Transition Care for Young Persons with Rare Bone Mineral Conditions: A Consensus Recommendation from the ECTS Rare Bone Disease Action Group

Grasemann, Corinna; Wernsmann, Joline; Appelman-Dijkstra, Natasha M.; Morgan, Chloe; Sylvest, Tenna Toft; Raimann, Adalbert; Siggelkow, Heide; Lems, Willem F.; Turan, Serap; Zillikens, M. Carola; Wekre, Lena Lande; Alves, Inês; Solal, M. Cohen; Yavropoulou, Maria P.; Clunie, Gavin

doi:10.1007/s00223-025-01382-w

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Transition Care for Young Persons with Rare Bone Mineral Conditions: A Consensus Recommendation from the ECTS Rare Bone Disease Action Group

Corinna Grasemann

, Joline Wernsmann, Natasha M. Appelman-Dijkstra

, Chloe Morgan, Tenna Toft Sylvest, Adalbert Raimann, Heide Siggelkow

, Willem F. Lems

, Serap Turan

, M. Carola Zillikens

, Lena Lande Wekre, Inês Alves, M. Cohen Solal

, Maria P. Yavropoulou, Gavin Clunie

Calcified Tissue International, Volume: 116, Issue: 1, Start page: 73

Swansea University Author: Chloe Morgan

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DOI (Published version): 10.1007/s00223-025-01382-w

Abstract

Transition care (TC) is crucial for young persons with rare bone and mineral conditions (RBMCs) as they move from pediatric to adult healthcare. Effective TC prevents care disruptions and supports medical and psychosocial needs. However, gaps in communication, a shortage of adult RBMC specialists, a...

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Published in:	Calcified Tissue International
ISSN:	1432-0827
Published:	Springer Nature 2025
Online Access:	Check full text
URI:	https://cronfa.swan.ac.uk/Record/cronfa69493

first_indexed	2025-05-12T08:35:54Z
last_indexed	2025-05-13T09:11:34Z
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This study aimed to develop consensus-based recommendations for TC in RBMCs, focusing on best practices for seamless transition and patient empowerment. A two-round Delphi survey (September 2023–April 2024) was conducted among European RBMC experts, including 3 pediatric and 8 adult clinicians and 3 patient representatives from the European Calcified Tissue Society (ECTS). The panel formulated and refined statements through literature review and iterative scoring. Statements reaching ≥ 70% consensus were retained. A total of 81 statements were finalized across seven domains: initiation and planning, TC requirements, patient empowerment, organization and communication, service infrastructure and funding, and clinical care. Consensus was achieved on 64 out of 81 statements, with strong agreement on general and RBMC-specific recommendations. Key priorities included structured coordination among healthcare providers and a patient-centered approach that fosters self-advocacy and self-management. This Delphi consensus provides a structured framework for TC in young persons with RBMCs, emphasizing multidisciplinary care and patient empowerment. 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spelling	2025-05-12T09:41:20.5248470 v2 69493 2025-05-12 Transition Care for Young Persons with Rare Bone Mineral Conditions: A Consensus Recommendation from the ECTS Rare Bone Disease Action Group c2b1b0a863e117338f4b80cf88f0234e Chloe Morgan Chloe Morgan true false 2025-05-12 MDA Transition care (TC) is crucial for young persons with rare bone and mineral conditions (RBMCs) as they move from pediatric to adult healthcare. Effective TC prevents care disruptions and supports medical and psychosocial needs. However, gaps in communication, a shortage of adult RBMC specialists, and challenges in navigating adult healthcare necessitate standardized care. This study aimed to develop consensus-based recommendations for TC in RBMCs, focusing on best practices for seamless transition and patient empowerment. A two-round Delphi survey (September 2023–April 2024) was conducted among European RBMC experts, including 3 pediatric and 8 adult clinicians and 3 patient representatives from the European Calcified Tissue Society (ECTS). The panel formulated and refined statements through literature review and iterative scoring. Statements reaching ≥ 70% consensus were retained. A total of 81 statements were finalized across seven domains: initiation and planning, TC requirements, patient empowerment, organization and communication, service infrastructure and funding, and clinical care. Consensus was achieved on 64 out of 81 statements, with strong agreement on general and RBMC-specific recommendations. Key priorities included structured coordination among healthcare providers and a patient-centered approach that fosters self-advocacy and self-management. This Delphi consensus provides a structured framework for TC in young persons with RBMCs, emphasizing multidisciplinary care and patient empowerment. Future studies should assess the feasibility and impact of these guidelines across diverse healthcare systems. Journal Article Calcified Tissue International 116 1 73 Springer Nature 1432-0827 Transition; Rare bone mineral conditions; Fragility; Rare disease; XLH; OI; Achondroplasia 9 5 2025 2025-05-09 10.1007/s00223-025-01382-w COLLEGE NANME Development and Engagement COLLEGE CODE MDA Swansea University Another institution paid the OA fee Open Access funding enabled and organized by Projekt DEAL. 2025-05-12T09:41:20.5248470 2025-05-12T09:25:18.0671495 Faculty of Medicine, Health and Life Sciences School of Health and Social Care - Public Health Corinna Grasemann 0000-0003-1793-4603 1 Joline Wernsmann 2 Natasha M. Appelman-Dijkstra 0000-0001-5035-127X 3 Chloe Morgan 4 Tenna Toft Sylvest 5 Adalbert Raimann 6 Heide Siggelkow 0000-0002-8366-8625 7 Willem F. Lems 0000-0002-6885-3953 8 Serap Turan 0000-0002-5172-5402 9 M. Carola Zillikens 0000-0001-9186-3423 10 Lena Lande Wekre 11 Inês Alves 12 M. Cohen Solal 0000-0002-8582-8258 13 Maria P. Yavropoulou 14 Gavin Clunie 0000-0001-8411-0685 15 69493__34239__9274430afa4f4f60aab324bad2409948.pdf 223_2025_Article_1382.pdf 2025-05-12T09:25:18.0665239 Output 758418 application/pdf Version of Record true © The Author(s) 2025. This article is licensed under a Creative Commons Attribution 4.0 International License (CC BY). true eng http://creativecommons.org/licenses/by/4.0/
title	Transition Care for Young Persons with Rare Bone Mineral Conditions: A Consensus Recommendation from the ECTS Rare Bone Disease Action Group
spellingShingle	Transition Care for Young Persons with Rare Bone Mineral Conditions: A Consensus Recommendation from the ECTS Rare Bone Disease Action Group Chloe Morgan
title_short	Transition Care for Young Persons with Rare Bone Mineral Conditions: A Consensus Recommendation from the ECTS Rare Bone Disease Action Group
title_full	Transition Care for Young Persons with Rare Bone Mineral Conditions: A Consensus Recommendation from the ECTS Rare Bone Disease Action Group
title_fullStr	Transition Care for Young Persons with Rare Bone Mineral Conditions: A Consensus Recommendation from the ECTS Rare Bone Disease Action Group
title_full_unstemmed	Transition Care for Young Persons with Rare Bone Mineral Conditions: A Consensus Recommendation from the ECTS Rare Bone Disease Action Group
title_sort	Transition Care for Young Persons with Rare Bone Mineral Conditions: A Consensus Recommendation from the ECTS Rare Bone Disease Action Group
author_id_str_mv	c2b1b0a863e117338f4b80cf88f0234e
author_id_fullname_str_mv	c2b1b0a863e117338f4b80cf88f0234e_***_Chloe Morgan
author	Chloe Morgan
author2	Corinna Grasemann Joline Wernsmann Natasha M. Appelman-Dijkstra Chloe Morgan Tenna Toft Sylvest Adalbert Raimann Heide Siggelkow Willem F. Lems Serap Turan M. Carola Zillikens Lena Lande Wekre Inês Alves M. Cohen Solal Maria P. Yavropoulou Gavin Clunie
format	Journal article
container_title	Calcified Tissue International
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container_start_page	73
publishDate	2025
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issn	1432-0827
doi_str_mv	10.1007/s00223-025-01382-w
publisher	Springer Nature
college_str	Faculty of Medicine, Health and Life Sciences
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description	Transition care (TC) is crucial for young persons with rare bone and mineral conditions (RBMCs) as they move from pediatric to adult healthcare. Effective TC prevents care disruptions and supports medical and psychosocial needs. However, gaps in communication, a shortage of adult RBMC specialists, and challenges in navigating adult healthcare necessitate standardized care. This study aimed to develop consensus-based recommendations for TC in RBMCs, focusing on best practices for seamless transition and patient empowerment. A two-round Delphi survey (September 2023–April 2024) was conducted among European RBMC experts, including 3 pediatric and 8 adult clinicians and 3 patient representatives from the European Calcified Tissue Society (ECTS). The panel formulated and refined statements through literature review and iterative scoring. Statements reaching ≥ 70% consensus were retained. A total of 81 statements were finalized across seven domains: initiation and planning, TC requirements, patient empowerment, organization and communication, service infrastructure and funding, and clinical care. Consensus was achieved on 64 out of 81 statements, with strong agreement on general and RBMC-specific recommendations. Key priorities included structured coordination among healthcare providers and a patient-centered approach that fosters self-advocacy and self-management. This Delphi consensus provides a structured framework for TC in young persons with RBMCs, emphasizing multidisciplinary care and patient empowerment. Future studies should assess the feasibility and impact of these guidelines across diverse healthcare systems.
published_date	2025-05-09T05:28:46Z
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Transition Care for Young Persons with Rare Bone Mineral Conditions: A Consensus Recommendation from the ECTS Rare Bone Disease Action Group

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