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A variety of models of LTFU clinic have been proposed for long‐term cancer care. The models can either be defined geographically or according to the provider of survivorship care [31]. A follow‐up program can be built upon a cancer center‐based model, a community‐based model, or a combination of both models [32]. Each of these models has its advantages and disadvantages, in respect of continuity of care, education, resources and cost‐effectiveness, convenience for the survivor and their family members, opportunities for research on long‐term survivorship and late effects, and risk of loss to follow‐up an HSCT survivor. A combination of a specialized LTFU clinic and community model, where the role of each part has been predefined, appears to appealing. An emerging concept in combining community and cancer center follow‐up is to involve a virtual or Web‐based follow‐up program, which could be designed to bridge the two models of follow‐up [10].

There is a limited number of publications on LEFU clinic setup and long‐term follow‐up program for the transplant setting [16]. A lot of information used for cancer survivorship applies to transplant survivorship care. There are, however, some basic differences that affect the setup of an LTFU transplant clinic and the posttransplant survivorship care program. The follow‐up of cancer survivors is mainly concentrated on the cancer specificity and the treatment applied. In contrast, posttransplant long‐term follow‐up focuses on late effects due to the conditioning toxicity, the delayed immune reconstitution, and the consequences of chronic GVHD and its prolonged immunosuppressive treatment. The Children’s Oncology Group Late Effects Committee provided a comprehensive Long‐Term Follow‐Up Resource Guide describing the entire process required to establish the infrastructure for a long‐term follow‐up clinic [33]. This resource guide is based on the expertise of individuals who have successfully established such centers at their institution. This guide addresses all issues needed to set up a long‐term transplant clinic: various models of long‐term follow‐up care; transition issues; challenges and barriers; survivorship program development; multidisciplinary team composition; recommendations for the annual follow‐up visit; billing and financial issues; integration of survivorship research.

Japan recently evaluated the present status and needs of LTFU clinics for HSCT survivors [34]. A nationwide questionnaire survey showed that 62% of 188 participating centers had an established LTFU clinic. The most frequent reason no operating an LTFU clinic was lack of human resources, especially nurses. About half of the centers recommended that survivorship care at the LTFU clinic should go beyond 5‐years post‐HSCT. Still, a relevant number of HSCT centers did not yet set a LTFU clinic. However, when compared to a survey performed in 2008, there was a significant increase in the nationwide rate of establishing the LTFU clinic, from 7% in 2008, up to 69% in 2019.

There is no one best model of LTFU clinic for all transplant centers and, for a given center, the model may change over time. The development of a definitive model can be the result of different attempts until the optimal structure has been obtained. Considerations for the choice of a model include factors such as available resources in personnel and workspace. Other factors that play an important role are the commitment of the head of the transplant center and the team to support a late effects program, the size and type of transplant center (allogeneic, autologous), the geographic area covered by the transplant center, the level of education of the primary care providers in survivorship after HSCT, and the national system of insurance covering long‐term follow‐up care. Independent of the chosen model, all HSCT survivors should maintain life‐long regular contact with the care provider who knows the potential long‐term survivorship and the causal relationship between transplantation and late effects. Some models of long‐term follow‐up clinics are shown in Table 3.1, and Table 3.2 shows the significant aspects that need to be considered when setting up a long‐term transplant clinic.

Table 3.1 Different models of long‐term transplant clinics

Model	Advantages	Risks
Integrated Care Model: Outpatients long‐term follow‐up clinic is integrated into the outpatient clinic of the transplant center	Comfortable for patients and family because of the continuity of the care Continuity of care ensured Knowledge in transplant related problems and particularly in chronic GVHD Network with other specialties usually available (dermatologist, gynecologist, endocrinologist, ophthalmologist etc.)	Main attention brought to the acute medical problems of the post‐transplant care Focus set on illness and not wellness Potential lack of interest, knowledge and skills in late effects and long‐term healthcare Research in late effects and long‐term survivorship becomes of second rank
Independent specialized long‐term follow‐up clinic	Providers with expertise in long‐term care Risk‐based screening and follow‐up care Emphasis on improving knowledge on long‐term survivorship after HSCT Health education of the survivors and caregivers Opportunity to train healthcare professionals Structured research of late effects	Requires multiples resources of personnel and work space Requires time In the case of an independent center, loss of expertise of the transplant center Continuity of care can get lost if the transition is not well done
Consultative Care Model: Specialized long‐term follow‐up clinic integrated within the transplant center	Most advantages of the independent specialized long‐term follow‐up clinic, without loss of continuity	Requires multiples resources of personnel and work space
Community‐based care: The primary care provider or the hematologist‐oncologist is responsible for the long‐term follow‐up	Convenience for the survivor and caregivers Promotes independence and reintegration into primary care May improve adherence to treatment and healthy life style recommendations from the LTFU‐clinic	Limited provider knowledge and training regarding late effects Lack of time to devote to special physical and psychological needs of long‐term survivors Lack of sub‐specialist resources with survivorship expertise Difficult to coordinate research Difficult to update survivors regarding new information as it becomes available Difficult to update survivorship database
Shared Care Model: Combined approach between transplant center and community‐based care	Combined advantages of specialized care and community‐based care Higher cost‐effectiveness Effective implementation of the recommendations from the LTFU clinic May improve adherence to treatment and healthy life style recommendations from the LTFU‐clinic	Risk of insufficient predefined role of each part Risk of poor communication between each part

The essential responsibilities of a LTFU clinic are to assess the health condition, screen for and prevent late effects, detect and treat as early as possible the late complications after HSCT, estimate the quality of life, and counsel the long‐term survivors after HSCT. Figure 3.1 presents the most relevant tasks of a LTFU clinic. Ideally, the posttransplant long‐term clinic not only assures medical and psychological care, but also considers financial aspects, insurance issues, and re‐adaption back into the social life, and approaches problems related to school and employment. The follow‐up clinic needs space and personnel resources to meet the requirements of survivorship care. It is also a time‐consuming issue. The minimum time required for initial and annual survivorship visits has been estimated to be approximately 120 min and 90 min, respectively [21]. The amount of time includes preparation, scheduling tests, clinical face‐to‐face time, gathering, interpreting and compiling results, post‐clinical conferencing and communication of the results.