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Turner Syndrome (TS) Transition Care Questionnaire
for Healthcare Professionals

Dear Colleague,

We invite you to participate in this survey on transition care* for patients with Turner syndrome (TS).

The aim of this project is to gain a deeper understanding of current practices, challenges, and needs in the transition of patients with TS from pediatric to adult care. Your responses will help identify challenges and gaps in the process as well as factors that support successful transition. The insights will form the basis for developing improved, evidence-based transition models.
Voluntary participation: You may choose not to answer any question or to withdraw from the survey at any time without consequence.
Confidentiality: Responses are anonymous unless you choose to provide your name and affiliation to be acknowledged as a co-investigator (co-author).
Completing the survey will take less than 15 minutes.
Use of data: All responses will be analyzed collectively and used solely for scientific and educational purposes.

We greatly appreciate your contribution to improving the quality of care for patients with TS.

Thank you for your time and support.

*transition care: a planned, coordinated, and patient-centred process that prepares adolescents and young adults—especially those with chronic or complex conditions—for transfer to adult-oriented healthcare
Your participation is voluntary, and you are under no obligation to take part in this survey. By completing this questionnaire and submitting the information, you consent to the use of this information for the purposes described above.
Q1. I agree to participate in this survey.(Required.)
Q2. In what country do you live?
Professional Background (Q3-Q7)
Q3. Your profession / position, please select all that apply (you may select more than one):
Q4. How many patients with TS do you currently manage per year?
Q5. Which age group of patients with TS is under your care?
Q6. Do you participate in transition care for TS patients?
Transition Planning and Coordination (Q8-Q14)
Q7. Is a structured transition care protocol/checklist/standard operating procedure (SOP) used in your center?
Q8. At what age do you initiate the transition process for patients with TS?
Q9. Are multidisciplinary meetings (MDMs), where decisions are made collectively rather than by single clinician -held to coordinate transition care for patients with TS in your center?
Q10. Is a dedicated transition coordinator (or similar) assigned to your patients with TS in your center?
Q11 a. Are specialists from the adult care center for TS (or those who will assume adult care) involved in the MDM?
Q11 b. Are specialists from all relevant pediatric care centers involved in the MDM?
Q12. Is a primary care physician (pediatrician, internist or GP/family doctor) involved in TS-transition care?
Q13. Which model of transition care exists in your center for patients with TS?
TS Patient Readiness and Education (Q15-Q18)
Q14. Do you assess patient readiness for transition in TS (e.g., using Transition Readiness Assessment Questionnaire-TRAQ or a similar tool)?
Q15. Which issues/topics do you typically discuss during dedicated transition meeting(s) for patients with TS?

(Please select all that apply)
Q16. Do you provide TS patients with a “transition passport”
Q17. Do you provide TS patients with written information – booklets, websites, etc.?
Multidisciplinary Care during transition (Q19-Q25)
Q18. Are TS patients followed by cardiologist during transition in your center?
Q19. Which cardiovascular assessments are performed during transition in your center (select all that apply)
Q20. Is estrogen therapy initiated in collaboration with a gynecologist in your center?
Q21. Are TS patients referred to a gynecologist before or during transition in your center?
Q22. Is there access to adult gynecologists with expertise in TS or complex endocrine conditions in your center?
Q23. Do you adhere to the current (the 2024 guidelines by Gravholt et al.) clinical recommendations for transition care of adolescents with TS. Please select one (for Q23.1-23.14): Yes / No. If No, please provide brief explanatory comments.
Q23.1 Monitoring of weight, height, and pubertal development every 6–12 months
Q23.2 Annual screening for scoliosis
Q23.3 Dental assessment every 6–12 months
Q23.4 Annual measurement of anti-Müllerian hormone (AMH), if premature ovarian insufficiency (POI) has not yet been established
Q23.5 Monitoring of estradiol levels to guide hormone replacement therapy (HRT)
Q23.6 Measurement of thyroid-stimulating hormone (TSH) every 1–2 years and additionally if new symptoms develop
Q23.7 Testing for tissue transglutaminase antibodies (tTG-IgA) and total IgA every 2–5 years and if new symptoms develop
Q23.8 Assessment of liver enzymes (ALT ± AST, GGT, ALP) every 1–2 years
Q23.9 Measurement of HbA1c and/or fasting glucose every 1–2 years and if new symptoms develop
Q23.10 Complete blood count (CBC) every 1–2 years
Q23.11 Lipid profile, according to local recommendations
Q23.12 Audiogram every 2–3 years and if there are concerns regarding hearing
Q23.13 Uterine ultrasound to guide hormone replacement therapy (HRT)
Q23.14 Comprehensive neuropsychological assessment once during adolescence
Q24. Other procedures not indicated for patients under 18 year, but listed in the 2024 guideline. Please, add comments:
Barriers and Improvements (Q26-Q29)
Q25. Are there barriers to effective TS-transition care in your country/health care system?
Q26. If yes, what are the main barriers to effective transition in TS care in your country/health care system? (select all that apply)
Q27. Which specialist typically takes the leadership role in adult TS care in your country/health care system? (you can mark more than one)
Q28. What improvements would you recommend for TS transition care?
Please provide short comment(s)
If you agree to participate non-anonymously and to be considered as a co-investigator (co-author) in this project, please add your affiliation.
Q29. Your name /name of your center/affiliation +email address
Thank you!
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