Post-traumatic growth among pediatric transplant recipients and their caregivers: A scoping review.

BACKGROUND: Pediatric transplantation can be a stressful process for patients and caregivers. Some individuals may experience post-traumatic stress symptoms (PTSS) and post-traumatic growth (PTG) as a result. Although post-traumatic stress disorder (PTSD) has been well-studied in this population, the purpose of the present scoping review is to provide a first synthesis of the existing literature on PTG in pediatric transplant populations. METHODS: We conducted a literature search of PsycINFO and Scopus in May 2023. Eligible articles must have included a sample of solid organ transplant (SOT) or stem cell transplant (SCT) recipients under age 18, siblings of recipients, or caregivers; and must have examined PTG. RESULTS: Twenty-three studies were identified, and nine studies met inclusion criteria and were included in the review (n = 5 cross sectional; n = 4 qualitative). Cross-sectional studies examined demographic, mental health, and medical correlates of PTG in children and caregivers. PTG was correlated with PTSS among caregivers. Qualitative studies identified themes along each of the five factors of PTG. CONCLUSION: Findings overwhelmingly focused on caregiver PTG. Qualitative study findings align with the theoretical model of PTG. Additional research is needed to investigate PTG in siblings of children with a transplant and associations between PTG and medication adherence. This scoping review provides insight into positive change processes following a transplant among children and their caregivers.

Substance use and solid organ transplantation in adolescents and young adults: Current findings and implications.

BACKGROUND: Understanding the role of substance use is important in the equitable allocation of solid organs and may present an opportunity for improving outcomes among substance users who receive transplants. This scoping review presents findings related to substance use among pediatric and young adult transplant populations and suggests future directions. METHODS: A scoping review was conducted seeking studies related to substance use in pediatric and young adult transplant populations under the age of 39 years. Studies were deemed eligible if they collected data or addressed policy concerns and participants' mean age was below 39 years. RESULTS: Twenty-nine studies were identified as eligible for this review. Overall, policies around substance use are largely inconsistent throughout both pediatric and adult transplant centers. Findings indicated that substance use among pediatric and young adult transplant recipients is similar to or lower than healthy peers. Few studies addressed marijuana use and opioid misuse, among other substances. CONCLUSIONS: There is a general dearth of research on substance use in this population. The current findings suggest that substance use, although relatively less common, affects eligibility for transplant, may lead to poor outcomes, and affects medication adherence. Inconsistent substance use policies in transplant centers have the potential to result in bias. However, more research is needed on the effects of substance use among pediatric and young adult transplant candidates and recipients as well as on equitable policies for organ allocation for individuals who use substances.

Students for others: Correlates of adherence to COVID-19 guidelines.

Objective: The present study aimed to determine correlates of adherence to COVID-19 health precautions among college students. Drawing from the literature, the following constructs were considered: self-efficacy, conscientiousness, social support, collectivism, empathy, and fear of COVID. Participants: Undergraduate students (N = 92) recruited from psychology classes and social media, living on and off-campus, served as participants during fall 2020. Methods: Participants completed a short self-report survey, delivered online, measuring adherence to COVID-19 health precautions and its possible correlates. Results: After preliminary comparisons showing no differences in adherence between students living on and off-campus, linear regression analyses of the complete sample revealed that the significant predictors of adherence were conscientiousness, collectivism, empathy, and fear of COVID. Conclusions: College student adherence was largely driven by interpersonal motivators coupled with a modest level of fear, rather than more general constructs. These findings offer implications for considering targets in public health campaigns delivered to college students.

Acceleration of mobile health for monitoring post-transplant in the COVID-19 era: Applications for pediatric settings.

BACKGROUND: Since the start of the COVID-19 pandemic and consequent lockdowns, the use of telehealth interventions has rapidly increased both in the general population and among transplant recipients. Among pediatric transplant recipients, this most frequently takes the form of interventions on mobile devices, or mHealth, such as remote visits via video chat or phone, phone-based monitoring, and mobile apps. Telehealth interventions may offer the opportunity to provide care that minimizes many of the barriers of in-person care. METHODS: The present review followed the PRISMA guidelines. Sources up until October 2020 were initially identified through searches of PsycInfo® and PubMed® . RESULTS: We identified ten papers that reported findings from adult interventions and five studies based in pediatrics. Eight of the adult publications stemmed from the same two trials; within the pediatric subset, this was the case for two papers. Studies that have looked at mHealth interventions have found high acceptability rates over the short run, but there is a general lack of data on long-term use. CONCLUSIONS: The literature surrounding pediatric trials specifically is sparse with all findings referencing interventions that are in early stages of development, ranging from field tests to small feasibility trials. The lack of research highlights the need for a multi-center RCT that utilizes robust measures of medication adherence and other outcome variables, with longer-term follow-up before telehealth interventions should be fully embraced.

The Utility of a Pre-Transplant Psychosocial Evaluation in Predicting Post-Liver Transplant Outcomes.

BACKGROUND: There is insufficient evidence about the ability of pretransplant psychosocial evaluations to predict posttransplant outcomes. While standardized assessments were developed to increase predictive validity, it is unclear whether the risk scores they yield predict outcomes. We investigated if the Stanford Integrated Psychosocial Assessment for Transplantation (SIPAT), a scaling approach to those assessments, would have been a superior predictor than the standard psychosocial evaluation. METHODS: In this retrospective study, medical records of 182 adult liver transplant recipients who were at least 1 year posttransplant and prescribed tacrolimus for immunosuppression were analyzed. Regression analyses predicted outcomes of interest, including immunosuppressant nonadherence and biopsy-proven rejection, obtained 1-year posttransplant to time of data collection. Nonadherence was determined using the medication level variability index (MLVI). RESULTS: Approximately 49% of patients had MLVI > 2.5, suggestive of nonadherence, and 15% experienced rejection. SIPAT total score did not predict adherence either using the continuous (P = .70), or dichotimized score, above or below > 2.5 (P = .14), or rejection (P = 0.87). Using a SIPAT threshold (total score > 69) did not predict adherence (p = .16) nor was a superior predictor of the continuous adherence score (P = .45), MLVI > 2.5 (P = .42), or rejection (P = 0.49), than the standard evaluation. CONCLUSION: Our findings suggest that the SIPAT is unable to predict 2 of the most important outcomes in this population, immunosuppressant adherence and rejection. Research efforts should attempt to evaluate the best manner to use psychosocial evaluations.

Adherence to Medication During Transition to Adult Services.

The transition from childhood and adolescence to adulthood is often tumultuous. For individuals with a chronic medical condition, this progression also includes a gradual transition to independence in healthcare management as well as a transfer in care location at some set point. As adolescents navigate these sometimes challenging processes, there is a significant risk for a decline in adequate health behaviors, which can have dire consequences. One of the most vital components of the transfer to adult care is medication adherence. Poor medication adherence puts patients at risk for worse outcomes, with the most profound being increased mortality for many conditions. In recent years, acknowledgment of the need to create evidence-based methods to aid patients during the transition period has been growing. This paper seeks to provide an overview of current research and recommendations for interventions to increase adherence to medication regimens during this period.

Examining the Psychosocial Needs of Adolescents With Craniofacial Conditions: A Mixed-Methods Approach.

OBJECTIVE: To determine, for intervention development, the psychosocial needs of adolescents diagnosed with a craniofacial condition who attended focus group sessions. DESIGN: A mixed-methods design combining qualitative focus groups with quantitative measures. SETTING: An outpatient clinic at a major medical center in Manhattan, New York. PARTICIPANTS: Fourteen adolescents, aged 14 to 18, with craniofacial conditions. MAIN MEASURES: Participants completed measures assessing a range of psychological constructs. Average scores were compared to clinical cutoff scores and normative data for adolescents. The 2 focus groups were coded using an inductive approach to assess pertinent themes. Additionally, the acceptability and feasibility of a proposed intervention was measured. RESULTS: Adolescents with craniofacial conditions were within normal ranges for quality of life, self-esteem, and body image and they reported higher resiliency. They were above cutoff scores for perceived stress and post-traumatic stress disorder symptoms and below cutoff scores for mindfulness. When compared to normative samples, they displayed higher perceived social support, but lower coping. Based on qualitative analyses, 6 themes emerged: stress, bullying, coping, resiliency, mindfulness, and social support. Both qualitative and quantitative analyses revealed most participants were supportive of a future intervention for this population. CONCLUSIONS: The present study identified several factors associated with psychological well-being of adolescents with craniofacial diagnoses and demonstrates the importance of creating interventions to target specific psychosocial needs. Findings from this study may guide researchers in developing and refining a specific program for this population and provide information to help those with craniofacial conditions who are experiencing psychosocial challenges.

The impact of caregiver post-traumatic stress and depressive symptoms on pediatric transplant outcomes.

PTSS as well as symptoms of depression have been reported in children who experience a serious medical adversity as well as their caretakers. The adverse effects of PTSS, when experienced by the patients, on medical outcomes have been clearly documented. However, the impact of those symptoms, if any, when experienced by the caretakers on child outcomes has not been investigated prospectively. We evaluated whether caregiver PTSS and depression symptoms predict adherence to medications and medical outcomes in a prospective multisite study. Four hundred children participated in MALT. Caretaker PTSS were assessed by the IES and depressive symptoms by CES-D. During 2 years of follow-up, the MLVI was used to determine adherence. Centrally read, biopsy-confirmed organ rejection was the primary medical outcome. IES scores were not associated with either adherence or rejection outcomes. In contrast, there were significant correlations between CES-D (depression) scores and lower adherence, r = .13, P < .001, and a trend toward higher scores on the CES-D among those whose children had experienced rejection, 12.4 (SD = 10.9) versus 9.1 (SD = 8.6), P = .077. Caregivers' PTSS were not a risk factor for poor child outcomes in this cohort, whereas depression symptoms were associated with non-adherence and possibly increased rates of rejection. Further study can validate if caregivers' depression as opposed to PTSS confers greater risk and should be a focus during the clinical care of medically ill children.

Assessment and Treatment of Nonadherence in Transplant Recipients.

Stable intake of an immunosuppressant medication regimen is essential for posttransplant survival in the vast majority of cases. And yet, many patients are nonadherent (do not take their medications as prescribed), and suffer consequences ranging from rejection to morbidity and mortality. We review the evidence related to monitoring of adherence to medications, and intervention strategies. Our aim is to provide a baseline from which readers may approach behavioral aspects of posttransplant care. This review may also help readers in designing clinical programs for routine monitoring of adherence, and inform the choice of intervention when adherence falls below a certain threshold.

Risky business: is pubic hair removal by women associated with body image and sexual health?

Background Body hair removal is a behaviour that has become normative among women in Westernised cultures, and is presented by the media as the feminine ideal, despite being painful and a potential cause of infection. Of concern, removal may be part of a more global pattern of appearance dissatisfaction and risky sexual behaviour. The aim of the present study was to examine the relationships among pubic hair removal, body image and sexual health indicators. METHODS: Women (n=264; Mage=33.82, s.d.=11.13, range=18-66) completed self-report questionnaires assessing these constructs, including an assessment of body hair removal practices. RESULTS: Greater appearance concerns (as measured by thin-ideal internalisation, appearance investment and self-objectification) and sexual health indicators (i.e. less condom use self-efficacy when a partner disapproves of condom use) all predicted greater importance of reasons for pubic hair removal (R2=0.315, F(8184)=9.97, P<0.001), controlling for age groups. Additionally, women who removed a greater amount of hair reported more thin-ideal internalisation and appearance investment than those who removed less hair. CONCLUSIONS: Women who express stronger reasoning for pubic hair removal, and remove a larger amount of it, may endorse problematic beliefs and behaviours particularly related to appearance concerns. It is important for practitioners to consider this practice as distinct from grooming and to be aware of its association with a broader array of risky beliefs and behaviours that can compromise women's well-being.

Pediatric Liver Transplant Teams Coping With Patient Death.

OBJECTIVES: Coping with patient death among pediatric liver transplant teams has received little attention despite general recognition of the potentially negative emotional consequences associated with such loss. The purpose of this study was to investigate the ways in which members of pediatric liver transplant teams cope with the death of patients on the waitlist and post-transplant and the institutional resources available to facilitate this coping. METHODS: Participants included 120 physicians, nurses, and mental health professionals from multiple transplant centers across the United States. Participants completed an online questionnaire that assessed the availability of formal coping resources at their institutions, informal sources of support used to cope with patient death, and as indices of coping, bereavement, and emotional exhaustion symptoms experienced. RESULTS: Debriefing, the most commonly offered support, was available to about half (55.8%) of the sample; yet, nearly all respondents (98.3%) indicated that debriefing would be useful. On average, bereavement and emotional exhaustion levels were comparable to normative data, but patterns of coping varied based on participants' position within the transplant team. For participants who reported that debriefing was available at their institutions, emotional exhaustion was lower. CONCLUSIONS: Overall, formal supports were inconsistently offered to pediatric transplant team members. Team members expressed high acceptability for debriefing, which has been associated with benefits in other populations, and findings indicated better coping in the transplant setting when it was offered.

Estimating correlations among cardiovascular patients' psychiatric and physical symptom indicators: The biplot in correspondence analysis approach.

OBJECTIVES: We employed the correspondence analysis (CA) biplot to estimate correlations between gender-age levels of cardiovascular disease patients and their psychiatric and physical symptoms. Utilization of this correlation estimation can inform clinical practice by elucidating associations between certain psychiatric or physical symptoms and specific gender-age levels. METHOD: The CA biplot utilized here was designed to visually inspect row-column category associations in a 2-dimensional plane and then to numerically estimate the category associations with correlations. To do so, we (a) estimated dimensions from row and column categories with CA; (b) verified statistical significance of dimensions with a permutation test; (c) projected row and column categories in a plan constructed with the first 2 dimensions that were statistically significant; (d) visually inspected category associations in the plane; and (e) numerically estimated category associations with correlations. RESULTS: Consistent with the previous results, female cardiovascular disease patients were more likely to experience psychiatric symptoms than the male patients. However, when examining the results by gender and age, both female and male patients in their 50s and 60s tended to experience elevated rates of the psychiatric symptoms. CONCLUSIONS: The CA biplot can be useful for isolating key clinical concerns among any medical populations.

Improving body image and sexual health behaviors among college women.

OBJECTIVE: To conduct a pilot test to determine if the Body Project, an eating disorder prevention program, was able to reduce risky sexual behaviors. PARTICIPANTS: Twenty college-age women ages 18-21 (in March, 2015) who endorsed both body image dissatisfaction and previous or current sexual activity. METHODS: Participants were randomized to the Body Project or psychoeducational control group, and completed baseline, post-test, and 6-month follow-up measures assessing body image concerns, eating behaviors, and sexual behaviors and attitudes. RESULTS: An intervention manipulation check demonstrated that body image variables were in expected directions, though were not significant by group. There was a significant interaction across group and time for "unanticipated sexual encounters," which decreased in the Body Project group. CONCLUSIONS: This pilot study supports the feasibility of using an eating disorder prevention program to reduce other risky behaviors, specifically risky sexual behaviors.

Barriers to self-management behaviors in college students with food allergies.

OBJECTIVE: This study examined barriers to engagement in self-management behaviors among food-allergic college students (1) within the frameworks of the health belief model (HBM) and common sense self-regulation model (CS-SRM) and (2) in the context of overall risky behaviors. PARTICIPANTS: Undergraduate college students who reported having a physician-diagnosed food allergy (N = 141). Research was conducted from February 2015 through May 2016. METHODS: Participants were recruited from college campuses through email and social media. The frequency of adherence to self-management behaviors was measured along with HBM, CS-SRM, and risk-taking behaviors through a self-report survey. RESULTS: Among all participants, HBM and CS-SRM constructs and Tobacco Use explained 30.6% of the variance in adherence. CS-SRM constructs and Tobacco Use explained 44.8% of the variance for participants with self-injectable epinephrine (SIE). CONCLUSIONS: Food-allergic college students demonstrate inconsistent adherence, and interventions designed to improve adherence should take both SIE prescription status and contextual factors into consideration.

Trajectory of adherence behavior in pediatric and adolescent liver transplant recipients: The medication adherence in children who had a liver transplant cohort.

Knowledge of the longterm trajectory of nonadherence to immunosuppressants can inform decisions regarding organ allocation, adherence monitoring, and intervention efforts. The Medication Adherence in Children Who Had a Liver Transplant (MALT) prospective multisite study followed 400 pediatric and adolescent liver transplant recipients for 2 years, using the Medication Level Variability Index to monitor adherence. We hypothesized that adherence is an unstable (fluctuating) phenomenon: that patients who are adherent in year 1 may become nonadherent in year 2, and vice versa. However, we also hypothesized that a majority (more than 50%) of nonadherent patients remain nonadherent over time. We further hypothesized that the longer nonadherence lasts, the higher the likelihood of adverse events (rejection). Finally, we explored the effect of socioeconomic factors on the evolution of adherence over time. Most (59.7%) of the MALT patients who were nonadherent in year 1 remained so in year 2; 18.5% of patients who were adherent in year 1 became nonadherent in year 2. Only 4.4% of patients who were adherent in both year 1 and year 2 had a rejection, compared with 22.9% of patients who were nonadherent during 1 of the years, and 34.9% of those who were nonadherent in both years (P < 0.001), establishing a "dose-dependent" effect of adherence on transplant outcomes. Single-parent households were associated with worsening adherence. Our results suggest that good baseline adherence does not guarantee adherence later on, that nonadherence is likely to persist in the absence of interventions, and that monitoring of adherence and interventions to improve it should be expected to last for years if transplant outcomes are to be improved. Liver Transplantation 24 80-88 2018 AASLD.

Pretransplant Psychosocial Risk Factors May Not Predict Late Nonadherence and Graft Rejection in Adult Liver Transplant Recipients.

OBJECTIVE: A psychosocial evaluation before liver transplant aims to identify risk factors for nonadherence and poor outcomes posttransplant. Despite broad support for such evaluations, evidence justifying its components is thus far limited. We investigated whether variables assessed during the psychosocial evaluation before liver transplant predict immunosuppressant nonadherence and graft rejection. MATERIALS AND METHODS: Our study included 248 adult liver recipients at least 1 year after transplant with at least 3 measured tacrolimus levels. Predictor variables from the pretransplant evaluation were defined a priori and included sociodemographic factors (age, race, time since transplant), psychiatric history, substance abuse history, education level, and social support. Nonadherence was determined using the medication level variability index, which is an objective measure of adherence reflective of high medication level fluctuation from nonadherence. Outcomes (medication level variability index and biopsy-confirmed rejection) were obtained 1-year posttransplant to the present. RESULTS: We found that 50% of patients were nonadherent to tacrolimus (medication level variability index > 2.5). The 41 patients with rejection (t = 2.71, P < .01) and black patients (F = 3.10, P = .02) had significantly higher index scores. Time since transplant was correlated with medical level variability index (r = 0.15, P = .02). However, in logistic regression, none of the predefined psychosocial variables predicted nonadherence (P = .40) or rejection (P = .19). CONCLUSIONS: Our results confirmed a significant association between medication level variability index and rejection, validating it as an objective measure of clinically significant nonadherence. In a large sample with high rates of nonadherence, none of the pretransplant psychosocial variables commonly used in standard liver transplant evaluations predicted nonadherence or rejection. These findings call into question current selection criteria. Future prospective studies are needed to investigate more com-prehensive psychosocial variables and their ability to determine posttransplant outcomes.

Self-Management Measurement and Prediction of Clinical Outcomes in Pediatric Transplant.

OBJECTIVE: To further refine a measure of self-management, the Responsibility and Familiarity with Illness Survey (REFILS), and to determine if this score predicts medication adherence and, thus, fewer instances of allograft rejection among pediatric liver transplant recipients. STUDY DESIGN: Participants were 400 liver transplant recipients and their parents recruited for the Medication Adherence in Children Who Had a Liver Transplant study, from 5 US pediatric transplant centers. The REFILS was administered to participants (ages 9-17 years) and their parents at enrollment (n = 213 completed dyads). The REFILS scores, and a discrepancy score calculated between patient and parent report of the patient's self-management, were used to predict Medication Level Variability Index (MLVI), a measure of medication adherence (higher MLVI = more variability in medication levels) and central pathologist-diagnosed rejection over a 2-year follow-up. RESULTS: When patients reported greater self-management, their adherence was lower (higher MLVI, r = 0.26, P < .01). Discrepancies between patient and parent report (patients endorsing higher levels than parents) were associated with lower adherence (r = 0.20, P < .01). Greater patient-reported self-management and higher discrepancy scores also predicted rejection. CONCLUSIONS: We found that when patients endorse more responsibility for their care, clinical outcomes are worse, indicating that indiscriminate promotion of self-management by adolescents may not be advisable. A discrepancy between patient and parent perception of self-management emerged as a novel strategy to gauge the degree of risk involved in transitioning care responsibilities to the child.