a cross‐sectional survey on 635 consecutive adult survivors of childhood cancer, 72% accurately reported their diagnosis with precision. Most of the participants correctly reported their treatment history for chemotherapy and radiation therapy. However, knowledge deficits existed about basic facts of their medical history, such as the use and dose of anthracycline and site of radiation [23].
Despite a significant risk of late effects after cancer treatment, adult survivors of childhood cancer often do not receive regular medical care focused on their long‐term risk. Only 17.8% of a large cohort of 8522 long‐term survivors reported a specific medical follow‐up visit within the previous two years. Medical care was not a barrier for most since nearly 90% of the survivors had at least one medical visit during this period. Rather, the care that they received did not focus on their specific long‐term risk and strategies to ameliorate them [24]. These results correspond to another large cohort from the Childhood Cancer Survivor Study: most of the survivors reported some contact with a medical system. The likelihood of a medical visit decreased as survivors aged and the interval from diagnosis increased. Less than 20% of survivors were seen in a cancer center, and risk‐based healthcare of adult survivors of childhood cancer was very uncommon [25]. Very limited resources have been developed to help the care team to manage successfully the transition.
The transition from childhood HSCT to adult long‐term survivorship care is a long and difficult process. There is not one single way to proceed; however, an important step is to provide complete data on disease, treatment, and complications that occurred during the period before the transition, and to elaborate a personalized risk‐based follow‐up program. The transition to adult care has to be planned and started enough time before the patient is transferred. During this transition phase, certain health professionals, such as social workers, psychologists, physical therapists, and nurses, could maintain the continuity of the care [26]. A recent publication, based on real cases, provides a guide for the transition to adult long‐term follow‐up care teams to manage late effects and cGVHD in young adult survivors of childhood HSCT [22].
Long‐term follow‐up program
A long‐term follow‐up survivorship program is intended to provide specialized care to HSCT survivors who are in remission after having completed their treatment, usually for at least 1 or 2 years or longer. Such a program aims to prevent and to detect late complications after HSCT that will interfere later with physical and mental health, QoL and social reintegration. The introduction of risk‐adapted screening procedures allows early detection and promotes healthy behaviors. Special attention has to be brought to QoL, including physical and psychological functioning, sexuality, and fertility issues of long‐term survivors. The long‐term follow‐up program has also to be concerned about the collateral damage caused by the HSCT, such as financial embarrassments, limitations in insurance coverage, and obstacles encountered to reintegrate into society (employment and school) [27]. An LTFU program consists of guidelines for screening and management of late effects and long‐term issues (I), an LTFU clinic with appropriate rooms, dedicated personal and necessary infrastructure (II), and a structured follow‐up visit of the long‐term survivors with defined repartition of the roles involved in the LTFU care (III).
A study, including eight centers from the LIVESTRONG Survivorship Center of Excellence Network, evaluated survivorship models and aimed to identify barriers and facilitators influencing survivorship care [28]. According to this study, the most important prerequisite for the development and the support of a survivorship care program included an organization and leadership commitment as well as the existence of a well‐trained staff dedicated to survivorship. To succeed, the survivorship care model not only has to be supported from the top‐down but also from bottom‐up by the long‐term follow‐up team. Lack of dedicated workspace and personnel resources was often mentioned as the major barrier for a survivorship care center. The lack of financial support for salaries and research, as well as reimbursement for clinical services, remained a key issue for the centers. Finally, an appropriate clinical information system was, in most centers, either not existing or not adapted for the long‐term follow‐up care of cancer patients.
Education of survivors, the healthcare providers, and the LTFU team plays a central role in the setup of a LEFU program [29]. Educating healthcare professionals on long‐term follow‐up may produce institutional changes and improve survivorship care and communication between the healthcare providers involved. Within a National Cancer Institute funded educational program, 204 multidisciplinary teams from the US participated in four annual courses on education for quality of survivorship cancer care. The course participants included administrators, social workers, nurse practitioners, physicians, and others and were followed up at 6, 12, and 18 months after the course for goal achievement and institutional evaluations. The institutional assessments increased significantly from baseline to 18 months. Psychological and emotional standards, which were deficient for most cancer survivors, improved over time. Also, the communication domain improved significantly [30].
The Children’s Oncology Group described survivorship services and, based on their findings, discussed the models of care that are in use for childhood cancer survivors and adult survivors of childhood cancer. Of the 220 institutions, 175 completed an Internet‐based survey [21]. According to this survey, late effects services were available in 87% of the responding centers and 59% of these institutions provided a specialized care program for their pediatric population. This represented an increase compared to a survey done about 10 years previously. The main barriers in caring for pediatric cancer survivors were the lack of time to devote to the program (29% of responses), not enough funding to support the program (20%), deficits in knowledge about cancer survivorship (17%), lack of healthcare insurance or insurance limitations (12.7%), lack of survivor desire to be followed by the late effects team (7%), and no perceived need to support a late effects program (6.7%).
Long‐term follow‐up Clinic
A variety of models of LTFU clinic have been proposed for long‐term cancer care. The models can either be defined geographically or according to the provider of survivorship care [31]. A follow‐up program can be built upon a cancer center‐based model, a community‐based model, or a combination of both models [32]. Each of these models has its advantages and disadvantages, in respect of continuity of care, education, resources and cost‐effectiveness, convenience for the survivor and their family members, opportunities for research on long‐term survivorship and late effects, and risk of loss to follow‐up an HSCT survivor. A combination of a specialized LTFU clinic and community model, where the role of each part has been predefined, appears to appealing. An emerging concept in combining community and cancer center follow‐up is to involve a virtual or Web‐based follow‐up program, which could be designed to bridge the two models of follow‐up [10].
There is a limited number of publications on LEFU clinic setup and long‐term follow‐up program for the transplant setting [16]. A lot of information used for cancer survivorship applies to transplant survivorship care. There are, however, some basic differences that affect the setup of an LTFU transplant clinic and the posttransplant survivorship care program. The follow‐up of cancer survivors is mainly concentrated on the cancer specificity and the treatment applied. In contrast, posttransplant long‐term follow‐up focuses on late effects due to the conditioning toxicity, the delayed immune reconstitution, and the consequences of chronic GVHD and its prolonged immunosuppressive treatment. The Children’s Oncology Group Late Effects Committee provided a comprehensive Long‐Term Follow‐Up Resource Guide describing the entire process required to establish the infrastructure for a long‐term follow‐up clinic [33]. This resource guide is based on the expertise of individuals who have successfully established such centers at their institution. This guide addresses all issues needed to set up a long‐term transplant clinic: various models of long‐term follow‐up care; transition issues; challenges and barriers; survivorship program development; multidisciplinary team composition; recommendations for the annual follow‐up visit; billing and financial issues; integration of survivorship research.
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