Danielle Sweeney Social Worker Liver Transplant Unit The journey from paediatric to adult health for liver transplant patients: the psychosocial experience Danielle Sweeney Social Worker Liver Transplant Unit

Background Care transferred from paediatric setting (Royal Children’s Hospital) to adult setting (Austin Health) at ≈18 years of age following liver transplant

Background Concern for young patients Conversations…we care, but what are we doing for them?

Goal, aim and research questions Goal: To improve patient experiences and outcomes Aim: To identify and document the psychosocial issues of young post liver transplant patients (aged 18-25) who have transferred from RCH to Austin Health, and the gaps in our current service. To make recommendations for an improved model of Social Work care. Research Questions: 1) What are the psychosocial issues for young people who transfer from the paediatric to the adult care setting? 2) What services are other national solid organ centers providing to this patient population? 3) What are the gaps in our current service?

Methodology Literature review Retrospective medical file audit (clinical data mining) National benchmarking of adult solid organ transplant Social Work services via Survey Monkey

Results - literature review Psychosocial Issues Chronic illness in childhood (Bekesi et al., 2011; Bell, et al., 2008; Cooke et al., 2011) Solid organ transplant in childhood and psychosocial outcomes (La Rosa et al., 2011) Non compliance (Bell, et al., 2008)

Results - literature review Transition and Transfer ‘Transition is the purposeful, planned movement of adolescents and young adults form child-centred to adult oriented health care systems’ (Heldman et al., 2015) ‘Transfer is a discreet component of transition; the physical movement to the adult health care provider’ (Fredericks & Lopez, 2013; Helderman et al., 2015) Transfer and transition a critical time – needs planning, issues and challenges have been identified Transfer found to be associated with non-compliance, mortality and poor self management in liver transplant patients (Annunziato et al., 2011; Harry et al., 2015; Kerkar & Annunziato, 2015)

Results - literature review Service Response Emerging transition theories and models, primarily in the paediatric setting (La Rosa et al., 2001) Recommendations for adult services (Helderman et al., 2015; Kerker & Annuziato, 2015; Varjo et al., 2014) Studies showing some positive outcomes (Harden et al., 2012; Helderman et al., 2015)

Results - Medical File Audit Austin Health Liver Transplant Unit patients aged 18-25 who have had their care transferred from RCH post liver transplant Sample: N=16, 9 males (mean = 22 years) Age at transplant: range 9 months – 16 years (mean = 9.3 years)

Results - Medical File Audit Psychosocial 15/16 live with family 5/16 physical affects of treatment 5/16 D&A use 3 significant and ongoing drug and alcohol use 8/16 mood and mental health issues 2 significant issues

Results - Medical File Audit Transfer related issues 9/16 evidence of non-compliance 4 of these – did not cope with transfer 3 surprisingly well with no evidence of rejection 3 evidence of self management skills – but attempting to management doesn’t necessarily equate to success 7/16 evidence of self management

Results - Medical File Audit Services 0/16 SW or psychiatry handover 0/16 SW or psychiatry initial assessment 3/16 SW and/or psychiatry involvement No documentation of parent’s having difficulty

Results - Benchmarking Survey to all Social Workers who service adult national solid organ transplant centers 10 respondents from 36 » 5 kidney, 2 liver, 2 heart, 1 lung

Results - Benchmarking 2 of these also have a transition program in the adult setting 3 7

Results - Benchmarking 5

Results - Benchmarking 2/10 have transition services in the adult setting - beneficial All recognised the needs of this patient population All commented more services needed Families identified as needing psychosocial support

Limitations Limitations with medical file audit » Data mined incomplete record of patient care Small response rate with survey

Conclusions Aim: To identify and document the psychosocial issues of young post liver transplant patients (aged 18-25) who have transferred from RCH to Austin Health and the gaps in our current service. Psychosocial issues: mood/mental health issues, D&A, non compliance, difficulties with transfer, attempts at independent management not necessarily successful. Consistent with literature and other national organ transplant services Gaps: Currently no comprehensive or systematic psychosocial approach. Well identified need for transition programs

Next steps Proposed model of Social Work care? Collaboration with RCH » Handover and initial assessment indicated Collaboration with RCH Discussions with those engaged in transition program Further research – qualitative interviews with patients who have transferred

References Annunziato, R. A., Parkar, S., Dugan, C. A., Barsade, S., Arnon, R., Miloh, T., & Shemesh, E. (2011). Brief report: deficits in health care management skills among adolescent and young adult liver transplant recipients transitioning to adult care settings. Journal of pediatric psychology, 36(2), 155-159. Békési, A., Török, S., Kökönyei, G., Bokrétás, I., Szentes, A., Telepóczki, G., & European KIDSCREEN Group. (2011). Health-related quality of life changes of children and adolescents with chronic disease after participation in therapeutic recreation camping program. Health and quality of life outcomes, 9(43), 1-10. Bell, L. E., Bartosh, S. M., Davis, C. L., Dobbels, F., Al‐Uzri, A., Lotstein, D. & Dharnidharka, V. R. (2008). Adolescent transition to adult care in solid organ transplantation: a consensus conference report. American Journal of Transplantation, 8(11), 2230-2242. Cooke, L., Chung, C., & Grant, M. (2011). Psychosocial care for adolescent and young adult hematopoietic cell transplant patients. Journal of psychosocial oncology, 29(4), 394-414. Fredericks, E. M., & Lopez, M. J. (2013). Transition of the adolescent transplant patient to adult care. Clinical Liver Disease, 2(5), 223-226. Harden, P. N., Walsh, G., Bandler, N., Bradley, S., Lonsdale, D., Taylor, J., & Marks, S. D. (2012). Bridging the gap: an integrated paediatric to adult clinical service for young adults with kidney failure. BMJ, 344. Harry, R., Fraser‐Irwin, C., Mouat, S., Gane, E., Munn, S., & Evans, H. M. (2015). Long‐term follow up of paediatric liver transplant recipients: outcomes following transfer to adult healthcare in New Zealand. Internal medicine journal, 45(5), 580-582. Heldman, M. R., Sohn, M. W., Gordon, E. J., Butt, Z., Mohammed, S., Alonso, E. M., & Levitsky, J. (2015). National survey of adult transplant hepatologists on the pediatric‐to‐adult care transition after liver transplantation. Liver Transplantation, 21(2), 213-223. Kerkar, N., & Annunziato, R. (2015), Transitional care in solid organ transplantation. In Seminars in pediatric surgery (Vol. 24, No. 2, pp. 83-87). WB Saunders. LaRosa, C., Glah, C., Baluarte, H. J., & Meyers, K. E. (2011). Solid-organ transplantation in childhood: transitioning to adult health care. Pediatrics, 127(4), 742-753. Vajro, P., Ferrante, L., Lenta, S., Mandato, C., & Persico, M. (2014). Management of adults with paediatric-onset chronic liver disease: Strategic issues for transition care. Digestive and Liver Disease, 46(4), 295-301.