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...
| Main Authors: | , , , , , , , |
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| Format: | Article |
| Language: | English |
| Published: |
Frontiers Media S.A.
2022-06-01
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| Series: | Frontiers in Endocrinology |
| Subjects: | |
| Online Access: | https://www.frontiersin.org/articles/10.3389/fendo.2022.909830/full |
| _version_ | 1827990524308488192 |
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| author | Andrew A. Dwyer Andrew A. Dwyer Vanessa Héritier Sofia Llahana Lauren Edelman Georgios E. Papadakis Laurent Vaucher Nelly Pitteloud Michael Hauschild |
| author_facet | Andrew A. Dwyer Andrew A. Dwyer Vanessa Héritier Sofia Llahana Lauren Edelman Georgios E. Papadakis Laurent Vaucher Nelly Pitteloud Michael Hauschild |
| author_sort | Andrew A. Dwyer |
| collection | DOAJ |
| 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. |
| first_indexed | 2024-04-10T00:36:36Z |
| format | Article |
| id | doaj.art-acad8c1b5aca4a8eab4197f653260854 |
| institution | Directory Open Access Journal |
| issn | 1664-2392 |
| language | English |
| last_indexed | 2024-04-10T00:36:36Z |
| publishDate | 2022-06-01 |
| publisher | Frontiers Media S.A. |
| record_format | Article |
| series | Frontiers in Endocrinology |
| spelling | doaj.art-acad8c1b5aca4a8eab4197f6532608542023-03-14T14:46:41ZengFrontiers Media S.A.Frontiers in Endocrinology1664-23922022-06-011310.3389/fendo.2022.909830909830Navigating Disrupted Puberty: Development and Evaluation of a Mobile-Health Transition Passport for Klinefelter SyndromeAndrew A. Dwyer0Andrew A. Dwyer1Vanessa Héritier2Sofia Llahana3Lauren Edelman4Georgios E. Papadakis5Laurent Vaucher6Nelly Pitteloud7Michael Hauschild8William F. Connell School of Nursing, Boston College, Chestnut Hill, MA, United StatesEndocrinology, Diabetes & Metabolism Service of the Department of Medicine, Lausanne University Hospital Centre Hospitalier Universitaire Vaudois (CHUV), Lausanne, SwitzerlandPediatric Endocrinology, Diabetes and Obesity Unit, Department of Women-Mother-Child, Lausanne University Hospital Centre Hospitalier Universitaire Vaudois (CHUV), Lausanne, SwitzerlandSchool of Health and Psychological Sciences, City University of London, London, United KingdomWilliam F. Connell School of Nursing, Boston College, Chestnut Hill, MA, United StatesEndocrinology, Diabetes & Metabolism Service of the Department of Medicine, Lausanne University Hospital Centre Hospitalier Universitaire Vaudois (CHUV), Lausanne, SwitzerlandReproductive Medicine Unit, Department of Obstetrics and Gynecology, Lausanne University Hospital Centre Hospitalier Universitaire Vaudois Centre Hospitalier Universitaire Vaudois (CHUV), Lausanne, SwitzerlandEndocrinology, Diabetes & Metabolism Service of the Department of Medicine, Lausanne University Hospital Centre Hospitalier Universitaire Vaudois (CHUV), Lausanne, SwitzerlandPediatric Endocrinology, Diabetes and Obesity Unit, Department of Women-Mother-Child, Lausanne University Hospital Centre Hospitalier Universitaire Vaudois (CHUV), Lausanne, SwitzerlandKlinefelter 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.https://www.frontiersin.org/articles/10.3389/fendo.2022.909830/fulladolescentcontinuity of carepubertyKlinefelter syndrome (KS)transition |
| spellingShingle | Andrew A. Dwyer Andrew A. Dwyer Vanessa Héritier Sofia Llahana Lauren Edelman Georgios E. Papadakis Laurent Vaucher Nelly Pitteloud Michael Hauschild Navigating Disrupted Puberty: Development and Evaluation of a Mobile-Health Transition Passport for Klinefelter Syndrome Frontiers in Endocrinology adolescent continuity of care puberty Klinefelter syndrome (KS) transition |
| 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 | adolescent continuity of care puberty Klinefelter syndrome (KS) transition |
| url | https://www.frontiersin.org/articles/10.3389/fendo.2022.909830/full |
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