and adverse health outcomes in healthy youth, these findings highlight a unique opportunity to improve screening and interventions for BID in patients with IBD.

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.

Parent IMPACT-III: Development and Validation of an Inflammatory Bowel Disease-specific Health-related Quality-of-life Measure.

OBJECTIVES: The present study aimed to validate the parent-proxy IMPACT-III (IMPACT-III-P) in a sample of youth diagnosed with inflammatory bowel disease (IBD). Parent-proxy report measures are standard for pediatric psychosocial assessment, and the IMPACT-III-P will provide a more comprehensive representation of HRQOL. Reliability and validity analyses were conducted. METHODS: Parents (N = 50) of youth 8 to 17 years with IBD reported on their child's HRQOL (IMPACT-III-P and PedsQL-4.0) and depression (BASC-2); youth reported on their HRQOL (child IMPACT-III), pain interference (PROMIS Pain Interference), and disease symptoms; and physicians completed measures of disease activity. RESULTS: Criterion validity was established as the IMPACT-III-P was strongly, positively associated with the PedsQL (r = 0.59, P < 0.001). Convergent validity was supported as higher IMPACT-III-P scores were associated with less pain interference (r = -0.41, P < 0.01) and lower depression (r = -0.41, P < 0.01). Discriminant validity was partially supported, as higher IMPACT-III-P scores were associated with lower child-reported symptoms (r = -0.41, P < 0.01), but scores did not differ based on inactive, mild, or moderate/severe disease activity groups as rated by physicians. Internal consistency, parent-child agreement, and item-level analyses revealed strong reliability. CONCLUSIONS: The IMPACT-III-P demonstrated strong validity and reliability. Parents and children had similar reports of HRQOL, with parents rating child HRQOL slightly lower. Findings support the use of the IMPACT-III-P for youth 8 to 17 years old to use in accordance with the child IMPACT-III to provide valuable information regarding HRQOL in youth with IBD.

Executive Functioning in Pediatric Solid Organ Transplant Recipients: A Meta-analytic Review.

BACKGROUND: Examining executive functioning (EF) posttransplant has become increasingly prevalent, as EF deficits are associated with poor disease-related outcomes and psychosocial functioning. The purpose of the current meta-analysis was to compare overall and domain-specific EF between healthy youth and those with a kidney, heart, or liver transplant, and identify moderating variables related to EF differences between these 2 groups. METHODS: A literature search of PsycINFO, Pubmed, and Medline was conducted for eligible articles published until January 2019. Twenty studies met eligibility criteria and were included in the present meta-analysis. RESULTS: Results from the random-effects model indicated a significant standardized mean difference in overall EF skills with transplant recipients demonstrating worse EF (g = 0.40; 95% confidence interval [CI], 0.29-0.50) than healthy youth. Specifically, transplanted youth had worse working memory (g = 0.33; 95% CI, 0.01-0.66), processing speed (g = 0.41; 95% CI, 0.19-0.62), attentional control (g = 0.53; 95% CI, 0.33-0.73), and metacognitive skills (g = 0.36; 95% CI, 0.18-0.54). Assessment type and time since transplantation were not significant moderators. CONCLUSIONS: Pediatric solid organ transplant recipients demonstrate worse overall EF skills and deficits in working memory, processing speed, attentional control, and metacognitive skills. Many children who have undergone solid organ transplantation will require additional support in medical and academic settings because of deficits in various EF domains.

A Systematic Review of Therapeutic Recreation Camp Impact on Families of Children With Chronic Health Conditions.

OBJECTIVE: Parents and siblings of children with chronic illnesses are at increased risk for experiencing psychosocial difficulties. Therapeutic recreation camps have become increasingly popular among these families. The current systematic literature review provides a synthesis of research on how these camps impact the parents and siblings of children facing a variety of chronic health conditions. METHODS: Databases searched: PubMed, PsycInfo, SportDISCUS, and Health Source Nursing/Academic Edition. Inclusion criteria included publication in a peer-reviewed journal between January 2000 and May 2018, written in the English language, and assessment of parent, sibling, or family outcomes. RESULTS: Twenty-one studies were included. Results indicated that camp attendance relates to positive changes in parent and sibling psychosocial outcomes. Additionally, parents report camp to be a place of social support and respite from daily life, and siblings find camp to be enjoyable and a place of belonging. Given the limited number of methodologically sound studies examining family functioning, it is not yet clear the extent to which camp influences family-level outcomes. CONCLUSION: Overall, camp appears to have a positive impact on parents and siblings across chronic illness populations. Future research should specifically assess family outcomes, including communication and family functioning, and the impact of incorporating well-defined interventions and education programming into the traditional therapeutic recreation camp experience.