The CHOP Hemostasis and Thrombosis Center is committed to providing comprehensive care for children, adolescents and young adults with bleeding and clotting disorders. Our goal is for our patients to develop independence in their own health care so that they are prepared for a smooth and successful transition to adult care prior to 22 years of age. CHOP strongly recommends transfer of care by the 21st birthday. However, in order to better meet individual needs, the timing of transfer of care from the HTC can be negotiated with the patient and family, and should include consideration of the transition policies of other CHOP specialty providers, as well as general life milestones, such as completion of a four-year degree or beginning full-time adult employment.
To reach this goal, our team will:
- Work with patients and parents to provide support and age-appropriate resources to promote the knowledge and skills necessary for adult care and best health outcomes. This starts with educating children about their bleeding or clotting disorder and encouraging gradual and appropriate participation in their treatment, including self-care and understanding of insurance. We will assess the child’s knowledge and skills over time, in order to determine how things are progressing towards development of these skills.
- Offer time to speak with children alone (no parent) at the clinic visits, once children reach the age of 12-14 years, and work to engage them more inclusively in their care. This provides the opportunity for children to begin to take responsibility for aspects of their care and to help them become more comfortable talking to providers on their own. Once a patient reaches the age of 18 years, we will begin a more adult model of care and comply with privacy laws to ensure confidentiality for each young adult. The young adult has total control of all healthcare information. Parents will not have access to health information unless the young adult provides written authorization.
- Provide information to you about the options for adult care prior to transfer to an adult care provider. For patients with bleeding disorders, this will include hemophilia treatment centers that care for adult patients. For patients with clotting disorders, we will work with the patient on an individual basis to identify the appropriate adult providers. A transfer checklist will also be provided with details regarding the process.
We look forward to the chance to partner with each patient and family to help prepare our adolescents and young adults for a smooth transition to adult care and a successful, healthy adult life.