Transition of Transplant Patients with Cystic Fibrosis to Adult Care: Today's Challenges

Abstract

One of the most trying ordeals for patients with cystic fibrosis is moving from one care setting to another. When the patient is facing the crisis of failing health and the need for lung transplantation, the transition can seem even more overwhelming. In Toronto, patients are transferred from pediatric to adult care at age 18. Moving a teenager with cystic fibrosis to the adult system presents many challenges, and even greater challenges arise when the patient has received a lung transplant or is awaiting one. Two pediatric and adult cystic fibrosis teams have worked closely with the lung transplant teams to create a smooth transition system. This article outlines both programs and presents a case study to explore the challenges for the teams in deciding the best place to meet the needs of the patients and their families. These families offer us a look at coping with change at a time of great stress and at how we as healthcare providers can support them through the system.

Transition to adult services for children and young people with palliative care needs: a systematic review

“…There were 20 papers on conditions requiring intensive treatment to prolong life and maximise functioning 21 22 28 40 53 54 57–59 65–67 71 85 86 88 100 104 105. All HIV studies53 64 71 were empirical,64 promoting the development of individualised transition plans for each family, the provision of appropriate environments and continuity of care from a known provider.…”

Management Issues for Adolescents with Cystic Fibrosis

“…Although adolescent patients may wish for early transition and find attending a paediatric centre embarrassing or annoying [52], most find transition an upsetting process due to loss of familiarity. It is well recognised that transition can be an anxious time that some adolescents find extremely difficult, and even more problematic when lung transplantation is imminent [76]. Transition may occur when nonadherence becomes a problem and although paediatricians may transition patients from sheer frustration, the adolescent may interpret this as rejection and punishment [51].…”

Transition to adult services for children and young people with palliative care needs: a systematic review

“…After second screening, 128 full-text articles were examined in detail. Ninety-two papers met the inclusion criteria and were from a variety of countries around the world: USA (n=42) 1 13 16-55 ; UK (n=27) ; Australia (n=11) [83][84][85][86][87][88][89][90][91][92][93] ; Canada (n=8) [94][95][96][97][98][99][100][101] ; Denmark (n=1) 102 ; Switzerland (n=1) 103 ; Germany (n=1) 104 and South Africa (n=1). 105 There were no studies reporting fi ndings from randomised controlled trials, comparative trials or any economic evaluation of a transition program and only one systematic review on transition, but this was for a mixture of conditions to include a chronic condition (diabetes) and learning disability.…”