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Navigating Disrupted Puberty: Development and Evaluation of a Mobile-Health Transition Passport for Klinefelter Syndrome

Dwyer, A. A., Heritier, V., Llahana, S. ORCID: 0000-0002-3606-5370 , Edelman, L., Papadakis, G. E., Vaucher, L., Pitteloud, N. & Hauschild, M. (2022). Navigating Disrupted Puberty: Development and Evaluation of a Mobile-Health Transition Passport for Klinefelter Syndrome. Frontiers in Endocrinology, 13, 909830. doi: 10.3389/fendo.2022.909830


Klinefelter syndrome (KS) is the most common aneuploidy in men and has long-term sequelae on health and wellbeing. KS is a chronic, lifelong condition and adolescents/young adults (AYAs) with KS face challenges in transitioning from pediatric to adult-oriented services. Discontinuity of care contributes to poor outcomes for health and wellbeing and transition programs for KS are lacking. We aimed to develop and test a mobile health tool (KS Transition Passport) to educate patients about KS, encourage self-management and support successful transition to adult-oriented care. First, we conducted a retrospective chart review and patient survey to examine KS transition at a university hospital. Second, we conducted a systematic scoping review of the literature on AYAs with KS. Last, we developed a mobile health transition passport and evaluated it with patient support groups. Participants evaluated the tool using the System Usability Scale and Patient Education Materials Assessment Tool (PEMAT). Chart review identified 21 AYAs diagnosed between 3.9-16.8 years-old (median 10.2 years). The survey revealed only 4/10 (40%) were on testosterone therapy and fewer (3/10, 30%) had regular medical care. The scoping review identified 21 relevant articles highlighting key aspects of care for AYAs with KS. An interprofessional team developed the mobile-health KS transition passport using an iterative process. Support group members (n=35) rated passport usability as ‘ok’ to ‘good’ (70 ± 20, median 73.5/100). Of PEMAT dimensions, 5/6 were deemed ‘high quality’ (86-90/100) and participants knew what to do with the information (actionability = 83/100). In conclusion, many patients with KS appear to have gaps in transition to adult-oriented care. Iterative development of a KS transition passport produced a mobile health tool that was usable, understandable and had high ratings for actionability.

Publication Type: Article
Additional Information: Copyright © 2022 Dwyer, Héritier, Llahana, Edelman, Papadakis, Vaucher, Pitteloud and Hauschild. This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY). The use, distribution or reproduction in other forums is permitted, provided the original author(s) and the copyright owner(s) are credited and that the original publication in this journal is cited, in accordance with accepted academic practice. No use, distribution or reproduction is permitted which does not comply with these terms.
Publisher Keywords: adolescent, continuity of care, puberty, Klinefelter syndrome (KS), transition
Subjects: B Philosophy. Psychology. Religion > BF Psychology
R Medicine > RC Internal medicine
R Medicine > RT Nursing
Departments: School of Health & Psychological Sciences > Nursing
Text - Published Version
Available under License Creative Commons Attribution.

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