Rachel A Annunziato1, John C Bucuvalas2, Wanrong Yin3, Ravinder Arnand3, Estella M Alonso4, George V Mazariegos5, Robert S Venick6, Margaret L Stuber7, Benjamin L Shneider8, Eyal Shemesh9. 1. Department of Pediatrics, Icahn School of Medicine at Mount Sinai, New York, NY; Department of Psychology, Fordham University, Bronx, NY. Electronic address: annunziato@fordham.edu. 2. Department of Pediatrics, Cincinnati Children's Hospital Medical Center, Cincinnati, OH. 3. The Emmes Corporation, Rockville, MD. 4. Department of Pediatrics, Ann and Robert H. Lurie Children's Hospital of Chicago, Chicago, IL. 5. Department of Surgery and Critical Care, Hillman Center for Pediatric Transplantation Children's Hospital of Pittsburgh of UPMC, Pittsburgh, PA. 6. Department of Pediatrics, Mattel Children's Hospital at UCLA, Los Angeles, CA. 7. Department of Psychiatry, David Geffen School of Medicine at UCLA, Los Angeles, CA. 8. Texas Children's Hospital, Houston, TX. 9. Department of Pediatrics, Icahn School of Medicine at Mount Sinai, New York, NY.
Abstract
OBJECTIVE: To further refine a measure of self-management, the Responsibility and Familiarity with Illness Survey (REFILS), and to determine if this score predicts medication adherence and, thus, fewer instances of allograft rejection among pediatric liver transplant recipients. STUDY DESIGN: Participants were 400 liver transplant recipients and their parents recruited for the Medication Adherence in Children Who Had a Liver Transplant study, from 5 US pediatric transplant centers. The REFILS was administered to participants (ages 9-17 years) and their parents at enrollment (n = 213 completed dyads). The REFILS scores, and a discrepancy score calculated between patient and parent report of the patient's self-management, were used to predict Medication Level Variability Index (MLVI), a measure of medication adherence (higher MLVI = more variability in medication levels) and central pathologist-diagnosed rejection over a 2-year follow-up. RESULTS: When patients reported greater self-management, their adherence was lower (higher MLVI, r = 0.26, P < .01). Discrepancies between patient and parent report (patients endorsing higher levels than parents) were associated with lower adherence (r = 0.20, P < .01). Greater patient-reported self-management and higher discrepancy scores also predicted rejection. CONCLUSIONS: We found that when patients endorse more responsibility for their care, clinical outcomes are worse, indicating that indiscriminate promotion of self-management by adolescents may not be advisable. A discrepancy between patient and parent perception of self-management emerged as a novel strategy to gauge the degree of risk involved in transitioning care responsibilities to the child.
OBJECTIVE: To further refine a measure of self-management, the Responsibility and Familiarity with Illness Survey (REFILS), and to determine if this score predicts medication adherence and, thus, fewer instances of allograft rejection among pediatric liver transplant recipients. STUDY DESIGN:Participants were 400 liver transplant recipients and their parents recruited for the Medication Adherence in Children Who Had a Liver Transplant study, from 5 US pediatric transplant centers. The REFILS was administered to participants (ages 9-17 years) and their parents at enrollment (n = 213 completed dyads). The REFILS scores, and a discrepancy score calculated between patient and parent report of the patient's self-management, were used to predict Medication Level Variability Index (MLVI), a measure of medication adherence (higher MLVI = more variability in medication levels) and central pathologist-diagnosed rejection over a 2-year follow-up. RESULTS: When patients reported greater self-management, their adherence was lower (higher MLVI, r = 0.26, P < .01). Discrepancies between patient and parent report (patients endorsing higher levels than parents) were associated with lower adherence (r = 0.20, P < .01). Greater patient-reported self-management and higher discrepancy scores also predicted rejection. CONCLUSIONS: We found that when patients endorse more responsibility for their care, clinical outcomes are worse, indicating that indiscriminate promotion of self-management by adolescents may not be advisable. A discrepancy between patient and parent perception of self-management emerged as a novel strategy to gauge the degree of risk involved in transitioning care responsibilities to the child.
Authors: Emily M Fredericks; Dawn Dore-Stites; Andrew Well; John C Magee; Gary L Freed; Victoria Shieck; M James Lopez Journal: Pediatr Transplant Date: 2010-12
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Authors: Jacob L Bilhartz; M James Lopez; John C Magee; Victoria L Shieck; Sally J Eder; Emily M Fredericks Journal: Pediatr Transplant Date: 2015-03-31
Authors: Jill M Plevinsky; Ana M Gutierrez-Colina; Julia K Carmody; Kevin A Hommel; Lori E Crosby; Meghan E McGrady; Ahna L H Pai; Rachelle R Ramsey; Avani C Modi Journal: J Pediatr Psychol Date: 2020-04-01
Authors: Sarah Duncan-Park; Claire Dunphy; Jacqueline Becker; Christine D'Urso; Rachel Annunziato; Joshua Blatter; Carol Conrad; Samuel B Goldfarb; Don Hayes; Ernestina Melicoff; Marc Schecter; Gary Visner; Brian Armstrong; Hyunsook Chin; Karen Kesler; Nikki M Williams; Jonah N Odim; Stuart C Sweet; Lara Danziger-Isakov; Eyal Shemesh Journal: Am J Transplant Date: 2021-04-12 Impact factor: 8.086
Authors: A Colver; H McConachie; A Le Couteur; G Dovey-Pearce; K D Mann; J E McDonagh; M S Pearce; L Vale; H Merrick; J R Parr Journal: BMC Med Date: 2018-07-23 Impact factor: 8.775