Searchable abstracts of presentations at key conferences in endocrinology
Endocrine Abstracts (2022) 81 OC8.5 | DOI: 10.1530/endoabs.81.OC8.5

ECE2022 Oral Communications Oral Communications 8: Calcium and Bone (6 abstracts)

Key4OI: Development and implementation of a standard set of outcome measures for osteogenesis imperfecta

Anton Franken 1 & Dagmar Mekking 2


1Isala Hospital Zwolle, Endocrinology, Netherlands; 2Care4brittlebones, Netherlands


Key4OI : Development and implementation of a Standard set of Outcome measures for Osteogenesis Imperfecta. Osteogenesis Imperfecta (OI) is a genetic disorder also known as ‘brittle bone disease’. The clinical manifestation of OI shows a wide variation. Therefore, care for patients with OI requires an interdisciplinary approach. The effectiveness of particular interventions and treatment protocols of interdisciplinary teams is not clear due to a non-standardized and wide variation of patient outcomes thus making the comparison of outcome measures available in the literature difficult. In 2018 the Key4OI project was started, an international interdisciplinary working group of 27 experts used a consensus-driven modified Delphi approach to develop a set of global outcome measures for patients with OI. More than 400 different outcome measures were identified in our literature search. After three Delphi rounds, 24 domains were selected. After the focus group sessions with members from OI community, the number of domains were reduced to 15. A consensus was reached on the measuring instruments to cover these domains for both children and adults. The entire approach was in line with the International Consortium for Health Outcomes Measurement ICHOM methodology. The Key4OI project resulted in a standard set of outcome measures focused on the needs and wishes of individuals with OI and their families. This outcome set will enable healthcare teams and systems to compare and to improve their care pathways and quality of care world. Implementation was started in 5 different countries (6 hospitals): China, Norway, USA, Canada and the Netherlands (Isala Zwolle and UMC Utrecht). Various other countries will start implementation in 2022. Anton Franken, D. Mekking on behalf of the international Key4OI expertgroup.

Volume 81

European Congress of Endocrinology 2022

Milan, Italy
21 May 2022 - 24 May 2022

European Society of Endocrinology 

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