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

Fredericks, Emily M.; Dore-Stites, Dawn; López, Mariana; Well, Andrew; Shieck, Victoria; Freed, Gary L.; Eder, Sally J.; Magee, John C.

doi:10.1111/j.1399-3046.2011.01499.x

Cited by 54 publications

(56 citation statements)

References 37 publications

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“…This is consistent with findings in other chronic medical conditions. (6, 11, 14) It is also consistent with recent research by Huang et al . that found that self-efficacy related health-literacy improved with increasing age in patients with IBD.…”

Section: Discussionsupporting

confidence: 93%

Transition Readiness in Pediatric Patients With Inflammatory Bowel Disease

Whitfield¹,

Fredericks²,

Eder

et al. 2015

J. pediatr. gastroenterol. nutr.

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Objective Transition may be associated with poor health outcomes, but limited data exist regarding inflammatory bowel disease (IBD). Acquisition of self-management skills is felt to be important to this process. IBD specific checklists of such skills have been developed to aid in transition, but none has been well studied or validated. This study aimed to describe self-assessment of ability to perform tasks on one of these checklists and to explore the relationship to patient age and disease duration. Methods 10–21yr old patients with IBD were recruited. An iPad survey queried the patients for self-assessment of ability to perform specific self-management tasks. Task categories included: basic knowledge of IBD, doctor visits, medications and other treatments, and disease management. Associations with age and disease duration were tested with Spearman rank correlation. Results 67 patients (31 male) with Crohn's disease (n=40), ulcerative colitis (n=25), and indeterminate colitis (n=2) participated. Mean patient age was 15.8 ±2.5yr with median disease duration of 5yr (2mo-14yr). The proportion of patients who self-reported ability to complete a task without help increased with age for most tasks including: telling others my diagnosis (ρ=0.43, p=0.003), telling medical staff I do not like or am having trouble following a treatment (ρ=0.37, p=0.003), and naming my medications (ρ=0.28, p=0.02). No task significantly improved with disease duration. Conclusions Self-assessment of ability to perform some key tasks of transition appears to improve with age, but not with disease duration. Importantly, communication with the medical team did not improve with age, despite being of critical importance to functioning within an adult care model.

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Section: Discussionsupporting

confidence: 93%

Transition Readiness in Pediatric Patients With Inflammatory Bowel Disease

Whitfield¹,

Fredericks²,

Eder

et al. 2015

J. pediatr. gastroenterol. nutr.

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“…Even though replies from parents and patients only differed significantly in one question - the important question number 1 (need for support during transfer) - the tendencies in other replies led to the assumption that parents were more aware of the risks during transition and were also more interested in transition, disease and medication education than were their children. These results were in-line with the findings of Anthony et al[12] and Boyle et al[16] but differed from Fredericks et al[17], who reported that parents and patients were aware of the problems and risks of the transition process. These results were also interesting regarding the possibility that an adolescent’s replies to the questionnaire could have been influenced by their parents.…”

Section: Discussionsupporting

confidence: 90%

Transition after pediatric liver transplantation - Perceptions of adults, adolescents and parents

Junge

Migal

Goldschmidt

et al. 2017

WJG

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AIMTo develop a locally adapted, patient-focused transition-program, we evaluated the perceptions of adult and adolescent patients and parents regarding transition-programs and transfer.METHODSWe evaluated these perceptions by analyzing the responses of pre-transfer adolescents (n = 57), their parents (n = 57) and post-transfer adults (n = 138) from a cohort of pediatric-liver-transplant-patients using a self-designed questionnaire. Furthermore, we compared a responder group with a non-responder group as well as the provided answers with baseline characteristics and clinical outcomes to exclude selection bias, characterize high-risk patients for non-adherence and test for gender differences. Included in our study were all pre-transfer liver transplant and combined liver-kidney transplant recipients aged 11-19 currently under our care and their parents, as well as all post-transfer liver transplant and combined liver-kidney transplant recipients aged ≥ 17 years who had received a liver transplant and were treated at our center during childhood.RESULTSFifty-seven (24 female) pre-transfer patients who received a transplant in the previous 8-186 mo (mean 93.9 mo, median 92 mo, SD 53.8 mo) and 138 (57 female) post-transfer patients who received a transplant in the preceding 2-29 years (mean 15.6 years, median 17, SD 6.90) met the inclusion criteria. A total of 67% of pre-transfer patients (71% of female; 64% of male; P = 0.78) and their parents replied. Additionally, 54% of post-transfer patients (26% of female; 48% of male; P = 0.01) replied. No differences in clinical outcomes were observed between the responder and non-responder groups, and responses did not differ significantly based on clinical complication rates, although they did differ based on gender and the location of medical follow-up after transfer. Adolescents were generally ambivalent toward transition programs. However, adults strongly supported transition programs.CONCLUSIONTransition programs need to be developed in close collaboration with adolescents. The best clinical practices regarding transition should respect local circumstances, gender and the location of post-transfer medical follow-up.

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“…This QI initiative aimed to describe the current state of transition at our institution, implement change, and evaluate the outcomes using a Plan–Do–Study–Act (PDSA) model (Schurman, Gayes, Slosky, Hunter, & Pino, 2015; Taylor et al, 2013). The initial steps of this QI initiative entailed the development and implementation of clinic-based surveys to assess transition readiness skills (TRS) (Fredericks et al, 2010) and transition-related attitudes of our adolescent patients and their parents (Fredericks et al, 2011) in order to document the current state of our program. The goal of this QI project was to increase documented TRS screening to at least 95% for pediatric liver transplant recipients aged C11 years.…”

Section: Intended Improvementmentioning

confidence: 99%

Quality Improvement Targeting Adherence During the Transition from a Pediatric to Adult Liver Transplant Clinic

Fredericks

Magee

Eder

et al. 2015

J Clin Psychol Med Settings

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The transition from pediatric to adult transplant care is a high risk period for non-adherence and poor health outcomes. This article describes a quality improvement initiative integrated into a pediatric liver transplant program that focused on improving outcomes following the transfer from pediatric to adult liver transplant care. Using improvement science methodology, we evaluated the impact of our center's transition readiness skills (TRS) program by conducting a chart review of 45 pediatric liver transplant recipients who transferred to adult transplant care. Medication adherence, clinic attendance, and health status variables were examined for the year pre-transfer and first year post-transfer. 19 recipients transferred without participating in the TRS program (control group) and 26 recipients participated in the program prior to transferring to the adult clinic (TRS group). The TRS group was significantly older at the time of transfer, more adherent with medications, and more likely to attend their first adult clinic visit compared to the control group. Among the TRS group, better adolescent and parent regimen knowledge were associated with greater adherence to post-transfer clinic appointments. Transition planning should focus on the gradual shift in responsibility for health management tasks, including clinic attendance, from parent to adolescent. There may be support for extending transition support for at least 1 year post-transfer to promote adherence.

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

Cited by 54 publications

References 37 publications

Transition Readiness in Pediatric Patients With Inflammatory Bowel Disease

Transition Readiness in Pediatric Patients With Inflammatory Bowel Disease

Transition after pediatric liver transplantation - Perceptions of adults, adolescents and parents

Quality Improvement Targeting Adherence During the Transition from a Pediatric to Adult Liver Transplant Clinic

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