Short‐term outcomes of paediatric liver transplant recipients after transition to Adult Healthcare Service

Ferrarese, Alberto; Germani, Giacomo; Lázzaro, Silvia; Cananzi, Mara; Russo, Francesco Paolo; Senzolo, Marco; Gambato, Martina; Zanetto, Alberto; Cillo, Umberto; Gringeri, Enrico; Perilongo, Giorgio; Burra, Patrizia

doi:10.1111/liv.13655

Cited by 13 publications

(10 citation statements)

References 23 publications

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“…Health-care professionals in adult services have the potential to encounter treatment-related complications soon after transition compared to chronic liver diseases of adult-onset. 14 Within this cohort, a significant number of patients had already experienced transplant-related complications, two of these requiring a second transplant. Burra et al suggested that younger age at transplant is associated with increased risk of graft loss and that paediatric transplant recipients are more likely to experience immunosuppressantrelated renal dysfunction necessitating a kidney transplant.…”

Section: Discussionmentioning

confidence: 97%

“…15 Similarly, Ferrarese et al showed that chronic rejection and nonadherence were prevalent (18% and 25%, respectively). 14 However, overall, it is reassuring that children transitioning to adult services have been demonstrated to have reasonable long-term outcome with one study showing 10-year graft survival of 86%. 16 Structured transition to adult services is now being seen as a crucial process and normal standard of care in patients with chronic disease, 17,18 with guidance in the field of chronic liver disease having only recently being published.…”

Section: Discussionmentioning

confidence: 99%

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Outcomes of paediatric patients with chronic liver disease in early adulthood: A heterogeneous, but representative, regional cohort study

Lau

Henderson

2022

J Paediatrics Child Health

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Aim: Advances in paediatric hepatology have led to the increasing survival of patients with paediatric-onset chronic hepatobiliary disease into adulthood. Data are lacking with regard to the outcomes of this heterogeneous group of patients and current transition models may be insufficient. This retrospective regional cohort study examined the outcomes of these patients cared for in a paediatric gastroenterology centre following transfer to adult services. Methods: A prospective database of paediatric patients with liver disease identified those already transferred to adult services. Following exclusions, medical notes were examined and health parameters recorded including initial diagnoses, transplant status, fertility and mortality. Descriptive statistics were used to calculate follow-up data and transplant-free survival (TFS). Results: Overall, 63 patients (52% male) entered the final analyses with a median follow-up of 27.5 years. The most common diagnosis was biliary atresia (19%); 27 different diagnoses were apparent within the cohort highlighting the heterogeneity within a single centre. Transplant prevalence at adult transfer was 41%; 14% of patients were lost to follow-up including 10% of transplant patients. TFS for biliary atresia was 17% after 37.4 years follow-up and was 54% for the total cohort. There were seven documented pregnancies and the prevalence of any psychological or psychiatric input was 44%. Transplant complications occurred in 38% of patients; there were two cancer diagnoses and two deaths following transfer. Conclusions: Although overall mortality was low, the health-care burden of patients with paediatric-onset chronic liver disease is high. This group is also very heterogeneous, making structured transition to adult services difficult.

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Section: Discussionmentioning

confidence: 97%

Section: Discussionmentioning

confidence: 99%

Outcomes of paediatric patients with chronic liver disease in early adulthood: A heterogeneous, but representative, regional cohort study

Lau

Henderson

2022

J Paediatrics Child Health

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“…The feeling of being different was considered to be one of the likely causes of non-adherent behavior by all the HCPs in the study which is in line with other studies exploring young people's experiences of life with a liver transplant. 25,26 Understanding barriers to adherence from the perspective of the young person is imperative for all professionals caring for this age group 27,28 In a rheumatology study of decision-making regarding biologic therapies for arthritis, young adults expressed the need for professionals to address the wider psychosocial impact of medication regimens and not just consider them in the context of disease control and the consequences of non-adherence. 29 Approaching adherence in a developmentally appropriate manner is imperative for success and yet is not always acknowledged by HCPs.…”

Section: Discussionmentioning

confidence: 99%

Healthcare transition in pediatric liver transplantation: The perspectives of pediatric and adult healthcare professionals

Wright

Elwell

McDonagh

et al. 2019

Pediatric Transplantation

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Introduction Transition from pediatric to adult services of young people with a liver transplant is an important priority due to increasing numbers of young people surviving into adulthood. There is increased incidence of graft loss and non‐adherence following transfer to adult services. Although studies have considered the views and perceptions of young people who have undergone liver transplantation and their parents about transition, there is currently no qualitative research with healthcare professionals working in the field of liver transplantation. The aim of this study was to elicit the views of this group of stakeholders about barriers and facilitators of an effective transition process. Methods Semi‐structured interviews were carried out with 11 HCPs from pediatric and adult liver transplant programs and from a range of professional backgrounds. Interviews were transcribed verbatim and analyzed using thematic analysis. Results Four themes were identified: “non‐adherence and psychosocial issues,” “need for better psychological support,” “the role of parents,” and “the emotional impact of transition on healthcare professionals.” Within these themes, professionals described factors which hindered or promoted an effective transition process. Conclusions Screening tools which address psychological and social aspects of the lives of young people should be used in routine practice to identify patients requiring psychosocial support and to identify those at risk of non‐adherence. All staff involved with transition should be trained in the use of psychosocial screening strategies. The development of a formal referral pathway so that young people can access psychological support in adult services is recommended.

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“…However, there are contradictory results relating to graft loss following transfer to adult services 19 . Some studies demonstrate higher incidence of graft loss following transfer for LTRs 18 and similarly for renal transplant patients 20 ; however, others report no increase in graft loss following transfer for both LTRs and renal transplant patients 21,22 …”

Section: Introductionmentioning

confidence: 99%

“…19 Some studies demonstrate higher incidence of graft loss following transfer for LTRs 18 and similarly for renal transplant patients 20 ; however, others report no increase in graft loss following transfer for both LTRs and renal transplant patients. 21,22 Evidence suggests that a structured transition process contributes to increased patient satisfaction, 23 quality of life, 24 coping, and symptom management. 25 Transition interventions for solid-organ transplant patients typically stem from pediatric services as demonstrated in a Canadian study where pediatric nurses were deemed to be best placed to initiate transition discussions with solid-organ transplant patients from the age of 14.…”

Section: Introductionmentioning

confidence: 99%

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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Short‐term outcomes of paediatric liver transplant recipients after transition to Adult Healthcare Service

Abstract: Adolescent LT patients who undergo transition to the AHS have good long-term outcomes. However, a multidisciplinary approach aiming at fostering adherence should be used.

Cited by 13 publications

References 23 publications

Outcomes of paediatric patients with chronic liver disease in early adulthood: A heterogeneous, but representative, regional cohort study

Outcomes of paediatric patients with chronic liver disease in early adulthood: A heterogeneous, but representative, regional cohort study

Healthcare transition in pediatric liver transplantation: The perspectives of pediatric and adult healthcare professionals

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

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