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].
| 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.
Schedule of the long‐term follow‐up visit
The annual long‐term follow‐up visit should be as short as possible, not lasting longer than one, maximally two days. An optimal time schedule will reduce costs, particularly for those survivors coming from distant geographical areas, and guarantee the attendance of long‐term survivors who are socially integrated at school or employment. In addition to the routine clinical assessment by history and physical examination, the follow‐up visit includes a number of consultations by non‐hematology specialists, time‐consuming highly specialized investigations, assessment and management of psychosocial issues, and referral to appropriate clinical services for additional evaluation and follow‐up for preventive care, if needed. At the end of the visit, enough time should be allocated to answer specific questions, counsel on healthy lifestyle adherence, and provide a treatment summary and survivorship care plan for the next year. A checklist of the recommendations for concrete counseling at the LTFU visit is shown in Table 5.2 [4].
Table 5.2 Check‐list of recommendations for counseling of the long‐term survivor during the follow‐up visit.
Source: Based on Majhail et al. [4].
| Healthy heart lifestyle recommendationsEat healthy diet with a wide variety of foodsDo not smoke (passive and active exposure), chew tobacco, or use illegal drugs. For smoker, insist on smoking cessationUse alcohol in moderation, generally <2 drinks per dayMaintain a healthy weightAvoid excessive sun exposure and wear sunscreen protection for anticipated periods of longer exposureFollow general population age‐specific guidelines for physical activityAdults aged 18 to 64 years should do 2 h 30 min a week of moderate‐intensity aerobic physical activity or 1 h 15 min a week of moderate‐ and vigorous‐intensity aerobic physical activity or an equivalent combination of moderate‐ and vigorous‐intensity aerobic physical activityAerobic activity should be performed in episodes of at least 10 minAdults should also do muscle strengthening activities that involve all major muscle groups performed on two or more days per weekOther recommendations to the patient during the follow‐up visitSkin self‐examinationSecond cancer vigilance counselingCounseling and education about preventive oral health and routine dental maintenanceAvoid iron supplementation and alcohol ingestion for patients with iron overloadParticular counseling for womenIn women with gonadal recovery, counseling contraception. Contraception is advisable if fertile or if fertility status is not known and pregnancy not desiredCounseling about preventive measures for bone loss and fractures (physical exercise; vitamin D supplementation, hormone replacement)Self‐examination of the vaginal area, general hygiene measures, and early recognition of local symptomsAdherenceExplaining the importance of adherence to treatment and healthy lifestyle |
As a consequence, this visit has to be prepared carefully before the scheduled date. The LTFU visit can be divided into three different phases: the preparation of the visit, the structured visit itself, and the post‐visit follow‐up [5,6]. The three phases have been described in the chapter on “Long‐term follow‐up
