Young Adult Transplant Patients Research Articles

9.3 Delirium in Pediatric and Young-Adult Transplant Patients

9.3 Delirium in Pediatric and Young-Adult Transplant Patients

Exploring the potential for online peer support mentorship: Perspectives of pediatric solid organ transplant patients.

Self-management for patients who have undergone solid organ transplantation is demanding and a challenge for adolescents transitioning into adult-oriented healthcare systems. This study explores whether adolescent and young adult solid organ transplant patients support the use of online peer support programs that encourage peer mentorship as an approach to improve disease self-management. A qualitative descriptive design comprised of semi-structured interviews with adolescent and young adult transplant patients. Individual interviews were audio-recorded, transcribed verbatim, and subject to content analysis. Emergent categories and themes were refined through member checking and team consensus following saturation. Interviews were conducted across organ groups with 15 participants (60% female) ages 14 to 22years. Participants expressed unanimous support for an online peer support mentorship program to aid disease self-management in the pediatric transplant patient population. Three themes emerged from the interviews: (a) self-management care can be "taxing"; (b) there would be value in peer mentorship for adolescent transplant patients; and (c) online peer mentorship is the "best" option but still requires relationship building. Logistical preferences of an online peer mentorship program were solicited. The preferred peer "match" was someone of the same organ transplant group and gender who was able to have weekly contact via texting. Creating tailored, online peer mentorship programs is gaining evidence to justify further development. Findings from this study will support program modifications for adolescent and young adult solid organ transplant patients. Next steps will involve usability and feasibility testing of an adapted online program for this patient group.

Psychotropic medication use trends in a large pediatric and young adult solid organ transplant population.

This study describes psychotropic medication use in a pediatric and young adult solid organ transplant population. We conducted a retrospective review of the lifetime incidence of psychotropic medication use and associated characteristics in patients seen over a 6-year period at a large pediatric transplant center utilizing univariate and multivariate statistical analyses. The lifetime incidence of psychotropic medication use was 36.5% in 393 patients. Transplant psychiatry provided psychopharmacological consultation to 21.9% of patients. Controlling for age and sex, there were significant associations between psychotropic use and thoracic organ disease (heart/lung) (AOR=2.14; 95% CI: 1.2-3.8; P=0.01), White race (P=0.0002), histories of depressive/mood disorders (AOR=3.68; 95% CI: 1.8-7.7; P=0.0005), attention/learning disorders (AOR=3.30; 95% CI: 1.6-6.9; P=0.001), acute and post-traumatic stress disorders (AOR=10.54; 95% CI: 2.6-42.8; P=0.001), and experiencing bullying (AOR=2.16; 95% CI: 1.03-4.55; P=0.04). In unadjusted tests, significant associations were found between lifetime psychotropic usage and patient anxiety history (OR=2.26; 95% CI: 1.5-3.5; P=0.0002), end-of-life disease progression (OR=3.04; 95% CI: 1.7-5.4; P=0.0002), family psychiatric history (OR=2.17; 95% CI: 1.4-3.4; P=0.0007), and adherence concerns (OR=2.67; 95% CI: 1.7-4.1; P<0.0001). The lifetime incidence of psychotropic medication use among pediatric and young adult transplant patients is substantial. Patients with thoracic organ disease, end-of-life illness, individual/family psychiatric histories, trauma, and bullying histories have particularly high rates. Integrating child psychiatry as part of pediatric transplant teams should be an important consideration for the care of these patients.

Impact of a Dedicated Young Adult Service on Risk of Non-Adherence and Non-Engagement in Pediatric-Adult Transition Transplant Recipients and in Young Adult Patients Presenting directly to Adult Care for Transplantation

Background and Aim During transition from pediatric to adult care there is a high risk of non-adherence with immunosuppression and clinical follow-up amongst teenage transplant recipients. This results in a markedly increased risk of transplant failure (35% within 3 years of transfer to adult care) and even mortality in liver and heart transplant recipients. There has been increasing recognition of the need for integrated pediatric to adult clinical pathways to facilitate the transition process with the potential to improve outcomes in transplanted teenagers and young adults. However little has been documented about outcome in older teenagers and young adults (aged 16-30) presenting directly to adult care. We have developed a dedicated teenage and young adult service for kidney transplant recipients co-ordinated by a youth worker. This study shows the impact of this novel approach on both transitioning and young adult transplant patients' risk of non-adherence and transplant failure. Method We established a dedicated young adult service involving a physician, nurse practitioner and a full time youth worker in 2015. The service comprises an integrated pediatric-adult transition pathway and a community-based young adult clinic (YAC) for 16-30 year old transplant recipients. The youth worker catalyses peer interaction, provides 1:1 support and community outreach to enhance engagement [Young Adult Service (YAS).Twenty five [ 10 transition (3m;7f median age 16 (15-17) yrs) ;15 newly transplanted young adult (2f;13m: median age 25(19-30)yrs] transplant patients participated in the YAC and YAS over a 2 year period between November 2015-2017. Each new patient entering the service was assessed for risk of non-adherence and disengagement and categorised into Levels 1(highest)-4(lowest) support from the YAS. Level 1 (Highest: immediate 1:1 support; currently non-adherent at risk of graft loss): Level 2 (Non-critical personalied regular support from youth worker); Level 3 (Low risk: in contact with young adult service (YAS); participating in peer support); Level 4 (Very low risk: seen by dedicated YAS team in standard clinics- no specialist youth worker support). Patients stable in Level 4 graduate into standard adult transplant clinics. The risk categoristaion was re-assessed in November 2017.Conclusion Risk of non-adherence and non-engagement is higher in new young adult patients presenting directly to adult care for transplantation than in pediatric transplant recipients transitioning to adult care. This is contrary to the published perception that transition to adult care carries the highest risk of non-adherence and poor clinical engagement. A dedicated young adult service with specific support from a youth worker can successfully enhance engagement and reduce risk of non-adherence in young adults coping with a transplant.

Adherence in adolescents and young adults following heart or heart‐lung transplantation

To assess the prevalence and some potential correlates of non-adherence to medications in adolescent and young adult transplant patients. Fifty patients who had undergone heart or heart-lung transplantation 1.4-14.9 yr (mean 8.8 yr) previously completed the Beliefs about Medication Questionnaire (BMQ), Perceived Illness Experience (PIE) scale and a demographics questionnaire. Medical notes were reviewed for information regarding previous psychiatric referral, rejection episodes and complications and noted concerns about adherence. Forty (80%) completed questionnaires were received. Non-adherence determined from the questionnaires was associated with forgetting to take medication and was classified as unintentional non-adherence. Such non-adherence was reported by 11 (28%) patients. Seven patients (18%) showed evidence from their records of deliberate non-adherence, which was classified as intentional. Whilst intentional non-adherence was associated with depression and transplant-related lymphoma, unintentional non-adherence and perceived difficulties with medications were associated with high scores on the PIE preoccupation with illness and BMQ concerns subscale and with drinking alcohol. Future research is required to determine whether unintentional non-adherence results in significant medical complications in the longer term and how a reduction in the prevalence of non-adherence can be facilitated.

Long-term follow-up of renal transplantation in children: a Dutch cohort study.

Few data exist on long-term morbidity, overall survival, and graft survival of pediatric renal transplantation. The authors performed a long-term cohort study in all Dutch patients, born before 1979, with onset of end-stage renal disease (ESRD) between 1972 and 1992 at age 0 to 15 years. Data on graft survival and determinants of outcome were obtained by reviewing all medical charts. The health status was assessed by cross-sectional examination of surviving patients. Three hundred ninety-seven transplantations were performed in 231 of all 249 patients, of whom 25 died with a functioning graft. Cardiovascular disease was the most prominent cause of death. Graft survival estimates for all transplantations were 59.2%, 45.3%, 35.4%, and 30.3% at 5, 10, 15, and 20 years, respectively. In comparison with azathioprine, cyclosporine as the immunosuppressant was associated with increased graft survival in retransplantations but not in first transplantations. Cross-sectional examination was performed on 110 patients. In 44 patients, the most recent graft survival exceeded 15 years. Co-morbidity was found in 40% of all patients; motor, hearing, or visual disabilities were found in 19%. Bone disease, headaches, itching, and tremors were the most reported disabling problems. Cyclosporine use was associated with hypertension and a history of epilepsy. Compared with all age-matched Dutch inhabitants, the educational attainment was low, and unemployment and parental dependency were high. The authors' results emphasize the need for reducing cardiovascular disease and metabolic bone disease in pediatric ESRD, a policy toward less toxic antirejection therapy, a more strict treatment of hypertension, and more attention for schooling and social development toward independence.