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 program and transplant clinic setup” (Chapter 3).
Ideally, the core team, including physician assistants, nurse practitioners, social workers, physiologist, nutritionist, physical assistants/therapists and a coordinating team should be directly or indirectly involved in the preparation and implementation of the LTFU visit. The role of each member of the core team should be defined before the visit, to ensure that essential issues of the visit are not forgotten or are discussed repeatedly, for example, sexuality, financial toxicity, or occupational status. For specialized examinations and managements, subspecialists such as gynecologist, dermatologist, dentist, ophthalmologist, or endocrinologist should be involved. Such consultations, as well as particular examinations such as imaging procedure, lung function tests, bone density scans, or cardiologic investigations, have to be scheduled carefully for the visit.
After the visit, all clinical and biologic information obtained should be available. The follow‐up visit will be summarized in a single, structured document. This document is a useful tool for the primary healthcare provider, as well as for the LTFU clinic.
Screening and preventive recommendations
Recommendations on screening and preventive practices for long‐term survivors after HSCT have been published in 2006 [7], and updated in 2012 [4]. A list of the recommended screening and preventive practices for long‐term survivors after HSCT has been adapted from these publications [6]. This list includes most of the examinations and tests to be considered during the LTFU visit, and covers most of the known complications that may occur after HSCT (Table 5.3).
Table 5.3 Summary of recommendations for screening and prevention of late complications in long‐term survivors after HSCT
(Source: Adapted from Majhail [4] and Majhail and Hashmi [6].
| Recommended screening/prevention | 6 months | 1 year | Annually |
|---|---|---|---|
| Immunity | |||
| Encapsulated organism prophylaxis | 2 | 2 | 2 |
| PCP prophylaxis | 1 | 2 | 2 |
| CMV testing | 2 | 2 | 2 |
| Immunizations | 1 | 1 | 1 |
| Ocular | |||
| Ocular clinical symptom evaluation | 1 | 1 | 1 |
| Ocular fundus examination |
|