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CHAPTER 3 Long‐term follow‐up program and transplant clinic setup
André Tichelli1, Bipin N. Savani2, Shahrukh K. Hashmi3, Navneet S. Majhail4, and Alicia Rovó5
1 Division of Hematology, University Hospital Basel, Basel, Switzerland
2 Division of Hematology/Oncology, Department of Medicine, Vanderbilt University Medical Center, Nashville, TN, USA
3 Division of Blood and Marrow Transplantation, William J. von Liebig Transplant Center, Mayo Clinic, Rochester, MN, USA
4 Blood and Marrow Transplant Program, Cleveland Clinic Taussig Cancer Institute, Cleveland, OH, USA
5 Department of Hematology and Central Hematology Laboratory, Inselspital, Bern University Hospital, Bern, Switzerland
Introduction
With the increasing number of hematopoietic stem cell transplants (HSCT) performed yearly worldwide, and the improvement of survival, the number of patients surviving ≥2 years after transplantation is continuously increasing. By 2030, the projected number of long‐term survivors after HSCT in the US will increase up to 500,000, and worldwide probably to more than one million [1–3]. However, many of the long‐term recipients who have overcome the acute phase of HSCT and are in remission from their primary disease do not return to prediagnosis status [4]; about two‐thirds of them will experience at least one late effect that is a direct or indirect consequence of the cancer treatment or the transplant procedure [5]. Therefore, transplant survivors will have different healthcare needs. Late effects may impact multiple domains of health, quality of life (QoL), and social reintegration. During the early post‐HSCT period, acute medical problems such as infection, acute GVHD, toxicity or endothelial damage syndromes are the most frequent, often life‐threatening concerns, and are the center of attention. With longer follow‐up, the management of survivors increasingly focuses on detection, prevention, and treatment of late complications, improvement of QoL and social reintegration. Patients, having survived the acute phase of HSCT, may develop a series of later complications, some of them presenting in a slow and silent, but no less harmful way. The transition from the early outpatient phase to long‐term healthcare is critical. Survivors are at risk being lost in transition, either because they feel cured of the disease, or have been insufficiently informed about the long‐term consequences of HSCT, or because of psychological, social, financial or geographical issues [6].
Today, internationally approved guidelines on screening, prevention, and management of late effects after HSCT are available [7]. More recently, the National Institutes of Health BMT Late Effects Initiative has recognized the value of lifelong follow‐up of HSCT‐survivors [8]. There is, however, less clarity on how to implement these recommendations and the roles among the involved healthcare providers in long‐term management. The relevant components allowing implementing recommendations of the long‐term health care after HSCT are a robust long‐term follow‐up (LTFU) program, appropriate infrastructures and facilities, specialized human resources covering all aspects of the long‐term care, and administrative and technical support. Additionally, a successful LTFU program needs the active involvement of the long‐term survivor and their primary care physician, as well as the support of the national authorities, to ensure the establishment of a dedicated LTFU clinic and complete insurance coverage.
Post‐HSCT long‐term follow‐up programs emerged with some delay, compared to cancer survivorship care. A good example is, for instance, survivorship programs for Hodgkin lymphoma, which were established about 20 years before HSCT programs. The HSCT‐survivorship programs have adopted much from the experience of cancer survivorship programs. However, HSCT has its long‐term particularities due to the type and intensity of the conditioning regimen, and in the allogeneic setting, the prolonged immune incompetence, and the complications due to graft‐versus‐host disease (GVHD) and its treatment. Survivorship programs and LTFU clinics will, therefore, share many characteristics with cancer survivorship programs, but also present some features of their own.
Setting up an LTFU clinic is a challenging but rewarding experience. When starting a transplantation program, the HSCT team is initially confronted with immediate survival and disease control. The major focus is placed on patient and donor selection, the choice of stem‐cell source and problems related to acute toxicity, relapse, GVHD, and infectious complications. With advancing time, the number of long‐term survivors in the HSCT center is increasing. The needs and expectations of long‐term survivors shift to further concerns. They require less acute medical interventions and immediate care but have increasing expectations of good physical and mental health, of recovery of QoL and social reintegration. In the long‐term, the focus lies on careful screening, prevention, and early treatment of possible late effects that interfere with health conditions. The setup of an LTFU clinic is part of the LTFU program chosen by the transplant center. There are different models of long‐term transplantation clinics, all of