Development of a Standardized Follow up for Pediatric Transplant Long Term Survivors By Family Physicians

Topic Significance & Study Purpose/Background/Rationale 

Indications for stem cell transplantation (SCT) in pediatric population are increasing and patients are expected to live long and productive lives.  However, they do require lifelong follow up, dictated by the initial diagnosis and late toxicities.  Like most pediatric centers, patients over 21 years old can no longer be followed by our pediatric team and need to be transfered to an adult facility.  At our institution, we are facing the challenge of a lack of available resource to transfer all of our patients to an adult transplant facility.  In this situation, how can we best provide patients with a proper and safe follow-up when the adult transplant center cannot accept the entire patient cohort?

Methods, Intervention, & Analysis In order to achieve this goal, we have developed a standardized protocol to direct our patients toward the most appropriate facility.  Referral to the adult transplant team is restricted to those patients presenting GVHD, hematologic toxicity or more than two organs involvement.  All of our other patients, which represent the vast majority, will be referred to their family physician with specific guidelines.  However, most of them don’t have a family physician as the follow up of SCT  patients may seem complex. 

Findings & Interpretation 

First, our protocol will help guide and support our patients in identifying a family physician which can take up to two years.  Once a referring doctor is found, the transplant physician and the nurse navigator will prepare a file containing the patient medical summary and guidelines detailing the recommended follow up and possible long term sequelea.  Also, our team remains available to answer questions.  Finally, we encourage family physician to send us periodical summary charts.

Discussion & Implications 

Information about the recommended follow up and good life habits are previously given to patients to promote their autonomy and facilitate a smooth transition.  This procedure is an important part of our teenagers transplant clinic that was just implemented.  This procedure started about a year ago and so far, it seems to be a positive experience for everyone involved.