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CHAPTER 5 Long‐term follow‐up calendar
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
The long‐term follow‐up (LTFU) program aims to provide care for childhood and adulthood survivors after hematopoietic stem cell transplant (HSCT). LTFU care of transplanted survivors includes screening and prevention of late complications of the HSCT, education about the possible late consequences of the transplantation, and monitoring of healthcare needs according to risk profile of the survivor.
For transplanted patients in remission from their primary disease and without active chronic graft‐versus‐host disease (GVHD), annual follow‐up visits are considered as a standard. More frequent controls may be required for patients with active chronic GVHD (cGVHD), recurrent infectious complications or other posttransplant complications which need close guidance from experts in posttransplant care. Because long‐term survivors may live in geographical areas far from the transplant center and have usually returned to work, the follow‐up visit should be well prepared in advance to reduce unnecessary long waiting times and avoid forgetting essential elements of LTFU services. Therefore, a well‐adapted LTFU calendar has to be established for each survivor. Health risk after HSCT is strongly associated with a number of factors, which are related to the primary disease and its previous treatment, as well as to the transplantation procedure itself. Since the magnitude of risk and the severity of late complications for an individual patient may greatly vary, the follow‐up care should be individualized on the basis of the patient’s history. For instance, cGVHD is associated with greater risk of secondary squamous cell cancer of the skin and mucosa, while total body irradiation (TBI) increases the risk of breast cancer. There are basic screening and prevention elements that apply to all survivors. Other recommendations depend on the risk of a late complication for a long‐term survivor.
In this chapter, the survivorship care plan, schedule of the LTFU visit, and recommendations for screening and preventive measurements of posttransplant survivors are discussed.
Survivorship care plan
The Institute of Medicine recommends that all patients completing primary cancer treatment are provided with a comprehensive Survivorship Care Plan (SCP) [1]. This SCP is an individualized roadmap for each survivor, explaining what has been done clinically since the initial diagnosis, and which complications may be encountered during the survivorship. The plan is intended to promote care coordination between the transplant center, the LTFU clinic, and the primary care provider, and to improve survivor’s knowledge about late effects that may occur after HSCT. At transition from the transplant center to the LTFU clinic or to a nontransplant healthcare provider, the SCP has to be ready, including the treatment summary and the follow‐up care plan for this patient. Such a plan should be done even if the LTFU clinic belongs to the transplant center.
The SCP is a summary of the patient’s treatment and course of the transplantation and recommendations for preventive care, based on treatment exposure and specific risk factors. The first part of the SCP includes comprehensive information on the diagnosis, the pretransplant treatments received with cumulative dosages of chemotherapy and radiotherapy, and the transplant procedure, including early complications. The second part describes the follow‐up care plan based on the potential risks of late effects, and the future plan for screening and preventing practices. A questionnaire‐based study evaluated the patients’ and providers’ preferences for a SCP. The survivors and caregivers requested a section on sexual and emotional heath and the immune system. Providers wanted the treatment summary to focus only on what they absolutely need to know. All preferred to receive the SCP electronically [2]. In a prospective randomized study of one‐to‐five years HSCT survivors, participants with SCP reported reduced distress and improved mental domain of quality of life, when compared to patients without SCP [3].
Table 5.1 Elements of a survivorship care plan for patients treated with hematopoietic stem cell transplantation.
Source: Based on Children’s Oncology Group Nursing Discipline et al. [5].
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General background informationDemographics (name, sex, date of birth, contact information, insurance)Social information (matrimonial state, children, age of the children)Important medical history before primary diagnosis for which the patient is transplantedName and address of the hemato‐oncologist or primary healthcare providerPrimary diagnosis (for which the patient was transplanted)Diagnostic details (diagnosis, stage at diagnosis and at HSCT, date of diagnosis, pertinent diagnostic features, state of the disease at transition to the long‐term follow‐up clinic)Treatment summaryChemotherapy (before HSCT)Drugs and route of administrationCumulative dose (alkylators, anthracyclines, etc.)Radiation therapyField(s) and total dose, number of fractions, radiation typeInstitution/facilitySurgical procedureDate of the proceduresNames and sites of the proceduresHematopoietic stem cell transplantation (HSCT)Type(s) and date(s) of HSCT (allogeneic, syngeneic, autologous)Type of donor*Source of stem cells*Conditioning regimenGVHD prophylaxis and treatment in allogeneic HSCT
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