Turner Syndrome Research Today is a free monthly online journal that collates and summarizes the latest research about Turner Syndrome, including details on symptoms, causes, chromosomes, prognosis.

Truth-telling and Turner Syndrome: the importance of diagnostic disclosure.

Sutton EJ, Young J, McInerney-Leo A, Bondy CA, Gollust SE, Biesecker BB

National Human Genome Research Institute and the National Institute of Child Health and Human Development, National Institutes of Health, Bethesda, MD 20892-1852, USA.

OBJECTIVE: A targeted analysis with transcript data from previous research was designed to study the perceived effects of secret-keeping on individuals with Turner syndrome (TS). STUDY DESIGN: Girls and women (n = 97) and 21 parents participated in the initial interview study. Transcripts were coded and analyzed for constructs related to secret-keeping. RESULTS: Thirty percent of participants spontaneously mentioned that their health care providers (HCP) or parents had withheld all or part of their TS diagnosis. Of those, 15 individuals were not informed of the infertility component of their diagnosis. Individuals reporting secret-keeping were more likely to have had a negative perception of the HCP's role in the disclosure process compared with those participants who did not report that a secret had been kept (P < .025). CONCLUSION: The prevalence of secret-keeping within this sample population suggests it is likely an existing concern in the greater TS population. How HCPs disclose a TS diagnosis may affect whether secrets are kept. Conversely, secret-keeping may result in a negative disclosure experience. These observations suggest the need for interventions aimed at helping HCPs disclose health-related information to parents and their children in a timely, caring, and sensitive manner.

Published 20 January 2006 in J Pediatr, 148(1): 102-7.
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