Transition Care Guidelines

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.

Pediatric and Adult Care Followup 

Reproductive Health

Adult 18+ Access Survey

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Turner Syndrome is largely viewed as a pediatric condition. However, a lifetime of specialized treatment and care is necessary especially for adult women with Turner Syndrome. Turner Syndrome Foundation is introducing a women’s health initiative to bring awareness and education to this area of concern. We need your help to make it a success!

If you are over the age of 18, please take a few minutes to complete a brief questionnaire. Your responses will help us to understand access to adult specialized care in all regions across the country. Whether you can or cannot find accessible care, we want to hear from you!

Your experience with adult Turner Syndrome care is an essential part of this story! Voice your concerns and be an active part of the solution! You can be a hero for young girls who will one day like you need adult care!

Access to Adult Care Survey

Specialized Centers of Care

Physicians familiar with the natural history and unique problems associated with Turner Syndrome should be responsible for organizing adult care. The need for a multidisciplinary approach to the care of both girls and women with TS may require referral to a tertiary center. Such tertiary centers should develop teams with the appropriate experience and expertise in treating patients with Turner Syndrome. These teams may include some of the following: clinical nurse specialist; endocrinologist; cardiologist; nephrologist; fertility specialist; audiological physician; ear, nose, and throat surgeon; plastic surgeon; dentist; and psychologist. In addition, the agenda for such a specialist service should be developed in partnership between medical professionals and Turner support groups.

Specialized centers of care

Emergency Contact Card for Turner Syndrome


The Turner Syndrome Foundation recognizes the transitioning patient's need for protection when facing real world life experiences by having an Emergency Contact Card on ones person that clearly identifies an individual as having Turner Syndrome - especially in times of an emergency. You can order a personalized plastic card for yourself or a loved one as an added layer of protection when venturing away from home.

Learn more about the Emergency Contact Card
 

Resources:
National Institutes of Health Clinical Guideline for Turner Syndrome

Physician Resources

Living with Turner Syndrome

Patient Registry