A Recommended Approach to the Young Adult with Turner Syndrome Transitioning to Your Adult Endocrinology Practice

Background for Transition Visits

A team approach within the practice is recommended. Be sure that staff understands special situation of transition care.

The patient is not yet fully initiated into the "adult model" and may require assistance and support.

Parents should be allowed to attend appointments if the patient desires. It is recommended that the patient complete a Visitor Information Form to inform a new provider who, if anyone, can attend appointments. Consider asking the patient to sign a form allowing the healthcare team to communicate with the patient’s parents.

Extra consideration in scheduling and confirming the appointment may be necessary.

The patient may also need assistance with:

  • The “unknown” of new facility (directions, parking issues)
  • Insurance issues
  • What to bring to appointment:
    • Insurance card
    • Paperwork from former pediatric endocrinologist
    • Forms for the new physician (online, mailed)
    • List of medications or prescription bottles

The new healthcare team should greet the patient with the awareness that s/he is transferring care and provide support and assistance with the check-in process and paperwork.

  • Confirm contact information for the patient, ask about preferred name and how they prefer to be contacted (cell phone, text, email, depending on practice situation).
  • Consider developing a “Welcome to the Practice” guide that would provide this information to your new patient.

The First Encounter: Allow Ample Time

Review HIPAA and determine if parents/others are permitted to receive/hear information about the transitioning young adult.

Review contact information during office hours and for evenings/weekends in case questions arise.

Review clinical summary with patient or if patient transitioning without a summary from prior physician, cover the items on the clinical summary during history process.

Pay special attention to concerns about body image, reproductive issues, learning disabilities, fears, coping, family stressors.

Ask about any concerns or questions.

Ask about participation in Turner support network. Consider referral to local group if patient is not already participating.

Review other conditions or issues associated with Turner Syndrome. Identify the primary care physician or the specialist who will have primary responsibility for handling each concern.

  • Fertility and family planning
  • Hormone Replacement Therapy
  • Cardiovascular disease, hypertension
  • Hypothyroidism
  • Celiac Disease
  • Depression, anxiety, and low-self esteem
  • Metabolic Syndrome, Diabetes risk
  • Liver function
  • Audiology evaluation
  • Metabolic bone disease
  • Exercise/Fitness/Weight control
  • Learning Disabilities
  • If there are multiple risk factors for aortic dissection, consider a wallet card or bracelet to alert medical personnel

Ongoing Monitoring

Intervention || Frequency (1)

  • Cardiology Evaluation (MRI, EKG) || At baseline, prior to pregnancy planning, every 5-10 years as indicated.
  • Blood pressure || Annually
  • ENT and Audiology || Every 1-5 yr
  • Fasting glucose, A1C, lipids, cbc, BUN/creatinine, vitamin D || Annually
  • DEXA scan || At initial visit and then as indicated
  • Liver and thyroid screening || Annually
  • Celiac Disease Screen || As indicated
  • Psychosocial Evaluation || As indicated

Discuss care plan for ongoing follow up:

  • Discuss/provide information from the Turner Syndrome Society or the Hormone Health Network on recommended testing and follow up. Review what is needed now and what the plan will be for ongoing/future visits.
  • Discuss expectations of how an ‘adult’ clinic will work in the future (how the patient can get the most out of the visit).
  • Discuss how to handle interim questions — Crisis and Non-urgent (When do you want the patient to call? With whom should they speak (nurse, MD)? What is the best way to communicate?
  • Let patient know if there is a specific urgent care/ER/hospital in which the physician works and assess if it is covered by the patient’s insurance.
  • Assess need for/willingness for any additional education.

References

1: Bondy, C.A., 2007 Care of Girls and Women with Turner Syndrome: A Guideline of the Turner Syndrome Study Group. JCEM 92:10-25.