By: the CdLS Foundation Family Service Team
Cornelia de Lange Syndrome (CdLS) is a genetic disorder present from birth, which causes a range of physical, cognitive, and medical challenges. While there have been many advances in the diagnosis and treatment of CdLS, many challenges remain. One of these challenges is the transition from pediatric to adult healthcare and the continuation of comprehensive services.
WHAT IS HEALTHCARE TRANSITION PLANNING?
Healthcare Transition Planning is the purposeful, planned movement of young adults from a child-centered to an adult-oriented healthcare system (Antosh et. al., 2013). The goal of transitioning from pediatric to adult healthcare services is to maximize lifelong functioning and potential by providing high-quality, developmentally appropriate healthcare services – services remain uninterrupted as the individual moves from adolescence to adulthood (Institute of Medicine US Committee on Disability in America, 2007). It should also be noted: a smooth transition does not result from the mere physical pediatric to adult healthcare transfer, but rather the consideration and incorporation of the young adult’s physical, psychological, and social development (Crowley, Wolfe, and McKee, 2011).
WHAT TO EXPECT AS A PARENT OR CAREGIVER
The transition from pediatric to adult healthcare is a critical stage of life for all individuals involved. This time period can present many factors that can drastically change the daily lives of both the young adult and their family. As a result, the transition period may be an especially stressful time. As a parent or caretaker, it is important to consider using all available tools and resources to make the transition successful and to minimize potential stress (Neece, Kraemer, and Blacher, 2009). For some parents or caretakers of young adults with CdLS who have severe intellectual disabilities, little change may occur in the caregiving tasks as the child grows into an adult. However, both legal and changing medical needs in adulthood will require parents or caretakers to assume new responsibilities as the young adult begins the healthcare transition process.
THE FOUR STEPS TO CREATING A HEALTHCARE TRANSITION PLAN
Adapted from Cooley et al. (2011)
STEP 1: ASK YOUR PEDIATRICIAN ABOUT THE OFFICE TRANSITION POLICY
Every pediatric practice should have a well-defined policy that clearly states the expectations for the healthcare transition to an adult healthcare model. The office transition policy should include:
•• The expected age of patient transfer to an adult healthcare model.
•• The patient’s responsibilities in preparing for the transition.
•• The parent or caregiver’s responsibilities in preparing for the transition.
•• The medical provider’s responsibilities in preparing for transition.
STEP 2: INITIATE A JOINTLY DEVELOPED HEALTHCARE TRANSITION PLAN
The pediatric primary care provider should initiate the Healthcare Transition Plan by age 12-14. If this is not the case, the young adult and parent or caretaker will need to address this topic with their provider(s) at the appropriate time. Once the discussion occurs, the next plan of action should be focused on creating a written plan, sometimes also known as a Plan of Care. A formal Healthcare Transition Plan should be kept in the patient’s chart for review during future office visits.
The plan should include:
•• Documentation of the young adult’s current readiness/capabilities to assume a greater role in self-management of his/her healthcare.
•• May include a completed readiness and/or skill assessment tool showing areas of strengths and weakness on which patient education and skill building can be focused.
•• Documentation of the steps to be conducted by young adult, parent or caretaker, and provider(s) in order to achieve a successful healthcare transition.
•• Documentation of transmittal of information between young adult, parent or caretaker, and provider(s.)
STEP 3: REVIEW AND UPDATE HEALTHCARE TRANSITION PLAN
The plan should be reviewed and updated with the young adult, parent or caretaker, and provider(s) at least annually. This will help promote the recognition by the young adult, parent or caretaker, and provider(s) of successes and/or deficits in readiness preparation for transition to the adult healthcare model. It may also be appropriate to re-prioritize goals and/ or re-evaluate the existing plan with respect to changes in the youth’s medical status, and/or parent or caretaker concerns. Additionally, as the young adult reaches age 16-17 and is closer to the age of expected transition, it may not be feasible to accomplish existing goals with annual reviews, and the frequency may have to be adjusted appropriately.
STEP 4: IMPLEMENT ADULT HEALTHCARE MODEL
Before the implementation of the adult healthcare model, the young adult, parent or caretaker, and pediatric provider(s) should jointly prepare a Portable Medical Summary and a Healthcare Transition Plan that should be delivered to both the patient and the new adult provider(s). All medical records should also be delivered to the adult provider prior to the transfer, along with all the other items found in the Transfer of Healthcare Checklist below. It is also very common for the pediatric provider(s) to make themselves available to the adult provider(s) as a resource for any needed information or assistance during the immediate post-transfer period.
TRANSFER OF HEALTHCARE CHECKLIST
•• Transfer letter (including date of transfer to adult provider)
•• Final transition readiness assessment
•• Healthcare Transition Plan and Plan of Care (including transition goals and pending actions)
•• Updated Portable Medical Summary
•• Guardianship or healthy proxy documents, if needed
•• Medical records
Adapted from Got Transition (2014)
TIPS FOR FINDING AN ADULT PROVIDER(S)
Successful healthcare transitioning requires the identification of an adult healthcare model. Once the young adult and parent or caretaker select an adult provider(s) (usually with the help or guidance of the pediatrician), it is the pediatrician’s responsibility to ensure proper communication of all medical needs to the receiving provider(s). This is a critical step in the transition process, as the adult healthcare personnel may be unfamiliar with any pediatric conditions.
•• Ask current doctor for a referral
•• Consider current adult providers used by family/friends
•• Call insurance company
•• Check with local support groups
•• Call large medical and specialty rehab hospitals to ask for referral line
•• Ask the case manager for suggestions
•• Ask adults who have similar health needs for recommendations
•• Call a “Family Service Coordinator” at the CdLS Foundation for resources
Adapted from UIC-Division of Specialized Care for Children and Families and the Illinois Chapter, American Academy of Pediatrics
“The most important piece of advice I have is to find doctors that you trust, doctors that you know will take good care of your child. If you don’t trust the doctor you are with you have to keep searching.” – Tami H.
Recent Comments