Young Adult Transplant Recipients Research Articles

Pregnancy after transplant in the older adolescent: Anticipatory guidance for the pediatric provider.

Healthcare providers who care for adolescent and young adult transplant recipients should be aware of contraception counseling and potential for pregnancy in this at-risk cohort. This paper will review contraceptive options in general for transplant recipients. There will also be a review of common immunosuppressive medications and their risk profile regarding pregnancy after transplantation. Data from the Transplant Pregnancy Registry International were analyzed looking at recipients conceiving under the age of 21 and were compared to overall pregnancy outcomes. Overall pregnancy outcomes in recipients under the age of 21 are like the adult cohort. It is imperative to provide contraception counseling to the adolescent and young adult and inform their caregiver that pregnancy can happen if the recipient is sexually active. Pregnant adolescent and young adult transplant recipients should be followed by a multidisciplinary team to assure a positive outcome for the recipient, transplant, and neonate.

Trajectory of Sleep, Depression, and Quality of Life in Pediatric HSCT Recipients

Disrupted sleep is commonly reported during hematopoietic stem cell transplant. In this study, we use actigraphy to measure sleep parameters, and qualitative measures of quality of life, depression, and sleep in pediatric and young adult transplant recipients to describe their time course through transplant. Eight patients had evaluable actigraphy data, and 10 patients completed the surveys. The median age of the 6 male and 7 female participants was 13.94 years old. Sleep duration and efficiency measured by actigraphy were suboptimal prior to transplant, then declined to a nadir between Day +7 to +14. Self-reported sleep quality, depression, and quality of life were worst at Day +14 to +30 but improved by Day +100. Findings support efforts to improve sleep, which may improve recovery, mental health and quality of life.

Sexual and reproductive health screening and counseling in adolescent and young adult transplant recipients.

Adolescents and young adults with and without chronic illnesses partake in risk-taking behavior. Clinicians in transplant clinics should be aware of the prevalence of risk-taking behavior in their adolescent and young adult solid organ transplant patients in order to provide complete care. Creating an environment where teens and young adults feel comfortable discussing risky behavior is important and includes creating a privacy policy and increasing comfort of the healthcare provider in asking sensitive questions. This review is intended to help the providers in the transplant clinic screen for and counsel about risk-taking behaviors with their adolescent and young adult patients, specifically around sexual and reproductive health.

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

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. 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. 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. 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.

Care processes and structures associated with higher medication adherence in adolescent and young adult transplant recipients.

We aimed to identify care processes and structures that were independently associated with higher medication adherence among young transplant recipients. We conducted a prospective, observational cohort study of 270 prevalent kidney, liver, and heart transplant recipients 14-25years old. Patients were ≥3months post-transplant, ≥2months post-discharge, and followed in one of 14 pediatric or 14 adult transplant programs in Canada. Patients were enrolled between June 2015 and March 2018 and followed for 6months. Adherence was assessed at baseline, 3, and 6months using the BAASIS© self-report tool. Patients were classified as adherent if no doses were missed in the prior 4weeks. Transplant program directors and nurses completed questionnaires regarding care organization and processes. Of the 270 participants, 99 were followed in pediatric programs and 171 in adult programs. Median age was 20.3years, and median time since transplant was 5years. At baseline, 71.5% were adherent. Multivariable mixed effects logistic regression models with program as a random effect identified two program-level factors as independently associated with better adherence: minimum number of prescribed blood draws per year for those >3years post-transplant (per 1 additional) (OR 1.12 [95% CI 1.00, 1.26]; p=.047), and average time nurses spend with patients in clinic (per 5 additional minutes) (OR 1.15 [1.03, 1.29]; p=.017). Program-level factors including protocols with a greater frequency of routine blood testing and more nurse time with patients were associated with better medication adherence. This suggests that interventions at the program level may support better adherence.

Promoting safe sexual practices and sexual health maintenance in pediatric and young adult solid organ transplant recipients.

The majority of Americans make their sexual debut during their adolescent years. Preventing pregnancy and STI during this period is vital to ensuring health and safety. As survival has improved after pediatric SOT, chronically immunosuppressed adolescents seek guidance in their medical home on matters of sexual health. Transplant practitioners often do not feel equipped to fully address these needs. This review serves as an introductory sexual preventive care resource for adolescent and young adult (AYA) SOT recipients. First, we review data on safety, efficacy, and use of contraceptive options currently available for transplant recipients with child-bearing potential. Then, we suggest a personalized sexual health discussion focusing on the diagnosis and prevention of STIs in adolescent and young adult transplant recipients. Finally, we present recommendations for STI screening of asymptomatic patients, use of index of suspicion and diagnostic testing in symptomatic patients, and opportunities to optimize STI prevention strategies. Data compiled from studies of adult SOT recipients, general population studies, and published guidelines are often extrapolated for use, as limited data exist in AYA SOT recipients. This informational dearth underscores the need for future research to better characterize the unique needs of AYA SOT recipients.

Adherence Barriers for Adolescent and Young Adult Transplant Recipients: Relations to Personality.

Much of the extant literature on adherence barriers has focused on modifiable factors (e.g., knowledge, social support); however, less is known about how barriers may be associated with relatively stable constructs, such as personality traits. The current study examines associations between personality (i.e., agreeableness, conscientiousness, neuroticism) and adherence barriers in a group of adolescent and young adult (AYA) solid organ transplant recipients. Demonstrating associations between barriers and personality may help in understanding why barriers are stable over time. Additionally, different personality traits may relate to different types of barriers. The sample included 90 AYAs (Mage = 17.31; SD = 2.05; 58% male) who received a kidney (n = 36), liver (n = 29), or heart (n = 25) transplant at least 1 year prior to study enrollment. AYAs completed the Agreeableness, Conscientiousness, and Neuroticism scales from the NEO Five-Factor Inventory and the Adolescent Medication Barriers Scale (AMBS). Lower levels of agreeableness and conscientiousness and higher levels of neuroticism were related to higher self-reported barrier scores (AMBS; r's = .31- .53, p's < .001). The relations differed by personality factor and barrier type. Adherence barriers showed medium to large associations with personality traits that are known to be relatively stable. Our findings indicate that the temporal stability of barriers to adherence may be due in part to their association with relatively enduring personality characteristics.

Digital Wings: Innovations in Transplant Readiness for Adolescent and Young Adult Transplant Recipients: Erratum.

Digital Wings: Innovations in Transplant Readiness for Adolescent and Young Adult Transplant Recipients: Erratum.

Digital Wings: Innovations in Transition Readiness for Adolescent and Young Adult Transplant Recipients [corrected

The Johns Hopkins University School of Medicine organized 2 multistakeholder symposia on February 2, 2018 and January 11, 2019 to address the problem of high graft failure in adolescent and young adult (AYA) solid organ transplant (SOT) recipients. Participants included international experts in transplantation, behavioral psychology, patient/parent advocacy, and technology. The objectives of the symposia were as follows: (1) to identify and discuss the barriers to and facilitators of effective transfer of care for AYA SOT recipients; (2) to actively explore strategies and digital solutions to promote their successful transfer of care; and (3) to develop meaningful partnerships for the successful development, evaluation, implementation, and dissemination of these digital solutions. Additionally, data were collected from 152 AYA SOT recipients demonstrating a substantial gap in how this population uses technologies for health-related activities, alongside an increased interest in an app to help them manage their transplant.

Psychosocial Health and Lifestyle Behaviors in Young Adults Receiving Renal Replacement Therapy Compared to the General Population: Findings From the SPEAK Study

Patients in late adolescence and early adulthood receiving renal replacement therapy (RRT) face disruption to normal activities, which affects well-being. We aimed to define psychosocial and lifestyle outcomes for young adults on RRT compared to the general population. We undertook a cross-sectional survey (the SPEAK [Surveying Patients Experiencing Young Adult Kidney Failure] Study) using validated measures and general population comparator data from the Health Survey for England and Avon Longitudinal Study of Parents and Children. Additional clinical information was obtained from the UK Renal Registry. 16- to 30-year-olds receiving RRT. Psychosocial health and lifestyle behaviors. We compared outcomes between populations using age- and sex-adjusted regression models, weighted to account for response bias by sex, ethnicity, and socioeconomic status. Our findings were used to update recent meta-analyses. We recruited 976 young adults and 64% responded to the survey: 417 (71%) with kidney transplants and 173 (29%) on dialysis therapy. Compared to the general population, young adults on RRT were less likely to be in a relationship and have children and more likely to live in the family home, receive no income, and be unable to work due to health. They had poorer quality of life, worse well-being, and twice the likelihood of a psychological disturbance (OR, 2.7; 95% CI, 2.0-3.7; P<0.001). They reported less smoking, alcohol and drug abuse, and crime. In a meta-analysis, our study showed the greatest differences in quality of life compared to the general population. Cross-sectional study design, meaning that we could not track the impact of treatment changes on the outcomes. This study involving a large cohort of young adult transplant recipients and dialysis patients provides evidence of worse psychosocial outcomes but more positive lifestyle behaviors in young adults on RRT compared to the age-matched general population.

Cell phone support to improve medication adherence among solid organ transplant recipients.

For many adolescent and young adult solid organ transplant recipients, medication non-adherence is a mortal issue. This study investigated the feasibility, acceptability, and potential efficacy of a 12-week cell phone support intervention to improve immunosuppressant medication adherence. A small sample (N=8) of non-adherent adolescent and young adult transplant recipients, aged 15-20.5years, was enrolled. Cell phone support consisted of short calls each weekday including medication reminders, discussion of needs, problem-solving support, and promotion of clinic and community resources. Changes in adherence were measured by self-report and laboratory values, and intervention acceptability, adherence barriers, social support, depression, and substance use were assessed by self-report. Pre-post effect sizes showed medium-to-large improvements in adherence, lasting through a 12-week follow-up assessment. There were also small-to-medium changes in adherence barriers, social support, and depression. However, acceptability and feasibility were limited, due to a low rate of enrollment by eligible male participants. Cell phone support interventions may promote medication adherence among adolescents and young adults. Cell phone support warrants further investigation, including a randomized controlled trial to evaluate efficacy.

(700) - Pediatric Heart Transplantation: Transitioning to Adult Care

There were 9,566 pediatric heart transplants reported to the ISHLT from 1982-2009.1 Every year, the ISHLT pediatric registry report survival statistics improve and, in addition, the number of children and adults undergoing transplantation for congenital heart disease continues to increase.2 With increasing numbers of pediatric patients surviving into adulthood with excellent quality of life,3 more young adult transplant recipients will receive care at adult centers. Transition programs are critical to support care for these young patients who are traditionally cared for at children’s hospitals. Transition is defined as a “complex set of beliefs, skills, and processes that facilitate the movement from pediatric care to adult centered care.”4 The goal of transition is to provide comprehensive, developmentally appropriate healthcare in a coordinated, uninterrupted, and seamless manner across centers and in partnership with patients.

Illness, normality and identity: the experience of heart transplant as a young adult

Purpose: End stage heart failure and transplant present great opportunities and challenges for patients of all ages. However, young adulthood may present additional specific challenges associated with the development of identity, career and romantic relationships. Despite recognition of greater mortality rates in young adults, consideration of the experience of transplant during this life stage has been largely overlooked in the literature. The aim of this study was to explore the experience of heart transplant in young adults.Method: Interviews were conducted with nine participants across three transplant services in the United Kingdom and the data subject to interpretative phenomenological analysis.Results: Analysis identified three themes. “Separating from illness” and “working toward normality” involved limiting the influence of illness on identity, as well as reengaging with typical functioning in young adulthood. “Integrating transplant into identity” involved acknowledging the influence of living with a shortened life expectancy.Conclusions: The need for support that recognizes specific challenges of transplant as a young adult is discussed (e.g. the development of age specific end of life pathways, improved communication between transplant recipients, their families and teams), including consideration of the impact of societal discourses (e.g. gift of life) which provided additional challenges for patients.IMPLICATIONS FOR REHABILITATIONHeart transplant presents specific challenges according to the recipient’s life stage.The needs of young adult recipients should be considered.Transplant professionals should consider providing opportunities for peer support and addressing the identities and values of young adult transplant recipients during rehabilitation.

Executive Functioning, Barriers to Adherence, and Nonadherence in Adolescent and Young Adult Transplant Recipients.

OBJECTIVE : To evaluate levels of executive functioning in a sample of adolescent and young adult (AYA) transplant recipients, and to examine executive functioning in association with barriers to adherence and medication nonadherence. METHOD : In all, 41 caregivers and 39 AYAs were administered self- and proxy-report measures. RESULTS : AYA transplant recipients have significant impairments in executive functioning abilities. Greater dysfunction in specific domains of executive functioning was significantly associated with more barriers to adherence and greater medication nonadherence. CONCLUSION : AYA transplant recipients are at increased risk for executive dysfunction. The assessment of executive functioning abilities may guide intervention efforts designed to decrease barriers to adherence and promote developmentally appropriate levels of treatment responsibility.

Young Adult Kidney Transplant Recipients: Nonadherent and Happy.

The aim of this study was to investigate (a) the extent to which age at first renal replacement therapy, achievement of developmental milestones, satisfaction of psychological needs, and coping were related to subjective well-being and medication adherence among young adult kidney transplant recipients; and (b) the relationship between subjective well-being and immunosuppressive medication adherence. A cross-sectional, interview study was conducted among renal transplant patients aged 20 to 30 years. In addition to sociodemographic and medical characteristics, concepts measured were: subjective well-being (Positive And Negative Affect Schedule; Satisfaction With Life Scale), medication adherence (Basel Assessment of Adherence to Immunosuppressive Medication Scale), dispositional coping (Brief COPE), achievement of developmental milestones (Course of Life Questionnaire), and satisfaction of psychological needs (Basic Psychological Needs Scale). Sixty-two patients participated (66% men; mean age, 26 years). Sixty-five percent were classified as nonadherent in the past month. In contrast, subjective self-rated overall adherence was high. None of the variables measured were related to nonadherence. Higher feelings of competence and autonomy, and timely achievement of social and psychosexual developmental milestones were related to higher subjective well-being. Well-being and adherence did not differ according to age at diagnosis or first renal replacement therapy. Two thirds of participants were classified as nonadherent which conflicts with participants' own high rating of medication adherence. This emphasizes the need for continued adherence support among young adult transplant recipients; however, no targets for interventions were found in this study. Potential targets for interventions aimed at improving well-being include competence and autonomy.

Optimal management of young adult transplant recipients: the role of integrated multidisciplinary care and peer support.

Young adults with chronic diseases do not fit easily into an aging adult patient population and are frequently isolated from peers. The result is a high rate of non-adherence with medical care and therapy, resulting in poor outcomes. This is an important clinical problem shared equally by young adults transitioning from pediatric care and those presenting directly to adult care. An integrated multidisciplinary pediatric–adult service can improve the transition process and preparation of the teenager for adult health care. A seamless transition into a dedicated young adult service results in reduced premature failure rates of kidney transplants and improved clinic and medication adherence.

PAX2 gene mutations in pediatric and young adult transplant recipients: kidney and urinary tract malformations without ocular anomalies

Heterozygous humans for PAX2 mutations show autosomal dominant papillorenal syndrome (PRS), consisting of ocular colobomas, renal hypo/dysplasia and progressive renal failure in childhood. PAX2 mutations have also been identified in patients with isolated renal hypo/dysplasia. Twenty unrelated children and young adults with kidney and urinary tract malformations and no ocular abnormalities were retrospectively recruited for PAX2 mutational analysis. All patients had undergone renal transplantation after end-stage renal disease. We identified two new sequence variations: (i) a deletion causing a frameshift (c.69delC) and (ii) a nucleotide substitution determining a splice site mutation (c.410+5 G/A) by predictive analysis. Therefore, we suggest PAX2 molecular analysis to be extended to all patients with congenital malformations of kidney and urinary tract (CAKUT).

The use of art therapy to detect depression and post‐traumatic stress disorder in pediatric and young adult renal transplant recipients

Pediatric and young adult renal transplant recipients may experience feelings of depression and emotional trauma. A study was conducted to (1) determine the prevalence of depression and emotional trauma and (2) assess the utility of the Formal Elements of Art Therapy Scale (FEATS). Sixty-four renal transplant recipients, 6-21 yr of age, were evaluated using self-report measures (CDI and Davidson) and art-based assessments. Subject art was analyzed by art therapists using seven of the 14 elements of the (FEATS), to assess depression. Unlike CDI and Davidson self-report testing, all patients were able to complete the art-based directives. When self-report measures and art-based assessments were combined, 36% of the study population had testing results consistent with depression and/or post-traumatic stress. The FEATS assessments identified a subset of patients who were not identified using the self-report measures. There was a correlation between CDI and Davidson scores (p < 0.0001), Davidson scores correlated with hospital days (p = 0.05), and FEATS correlated with height Z score (p = 0.04) and donor type (p = 0.01). Patients who required psychological interventions including antidepressant therapy, psychological counseling and psychiatric hospitalization during the year after the study were identified as depressed. Sensitivity for FEATS and CDI were 22 and 50% respectively. The results suggest that while art therapy may be of utility in the identification of pediatric and young adult transplant recipients who are suffering from depression, FEATS analysis appears to lack sufficient sensitivity to warrant its use in this population. Study of other quantitative art-based assessment techniques may be warranted.

I131-ORTHO-HIPPURATE SCANNING IN THE PEDIATRIC AND ADOLESCENT TRANSPLANT RECIPIENT

This study evaluates the use of the single injection technique of I131-ortho-hippurate (Hippuran R) as a measure of kidney allograft function in fifty-six pediatric, adolescent, and young adult transplant recipients. Graft age at the time of evaluation varied from one week to six years. Effective Renal Plasma Flow (ERPF), Normalized Effective Renal Plasma Flow (NERPF), Excretion Index (EI), and Bladder to Kidney Ratio (BK) were obtained from each scan. Anthropomorphic data and clinical measures assessing renal function, including creatinine clearances, serum creatinine, and protein excretion, were collected at the time of scanning. Renal biopsy and arteriogram findings were included when available. Based on these clinical and histological findings, and the patient's response to steroid therapy, each scan was categorized as either acute rejection, chronic rejection, or normal function. The mean and standard deviation of the ERPF, NERPF, EI, and BK was then calculated for each category. The values of these four parameters were also calculated by age groups for each category. The ability of the hippuran scan to predict acute rejection, chronic rejection, or normal function was assessed by a discriminate analysis.