The role of transitioning a child to adult care is substantive to a women’s long-term health and well-being. Adult women with Turner Syndrome require careful medical follow-up. Early medical intervention may decrease incidence of disease and death and improve the quality of life of women with Turner Syndrome.
The transition from pediatric to adult healthcare supervision of women with Turner Syndrome should occur at the completion of puberty, usually by 18 years of age. Ideally, the process of transition should take place over a period of 2–3 years during the late pubertal period and should involve a gynecologist with expertise in fertility issues.
Adult women with TS should undergo a comprehensive medical evaluation due to the increased risk of a number of common diseases. All medical problems present during childhood should be followed in adults (e.g. CHD, hearing loss, skeletal problems, and dental and ophthalmological abnormalities). Annual medical history and general physical evaluation should be performed, including blood pressure, heart auscultation, clinical evaluation of thyroid size and function, breast examination, and Pap smear.
As in children, regular otological examination is important, as about 15% of adults with TS experience significant hearing loss, which may be conductive and/or sensorineural.
Below you will find Turner syndrome Guidelines Transition from Pediatric to Adult Follow Up. Print this important page to help guide your medical journey.
Turner Syndrome Guidelines
Transition Pediatric – Adult Follow Up
Childhood Follow Up – Yearly:
- Physical exam, including height, weight, blood pressure, heart, lymphedema
- In infancy, hip dislocation screening
- Ear infections/Hearing screening
- Scoliosis/orthopedic evaluation
- Around age 2, vision screening
- Thyroid and liver function tests
- Psychosocial evaluation for development and behavior, school performance
- Pediatric dental specialist by age 2, orthodontic evaluation no later than age
- Dermatology follow up for nevi
- Cardiac MRI at age 9
- Endocrine evaluation for pubertal delay
- Nutritional evaluation, including celiac screening, and education
As above with possible added counseling for sexual issues
Transition should occur over a 2-3 year period. Pediatric/pediatric endocrinology care should be transferred to and managed by either a family practitioner or adult/reproductive endocrinologist, plus cardiologist, audiologist, ENT, GYN, psychologist.
Adult – Yearly:
- Dietary/exercise counseling for prevention of obesity
- Estrogen treatment, evaluation of ovarian function, family planning counseling
- Routine pelvic/pap smear as indicated
- Bone density monitoring
- Hypertension/cardiology monitoring
- Opthalmologic exam
- Fasting glucose, HgbA1C
Adult – Every 2 Years:
- Hgb/CBC, IGA, EMA, Vitamin D level
- Thyroid function tests (TSH, Total/free T4, antibodies)
- Liver and kidney function tests (BUN, creatinine, liver enzymes)
- Lipid profile and glucose monitoring
- ENT/audiology every 1-5 years
- Psychosocial evaluation if needed
Adult – Every 3-5 Years
1. DEXA scan (sooner if osteopenia/osteoporosis develop). Small size may lead to underestimation of bone density
Adult – Every 5-10 Years
- Renal ultrasound
- Cardiac MRI (especially important to monitor, if patient experiences chest pain, should go to ER immediately to assess for aortic rupture)
To read more about transition from pediatric to adult care, scroll to page(s) G31-G33 in the Clinical Guidelines found here: https://turnersyndromefoundation.org/wp-content/uploads/2017/07/Clinical-Practice-Guideslines-International-G1-2017.full_.pdf
View some of the frequently asked questions about transition of care Learn More