Demographic Factors, Medication Adherence, and Post-transplant Health Outcomes: A Longitudinal Multilevel Modeling Approach.

Few studies in pediatric solid organ transplantation have examined non-adherence to immunosuppressive medication over time and its associations with demographic factors and post-transplant outcomes including late acute rejection and hospitalizations. We examined longitudinal variation in patient Medication Level Variability Index (MLVI) adherence data from pediatric kidney, liver, and heart transplant recipients. Patient and administrative data from the United Network for Organ Sharing were linked with electronic health records and MLVI values for 332 patients. Multilevel mediation modeling indicated comparatively more variation in MLVI values between patients than within patients, longitudinally, over 10 years post transplant. MLVI values significantly predicted late acute rejection and hospitalization. MLVI partially mediated patient factors and post-transplant outcomes for patient age indicating adolescents may benefit most from intervention efforts. Results demonstrate the importance of longitudinal assessment of adherence and differences among patients. Efforts to promote medication adherence should be adapted to high-risk patients to increase likelihood of adherence.

A systematic review of social determinants of health in pediatric organ transplant outcomes.

BACKGROUND: Equitable access to pediatric organ transplantation is critical, although risk factors negatively impacting pre- and post-transplant outcomes remain. No synthesis of the literature on SDoH within the pediatric organ transplant population has been conducted; thus, the current systematic review summarizes findings to date assessing SDoH in the evaluation, listing, and post-transplant periods. METHODS: Literature searches were conducted in Web of Science, Embase, PubMed, and Cumulative Index to Nursing and Allied Health Literature databases. RESULTS: Ninety-three studies were included based on pre-established criteria and were reviewed for main findings and study quality. Findings consistently demonstrated disparities in key transplant outcomes based on racial or ethnic identity, including timing and likelihood of transplant, and rates of rejection, graft failure, and mortality. Although less frequently assessed, variations in outcomes based on geography were also noted, while findings related to insurance or SES were inconsistent. CONCLUSION: This review underscores the persistence of SDoH and disparity in equitable transplant outcomes and discusses the importance of individual and systems-level change to reduce such disparities.

Posttraumatic Growth in Youth, Young Adults, and Caregivers Who Experienced Solid Organ Transplant.

OBJECTIVE: To explore posttraumatic growth (PTG) in pediatric patients who have undergone solid organ transplant (SOT) and their caregivers, and to examine potential correlates of PTG. METHOD: Youth and young adults with a history of SOT (heart, kidney, liver) at least 1 month prior to participation and caregivers completed measures of PTG, demographic, and medical factors. In total, 59 youth (M = 12.68 years, SD = 1.91), 21 young adults (M = 19.37, SD = 0.82), and 95 caregivers (M = 37.95 years, SD = 9.37) participated. RESULTS: Overall, 67% of youth, 76% of young adults, and 89% of caregivers reported PTG within the medium to very high range. Appreciation of Life was the highest PTG subscale across all groups. Youth and caregiver PTG scores were significantly positively correlated. Religious affiliation and religious coping were positively associated with PTG for caregivers, and the relationship yielded large effect sizes for young adults. Caregivers of children with kidney transplants endorsed lower PTG than other organ types and caregivers of children who had an acute medical condition endorsed greater PTG than caregivers of children who had chronic illness. CONCLUSION: Findings suggest the pediatric SOT experience can yield positive changes such as a greater appreciation of life. Although small sample sizes may have led to reduced power for detecting significant findings for some analyses, results suggest religious, medical, and parent-child relationship factors are likely related to PTG in pediatric SOT and warrant future investigation.

Examining the association of medical complications and posttraumatic stress symptoms in pediatric solid organ transplant patients and their caregivers.

BACKGROUND: Post-traumatic stress symptoms (PTSS) have been reported by pediatric solid organ transplant (SOT) patients and their caregivers well after transplantation. This study examined the relationship between PTSS, medication adherence, and medical complications in SOT patients and their caregivers. A secondary aim examined the association between patient and caregiver-reported PTSS. METHODS: Pediatric SOT patients (N = 69) and caregivers (N = 73) reported on PTSS by completing the Child PTSD Symptom Scale (patients 8-17 years) or the Impact of Events Scale-Revised (patients 18 years and older and caregivers). Patient medication adherence was assessed using the Medication Level Variability Index (MLVI). Patients were dichotomized as experiencing a post-transplant medical complication (ie, transplant-related hospital admission prior to the year completing measures of PTSS) or no complications. RESULTS: Medication adherence was not significantly associated with patient or caregiver PTSS. A moderate effect size was found for elevated young adult and caregiver PTSS and the presence of a medical complication. Generally, the association between self-reported patient and caregiver PTSS was low. CONCLUSIONS: The presence of elevated PTSS in young adult patients may be partially explained by the presence of proximal medical complications and more so by comorbid psychiatric diagnoses in child and adolescent patients (based on exploratory analyses). Caregivers of patients with medical complications within the past year reported higher levels of PTSS. Overall, transplantation and its associated impact on PTSS may be unique experience for patients versus caregivers. Qualitative research may further elucidate these experiences and inform future clinical interventions.

Electronic Mental Health Screening in a Pediatric Heart Failure and Transplant Clinic.

Adults with heart failure and transplant are at increased risk for psychiatric comorbidities. The prevalence and impact of psychiatric comorbidities have not been well studied in pediatric heart failure and transplant. This quality improvement project sought to evaluate the feasibility of utilizing electronic mental health screening measures during pediatric heart failure and transplant clinics and to explore the prevalence and severity of self-reported depressive, anxiety, and suicidal ideation symptoms. Patients aged 11 years and older who presented to a pediatric heart failure and transplant clinic were administered the Patient Health Questionnaire-9 (PHQ-9) and Generalized Anxiety Disorder-7 (GAD-7). Medical chart review and a survey were used to examine additional variables of interest. There were no significant differences in moderate and severe mental health symptoms between gender, medical diagnoses, or those with recent hospitalizations. Pediatric patients with heart failure or transplant reported higher prevalence of anxiety and depressive symptoms, and similar suicidal ideation compared to the general adolescent population. Moreover, rates of depression and anxiety symptoms as well as suicidal ideation were comparable to pediatric patients with diabetes, lupus, inflammatory bowel disease, and cystic fibrosis. Results suggest electronic mental health screening is feasible for use during outpatient cardiology clinic visits and provides valuable mental health information.

Measurement of health-related quality of life in pediatric organ transplantation recipients: a systematic review of the PedsQL transplant module.

OBJECTIVE: To collect and assess the extant empirical literature assessing disease-specific health-related quality of life (HRQOL) in pediatric transplant recipients using the PedsQL 3.0 Transplant Module (PedsQL-TM) assessment. STUDY DESIGN: A systematic search and review procedure was conducted of research reporting use and results of the PedsQL-TM with samples of pediatric heart, liver, kidney, and lung transplantation. Searches were conducted in nine scholarly databases and two additional sources to identify unpublished research. Multiple reviewers screened studies meeting inclusion criteria in accordance with PRISMA guidelines. RESULTS: A final sample of nine studies reported findings for the PedsQL-TM with pediatric organ transplant recipients. Most studies relied on either kidney or liver transplant recipients from single pediatric transplant centers. Factor validity of the PedsQL-TM and inter-rater reliability (IRR) between patients and parents have not been adequately determined. Internal consistency reliability was found as acceptable or excellent across multiple studies. PedsQL-TM scores were found to vary with other HRQOL issues, yet few studies examined their association with medication adherence or posttransplant health outcomes. CONCLUSIONS: With the goal of enhancing and sustaining HRQOL in pediatric organ transplant recipients, the need for a psychometrically valid and reliable measure of transplant-specific HRQOL is apparent. Research on the PedsQL-TM supports the promise of this measure although future efforts should be taken to examine measurement issues such as factor validity and IRR. Assessing transplant-specific HRQOL in these patients is paramount for their care and appropriate decision-making by patients, families, and the transplant team.

The Role of Social Support in Adolescent/Young Adults Coping with Cancer Treatment.

Adolescents/young-adult (AYA) cancer patients are a psychosocially at-risk group as they are often less well-studied than other age cancer cohorts. Therefore, they experience disparities in access to developmentally informed treatment. Social support has been determined as an important aspect of AYAs' cancer experience, but additional research was needed to describe specific behaviors AYAs found helpful and to explore how AYAs seek opportunities for additional support. As part of a larger qualitative study, study aims were to determine how AYAs (ages 15-26) cope during cancer treatment and examine how social support interacts with individual AYA coping. Participants included 10 AYA cancer patients undergoing treatment (mean age = 18.9 years) and 10 parents (mean age = 45.6 years). Descriptively, participants scored within the normal to high range on measures of hope, depression/anxiety/stress, quality of life, and social support. Participants completed semi-structured, audio-recorded interviews that were transcribed and coded as generated. Qualitative analysis was guided by principles of grounded theory and utilized the constant comparative approach. Themes within social support groups included presence, distraction, positive attitude, and maintaining AYA autonomy, communication, and advocacy. Results suggest social supports provide additional coping resources for AYAs with cancer through supplementing individual coping strategies. Future directions/implications for intervention/treatment are discussed.

Digital medicine program with pediatric solid organ transplant patients: Perceived benefits and challenges.

Given the complexity of the pediatric post-transplant medication regimen and known medication adherence difficulties within the solid organ transplant population, interventions to improve adherence continue to be explored and fine-tuned. Advances in technology have led to the development of new programs aimed at improving medication adherence and the overall care of transplant patients. This manuscript describes implementation of a DMP where transplant patients' medications were co-encapsulated with ingestible sensors, and adherence was monitored via a patient mobile application and a provider portal. The benefits and challenges of the DMP as reported by patients, caregivers, and medical providers are explored in this manuscript. Participant feedback regarding best practices highlighted these benefits: ease of use/intuitive technology, sense of improved communication with medical team, increased knowledge and motivation around treatment regimen, and positive self-reports of medication adherence. Challenges included reluctance to participate (n = 43, 54.43% of patients approached declined participation) and patch wearability difficulties reported by participants (n = 20; 68.97%). Other notable challenges included the following: limited drug profile compatibility with the DMP technology and concerns about privacy and electronic data sharing for patients who chose not to participate. DMP implementation highlighted how technological advances offer novel methods to assess adherence, enhance medical decision-making, and can potentially improve clinical outcomes. Although numerous benefits of the program were recognized by participants, challenges were identified and the DMP technology and medication panel continues to be refined; further investigation of such programs continues to be warranted.

Psychosocial predictors of medication non-adherence in pediatric organ transplantation: A systematic review.

Adherence to immunosuppressant medication is critical to health and quality-of-life outcomes for children who have received a solid organ transplant. Research on the psychological and social predictors of medication adherence is essential to the advancement of pretransplant assessments and transplant psychosocial services. Despite the importance of identifying risk factors, the literature remains limited regarding psychosocial predictors of non-adherence. A systematic search was conducted to identify studies of the psychosocial predictors of post-transplant medication non-adherence in pediatric solid organ transplantation. From 1363 studies identified in searches of empirical literature, a final sample consisted of 54 publications representing 49 unique studies. Findings regarding psychosocial predictors were inconsistent with non-adherence associated largely with adolescence, racial/ethnic minority status, and presence of mental health issues. Familial predictors of non-adherence problems included single-parent households, lower socioeconomic status, lower family cohesion, presence of family conflict, and poor family communication. Several studies reported an association between non-adherence and social pressures (eg, peer social interaction, wanting to feel normal) among adolescent transplant recipients. While significant methodological and substantive gaps remain in this body of knowledge, this review synthesizes current evidence for assessment for transplant clinicians and researchers.

A longitudinal investigation of posttraumatic growth in adult patients undergoing treatment for acute leukemia.

An acute leukemia diagnosis can be an extremely stressful experience for most patients. Posttraumatic growth (PTG) is positive psychological change experienced following a struggle with highly challenging life circumstances. The current study is the first longitudinal investigation of predictors of PTG and distress in adult acute leukemia patients undergoing induction chemotherapy. Findings suggest that these patients report PTG, and levels of PTG appear to increase over the weeks following leukemia diagnosis and induction chemotherapy. Variables associated with higher total PTG scores over time included greater number of days from baseline, younger age, and greater challenge to core beliefs. Variables associated with higher distress included greater number of days from baseline, greater perceived cancer threat, higher symptom severity, and lower spiritual well-being. Results underscore the critical role that examination of one's core beliefs may play in the development of PTG over time.

Assessing posttraumatic cognitive processes: the Event Related Rumination Inventory.

Cognitive processes in the aftermath of experiencing a major life stressor play an important role in the impact of the event on the person. Intrusive thoughts about the event are likely to be associated with continued distress, while deliberate rumination, aimed at understanding and problem-solving, should be predictive of posttraumatic growth (PTG). The Event Related Rumination Inventory (ERRI), designed to measure these two styles of rumination, is described and validation information is provided. Using a college student sample screened for having experienced highly stressful life events, data were obtained (N=323) to conduct an exploratory factor analysis that supported the two factors of the ERRI. Separate confirmatory factor analyses (CFA) on two additional samples (Ns=186 and 400) supported a two-factor model. The two ERRI factors were validated by comparison with related variables and by assessing their contributions to predicting distress and PTG in two samples (Ns=198 and 202) that had been combined to conduct the second CFA. Data indicate the ERRI has solid psychometric properties, captures variance not measured by stable differences in cognitive styles, and the separate factors are related to posttraumatic distress and growth as predicted by existing models of PTG.

A short form of the Posttraumatic Growth Inventory.

A short form of the Posttraumatic Growth Inventory (PTGI-SF) is described. A sample of 1351 adults who had completed the Posttraumatic Growth Inventory (PTGI) in previous studies provided the basis for item selection. The resulting 10-item form includes two items from each of the five subscales of the original PTGI, selected on the basis of loadings on the original factors and breadth of item content. A separate sample of 186 completed the short form of the scale (PTGI-SF). Confirmatory factor analyses on both data sets demonstrated a five-factor structure for the PTGI-short form (PTGI-SF) equivalent to that of the PTGI. Three studies of homogenous clinical samples (bereaved parents, intimate partner violence victims, and acute leukemia patients) demonstrated that the PTGI-SF yields relationships with other variables of interest that are equivalent to those found using the original form of the PTGI. A final study demonstrated that administering the 10 short-form items in a random order, rather than in the fixed context of the original scale, did not impact the performance of the PTGI-SF. Overall, these results indicate that the PTGI-SF could be substituted for the PTGI with little loss of information.