Читать книгу Blood and Marrow Transplantation Long Term Management - Группа авторов - Страница 52

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%).