Pediatric to Adult Hematologic Care Transition

Certain hematologic conditions can be complex and challenging for patients to successfully manage, especially when transitioning to a new health care team. The majority of youth are unprepared for the change in care and they may not know their medical history, prescriptions, insurance information, or even how to make a doctor's appointment. As teenagers transition into adult care they may feel overwhelmed or forgotten in the new system once they leave pediatrics. Recognizing the need to improve this transition process and to enhance care coordination between practices, the American Society of Hematology (ASH) has developed the following pediatric-to-adult transition toolkit. The toolkit provides both an assessment and summary form that are designed to facilitate conversations between patients, parents, and physicians as the patient transitions to adult care. The toolkit includes both forms for all hematologic conditions, as well as sickle cell disease and hemophilia.

I. Readiness Assessment Forms

These forms should be completed by the patient and are intended to help assess the adolescent/young adult's knowledge and skills regarding his/her hematologic condition and its management. For Adolescent Patients, these forms should be used by the pediatric care team or other clinicians caring for youth to begin the conversation about the youth's needed skills to manage his/her hematologic health and health care. The forms indicate the elements specifically related to the clinical condition that should be assessed and documented by the transferring pediatric practice. For Adult Patients, the forms should be utilized by the adult care team to assess any remaining gaps in self-care knowledge and skills or additional issues that need to be addressed to ensure optimal management of the medical condition(s).

II. Clinical Summary Forms

These forms provide a medical record summary that indicates essential clinical information specifically related to the clinical condition that is to be included in the patient’s medical record upon transfer to the adult practice. These forms should be completed, signed, and dated on the last page by the referring provider and patient/family. The patient and/or family should review and give the completed form to the new adult health care provider.

All forms in this toolkit were developed as part of a broader initiative led by the American College of Physicians (ACP) and included several member organizations from the ACP Council of Subspecialties (CSS), including ASH. A broad ACP work group designed the general form templates and the Society worked to customize the forms for hematology. ASH assembled its own work group that included pediatric and adult hematologists who treat the spectrum of benign and malignant hematologic conditions to evaluate gaps in care coordination and to begin addressing needs in these areas. The group also included a psychologist who has expertise in hematology and transition programs. The forms were also reviewed by ASH's Committees on Quality and Practice, as well as the Society's Officers.