Understanding the pathway between the transplant experience and health-related quality of life outcomes in adolescents

Abstract:  Developments in solid organ transplantation have resulted in improved survival for children with advanced kidney, liver, and heart disease; however, concerns have been raised regarding the quality of life of survivors. This study examined HRQOL in adolescent transplant recipients. We examined the influence of demographic, treatment regimen, and family factors on physical and mental health domains of HRQOL. The current single-center investigation involved 68 solid organ transplant recipients and their parents. All families participated in a structured interview to collect information on demographics, characteristics of the adolescents' disease and treatment regimen, family functioning, and HRQOL for parents and adolescents. Using hierarchical regression analyses, predictive models of physical functioning and mental health outcomes for adolescent transplant recipients were developed for parent-proxy and adolescent self-report. Perceived frequency of medication side-effects and family conflict significantly contributed to adolescent physical functioning and mental health outcomes. Taken together, transplant consequences and family environment significantly impact physical and mental health outcomes in adolescent transplant recipients. Our findings demonstrate the need for pharmacological considerations and psychological interventions to address these areas.     

Adherence and health-related quality of life in adolescent liver transplant recipients

Abstract:  Adolescence is a particularly high-risk period for non-adherence with post-transplant medical regimens. There remains a lack of research investigating factors related to non-adherence in adolescent LT recipients. The present study empirically assessed the relationship between adherence and HRQOL in adolescent LT recipients. Participants included 25 adolescents (mean = 15.1 yr, range 12–17.9) and their parent/guardian(s). Adherence was assessed using multiple indices including clinician-conducted interviews, rate of clinic attendance, and s.d. of consecutive tacrolimus blood levels. HRQOL was examined using self-report and parent-proxy report on well-validated assessment measures. Results indicated that 76% of participants were non-adherent on at least one measure of adherence, and HRQOL was significantly lower than normative data for healthy children. Tacrolimus s.d. were significant related to poor HRQOL across domains of physical, school, and social functioning. Non-adherent adolescents reported poorer health perceptions, self-esteem, mental health, family cohesion, and more limitations in social and school activities related to physical, emotional, and behavioral problems. These results suggest that empirically based assessment of HRQOL may help identify those at highest risk for behavior, emotional and school difficulties, as well as non-adherence. The examination of tacrolimus s.d. may also help identify patients who may benefit from intervention to promote adherence and HRQOL. Prospective investigations are necessary to further identify the impact of HRQOL on adherence and long-term health outcomes to further guide clinical intervention.     

Transition readiness,adolescent responsibility,and executive functioning among pediatric transplant recipients: Caregivers' perspectives

This study aimed both to evaluate caregivers' perspectives of EF and transition readiness among adolescent transplant recipients and to examine the indirect effects of adolescent responsibility and parent involvement across domains of EF. Fifty‐seven caregivers of adolescent solid organ transplant recipients participated in this study and completed measures of adolescent EF, transition readiness, responsibility in healthcare behavior, and parent involvement. Bootstrapping procedures were used to test indirect effects. Caregiver report of adolescent EF was significantly related to transition readiness among transplant recipients. Significant indirect effects were found for adolescent responsibility but not parent involvement. No significant differences were found between metacognitive and behavioral regulation domains of EF in the association with transition readiness. Assessment of adolescent EF skills may help guide the development of individualized transition readiness guidelines to promote successful gains in self‐management abilities as well as eventual transfer to adult medical services.     

Sleep quality is associated with psychosocial functioning and health‐related quality of life in pediatric transplant recipients

This study examined patient‐reported sleep quality in a single‐center cross‐sectional sample of adolescents with solid organ transplants and evaluated associations between sleep quality, psychosocial functioning (ie, depression/anxiety symptoms), and HRQOL. Health disparities associated with minority race/ethnicity and socioeconomic variables were also examined. Sixty‐nine adolescents (M = 16.51 years; SD = 1.63) who received a solid organ transplant (kidney: n = 25; liver: n = 24; heart: n = 20) completed self‐report measures of sleep quality, psychosocial functioning, and HRQOL. Adolescent transplant recipients endorsed significantly lower levels of sleep quality (ie, falling asleep) compared with previously published norms of healthy peers (t = ?3.60; P ≤ .001). Higher sleep quality was significantly associated with fewer anxiety and depressive symptoms (r = ?.31 to ?.40), and higher physical and psychosocial HRQOL (r = .33‐.43). Adolescents from minority backgrounds had significantly worse sleep quality compared with non‐Hispanic Whites. Adolescent transplant recipients, particularly those from minority backgrounds, may be at increased risk for experiencing poor sleep quality. Suboptimal sleep is a risk factor for higher levels of anxiety and depressive symptoms, as well as lower levels of physical and psychosocial HRQOL. Sleep is an important modifiable factor that, if improved, may contribute to lower anxiety/depressive symptoms and better HRQOL in adolescent transplant recipients.     

Health-related quality of life in pediatric liver transplant recipients compared with other chronic disease groups

Limbers CA, Neighbors K, Martz K, Bucuvalas JC, Webb T, Varni JW, Alonso EM, on behalf of the Studies of Pediatric Liver Transplantation (SPLIT) Functional Outcomes Group (FOG). Health‐related quality of life in pediatric liver transplant recipients compared with other chronic disease groups.
Pediatr Transplantation 2011: 15: 245–253. © 2010 John Wiley & Sons A/S. Abstract: This cross‐sectional, multicenter cohort study compares the level of HRQOL of pediatric LT recipients to children with other chronic health conditions. LT sample included 873 children who survived at least 12 months following LT. Six chronic disease samples were compiled from numerous studies, including over 800 patients with JRA, type 1 diabetes, cancer in remission, cardiac disease, end‐stage renal disease, and inflammatory bowel disease. Generic HRQOL was measured from both the parental and patient perspective using the PedsQL? 4.0 Generic Core Scales. Pediatric LT patients reported better physical health than children with JRA. According to parents, pediatric LT recipients had better HRQOL than children on renal dialysis on all domains except school functioning. Across all domains but emotional functioning, pediatric LT recipients reported significantly lower HRQOL than children with type 1 diabetes. Overall, pediatric LT patients reported HRQOL comparable to that of children who had undergone renal transplantation and patients with cancer in remission. Pediatric LT patients manifested impaired HRQOL similar to that of children with chronic diseases and these data suggest that they face ongoing challenges that warrant monitoring and indicate a need for interventions to improve their HRQOL.     

Longitudinal stability of medication adherence among adolescent solid organ transplant recipients

Solid organ transplantation requires ongoing adherence to immunosuppressants and other medications. Although adolescence is a risk factor for poor medication‐taking, little is known about the patterns of adherence within individuals over time. This study aimed to examine the stability of adherence over time using three different assessment techniques. Sixty‐six AYA transplant recipients and/or their caregiver completed interviews of adherence at baseline and at least one yr later. Serum immunosuppressant assay levels were collected via medical chart review. Non‐adherence percentages based on AYA report, caregiver report, and bioassay did not differ from Time 1 to Time 2. However, correlations for these measures across time were non‐significant. Further, the majority of AYAs shifted to a different adherence category from Time 1 to Time 2. Overall, these results demonstrate individual variability in non‐adherence over the course of adolescence and young adulthood and highlight the importance of frequent assessment across time for solid organ transplant recipients.     

Psychosocial functioning of pediatric renal and liver transplant recipients

Abstract:  The current study examined child- and parent-reported child psychosocial functioning in a large sample of children who received solid organ transplantation. Participants included 64 children who received kidney or liver transplantation and 64 parents who completed a standardized measure of children's psychosocial functioning (BASC; Reynolds & Kamphaus, 1992). Although post-transplant children reported significantly fewer psychosocial difficulties than the normative average, parents reported that children had some psychosocial difficulties, particularly internalizing problems. There were no differences in psychosocial functioning between deceased donor organ and living donor organ recipients. Given the discrepancy between parent and child report, the results suggest that children may underreport psychosocial difficulties following transplantation or parents may over-report children's difficulties. Clinicians and researchers are encouraged to obtain assessment information from multiple reporters when assessing psychosocial functioning in this population.     

Perceived barriers to adherence among adolescent renal transplant candidates

Non-adherence to medical regimens is a ubiquitous hindrance to quality health care among adolescent transplant recipients. Identification of potentially modifiable barriers to adherence when patients are listed for organ transplant would help with early intervention efforts to prepare adolescents for the stringent medication regimen post-transplant. Fifty-six adolescents listed for a kidney transplant, mean age 14.27 (s.d. = 2.2; range 11-18 yr), 73.2% male, 62.5% Caucasian participated in a semi-structured interview, the Medical Adherence Measure, to assesses the patient's knowledge of the prescribed regimen, reported adherence (missed and late doses), the system used to organized medications, and who holds the primary responsibility over medication management. Better knowledge of the medication regimen was associated with fewer missed doses (r = -0.48, p < 0.001). Patients who perceived more barriers had more missed (r = 0.38, p = 0.004) and late (r = 0.47, p < 0.001) doses. Patients who endorsed "just forget," the most common barrier (56.4%), reported significantly more missed (z = -4.25, p < 0.001) and late (z = -2.2, p = 0.02) doses. Only one-third of the transplant candidates used a pillbox to organize medications but these patients had significantly better adherence, z = -2.2, p = 0.03. With regard to responsibility over managing the regimens, adolescents missed fewer doses when their parents were in charge than when they were solely responsible, z = -2.1, p = 0.04. Interventions developed to prepare transplant candidates for a stringent post-transplant regimen need to focus on ensuring accurate knowledge of as simple a regimen as possible. Use of an organized system such as a pillbox to establish a routine and facilitate tracking of medications is recommended with integration of reminders that may be appealing for this age group. Although individuation is developmentally normative at this age, parent involvement seems critical until the adolescent is able to manage the responsibility more independently.     

Developmental and reproductive health issues in adolescent solid organ transplant recipients

The improved survival of pediatric recipients of solid organ transplants has prompted increased attention to quality of life issues. In adolescents these include attainment of normal growth and development, and involvement in romantic and sexual relationships. This review focuses on the reproductive health care needs of adolescent solid organ transplant recipients, including issues related to puberty, menstruation, and fertility. Contraceptive options, and the implications of their use by transplant recipients, are described. With close clinical follow up, most currently available hormonal contraceptive methods can be considered, and the impact of drug interactions with immunosuppressants can be minimized by eliminating hormone-free intervals. Monitoring for sexually transmitted infections, including oncogenic Human Papilloma Virus and its sequelae, is especially important for transplant recipients. Comprehensive reproductive health care visits are recommended for all sexually active adolescent solid organ transplant recipients.     

Psychosocial responses of adolescent cystic fibrosis patients to lung transplantation

Abstract: What psychosocial issues do adolescent cystic fibrosis (CF) patients experience after undergoing lung transplantation (Tx)? The aim of this study was to determine, using an ethnographic study design, the common themes and emotional responses in post‐lung transplant adolescent CF patients of the Cardiothoracic Transplant Clinic at the Childrens Hospital Los Angeles. Nineteen CF lung transplant recipients were studied (eight males, 11 females: mean age at time of transplant, 15.7 ± 2.7 yr). The mean time interval from Tx to interview was 25.4 months (range 1–58 months). Sixteen patients had living donor lobar lung Tx while three patients received cadaveric lungs. A series of 25 questions was used to assess the psychosocial impact of Tx, and a semi‐structured interview focused on the following five domains: lifestyle, family functioning, social functioning, body image, and psychological functioning. The major themes identified by patients included: a strong desire to set and attain meaningful long‐range goals, the need to control as many aspects of their lives as possible while dealing with parental over‐protectiveness, and the adjustment to a new lifestyle. Common emotional responses included manageable fear/anxiety of lung rejection and uncertainty of the future, impatience with disruptions of daily routines caused by post‐transplant medical management and its effect on the attainment of set goals, and frustration with parental over‐protectiveness. In general, patients reported a positive outlook on life, with greater emphasis on sought‐after goals as well as inter‐personal relationships. This study demonstrates that adolescent CF transplant recipients develop long‐term goals and plans for independence. By identifying and anticipating the emotional needs of this population, health care providers can assist patients in improving the quality of their lives from a physiological, as well as a psychological, viewpoint.     

Problem‐solving skills,parent–adolescent communication,dyadic functioning,and distress among adolescents with cancer

Some adolescents with cancer report distress and unmet needs. Guided by the disability‐stress‐coping model, we evaluated associations among problem‐solving skills, parent–adolescent cancer‐related communication, parent–adolescent dyadic functioning, and distress in adolescents with cancer. Thirty‐nine adolescent–parent dyads completed measures of these constructs. Adolescents were 14–20 years old on treatment or within 1 year of completing treatment. Better problem‐solving skills were correlated with lower adolescent distress (r = ?0.70, P < 0.001). Adolescent‐reported cancer‐related communication problems and dyadic functioning were not significantly related to adolescent distress (rs < 0.18). Future work should examine use of problem‐solving interventions to decrease distress for adolescents with cancer.     

Becoming unique: A qualitative study of identity development of adolescent kidney recipients

Teenagers who receive a renal organ transplant have to take up the double challenge of identity development, the primary task of adolescence, and of overcoming the complexities of their illness. Previous qualitative studies found that adolescents felt that the organ transplant and its treatments mainly defined who they are. The relationship to the donor can be a source of concern for some of them, especially for those who received from a parent and feel an obligation to be obedient and grateful. While donor parents are known to interpret their gesture as giving life for a second time, no research to date has described how this particular gesture may influence adolescent development. The present article aims to examine and describe identity development of teenage kidney recipients in a context of parental or deceased donation. We used a qualitative design involving individual interviews with 10 adolescents. Five of them received from a donor parent, five from a deceased donor. Data were analyzed using IPA. Results suggest that identity development is influenced by similar concerns for all adolescents regardless of donor source: body image, social relationships, and anxiety about the future. One aspect that stood out from the discourse of those who received from a parent was feelings of guilt towards the donor when engaging in behaviors that could comprise graft survival, which was a challenge for identity development. Receiving the transplant freed teens from the struggle of just managing their illness and was a catalyst for exploration and engagement, which are crucial for identity development.     

Development and field testing of Teen Pocket PATH®, a mobile health application to improve medication adherence in adolescent solid organ recipients

Applying principles of user‐centered design, we iteratively developed and tested the prototype of TPP, an mHealth application to promote medication adherence and enhance communication about medication management between adolescents and primary caregivers. A purposive sample of seven adolescent solid organ transplant recipients who were ≥one yr post‐transplant and their primary caregivers participated. Participants completed up to three face‐to‐face laboratory usability sessions, a 6‐week field test, and a debriefing session. Primary caregivers participated in an additional usability telephone session. Participants completed usability and satisfaction measures. Sample included liver (n = 4), heart (n = 2), and lung (n = 1) recipients aged 11–18 yr (57% were female, 86% were Caucasian), and nine primary caregivers aged 42–61 yr (88.9% were parents, 88% were female, 88% were Caucasian). Ninety percent of the adolescents endorsed the graphs or logs of missed/late medication dosing as useful and 100% endorsed the remaining features (e.g., medication list, dose time reminders/warnings) as useful. All adolescents expressed interest in using TPP for monitoring medications and satisfaction with the automatic messaging between adolescent and caregiver versions of the application. Adolescents unanimously found TPP easy to use. TPP shows promise as an mHealth adherence tool.     

Disagreement between parent and adolescent reports of functional impairment

OBJECTIVE: Adolescents' functional impairment has become increasingly important as a criterion for diagnosis and service eligibility as well as a target of therapeutic intervention in mental health settings. This study examines three critical issues in measuring functioning: 1) agreement between parent and adolescent reports of functioning, 2) explanations for disagreement, and 3) clinicians' ratings of functioning compared with parent and adolescent reports. METHODS: Agreement between parent and adolescent reports of functioning was estimated using the kappa statistic and conditional agreement in a sample of 258 adolescents. Rates of and reasons for expected disagreements between informants were explored in semi-structured interviews (n = 43). ANOVA was calculated for clinician ratings for parent-adolescent pairs categorized on the basis of their agreement or disagreement on impairment. Finally, the independent contribution of parents' or adolescents' reports of impairment on clinician ratings of functioning was examined. RESULTS: From 12% to 97% of problems reported by one informant were denied by the other. Agreement was particularly poor for questions about relationships with friends, peers' delinquent behaviors, and leisure activities. On average, parents and adolescents were more likely to expect the other would agree with their ratings rather than disagree. Reasons for disagreement included: 1) differences in how parents and adolescents interpreted questions; 2) lack of parental awareness of adolescents' behaviors; and 3) different thresholds for what is considered problematic. Results also demonstrated that clinicians perceive problems reported only by parents as somewhat more serious than problems reported only by adolescents. CONCLUSIONS: Implications for diagnosis, treatment planning and outcomes measurement are discussed.     

Intellectual and academic performance in children undergoing solid organ pretransplant evaluation

Although prior research has shown lower intellectual functioning across pediatric solid organ transplant recipients relative to matched siblings or norm comparisons, few studies have assessed intellectual and academic performance prior to transplant across organ groups. The current data examine intellectual and academic functioning in children being evaluated for kidney, liver, or heart transplant. This investigation included intellectual and academic testing data from 195 children and adolescents between the ages of six and 19 yr evaluated for solid organ transplantation. Across organ groups, patients' intellectual functioning as estimated by the WASI/WASI‐II at the time of pretransplant evaluation was within the average range, but lower compared to test norms. Patients demonstrated lower estimates of word reading, math computation, and spelling skills compared to the normal population, with the exception of heart patients' word reading and spelling skills and liver patients' spelling scores. Cognitive and academic impairments exist in children prior to transplantation. Findings emphasize the support that patients may require to manage the complicated medical regimen and succeed academically. Routine cognitive and academic assessment can inform healthcare providers regarding transplant patients' capacity to take on increasing medical responsibility and successfully reintegrate into the school environment.     

Transition of pediatric liver transplant recipients to adult care: patient and parent perspectives

The need to prepare pediatric transplant recipients for the transfer to adult-centered transplant care has received increased attention. This study aimed to determine adolescent and young adult LTR and parent perceptions and attitudes about the transition process. LTR and their parents completed a survey assessing level of prior thought and interest in learning about transferring care, knowledge of the transition process, perceived importance of self-management skills, concerns about moving to the adult clinic, and responsibility for health management tasks. Responses were analyzed by age, gender, and time since transplantation. Participants included 46 LTR (mean age = 16.6 yr; range 12-21), and 31 parents. Recipients and parents reported moderate concern about transition, with leaving pediatric providers being a primary worry. LTR ≥16 yr reported greater health care responsibility and increased thought, interest, and knowledge about transition. There were significant differences between parent and LTR perceptions of health care responsibility, indicating that LTR perceive having more independence than what their parents report. Overall, results suggest that adolescent and young adult LTR and their parents perceive the importance of transitional care, but demonstrate poor knowledge of the process. There remains a need for improved transition planning for both adolescents and parents.     

A systematic review of parent and family functioning in pediatric solid organ transplant populations

The process of pediatric solid organ transplantation (SOT) places new and increased stressors on patients and family members. Measures of family functioning may predict psychological and health outcomes for pediatric patients and their families, and provide opportunity for targeted intervention. This systematic review investigated parent and family functioning and factors associated with poorer functioning in the pediatric SOT population. Thirty‐seven studies were identified and reviewed. Studies featured a range of organ populations (eg, heart, liver, kidney, lung, intestine) at various stages in the transplant process. Findings highlighted that parents of pediatric SOT populations commonly report increased stress and mental health symptoms, including posttraumatic stress disorder. Pediatric SOT is also associated with increased family stress and burden throughout the transplant process. Measures of parent and family functioning were associated with several important health‐related factors, such as medication adherence, readiness for discharge, and number of hospitalizations. Overall, findings suggest that family stress and burden persists post‐transplant, and parent and family functioning is associated with health‐related factors in SOT, highlighting family‐level functioning as an important target for future intervention.     

Trends in adolescent emotional problems in England: a comparison of two national cohorts twenty years apart

Background: Evidence about trends in adolescent emotional problems (depression and anxiety) is inconclusive, because few studies have used comparable measures and samples at different points in time. We compared rates of adolescent emotional problems in two nationally representative English samples of youth 20 years apart using identical symptom screens in each survey. Methods: Nationally representative community samples of 16–17‐year‐olds living in England in 1986 and 2006 were compared. In 1986, 4524 adolescents and 7120 parents of young people participated in the age‐16‐year follow‐up of the 1970 British Cohort Study. In 2006, 719 adolescents and 734 parents participated in a follow‐up of children sampled from the 2002/2003 Health Surveys for England. Adolescents completed the Malaise Inventory and 12‐item General Health Questionnaire. Parents completed the Rutter‐A scale. Individual symptoms of depression and anxiety were coded combining across relevant questionnaire items. Young people also reported frequency of feeling anxious or depressed. Results: Youth‐ and parent‐reported emotional problems were more prevalent in 2006 for girls, and rates of parent‐reported problems increased for boys. Twice as many young people reported frequent feelings of depression or anxiety in 2006 as in 1986. Some symptoms showed marked change in prevalence over time (e.g., worry, irritability, fatigue), whereas others showed no change (e.g., loss of enjoyment, worthlessness). There was no evidence of differential trends in emotional problems for young people from socially advantaged and disadvantaged or intact and non‐intact families. Changes in family structure and ethnic composition did not account for trends in youth emotional problems. Conclusions: The study provides evidence for a substantial increase in adolescent emotional problems in England over recent decades, especially among girls.