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.     

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.     

Pediatric solid organ transplant recipients: Transition to home and chronic illness care

Pediatric SOT recipients are medically fragile and present with complex care issues requiring high‐level management at home. Parents of hospitalized children have reported inadequate preparation for discharge, resulting in problems transitioning from hospital to home and independently self‐managing their child's complex care needs. The aim of this study was to investigate factors associated with the transition from hospital to home and chronic illness care for parents of heart, kidney, liver, lung, or multivisceral recipients. Fifty‐one parents from five pediatric transplant centers completed questionnaires on the day of hospital discharge and telephone interviews at three wk, three months, and six months following discharge from the hospital. Care coordination (p = 0.02) and quality of discharge teaching (p < 0.01) was significantly associated with parent readiness for discharge. Readiness for hospital discharge was subsequently significantly associated with post‐discharge coping difficulty (p = 0.02) at three wk, adherence with medication administration (p = 0.03) at three months, and post‐discharge coping difficulty (p = 0.04) and family management (p = 0.02) at six months post‐discharge. The results underscore the important aspect of education and care coordination in preparing patients and families to successfully self‐manage after hospital discharge. Assessing parental readiness for hospital discharge is another critical component for identifying risk of difficulties in managing post‐discharge care.     

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 15‐20.5 years, 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.     

Assessing allocation of responsibility for health management in pediatric liver transplant recipients

Given the increased risk for non‐adherence and poor health outcomes in late adolescence, there is a need for better methods to evaluate and improve the transition process as adolescent patients are prepared to be independent adults. This study assessed the psychometrics and concurrent validity of a newly developed measure of AoR for health management in pediatric liver transplant patients. A total of 48 patients and 37 parents completed a 13‐item measure of AoR. We performed an exploratory PCA on survey results and used component scores to assess the relationship between AoR and age, age at transplant, adherence, and health outcomes. Two primary components were identified: communication with the healthcare system and self‐management tasks. Parent perception of adolescent responsibility for tasks related to communicating with the healthcare system was correlated, in younger patients, with increased non‐adherence while responsibility for tasks related to self‐management was correlated, in older patients, with decreased non‐adherence. These results support AoR as a two‐domain construct, and they provide targets for monitoring and intervention as adolescent patients advance toward transfer.     

Physical activity experiences in children post–liver transplant: Developing a foundation for rehabilitation interventions

Physical Activity (PA) plays an important role in the physical and psychosocial health of children and is beneficial in the treatment and prevention of comorbidities associated with transplantation. Despite this, PA participation in pediatric liver transplant recipients remains low compared to healthy peers. This qualitative‐focused mixed‐methods study explored the PA experiences and parental perception of these experiences, including perceived facilitators and barriers to PA in children post–liver transplant. Eighteen participants (9 children [median age 10.8 years] and 9 parents) took part in semi‐structured interviews and completed the PedsQL Multidimensional Fatigue Scale and PAQ. Most children reported they were physically active (PAQ median 3.08 [IQR] 2.60‐3.51), participating in PA for its enjoyment, regardless of their level of motor proficiency. Levels of fatigue (median 65.28 [IQR] 56.25‐90.97) were higher than healthy norms and impacted PA participation in some children. Children and parents perceived PA as central to post‐transplant recovery and valued its social and mental health benefits; however, parents struggled with ongoing uncertainty and perceived physical vulnerability of their child. This study indicates the need for continuing PA support and education and provides valuable information for family‐centered interventions to increase PA and improve health outcomes in children post‐transplant.     

Using an interactive water bottle to target fluid adherence in pediatric kidney transplant recipients: A pilot study

Hydration is important post‐renal transplant to maintain adequate renal perfusion and graft function. Adherence to fluid recommendations is challenging given barriers to staying hydrated. There are no studies of adherence to fluid intake recommendations following pediatric renal transplant. Through this pilot study, we sought to determine whether the use of a commercially available interactive water bottle would lead to better adherence to recommended fluid intake and improved kidney functioning post‐transplant relative to standard of care. Participants included 32 youth ages 7–19 ≥1 month post‐kidney transplant randomized to the intervention (HydraCoach^® water bottle) or standard education control group. Laboratory records were reviewed for serum chemistries (Na, BUN, creatinine) at baseline and one‐month follow‐up, and participants recorded daily fluid intake for 28 days. Those in the intervention group were significantly more likely to meet or exceed their fluid target, but this did not translate into better kidney functioning. Participants in the intervention group largely reported satisfaction with the water bottle and were likely to continue its use. While an interactive water bottle providing real‐time feedback may be a promising intervention to help pediatric kidney transplant patients meet fluid goals, it did not appear to impact kidney function.     

Parental functioning improves the developmental quotient of pediatric liver transplant recipients

Psychomotor development in pediatric liver transplant (LT) recipients depends on several factors. Our aim was to evaluate the importance of parental involvement and family dynamics on psychomotor development by assessing (i) children and parents individually, (ii) the parent–child relationship, and (iii) the correlation between parental functioning and patient outcome, all before and after LT. Age‐appropriate scales were used before and after LT. Twenty‐one patients, 19 mothers, and 16 fathers were evaluated. Developmental quotient (DQ): No subjects scored in the “very good” range. The proportion of children with deficits increased from LT to two yr: 17.6% vs. 28.6%. Subjects 0–2 yr were more likely to have normal DQ at transplant (66.7% vs. 50% for older children). Abnormal DQ was more prevalent two yr post‐LT in children older at LT (p = 0.02). The mother–child relationship was normal in 59% of families pre‐LT and in 67% at two yr. The relationship was more favorable when the child received a transplant as an infant (p = 0.014 at 12 months post‐LT). Normal DQ was associated with higher maternal global functioning score pre‐LT (p = 0.03). Paternal performance scores were higher than maternal scores. Children transplanted after two yr of age suffer greater long‐term deficits than those transplanted as infants.     

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.     

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.     

Assessing barriers to adherence in routine clinical care for pediatric kidney transplant patients

Patient‐identified barriers to immunosuppressive medications are associated with poor adherence and negative clinical outcomes in transplant patients. Assessment of adherence barriers is not part of routine post‐transplant care, and studies regarding implementing such a process in a reliable way are lacking. Using the Model for Improvement and PDSA cycles, we implemented a system to identify adherence barriers, including patient‐centered design of a barriers assessment tool, identification of eligible patients, clear roles for clinic staff, and creating a culture of non‐judgmental discussion around adherence. We performed time‐series analysis of our process measure. Secondary analyses examined the endorsement and concordance of adherence barriers between patient‐caregiver dyads. After three methods of testing, the most reliable delivery system was an EHR‐integrated tablet that alerted staff of patient eligibility for assessment. Barriers were endorsed by 35% of caregivers (n=85) and 43% of patients (n=60). The most frequently patient‐endorsed barriers were forgetting, poor taste, and side effects. Caregivers endorsed forgetting and side effects. Concordance between patient‐caregiver dyads was fair (k=0.299). Standardized adherence barriers assessment is feasible in the clinical care of pediatric kidney transplant patients. Features necessary for success included automation, redundant systems with designated staff to identify and mitigate failures, aligned reporting structures, and reliable measurement approaches. Future studies will examine whether barriers predict clinical outcomes (eg, organ rejection, graft loss).     

The effect of transfer to adult transplant care on kidney function and immunosuppressant drug level variability in pediatric kidney transplant recipients

Adolescent age at time of transplant has been recognized as a risk factor for renal allograft loss. Increased risk for graft failure may persist from adolescence to young adulthood. Transfer of care is hypothesized as a risk factor for non‐adherence and graft loss. We explored whether kidney allograft function declined at an accelerated rate after transfer of care to adult transplant centers and whether coefficient of variation of tacrolimus (CV TAC) trough levels predicted allograft loss. Single‐center, retrospective chart review was performed for pediatric kidney transplant recipients who received transplants between 1999 and 2011. Change in eGFR pre‐ and post‐transfer was performed via a linear mixed‐effects model. CV TAC was calculated in transplant recipients with TAC data pre‐ and post‐transfer. t test was performed to determine the difference between means of CV TAC in subjects with and without allograft loss following transfer of care. Of the 138 subjects who transferred to adult care, 47 subjects with data pre‐ and post‐transfer demonstrated a decrease in the rate of eGFR decline post‐transfer from 8.0 mL/min/1.73 m² per year to 2.1 mL/min/1.73 m² per year, an ~80% decrease in eGFR decline post‐transfer (P = 0.01). Twenty‐four subjects had CV TAC data pre‐ and post‐transfer of care. Pretransfer CV TAC for subjects with allograft loss post‐transfer was significantly higher than in subjects without allograft loss (49% vs 26%, P < 0.05). Transfer of care was not independently associated with acceleration in eGFR decline. CV TAC may aid in identifying patients at risk for allograft loss post‐transfer.     

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.     

Prospective comparison of parent and adolescent report of health‐related quality of life in adolescent solid organ transplant recipients

Devine KA, Reed‐Knight B, Simons LE, Mee LL, Blount RL. Prospective comparison of parent and adolescent report of health‐related quality of life in adolescent solid organ transplant recipients.
Pediatr Transplantation 2010: 14:1000–1006. © 2010 John Wiley & Sons A/S. Abstract: This 18‐month prospective investigation sought to examine changes in HRQOL over time for adolescent solid organ transplant recipients. Additionally, this study examined the relationship between adolescent and parent report of HRQOL and compared parent report of HRQOL to published normative data. Forty‐eight adolescent–parent dyads completed the CHQ, a measure of HRQOL, at two time periods. Parent and adolescent reports of HRQOL were stable over time. ICCs between parent and adolescent reports were significant and moderate across most domains of HRQOL, with the exception of family cohesion, physical functioning, and bodily pain. However, mean differences indicated that parents perceived significantly worse self‐esteem and general health perceptions compared to their adolescents. Compared to normative data, parents reported significantly lower HRQOL across several domains, including adolescents’ physical functioning and the emotional impact of their adolescent’s condition on themselves. However, parents also reported higher levels of family cohesion. Results indicate that assessment of HRQOL for transplant recipients should include multiple reporters and that HRQOL as reported by adolescents and parents is generally stable over time without intervention. Further research is needed to understand factors related to differential HRQOL outcomes.     

Health‐related quality of life,treatment adherence,symptom experience and depression in adolescent renal transplant patients

Dobbels F, Decorte A, Roskams A, Van Damme‐Lombaerts R. Health‐related quality of life, treatment adherence, symptom experience and depression in adolescent renal transplant patients.
Pediatr Transplantation 2010:14:216–223. © 2009 John Wiley & Sons A/S. Abstract: Few studies comprehensively assessed psychological and behavioral functioning in adolescent kidney transplant patients. The purpose of this cross‐sectional study was to evaluate depression, QOL, treatment adherence and presence of side effects from the perspective of the patient and his parents, and to compare scores with norm data. All patients (age 10–18 yr) and their parents completed the following instruments: KIDSCREEN‐27 (QOL), a treatment adherence interview, the MTSOSD‐59R (side effects) and the Beck Depression Inventory (depression). Twenty‐three of 26 patients and 22 parents agreed to participate (70% male; median age 15 yr). Adolescents rated their QOL as satisfactory, but parents reported significant problems on several QOL dimensions. Depressive symptoms occurred in 17.4%, and 75% were non‐adherent with their immunosuppressive drugs (confirmed by their parents) and show other problematic health behavior, including smoking, illicit drug use, dietary non‐adherence, and suboptimal exercise levels. The most frequently occurring side effects were increased appetite, fatigue and headache; the most distressing ones were hair loss or thinning of hair, warts on hands or feet, and sores in the mouth or on the lips. Our results underscore the need for regular screening and adequate treatment of the above‐mentioned aspects.     

Parents in transition: Experiences of parents of young people with a liver transplant transferring to adult services

Predictors of successful transition from pediatric to adult services include ability to self‐manage and engage with healthcare services. Parents have a key role in healthcare management throughout childhood and adolescence including encouraging development of self‐management skills in their children. Transition to adult services can be challenging for parents and young people, yet parents’ views regarding transition remain largely unexplored. Nine parents of pediatric liver transplant recipients (15.2–25.1 yr) participated in semistructured interviews. Interviews were analyzed using IPA. Analysis revealed three key themes: “emotional impact of transplantation,” “protection vs. independence,” and “ending relationships and changing roles.” Parents expressed the dichotomous nature of the desire to promote independence in their child while still maintaining control and protection, and discussed how changing roles and relationships were difficult to navigate. Parents are important facilitators of young people's development of self‐management skills for successful transfer to adult services. Parents should be supported to move from a “managerial” to a “supervisory” role during transition to help young people engage independently with the healthcare team. Findings support the development of interventions for parents to emphasize their role in transition and guide the transfer of self‐management skills from parent to young person.     

Usability testing of the Internet program: “Teens Taking Charge: Managing My Transplant Online”

Adolescents with SOT demonstrate high rates of medication non‐adherence and higher rates of graft loss compared to all other age groups. Self‐management interventions encompass information‐based material designed to achieve disease‐related learning and changes in the participant's knowledge and skill acquisition, while providing social support. These interventions have had some success in chronic disease populations by reducing symptoms and promoting self‐efficacy and empowerment. Using findings from a needs assessment, an Internet‐based self‐management program, Teens Taking Charge: Managing My Transplant Online, for youth with SOT was developed. This program contains information on transplant, self‐management and transition skills, and opportunities for peer support. The purpose of this study was to determine the usability and acceptability of the initial three modules (Medication and Vaccines; Diet after Transplant; and Living with a Transplant Organ) of the online program from the perspectives of youth with SOT. Participants were recruited from SOT clinics at a large pediatric tertiary care center in Canada. Three iterative cycles (seven patients per iteration) of usability testing took place to refine the Web site prototype. Study procedures involved participants finding items from a standardized list of features and talking aloud about issues they encountered, followed by a semi‐structured interview to generate feedback about what they liked and disliked about the program. All 21 patients (mean age = 14.9 yr) found the Web site content to be trustworthy, they liked the picture content, and they found the videos of peer experiences to be particularly helpful. Participants had some difficulties finding information within submodules and suggested a more simplistic design with easier navigation. This web‐based intervention is appealing to teenagers and may foster improved self‐management with their SOT. Nine additional teen and two parent modules are being developed, and the completed Web site will undergo usability testing. In the future, a randomized control trial will determine the feasibility and effectiveness of this online self‐management program on adherence, self‐efficacy, and transition skills.