[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.
Long‐term transplant team and the annual LTFU visit
A well‐functioning follow‐up program requires a multidisciplinary approach. The composition of the long‐term transplant team is crucial (Figure 3.2). There is usually a core team, including physicians and nurses specialized in HSCT, GVHD, and long‐term follow‐up, coordinators of the program, medical social workers, nutritionists, physical therapists, and psychologists. This core team needs to be supported by a complex consultative network with specialists interested in the long‐term follow‐up of HSCT. The specialties involved may include pulmonology, infectious disease specialists, ophthalmology, neurology, endocrinology, dental medicine, dermatology, gynecology, fertility counseling, cardiology, and others [33].
Table 3.2 Significant aspects to consider when building up a long‐term follow‐up transplant clinic
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Commitment of the head of the HSCT center to have a long‐term follow‐up clinicConvince the core team of physicians and nurses that this needs to be doneDefine the resources required to start the programDecision on the type of model to be chosenThis model can change with time for a given centerDefine what will be the consequences on the transplant centerDefine the team of the long‐term clinicThe core team compositionThe multidisciplinary network with the most important specialists involved in the long‐term follow‐upDefine the space needed for the long‐term follow‐up clinicRoom for administrative work (preparation of the follow‐up visit)Room for blood sample takingRooms for clinic visit and counselingRoom to isolate patients with communicable infectious diseasesDefine the follow‐up program for the survivorDefine the process of a follow‐up visit (preparation; visit; post‐visit follow‐up)Determining program parametersOrganize post‐visit follow‐up (tracking results; interpretation of the findings)Organize the documentation of the follow‐up careDefine how to assure all long‐term follow‐up and to deal with lost to follow‐upDefine
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