Pediatric liver transplant patients’ transition to adulthood: Patient and parent experiences

Ordin, Yaprak Sarıgöl; Ünek, Tarkan; Astarcıoğlu, İbrahim

doi:10.1111/nhs.12358

Cited by 7 publications

(16 citation statements)

References 27 publications

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“…37 For adolescents with chronic illness, mental health concerns, and reduced quality of life may be further amplified. 38,39 This finding is consistent in studies reporting psychosocial concerns in young people post-liver transplantation 40 and mental health issues such as anxiety and depression. 41 Transition clinics also enabled the identification of risk and adherence issues in addition to psychosocial, mental health, and school issues.…”

Section: Discussionsupporting

confidence: 79%

Enabling successful transition—Evaluation of a transition to adult care program for pediatric liver transplant recipients

Culnane

Loftus

Peters

et al. 2021

Pediatric Transplantation

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Background This study aimed to evaluate the transition to adult care program instituted for liver transplant recipients (LTRs) at a large tertiary pediatric hospital in Melbourne, Australia. Evaluation included the change in a Global Assessment Measure (GAM) before and after the transition program, satisfaction with the program, and measures of transition success including rejection rates and attendance at appointments post‐transfer. We hypothesized that the introduction of our structured transition program would improve disease understanding, health system understanding, and self‐care. We also hypothesized that those who had undergone the transition program would have lower failure to attend rates and lower rates of rejection than historical controls. Methods A LTR transition program was instituted at our service from 2013 to 2015. The program involved initial assessment of competencies with a Global Assessment Measure (GAM), followed by the introduction of a personalized goal setting program addressing issues identified in dedicated transition clinics. Assessment of competencies was compared between the commencement of the program and immediately prior to transfer. Patient satisfaction with the transition process was assessed at an interview 6–12 months after transfer to the adult service. Rejection rates and failure to attend rates were compared between the intervention group and a group of LTRs who did not receive the intervention. Results Twenty‐eight LTRs participated in the study; 20 received the transition intervention and 8 served as controls. Within the intervention group, all domains of transition competency and reported anxiety regarding transferring had significantly improved at the conclusion of the intervention and all reported satisfaction with the transition program with most (81%) reporting readiness to transfer. There were no significant differences in rejection rates or failure to attend rates between those who did and did not receive the transition intervention. Conclusion A longitudinal holistic transition program has the potential to positively impact the competencies and readiness of LTRs to successful transition and transfer to adult care.

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Section: Discussionsupporting

confidence: 79%

Enabling successful transition—Evaluation of a transition to adult care program for pediatric liver transplant recipients

Culnane

Loftus

Peters

et al. 2021

Pediatric Transplantation

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“…Mixed findings regarding psychological functioning were noted in 3 studies 21,23,38 . Heart transplant recipients in 1 study did not report overall elevated levels of depression or anger, though they reported high anxiety; however, scores were not compared to a control group 23 .…”

Section: Resultsmentioning

confidence: 93%

“…Eighteen studies reported on educational and occupational status of SOT recipients 13–15,21,22,24,28,29,33–42 . Studies found that the majority of SOT recipients (ranging from 74% to 100%) had completed high school, and 22% to 65% had engaged in post‐secondary study (e.g., vocational training, college, university).…”

Section: Resultsmentioning

confidence: 99%

Quality of life and psychosocial outcomes of adults who were pediatric solid organ transplant recipients: A systematic review

Durish

Lin

Pol

et al. 2022

Pediatric Transplantation

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Background The number of pediatric SOT recipients surviving into adulthood is increasing. Thus, understanding their psychosocial and QoL outcomes is important. We conducted a systematic review to collate existing literature examining QoL outcomes (physical functioning, psychological functioning, social functioning), as well as risk and protective factors associated with QoL, among adults who underwent SOT during childhood. Methods A systematic search of five databases, from inception to January 6, 2021, was conducted to identify articles that reported on QoL outcomes for adults (≥18‐year of age) who received a SOT during childhood (<19‐year of age). Results Twenty‐five articles met inclusion criteria. Studies examined QoL across a range of SOT populations (liver, kidney, heart). QoL and psychosocial outcomes were variable; however, the majority of studies indicated QoL in this population to be similar to the general population, or at least similar to other chronic illness groups, with the exception of physical and social functioning. Factors related to a more optimal medical course, younger age at transplant and follow‐up, and positive psychosocial functioning, were found to be predictive of better QoL outcomes. Conclusions While several studies indicated QoL to be similar to the general population, the literature is limited in both quantity and quality. No study employed prospective, longitudinal methodologies to systematically evaluate QoL over time and few studies utilized normative‐based measures of QoL. Furthermore, several SOT groups were under‐represented in the literature (e.g., lung, intestine, multi‐visceral). Nonetheless, findings have implications for intervention and clinical decision‐making.

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“…• The transition phase is associated with complications and experiences of exacerbations in the adolescent's condition [12][13][14] and an increased number of noattendance at outpatient clinical visits in adult care [15,16]. • The transition phase has also been shown to significantly impact parents, including an increased risk of developing anxiety and stress [17][18][19][20] and a general concern and sense of uncertainty about their child's transfer to adult care [21,22].…”

Section: Background and Rationale {6a}mentioning

confidence: 99%

“…The transition phase has also been shown to significantly impact parents, including an increased risk of developing anxiety and stress [ 17 – 20 ] and a general concern and sense of uncertainty about their child’s transfer to adult care [ 21 , 22 ].…”

Section: Introductionmentioning

confidence: 99%

A comprehensive transfer program from pediatrics to adult care for parents of adolescents with chronic illness (ParTNerSTEPs): study protocol for a randomized controlled trial

Thomsen

Boisen

Hanghøj

et al. 2022

Trials

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Background Previous research shows that adolescents with a chronic illness have more successful transfers to adult care if their parents are involved during the transition. However, there is a lack of structured and evaluated transfer programs for parents. Our aim will be to test a comprehensive transfer program for parents of adolescents with chronic illness during the transfer from pediatric to adult care and to evaluate the program’s effectiveness, acceptability, and costs. Methods The overall design for this protocol will be a randomized controlled trial. A total of 62 dyads consisting of an adolescent (age 16.5–17.5) and at least one parent will be recruited from one of four pediatric outpatient clinics (nephrology, hepatology, neurology, or rheumatology) at Copenhagen University Hospital - Rigshospitalet, Denmark. The dyads will be randomized to receive the transfer program in addition to usual care or to receive usual care only. The program includes an informative website, bi-annual online educational events, and transfer consultations across pediatric and adult care. Outcome measures will include transition readiness, allocation of responsibility, parental uncertainty level, and transfer satisfaction. Data will be collected from participants at baseline, every 6 months until transfer, at transfer, and 3 months after transfer. The parents’ acceptance of and satisfaction with the program will be explored through semi-structured interviews. Cost, barriers, and facilitators affecting future implementation will be identified in interviews with health care professionals, using the Normalization Process Theory as a framework for the process analysis. Discussion To our knowledge, this transfer program is one of the first interventions for parents of adolescents with a chronic illness during their child’s transfer to adult care. Our trial will include parental and adolescent measures allowing us to examine whether a transfer program for parents will improve transfer to adult care for both parents and adolescents. We believe that results from our trial will be helpful in forming recommendations to ensure better involvement of parents in transitional care. Trial registration ClinicalTrials.gov NCT04969328. Retrospectively registered on 20 July 2021.

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Pediatric liver transplant patients’ transition to adulthood: Patient and parent experiences

Cited by 7 publications

References 27 publications

Enabling successful transition—Evaluation of a transition to adult care program for pediatric liver transplant recipients

Enabling successful transition—Evaluation of a transition to adult care program for pediatric liver transplant recipients

Quality of life and psychosocial outcomes of adults who were pediatric solid organ transplant recipients: A systematic review

A comprehensive transfer program from pediatrics to adult care for parents of adolescents with chronic illness (ParTNerSTEPs): study protocol for a randomized controlled trial

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