Section 2: Transferring to Adult Care for Youth with Spina Bifida

This section focuses on the transfer of patients from a pediatric practice to an adult health care practice, including the sharing of medical records to ensure that new clinicians have all the necessary information to provide care. This section includes information for both youths and young adults and their care team as they prepare for this transition and practices that receive new patients. While this section focuses on health care, it also provides information about other factors that influence the successful transition from pediatric to adult care, including educational support, collaboration with community-based service providers, and cultural context of youths and young adults and their families. This section also provides tips to promote communication with youths and young adults, special considerations for youths and young adults living in rural communities, and for a successful handoff.

Tools in this section include:

2.1: Pediatric to Adult Care Medical Transfer Summary (Medical Care Plan)
2.2: Supporting the Young Adult, Ages 18–21 Years, Transferring From Pediatric Care to Adult Care
- 2.2.1: Employment and Postsecondary Education
- 2.2.2: Collaboration Between the Clinician and School to Support Young Adults 18–21 Years Old
- 2.2.3: Common Transition Assessments That Include Health Care and Are Used to Develop an Individualized Education Program (IEP)
- 2.2.4: Transition Tips for Linguistically and Culturally Diverse Youth With Disabilities
- 2.2.5: Communication Barriers for Young Adults Transferring From Pediatric Care to Adult Care
- 2.2.6: Considerations and Strategies for Young Adults in Rural Communities
- 2.2.7: Tips for Clinicians Transferring Young Adults From Pediatric to Adult Health Care
2.3: Discussion Points for Handoff

Introduction

The following procedures should be in place for youths according to the timing of their transfer to adult care. This timing is most often based on the pediatrician’s best judgment and an individual’s cognitive development, physical abilities, social and financial situation, and health status for processing the transfer of care.

Determination of youths’ and families’ preferences for locating adult-focused care clinicians, considering geographic location, health insurance providers, and capacity of local medical centers or hospitals to provide care to youths with spina bifida (SB) and complex care needs
Determination of a youth’s decision-making capacity and appropriate supports (supported decision-making, power of attorney, or total or partial guardianship)
Determination of eligibility for disability and supplemental social security income (SSI)
Release of information that aligns with Health Insurance Portability and Accountability Act (HIPAA) requirements

As the youth prepares for transfer, considerations of the following activities by the care team, patient, and family are important:

Determination of the range of ongoing medical and adult-focused health services that will be needed
Determination of the need for vocational/adult soft skill programs
Review of eligibility criteria and services available to the youth and family in a potential health insurance plan
Investigation of the experience and expertise of available adult-focused clinicians. If they are not SB specialty clinicians, investigate their willingness to learn to provide services to individuals with SB
Confirmation that adult-focused primary care clinicians can refer to specialty team members as needed and be willing to communicate with specialty team members
Confirmation that adult-focused clinicians have admitting privileges with hospitals or medical centers that have the capacity to provide services to young adults with medically complex needs
Assessment of the ability for a seamless exchange of medical records and review of the Spina Bifida Association (SBA) Health Care Transition (HCT) guidelines before transferring youths to adult-focused care
Awareness of the fact that the patient may see a variety of subspecialists as part of their care team who address health conditions such as cardiovascular health, bone health, mental health, pressure injury care, and others

2.1: Pediatric to Adult-Care Medical Transfer Summary

The medical care plan is a living document that should be completed and updated periodically and can be completed by physicians and non-physician clinicians of the patient’s medical home, including the pediatrician, nurse practitioner, physician’s assistant, nurse, and social worker, with input from patients and their families where necessary. Updating the medical care plan depends on the changing needs of the patient. Typically, the medical care plan is updated annually or at routine follow-up visits. During transfer from pediatric to adult care, it can serve as the Pediatric to Adult Care Medical Transfer Summary.

Download Medical Transfer Summary

2.2: Supporting Young Adults, Ages 18–21, Transferring From Pediatric Care to Adult Care

Learn more about the factors, such as educational supports, collaboration with community-based entities and cultural contexts, that go into successful planning and preparation for the transition from pediatric to adult care.

2.3: Discussion Points for Handoff

As the adult care clinician, consider the following questions and discussion points with young adults.

Last Updated

03/14/2025

Source

American Academy of Pediatrics