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.

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.

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.

Diabetes Camp Counselors: An Exploration of Counselor Characteristics and Quality of Life Outcomes.

Purpose The purpose of this study is to investigate the effect of volunteering at a diabetes camp on emerging adults with and without type 1 diabetes mellitus (T1DM). Methods Thirty counselors with and 22 without T1DM (19.07 ± 2.71 years old) volunteered at a 1-week T1DM camp in the northeastern United States. Counselors with T1DM had a range of self-reported A1C scores (5.8% or 39.9 mmol/mol to 14.0% or 129.5 mmol/mol). Self-report measures of quality of life, hope, and well-being were completed pre- and postcamp at 4 time points: 1 month before camp, arrival at camp, final day of camp, and 2 months postcamp. Open-ended questions regarding counselor experiences were analyzed to understand camp effect. Results There were significant differences between counselors' levels of trait hope in comparison to published norms. There were few clear differences in psychosocial outcomes pre- and postcamp; however, some increases in well-being were revealed in anticipation of camp. Major reasons for volunteering included assisting others and reciprocating or continuing a perceived positive experience as a camper. Conclusion No changes in psychosocial outcomes pre- to postcamp were observed. However, measures used in this study may be poorly defined for a counselor population. Further research on the characteristics of emerging adults who choose to be camp counselors is needed. By understanding the demographics of this population, health professionals can help target individuals to become camp counselors as well as enhance the camp experience to fit their developmental needs.