Abstract
Introduction and Purpose. Given the importance of a successful transition to adult care for pediatric transplant recipients, there is a critical need to better understand modifiable factors which may affect that process. This study assessed the knowledge of adolescent liver transplant recipients about their disease and evaluated if a disease-specific educational intervention could increase their knowledge and impact clinical outcome. Methods. A four-category measure was created to assess the knowledge regarding diagnosis, surgical history, lab values, and medications in adolescent liver transplant patients. Teens were randomized to receive one-on-one, verbally administered education from a medical provider versus standard care (control). Results. Fifty-six liver transplant recipients completed the measure, with 24 completing a posttest. The median age at transplant was 6.9 years and at pre-test was 17.8 years. Thirty-eight percent did not know their original diagnosis at pretest. The average pretest total score was 43%. Teens who received the intervention had an average posttest score of 61% versus 42.4% for controls (). Teens who scored ≥50% at pretest had 2.0 rejection episodes per patient while those had 0.95 rejection episodes per patient (). Conclusions. Adolescent liver transplant recipients have low baseline knowledge about their condition. Tailored outpatient education is effective at improving knowledge, but this did not translate to improved outcomes. The role of oppositional behaviors, parental supervision, and other high-risk activities on clinical outcomes needs to be determined by further studies. These data suggest that teen liver transplant recipients require more supervision than their level of knowledge implies.
1. Introduction
Approximately 750,000 children with special healthcare needs transfer to adult care annually. With 10-year survival rates now greater than 90%, an increasing number of adolescents or young adults who received a liver transplant as a child will be among them [1, 2]. As a result, there is a need for improved transition from pediatric to adult care and a focus on adherence to treatments in order to ensure the best outcomes following transfer to adult-based care. Nonadherence to recommended transplant care has been shown to be associated with increased complications including hospitalization, rejection, and death [3–6].
Adolescence is a unique developmental phase making the transition in care more challenging, and transition should not occur until adolescents have the necessary skills for functioning effectively in the adult healthcare system [7]. Adolescents experience a transition from concrete to abstract thinking and development of executive function [8] and simultaneously develop reliance on self rather than parents [9]. As patients prepare to make the transition to an adult provider, it is clear that key aspects of transition of care include knowledge of medications, independent responsibility of medications, and adherence [10]. Additionally, the development of self-management skills is crucial in mediating the psychological and social impacts of transplant on a patient’s life [11].
As part of the adolescent liver transplant transition clinic at Children’s Healthcare of Atlanta, the multidisciplinary team of transplant hepatologist, behavioral psychologist, social worker, nutritionist, and nurse practitioner helps prepare adolescent liver transplant recipients for transfer to an adult provider. Our clinic supports transition preparedness from a medical and psychosocial standpoint given that it is critical in successful transition of care [12]. These patients typically range from 14 to 21 years of age. Prior studies show that a patient’s understanding of disease and medications can improve patient clinical outcomes [13, 14]. Our clinicians noted variability in knowledge among our patients; thus, our clinic designed a quality intervention that focused on improving patient outcomes by providing basic education at teen clinic visits.
Seventy-five patients were approached to be enrolled in a program called “I Own It,” a comprehensive transition-focused program. The aims of Adolescent Program, I Own It (AP101) were to improve the quality of care of adolescent liver transplant recipients by assessing adolescent baseline knowledge of liver disease through a specific questionnaire, by determining the relationship between baseline knowledge and rejection episodes, and by evaluating if a formal educational intervention can increase knowledge.
2. Methods
This study was a single-center, prospective intervention study of adolescent liver transplant patients. Enrollment began in 2016 and ended in 2018. The study was approved by the Emory Institutional Review Board.
2.1. Participants
Participants in this study included adolescents ages 14-21 who had undergone liver transplant and came to the AP101 clinic which was a special clinic attended by all years of age for routine follow-up care.
2.2. Study Procedures
All patients were provided a knowledge assessment measure which they completed during a routine clinic appointment. The disease-specific questionnaire included questions regarding primary diagnosis, surgical history, pertinent labs, and current medications. Parents were asked to allow patients to independently complete the questionnaire as parents do accompany the patient frequently to the clinic. These were scored with a maximum of 23 points. The details of the questionnaire are in Figure 1. The scoring method is provided in the supplemental data (available here).
Adolescents were randomly assigned either a standardized 5-minute, one-on-one, verbal educational intervention or standard of care. The standardized intervention focused on questions answered incorrectly by the patient and additional relevant information as detailed in Figure 2. Details regarding lab values, medications, surgery, and importance of adherence were written in simple language. These items were discussed in person, and the patient was provided a handout with the same information to be kept at home with them as well. The intervention was administered verbally by 2 MDs attending this clinic. All patient and parent questions were answered subsequent to the educational intervention in the intervention group for approximately 5 to 10 minutes. In our clinic, the standard of care was defined as nonstandardized provider responses to individual patient questions.
The same measure was administered again at a subsequent clinic visit to allow for pre- and posttest analyses. Scores were calculated by giving one point for items 3, 7, and 8 and 2 points for 4, 5, and 6. Items 1 and 2 were not scored. Responses that were turned in blank or incorrect were scored as zero. Data was analyzed using Student’s -test, and results were statistically significant with a .
Inclusion criteria included adolescents enrolled in the AP101 clinic. The primary outcome was a change in disease-specific knowledge between pre- and posttest. Secondary outcome included the association of pretest scores with clinical outcomes. Exclusion criteria included anyone who did not speak English, had severe cognitive delays, or was in the process of being transferred to adult healthcare during the timeframe of the study.
3. Results
At the time of the study, there were 75 patients in the adolescent clinic. A total of 60 patients were initially enrolled, with 56 patients completing the pretest survey with a median age of 17.8 years (±2 years). Of these, 23 patients were in the standard of care arm and 33 were in the intervention arm. Five patients in the standard of care arm completed a posttest survey and 19 in the intervention arm (Figure 3).
The median age for all participants at transplant was years. Of the 56 participants, 34% (19) were male. The majority of patients in this study had biliary atresia, acute liver failure, autoimmune hepatitis, and Alagille’s syndrome that required liver transplant. Fifty-nine percent of patients were white, 34% black, and 3.5% Hispanic, with the remainder being Asian or other. The majority of these patients had Medicaid (37.5%) or private insurance (48%). The median ALT at baseline knowledge questionnaire was 30, the median GGT was 26, and the number of episodes of rejection at baseline was 1.35 rejection episodes per patient overall (Table 1). These patients received the baseline knowledge questionnaire (BKQ) (Figure 1).
Of the 56 adolescents enrolled, 21 (38%) of them did not know their primary diagnosis for which they had received the liver transplant (Figure 4(a)). Less than a quarter of patients had a BKQ medication knowledge score of greater than 50%, and there was no significant difference between genders with respect to medication knowledge (Figure 4(b)).
(a)
(b)
Interestingly, those with lower pretest scores initially had only 0.95 rejection episodes per person, whereas those who scored higher than 50% on the BKQ had 2.0 rejection episodes per patient (). Those who scored lower on their pretest also had a lower average ALT and GGT (Figure 5). Each intervention group participant was then provided a teaching sheet with information regarding their individual transplant, medications, and labs (Figure 2).
When comparing pre- and posttest scores in the intervention and standard of care groups, the intervention group had a significant increase in disease and lab knowledge by 18.6% () (Figure 6(a)). The most significant improvement was seen in the area of medication knowledge (35%), as seen in Figure 6(b) (). A large number of patients were able to provide the names and dosages of medications.
(a)
(b)
Of the 24 patients with posttests completed, 18 of 24 scored greater than 50%. Those with higher scores had ALT 53.4 and GGT 58.5 and 2.05 episodes of rejection per patient, versus average ALT 117, GGT 103, and only 1.33 rejection episodes per patient (Figure 7).
4. Discussion
This study is aimed at assessing the primary diagnosis/indication for transplant and medication regimen knowledge for adolescents who had received a liver transplant and at evaluating the impact of tailored educational intervention and its impact on clinical outcomes. When comparing pre-posttest scores, the intervention group increased their disease knowledge by 18% versus the group receiving standard of care, who increased their overall disease knowledge by only 8%. When looking at medication knowledge alone, the intervention group increased their knowledge by 35%, while the standard of care group demonstrated no change in their medication knowledge, which again indicated the efficacy of this educational intervention. Previous studies demonstrate similar benefit of education in this age group on liver transplant patients in the adult age range [15]; however, no study, to our knowledge, has demonstrated the benefit of educational intervention in adolescent patients on disease knowledge.
Those with higher pretest scores also had higher liver enzyme levels and more rejection episodes. This may be partly explained by the more frequent exposure of sick patients to medical personnel, which might lead to a higher baseline pretest score. If patients were to have higher severity of disease, more complications such as rejection, and resultant frequent admissions to the hospital or increased frequency of clinic visits, it is possible that these patients had a higher knowledge base than those who require fewer medical system interactions. These findings highlight that while knowledge of both medication regimen and underlying condition is important to assess readiness and independence with healthcare, tailored education may be necessary to support this endeavor. Tailored education would involve addressing illness-related factors such as time since transplant, age at transplant, adolescent behaviors, family composition, general avoidance of the medical system, and prioritization of social life that could interfere with adherence.
Medication adherence has previously been shown to have a relationship with health literacy [16]. This study indicates that health literacy alone is inadequate to ensure good adherence. Given the fact that nonadherence can lead to poor health outcomes including increased frequency of rejection, morbidity, and mortality [17–19], it is crucial to provide quality education in the setting of a comprehensive transition program that also includes close monitoring for and addressing of nonadherence to most effectively prevent future rejection episodes.
Based on the data in this study, it is apparent that tailored educational intervention in a posttransplant adolescent group can be effective in improving patient knowledge. However, it is also evident that knowledge on its own is not sufficient to guarantee good clinical outcomes or to prevent rejection in this case, so condition-specific education should be given in the context of a rigorous multipart transition program. Such a program may be our most effective tool in improving morbidity and mortality in this at-risk population as adolescents work towards transition of care.
5. Conclusions
Adolescent liver transplant recipients have low baseline knowledge about their disease. It seems that adolescents with more episodes of rejection and higher lab numbers had higher baseline knowledge. This may be a result of repeated education during increased interactions with the healthcare system that results in a higher BKQ score. The strengths of this study include a simple intervention that is low-burden and highly scalable. Another strength is that this intervention was able to be completed without disrupting clinic flow. Limitations include a low posttest survey sample size in the standard of care arm though it is likely representative of the rest of the group. Importantly, the posttest survey sample in the intervention arm was robust. Finally, this study demonstrates that outpatient education is effective with greatest impact on improving medication knowledge, but education alone did not improve patient outcomes. This may be because medical literacy may not be enough to make positive health changes to increase adherence. Perhaps more extensive personalized counseling that is specific to each patient’s lifestyle is necessary to improve healthcare outcomes. Specific barriers such as transportation, ability to get to a pharmacy, lack of family structure or supervision of medications, and deference to parents regarding medical care may be barriers to address during this counseling that would improve healthcare outcomes by increasing medication adherence along with knowledge.
Abbreviations
| BKQ: | Baseline knowledge questionnaire |
| GGT: | Gamma glutamyl transferase |
| ALT: | Alanine aminotransferase. |
Data Availability
The data used to support the findings of this study are available from the corresponding author upon request.
Additional Points
Key Messages. (i) Provision of education to adolescent transplant recipients is critical in improving medication knowledge. (ii) Educational interventions can be successfully completed within typical clinic flow.
Conflicts of Interest
The authors declare that they have no conflicts of interest.
Supplementary Materials
Authors have included scoring system details for the baseline knowledge questionnaire. (Supplementary Materials)