Lost in Transition: The Essential Need for Long-Term Follow-Up Clinic for Blood and Marrow Transplantation Survivors

Abstract

Because of expanding indications and improvements in supportive care, the utilization of blood and marrow cell transplantation (BMT) to treat various conditions is increasing exponentially, and currently more than 60,000 BMTs are performed annually worldwide. By the year 2030, it is projected that the number of BMT survivors will increase 5-fold, potentially resulting in one half of a million survivors in the United States alone. As the majority of survivors now live beyond the first 2 years after BMT, they are prone to a unique set of complications and late effects. Until recently, BMT experts assumed responsibility for almost all of the care for these survivors, but now oncologists/hematologists, pediatricians, and internists are involved frequently in offering specialized care and preventive services to these survivors. To integrate and translate into clinical practice the unique BMT survivorship issues with current preventive guidelines, a team effort is required. This can be facilitated by a dedicated "long-term-follow-up (LTFU)" clinic that provides lifelong care for BMT survivors. In this review, we first illustrate with clinical vignettes the need for LTFU and then focus upon the following: (1) types of LTFU clinic models, (2) challenges and possible solutions to the establishment of LTFU clinic, and (3) vulnerable transition periods.

Childhood to adult transition and long-term follow-up after blood and marrow transplantation

“…BMT survivors are at risk of long-term side effects and complications due to their disease susceptibility, prior treatments and GVHD. Though many of the sequelae and their associated impacts on all age groups have been examined in a recent publication, 3 a literature gap is identified in the issues specific to pediatric and/or adolescent and young adult BMT survivors during and after their transition to adult care.…”

“…20 The need for a well-coordinated multidisciplinary care system for BMT survivors (of all ages) has been previously discussed in the literature. 3 However, childhood BMT survivors (like Asha and Andrew) require even more specific care. In this review, we highlight the unique needs of childhood BMT survivors and identify some proposed models of care.…”

What do we need to know about allogeneic hematopoietic stem cell transplant survivors?

“…3 In addition, the Worldwide Network for Blood and Marrow Transplantation now estimates that 450 000 patients are transplanted worldwide annually; significant proportions of these transplants are allogeneic. [3][4][5] It is now estimated that by 2020 there may be up to half a million long-term all-type HSCT survivors across the globe. 2,5 This growth has largely been attributable to the increasing use of unrelated donors and reduced intensity transplant conditioning regimens.…”

“…[3][4][5] It is now estimated that by 2020 there may be up to half a million long-term all-type HSCT survivors across the globe. 2,5 This growth has largely been attributable to the increasing use of unrelated donors and reduced intensity transplant conditioning regimens. Concomitantly, growth in transplant eligible patients has been accompanied by advances in transplant strategies, donor selection and supportive care, and by an expansion in the potential donor pool through the increasing availability of affordable HLA typing methods.…”

“…This survivor care plan model has been advocated by the Institute of Medicine 2005 Report entitled From Cancer Patient to Cancer Survivor: Lost in Transition. 5 No particular model is optimal for every patient, and considerations must be made for:…”