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.
Preparation of the visit
Before the visit, the core team reviews the diagnosis, summarizes all relevant events of the posttransplant phase, and discusses the clinical and biologic information obtained from the previous annual visit, taking into account the decisions drawn. Based on the treatment summary, pre‐ordered laboratory analysis, radiologic evaluations, and other specific investigations are scheduled for the visit. Subspecialist referral has to be organized in advance as well. A preclinical meeting of the core team may be helpful to disseminate information and to determine the role of each member during the visit.
The LTFU visit
During the clinical visit, the medical and psychosocial history should be reviewed. A comprehensive physical exam has to be performed with a focus on organs at risk, and a psychological assessment should be done by the psychologist or the social worker. Healthy lifestyle counseling is part of the annual visit and includes general nutrition advice, directives on the prohibition of active and passive tobacco exposure and the use of illegal drugs, advice on limiting alcohol use, limiting sun exposure, healthy weight maintenance, and regular physical activities [35].
Post‐visit follow‐up
The post‐visit follow‐up begins immediately after the visit. A designated person should assemble all information from the visit. Ideally, a core team meeting will discuss the patient status and the consequences on future management. During this meeting, the various results and the impressions of the team members will be summarized in a systematic and written document intended for the general practitioner of the long‐term survivor. An automated mechanism should be in place to contact patients not arriving for the scheduled visit. Patients lost to follow‐up should be traced and, whenever possible, brought back into a healthcare system. Telehealth and telemedicine are increasingly used to provide healthcare for long‐term survivors, particularly for those living at a great distance from the LTFU clinic or for survivors who cannot afford attending regularly a long‐term follow‐up in the site. A designated chapter in this book is dedicated to telemedicine in the care of long‐term transplant survivors (Chapter 4).
Long‐term survivors are generally followed on an annual basis at the survivorship clinic. The recommendations derived from the LTFU visit need to be implemented, monitored and if necessary adjusted. This part of the management belongs to the role of the general practitioner. For instance, if the LTFU clinic recommends treatment of essential hypertension, diabetes or dyslipidemia, the fine‐tuning surveillance and adjustment have to be carried out regularly by the general practitioner. A clear allocation of the responsibilities and the roles in follow‐up is the key to an optimal healthcare of the long‐term survivor. A model for such role distribution is shown in Figure 3.3.
Figure 3.3 Role distribution of responsibilities between the LTFU clinic, the general practitioner responsible for the long‐term survivor and the long‐term survivor.
Recommendation for screening and preventive practices
The “Recommended screening and preventive practices for long‐term survivors after hematopoietic cell transplantation” represent the basis for the follow‐up program. These recommendations, provided by an international group of transplantation experts, were published for the first time in 2006 [36,37] and updated in 2012 [7,35]. To assure international applicability, the three transplant societies who initiated the project in 2006 (the Center for International Blood and Marrow Transplant Research, EBMT, and the American Society of Blood and Marrow Transplantation), invited transplant societies worldwide (the Asia–Pacific Blood and Marrow Transplantation Group, the Bone Marrow Transplant Society of Australia and New Zealand, the East Mediterranean Blood and Marrow Transplantation Group, and the Sociedada Brasileira de Transpante de Medula Ossea) to participate in the updated recommendations of 2012. In this multi‐published paper, the working group recognized that the models and primary site for long‐term follow‐up might vary by country and available resources. Furthermore, it included some suggestions referring to the setup of a posttransplant survivorship clinic [35]:
The HSCT recipient should be provided with a survivorship care plan that includes a treatment strategy summary and a follow‐up plan to facilitate the transition from the immediate transplantation care to the long‐term follow‐up care.
Primary health providers and hemato‐oncologists that will take care of long‐term survivors have to be educated on the unique exposures, risk factors, and medical issues of HSCT long‐term survivors.
Prevention, screening, and management of late complications of transplantation require a multidisciplinary approach. Therefore, the long‐term follow‐up program has to establish a multidisciplinary team.
The Be The Match / National Marrow Donor Program (NMDP), which is one of the leaders in providing hematopoietic stem cells or umbilical cord blood units to patients for unrelated HSCT, also supports patient care by elaborating material for medical education. The NMDP has recently developed guidelines in consultation with several leading transplant organizations for posttransplant care [38]. These guidelines, intended for healthcare providers who have to follow up transplant survivors, provide recommendations on post‐transplant screening, vaccination, and GVHD.
Organizing a long‐term follow‐up clinic in resource‐limited
