Background: Difficulties in transition of adolescent Turner Syndrome (TS) patients to adult health care has been reported in many studies.
Objective and hypotheses: We conducted a medical and psychological follow-up of adult patients with Turner Syndrome which had been treated at our tertiary pediatric endocrine centre.
Method: We screened for expected comorbidities and provided a questionnaire asking for current medical care. Furthermore, we assessed quality of life with the SF36v2 forms, and general mood with the Beck-Depression Inventar.
Results: In total of 9 out of 64 patients, aged 21 to 43, agreed to participate in the study. Almost 20% had not been treated with growth hormone during pediatric care. About 40% of the participants did not consult a general practitioner after transition and only 15% were seen by an endocrinologist or a cardiologist regularly. About 23% are not in gynaecological follow-up. Only 80% take oestrogen substitution, with only 43% of these in an adequate dosage. The QoL Scores were surprisingly good for both mental and physical health when compared to the reference population. We did not observe any correlation between these scores and final height, age or comorbidities. Three patients were diagnosed with depression. Hypertension, diabetes mellitus type II, aortal dilatation or coeliac disease were newly diagnosed in nine participants.
Conclusion: The surprising results might indicate a tendency to minimalize the symptoms and underestimate the importance of regular follow-up in adult Turner Syndrome patients. This, together with a suboptimal setting of the adult care leads to a large rate of lost to follow-up, increasing the risk for untreated comorbidities and additional costs for the health care system. On the basis of the suggestions of our adult patients, we propose a tight collaboration with a specialized endocrine gynaecologist from late adolescence complemented by an adult endocrinologist. Information about health issues and development of health care autonomy is central.
10 - 12 Sep 2016
European Society for Paediatric Endocrinology