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

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 contrib...

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Autores principales: Dwyer, Andrew A., Héritier, Vanessa, Llahana, Sofia, Edelman, Lauren, Papadakis, Georgios E., Vaucher, Laurent, Pitteloud, Nelly, Hauschild, Michael
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Frontiers Media S.A. 2022
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9264386/
https://www.ncbi.nlm.nih.gov/pubmed/35813640
http://dx.doi.org/10.3389/fendo.2022.909830
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author Dwyer, Andrew A.
Héritier, Vanessa
Llahana, Sofia
Edelman, Lauren
Papadakis, Georgios E.
Vaucher, Laurent
Pitteloud, Nelly
Hauschild, Michael
author_facet Dwyer, Andrew A.
Héritier, Vanessa
Llahana, Sofia
Edelman, Lauren
Papadakis, Georgios E.
Vaucher, Laurent
Pitteloud, Nelly
Hauschild, Michael
author_sort Dwyer, Andrew A.
collection PubMed
description 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.
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spelling pubmed-92643862022-07-09 Navigating Disrupted Puberty: Development and Evaluation of a Mobile-Health Transition Passport for Klinefelter Syndrome Dwyer, Andrew A. Héritier, Vanessa Llahana, Sofia Edelman, Lauren Papadakis, Georgios E. Vaucher, Laurent Pitteloud, Nelly Hauschild, Michael Front Endocrinol (Lausanne) Endocrinology 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. Frontiers Media S.A. 2022-06-24 /pmc/articles/PMC9264386/ /pubmed/35813640 http://dx.doi.org/10.3389/fendo.2022.909830 Text en Copyright © 2022 Dwyer, Héritier, Llahana, Edelman, Papadakis, Vaucher, Pitteloud and Hauschild https://creativecommons.org/licenses/by/4.0/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.
spellingShingle Endocrinology
Dwyer, Andrew A.
Héritier, Vanessa
Llahana, Sofia
Edelman, Lauren
Papadakis, Georgios E.
Vaucher, Laurent
Pitteloud, Nelly
Hauschild, Michael
Navigating Disrupted Puberty: Development and Evaluation of a Mobile-Health Transition Passport for Klinefelter Syndrome
title Navigating Disrupted Puberty: Development and Evaluation of a Mobile-Health Transition Passport for Klinefelter Syndrome
title_full Navigating Disrupted Puberty: Development and Evaluation of a Mobile-Health Transition Passport for Klinefelter Syndrome
title_fullStr Navigating Disrupted Puberty: Development and Evaluation of a Mobile-Health Transition Passport for Klinefelter Syndrome
title_full_unstemmed Navigating Disrupted Puberty: Development and Evaluation of a Mobile-Health Transition Passport for Klinefelter Syndrome
title_short Navigating Disrupted Puberty: Development and Evaluation of a Mobile-Health Transition Passport for Klinefelter Syndrome
title_sort navigating disrupted puberty: development and evaluation of a mobile-health transition passport for klinefelter syndrome
topic Endocrinology
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9264386/
https://www.ncbi.nlm.nih.gov/pubmed/35813640
http://dx.doi.org/10.3389/fendo.2022.909830
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