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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].

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* Potential long‐term effectsList of possible late effectsFollow‐up planRecommendations for screening tests (type and frequency) based on age and risk factors

^* only in patients with allogeneic HSCT

The survivorship care plan is intended for the healthcare provider as well as the transplant survivor and its family. It is particularly useful for healthcare providers who are not specialized in cancer treatment and in HSCT. Elements that have to be included in such a survivorship care plan are presented in Table 5.1. From this information, an individualized risk profile and a plan for follow‐up care can be assessed. A survivor‐friendly version should be available for the survivor and their relatives. Issues to be considered when implementing a survivorship care plan concern data collection, resources needed, the way to proceed during the transition phase, and the future responsibilities of care and care planning.