Psychosocial predictors of medication adherence in pediatric heart and lung organ transplantation

Few studies have identified the psychosocial characteristics of those children and their families associated with future non‐adherence to immunosuppressive medications following a heart or lung transplant. UNOS data and medical records information were used to test the association between patient and family psychosocial characteristics and medication adherence. Medication adherence outcomes were obtained using the physician assessments in the UNOS data and measured through patient‐level standard deviation scores of immunosuppressive medication blood levels. Complete data were collected on 105 pediatric heart and lung transplant recipients and their families. Multivariate, stepwise analyses were conducted with each adherence outcome. Physician reports of adherence were associated with age of the child at transplantation, parental education, two‐parent families, significant psychosocial problems, and the pretransplant life support status of the child. The resulting model (χ²=28.146, df=5, P<.001) explained approximately 39.5% of the variance in physician reports of adherence (Nagelkerke r²=.395). Blood level standard deviation scores were predicted by age at transplant (F=5.624, P=.02, r²=.05). Results point to the difficulties experienced by children and families when undergoing a heart or lung transplantation. Efforts to develop standardized and evidence‐based pretransplant psychosocial assessments in pediatric populations are suggested, especially those surrounding familial risk factors.     

Growing pains: non-adherence with the immunosuppressive regimen in adolescent transplant recipients

One-year graft and patient survival are better in adolescent transplant recipients (age 11-19 years) than in younger (age < 11 years) pediatric transplant recipients. However, several groups found that long-term outcomes (> i.e. 5 year post-transplant) in the adolescent age group are significantly worse than in younger transplant recipients. A behavioral factor that could explain an important part of the poorer clinical outcome in adolescent transplant recipients is non-compliance with medication taking. Adolescents, like all organ transplant recipients irrespective of their age, must adhere to a life-long immunosuppressive regimen in addition to other aspects of their therapeutic regimen. Therefore, adolescent transplant recipients, as all transplant patients, should be regarded as a chronically ill patient population in whom behavioral and psychosocial management is equally important as state-of-the-art medical management. This paper provides an overview of the current knowledge on prevalence, clinical consequences, and risk-factors for non-compliance with the immunosuppressive regimen in adolescent transplant recipients and offers some suggestions for adolescent-tailored interventions to improve medication adherence.     

A scoping review of pediatric transplant education

Background

Education is crucial for pediatric patients and caregivers throughout the transplant continuum, yet data are lacking around which interventions are effective and in what circumstances.

Methods

We undertook a scoping review with the objectives of (a) describing the types, effects, and outcomes of patient-focused educational interventions before and after pediatric transplant and (b) understanding the educational experiences of patients and caregivers. Five scientific databases were explored for relevant literature using the JBI methodology. Educational interventions published in English, targeting pediatric solid organ transplant patients (0–25 years) and their caregivers were included. Relevant data from eligible articles (n = 27) were extracted and summarized.

Results

Eighteen articles describing 17 educational interventions were identified for objective A, and nine articles qualitatively assessing patient or parental learning needs were identified for objective B. Most interventions were directed toward teenage patients and their caregivers post kidney transplant, primarily focusing on medication self-management and adherence, or providing general information on transplant using multicomponent delivery formats. Most interventions achieved statistically significant improvements in knowledge (n = 8/9) and patients or caregivers expressed satisfaction with the intervention (n = 7/7) but health-related outcomes such as medication adherence (n = 2/6) or behavior change (n = 1/3) rarely achieved statistically significant results. In objective B, patients and caregivers described the transplant process as overwhelming, but indicated that social supports and education helped them cope. Participants consistently wanted more information than they received.

Conclusion

Caregivers and pediatric patients value transplant education, but high-quality studies are limited. Since education is a fundamental part of the transplant process, future research in this area should be prioritized.     

Transition to adult care for pediatric liver transplant recipients: the Western Australian experience

Transition to adult care is a vulnerable period for pediatric transplant recipients and is associated with reduced medication compliance, graft loss, and increased mortality. Psychosocial outcomes in young adults differ between pediatric transplant recipients and their healthy peers. We conducted a single‐center, retrospective cohort study of all pediatric liver transplant recipients who were transitioned through our center. This study aimed to assess the outcomes of transitioned pediatric liver transplant recipients at an Australian center, including mortality, adherence, and psychosocial morbidity. The 1‐ and 5‐year survival rates following transition were 100% and 92%, respectively. There were no episodes of late rejection. In total, 66.7% of patients were compliant with immunosuppression and 61.1% of patients were compliant with clinic attendance. There was a significant relationship between medication compliance and clinic attendance, as well as presence of psychological issues with clinic non‐attendance. Psychosocial outcomes were in keeping with age‐matched data from the general population. All patients were employed or studying following transition. This is the first study of its kind in the Australian population, and outcomes were superior to published international data. Despite the demonstrated good outcomes, transition programs may improve healthcare engagement in this cohort.     

Pediatric Transplant Rating Instrument – A scale for the pretransplant psychiatric evaluation of pediatric organ transplant recipients

Abstract:  Although the majority of pediatric solid organ transplant centers in the United States employ psychosocial criteria to assess the suitability of potential transplant candidates, there are no standardized pretransplant psychosocial assessment measures. Assessment scales that have been developed were designed for adult transplant recipients and are not suitable for use in the pediatric population. The P-TRI was developed to address this gap in the pediatric pretransplant psychosocial evaluation. It is intended to identify areas of psychosocial vulnerability that may be associated with poor treatment adherence and to facilitate the development of informed and focused psychosocial interventions for pediatric patients before and after transplant surgery. Items on the rating instrument were generated based on a review of the major correlates of treatment adherence in the pediatric population. Data are currently being collected for further reliability and validity analyses.     

Assessment of transition readiness skills and adherence in pediatric liver transplant recipients

Fredericks EM, Dore‐Stites D, Well A, Magee JC, Freed GL, Shieck V, Lopez MJ. Assessment of transition readiness skills and adherence in pediatric liver transplant recipients.
Pediatr Transplantation 2010: 14:944–953. © 2010 John Wiley & Sons A/S. Abstract: To examine transition readiness, adherence, and health outcomes in pediatric liver transplant recipients using a clinically administered screening measure. Seventy‐one pediatric liver transplant recipients (11–20 yr) and 58 parents completed a clinic‐based TRS measuring perceived and demonstrated self‐management skills, AoR for health‐related tasks, regimen knowledge, and psychosocial adjustment. Adherence was measured using s.d. of immunosuppressants, proportion of immunosuppressant blood levels out of target range, and clinic attendance. Health outcomes included liver test panels, biopsies, rejection episodes, and hospitalizations. Results indicate that all domains of transition readiness, with the exception of demonstrated skills, and non‐adherence were positively correlated with age. Proportion of immunosuppressant blood levels below target range was positively correlated with self‐management skills and increased responsibility for medication tasks. Parent regimen knowledge was associated with clinic attendance. Health outcomes were significantly related to medication non‐adherence, but not to transition readiness domains. Medication adherence is considered to be a key factor in the transition from pediatric to adult‐centered transplant care. Non‐adherence is associated with an increased risk for medical complications and is potentially modifiable. Interventions to promote self‐management skills and adherence should be an essential component of transition planning.     

Pediatric Transplant Rating Instrument - a scale for the pretransplant psychiatric evaluation of pediatric organ transplant recipients.

Although the majority of pediatric solid organ transplant centers in the United States employ psychosocial criteria to assess the suitability of potential transplant candidates, there are no standardized pretransplant psychosocial assessment measures. Assessment scales that have been developed were designed for adult transplant recipients and are not suitable for use in the pediatric population. The P-TRI was developed to address this gap in the pediatric pretransplant psychosocial evaluation. It is intended to identify areas of psychosocial vulnerability that may be associated with poor treatment adherence and to facilitate the development of informed and focused psychosocial interventions for pediatric patients before and after transplant surgery. Items on the rating instrument were generated based on a review of the major correlates of treatment adherence in the pediatric population. Data are currently being collected for further reliability and validity analyses.     

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.     

Preparing for transition: The effects of a structured transition program on adolescent heart transplant patients’ adherence and transplant knowledge

Transition to adult health care has become a mainstream focus in pediatric health care as a higher percentage of patients are surviving into adulthood. This study investigated the success of a structured educational transition program in improving pediatric heart transplant patients’ overall medical knowledge, medication adherence, readiness to transition, as well as parental perceptions of their child's readiness to transition to aid in the successful transition to an adult heart transplant program. Patients underwent a structured transition program over 2 years that included a total of seven 2‐hour educational sessions hosted quarterly. This study comprised of a retrospective review of 12 heart transplant patients between the ages of 16‐22 years . Test results indicated a statistically significant increase in overall medical knowledge scores from presession assessment compared to post‐session assessment. Participants remained confident in their ability to transition throughout the program. Further, a statistically significant decrease in participant non‐adherence was observed, as percentage of calcineurin inhibitor levels determined to be out of range decreased over the course of the program. Results suggest that a structured transition program is effective in improving overall patient medical knowledge in relation to their heart transplant and enhancing patient medication adherence. To effectively facilitate transition, pediatric providers, caregivers, and patients must communicate to provide a purposeful planned transition experience from pediatric to adult health care.     

Transition from hospital to home following pediatric solid organ transplant: Qualitative findings of parent experience

Transplant providers are challenged to determine appropriate interventions for patients and families due to limited published research regarding the context of the post‐discharge experience from the perspective of parents of transplanted children. The purpose of this study is to describe the parent perspective of the transition from hospital to home following their child's solid organ transplant. Within a mixed‐methods design, 37 parents of pediatric heart, kidney, and liver transplant recipients from three pediatric hospitals responded to qualitative interview questions on the day of hospital discharge and three wk following hospital discharge. Insight to the discharge preparation process revealed necessary education components. Post‐discharge themes were identified for coping, knowledge, and adherence. The parents' responses provide awareness as to specific stressors and concerns parents are faced with when their child is discharged from the hospital after solid organ transplant and opportunities for ways the transplant team can provide support.     

Promoting cardiovascular health post‐transplant through early diagnosis and adequate management of hypertension and dyslipidemia

Despite correction of underlying solid organ failure by transplantation, pediatric transplant recipients still have increased mortality rates compared to the general pediatric population, in part due to increased cardiovascular risk. In particular, pediatric kidney and non‐kidney transplant recipients with chronic kidney disease have significant cardiovascular risk that worsens with declining kidney function. Biomarkers associated with future cardiovascular risk such as casual and ambulatory hypertension, dyslipidemia, vascular stiffness and calcification, and left ventricular hypertrophy can be detected throughout the post‐transplant period and in patients with stable kidney function. Among these, hypertension and dyslipidemia are two potentially modifiable cardiovascular risk factors that are highly prevalent in kidney and non‐kidney pediatric transplant recipients. Standardized approaches to appropriate BP measurement and lipid monitoring are needed to detect and address these risk factors in a timely fashion. To achieve sustained improvement in cardiovascular health, clinicians should partner with patients and their caregivers to address these and other risk factors with a combined approach that integrates pharmacologic with non‐pharmacologic approaches. This review outlines the scope and impact of hypertension and dyslipidemia in pediatric transplant recipients, with a particular focus on pediatric kidney transplantation given the high burden of chronic kidney disease‐associated cardiovascular risk. We also review the current published guidelines for monitoring and managing abnormalities in blood pressure and lipids, highlighting the important role of therapeutic lifestyle changes in concert with antihypertensive and lipid‐lowering medications.     

The role of psychosocial and family factors in adherence to antiretroviral treatment in human immunodeficiency virus-infected children

BACKGROUND: The toxicity and complexity of antiretroviral therapy (ART) regimens are substantial challenges in the context of patients' lives. This study examines child psychosocial and caregiver/family factors influencing adherence to ART in perinatally human immunodeficiency virus (HIV)-infected children. METHODS: Seventy-five children (ages 3-13 years) prescribed ART, and their primary caregivers were recruited from 2 urban pediatric HIV programs. A battery of psychologic assessments and self-report adherence data were collected from all caregivers and 48 children who were > or =7 years old. RESULTS: Forty percent of caregivers and 56% of children reported missed doses of medication in the past month. Families in which the caregiver or child reported missed doses (nonadherent) were compared with families who reported no missed doses (adherent). In univariate analyses, nonadherence was significantly associated with older child age (P < 0.05), worse parent-child communication (P < 0.017), higher caregiver stress (P < 0.002), lower caregiver quality of life (P < 0.003) and worse caregiver cognitive functioning (P = 0.033), and of borderline significance in its association with increased (1) child responsibility for medications (P < 0.07), (2) HIV disclosure to the child (P < 0.07) and (3) child stress (P < 0.08) In logistic regressions controlling for age, caregiver/family factors were the most strongly associated with nonadherence, including worse parent-child communication (P < 0.03), higher caregiver stress (P < 0.01), less disclosure to others (P < 0.05) and quality of life (P < 0.01). CONCLUSIONS: Our data suggest that efforts to improve children's adherence to complex antiretroviral regimens requires addressing developmental, psychosocial and family factors.     

Skin changes in pediatric transplant patients

The advent of organ transplantation identified a new group of diseases. Dermatologists are studying transplant-associated diseases along with the atypical behavior of already known dermatoses. Pediatric patients have been treated as an extension of adult population, but unique aspects of age required clarification. A prospective cohort was studied including patients from both genders up to 17 yr of age who were recipients of kidney, liver or BMT during 2003 in Porto Alegre, Brazil. Regular skin examinations were performed up to the sixth month after the procedure, and an analysis was determined by ID (i.e. = number of skin changes/number of patients-month x 100). Thirty-nine patients were examined: 20 were kidney transplant recipients; 11 were BMT recipients (10 autologous transplants and 1 allogeneic transplant); and 8 were liver transplant recipients. Skin changes result primarily from the use of medication (87.2). Individually, kidney transplant patients presented the highest ID of skin changes because of medications (104.1). BMT recipients presented the highest ID of alterations occurring on skin appendages (85.4) and liver transplant recipients had the highest ID of vascular changes (94.9). In conclusion, this study shows that cutaneous alterations in pediatric transplant recipients present some particularities not described in adult recipients, such as ichthyosiform xerosis in renal recipients and skin scaling with pellagroid appearance in bone marrow recipients. Also, dermatoses secondary to medication use were the main finding in pediatric population.     

Psychological functioning and psychosocial issues in pediatric kidney transplant recipients

Research demonstrates that psychological factors are important for positive transplant outcomes, though there is little literature that synthesizes these factors in a comprehensive model among pediatric kidney transplant patients. This review analyzes psychological and psychosocial factors related to medical outcomes and overall well‐being post‐transplant by utilizing the PPPHM and referencing the existing literature on risk and resilience. Pediatric kidney transplant recipients are more susceptible to mental health concerns such as depression, anxiety, and ADHD, as well as developmental and neurocognitive delays, compared to healthy peers. Complex medical care and psychosocial needs for patients have implications for family functioning, parental and sibling mental health, and youth readiness to transition to adult care. It is important to carefully monitor patient functioning with empirically validated tools and to intervene in a multidisciplinary setting as early as possible to identify patients at risk and reduce potential negative impact. Psychologists are uniquely trained to assess and address these issues and are a valuable component of multidisciplinary, culturally competent care. While research in this expansive field is improving, more data are needed to establish gold standard approaches to mental health and psychosocial care in this population.     

Parent and patient perspectives on barriers to medication adherence in adolescent transplant recipients

Abstract:  The aim of this study was to identify barriers to medication adherence in adolescent transplant recipients. Eighty adolescent transplant recipient families reported in an open-ended manner about barriers to medication adherence. These responses were then coded to reflect potentially important themes associated with medication adherence. The themes derived included: forgot/distracted, poor planning/scheduling issues, physical barriers/medication issues, and voluntary resistance/attempts to be normal. Inter-rater reliability for barrier coding was very high ( k  = 0.91). Patients who were classified as non-adherent reported significantly more overall barriers, more forgot/distracted barriers, and more voluntary resistance/attempts to be normal barriers than those classified as adherent. Non-adherence was also found to be more likely when adolescents, as opposed to parents, were responsible for administering the medication. Further, non-adherence was more likely when taking morning rather than evening doses. These findings are explained with an emphasis on potential remedies that directly address the stated barriers.     

Current status of heart transplantation in children: update 2003

Heart transplant is an effective therapy for children with end-stage heart disease. Success of this treatment depends on coordination and careful communication among the family, primary care physician, and transplant team. Primary care physicians play an essential role in the monitoring and management of the medical, nutritional, developmental, and psychosocial issues of pediatric heart transplant patients and their families (Box 3). Ongoing assessment of the child and parent's progress in adapting to transplant is crucial in order for appropriate referrals to occur. Relationships with the primary care team can improve medical outcomes for this complex group of patients and provide a framework for improved adherence to care.     

Adherence and medical outcomes in pediatric liver transplant recipients who transition to adult services

Non-adherence to medications is associated with poor medical outcomes in adolescent transplant recipients. It is unclear whether non-adherence is further compromised when transplant recipients transition to the adult health care system. The purpose of the present study was to examine whether adherence changes during transition. We reviewed the medical records of 14 recently transitioned patients and compared their adherence and corresponding medical outcomes before and after transition. These outcomes were also compared with two cohorts of patients receiving care solely in pediatric or adult services. Medication adherence, measured through the use of standard deviations of tacrolimus blood levels, was examined for all patients. We found that adherence to tacrolimus significantly decreased after transition. After transitioning, patients furthermore exhibited poorer adherence than patients in the other two cohorts did over time. This small retrospective study suggests that the period of transition from pediatric to adult transplant clinics is a vulnerable one. Larger, prospective investigations of the transition process are necessary before recommendations are made regarding interventions.     

Donation after cardiac death kidneys are suitable for pediatric recipients

Despite the high number of children listed for kidney transplantation and shortage of deceased organ donors, there is reluctance to utilize DCD kidneys in pediatric recipients. We examined outcomes in pediatric kidney transplant patients who received a DCD kidney allograft. UNOS database was queried to examine outcomes in all pediatric kidney transplant recipients from 1994 to 2017. Pediatric status was defined as <18 years at the time of transplantation. Recipients were divided by DBD or DCD allograft status. Donor and recipient demographic data were examined. Patient and allograft survival was calculated, and Kaplan‐Meier survival curves were generated. A P‐value of <0.05 was considered to be significant. A total of 286 pediatric kidney transplant recipients received a DCD allograft. The donors in the DCD group were significantly younger than those in the DBD group (21.7 vs 23.3 years), with a higher KDPI (26.5% vs 22.9%). In the DCD group, the average age at transplant was younger (11.6 vs 12.9 years), with no difference in cold ischemia time or length of stay between the two groups. Rates of delayed graft function were higher in the DCD group, but despite this, there were no significant differences in allograft or patient survival between the groups. There is no difference in allograft survival in pediatric kidney transplant recipients who receive a DCD kidney allograft. DCD kidney allografts are suitable for transplantation in pediatric patients and can greatly expand the donor pool.