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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

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 transition of survivorsFrom regular posttransplant care to long‐term survivorship careFrom pediatric to adult careFrom long‐term follow‐up clinic to primary health‐care providersDefine reimbursement and financial issueDefine education and research issues on the long termContinuous education of the core teamEducation of the primary care providers and hemato‐oncologistsLinks with patients/family organizationsResearch on long‐term survivorship

Figure 3.1 Components of different long‐term follow‐up survivorship care.

Figure 3.2 Protagonists of the multidisciplinary team of a long‐term follow‐up transplant clinic.

The annual visit has to be scheduled and prepared well in advance [33], and should ideally not last longer than one, maximally two full days. This can guarantee the attendance of long‐term survivors socially integrated at school or employment and reduce costs for those coming from distant geographical areas. Besides the clinical visit, the follow‐up visit includes several consultations by specialists as well as time‐consuming highly specialized investigations. Furthermore, time for counseling and answering questions addressed by the survivor should be allocated. Consequently, the LTFU visit has to be prepared carefully before the scheduled date, and can be divided into three different phases: the preparation for the visit; the structured LTFU visit itself; the post‐visit follow‐up.