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The transition from pediatric to adult long‐term care

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Survivors of childhood cancer have a high rate of illness due to the occurrence of chronic health conditions [19]. Despite long‐term late effects and care impact on all age groups, there is a paucity of data on the transition to adult healthcare from young adults transplanted during childhood. There are some specific issues for this subpopulation [20]. Several modes of cancer survivor care are applied, mainly depending on the size of the pediatric HSCT center and the center’s preferences: HSCT center‐based model (I) without a referral, where adult survivors are kept indefinitely at the treating institution; community referral model (II), where survivors are transitioned at adulthood to their primary care professionals; hybrid model (III), where the survivors are transitioned to community healthcare providers who collaborate closely with the treating institution for all questions concerning long‐term survivorship; adult HSCT LTFU model (IV), where the survivors are transitioned definitively to an LTFU‐clinic or HSCT center [21]. Independent of the selected model, there is the need to identify healthcare professionals with experience in childhood and adult HSCT, expertise in long‐term follow‐up and able to coordinate healthcare transition and future planning. During the childhood of the young cancer patient, the parents or other adult family members took the responsibility and the decisions for the child’s healthcare. In the preparation for the transition phase, the young adult survivor has to be motivated to become responsible for his survivorship care. Furthermore, it must be ensured that the healthcare insurance will continue to cover for all HSCT‐related complication through the adulthood [21,22].

Barriers to successful healthcare transition included the survivor’s psychological condition and knowledge about their primary disease, the attitude of pediatric and adult health‐providers, and the health system itself. Unlike their adult counterparts, childhood HSCT survivors have often limited access to information on the diagnosis and treatment of their malignancy, as well as on adverse effects that can occur later in life. They may have been too young to understand and their parents may have decided to shield them from details of their disease. In 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].

Blood and Marrow Transplantation Long Term Management

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