Adolescent Transition to Adult Care in Solid Organ Transplantation: A consensus conference report

With the remarkable success in pediatric organ transplantation over the past few decades, progressively increasing numbers of children with previously fatal disorders are reaching adulthood and moving into the realm of adult care. They remain dependant on life‐sustaining and potentially complex treatment. Their effective transition to adult care requires early coordinated interdisciplinary planning. The committed involvement of the pediatric and adult transplant teams and the patient/family unit are critical for success. Community resources are often indispensable. Education and training in the area of transition are needed for both adult and pediatric health care providers, adequate resources must be provided and medical/drug insurance issues effectively addressed. A resume of these issues and tasks is provided in Table 7. Research on best practices and outcome analysis are needed. These are stimulating challenges, and in the struggle to overcome them, we must not lose sight of the fact that transition is an event to celebrate.Table 7Issues and tasks in transition 7a. Tasks for pediatric transplant team• Designated transition coordinator• Written health care transition plan for each patient and their family• Checklist of critical tasks and milestones to achieve throughout childhood and adolescence, and prior to transfer• Preparation of parents‐ guidance on age appropriate developmental tasks and the progressive responsibility of their child and adolescent for his/her ownhealth care and social functioning• Promotion of educational and vocational planning throughout childhood and adolescence• Guidance for patient and family regarding health and drug insurance, well prior to transfer• Standardized assessment of readiness for transfer‐ communication of this assessment and areas in need of attention to adult providers at time of transfer• Up‐to‐date concise health summary (‘passport’) for each patient• Developmentally challenged adolescents‐ adapted tasks and transition schedule‐ addressing of guardianship and consent issues significantly in advance of 18th birthday‐ provision of their own meaningful medical summary adapted to their level of functioning• Collaboration with adult transplant team regarding their expectations, clinic set‐up and clinic protocols• Communication and education of primary care provider regarding care beyond the norm for the young adult transplant recipient7b. Tasks for the adult transplant team• Partnership with paediatric team for bidirectional information exchange on practices, protocols, treatment plans• Education on developmental stages of adolescents, the impact of chronic disease on timing of these stages, and on managementof congenital and childhood onset chronic diseases in adulthood• Adult site resources‐ the minimum: transfer liaison person, nurse coordinator, dedicated social worker‐ optimal: in addition to above, dedicated urologist with proficiency in congenital urologic malformations, reproductive specialist,psychologist, dietician‐ young adult designated clinic area and/or clinic day7c. Systems issues• Primary and preventive health care‐ establishment of partnerships with primary care providers and referral of patients to them well in advance of transfer‐ education of primary care providers and patients on transplant specific health care guidelines, such as reproductive health,cancer screening, immunizations, dental health, and high risk behaviors• Mechanisms for joint meetings of adult and paediatric teams• Process and procedures for follow‐up of outcomes of adolescent patients after transfer to adult care for both quality assuranceand care improvement• Educational tools‐ self learning: web based, DVD, podcasts; printed manuals‐ continuing education conferences‐ component of residency/fellowship training (both adult and paediatric)• Consideration of requirement for appropriate transition program as a component of accreditation of paediatric and designatedadult transplant programs• Timing of transfer‐ complement or coincide with other age related milestones (finishing high school, going to college or university,moving out of parental home, beginning to work)‐ flexibility to take into consideration individual patient readiness, medical, social and emotional stability Open table in a new tab

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