Healthcare perceptions and concerns among individuals with osteogenesis imperfecta and their caregivers in Germany

Introduction: The IMPACT Survey explored self-reported experiences of the clinical, humanistic, and economic impact of osteogenesis imperfecta (OI), a rare hereditary connective tissue disorder associated with low bone mass, increased bone fragility and variable secondary features. Here we present findings on perceptions and concerns associated with healthcare among adults with OI and caregivers (CG) of individuals with OI in Germany.

Methods: The IMPACT Survey was developed by the Osteogenesis Imperfecta Federation Europe (OIFE), the Osteogenesis Imperfecta Foundation (OIF) and an international steering committee of OI experts. Aimed at adults with OI (presented here), CGs (with or without OI; both presented here), adolescents with OI, and relatives, it was fielded online from July–September 2021 in eight languages. The OIFE and OIF drove global recruitment, with the Deutsche OI-Gesellschaft (DOIG) leading in Germany. Responses were translated into English. Microsoft Excel was used to clean, code, validate and analyse data. Descriptive statistics for the German cohort are presented here.

Results: Among 194 German adult respondents, there were 134 adults with OI (including 8 CGs and 126 non-CGs) and 60 CGs without OI. While many individuals felt that care was continuous (44% of adults with OI; 53% of CGs without OI), at least half of the respondents (49% of adults with OI; 66% of CGs without OI) felt the need to coordinate care for themselves or individuals in their care. More CGs without OI (70%) reported receiving sufficient information about OI compared with adults with OI (51%); however, similar proportions of respondents felt that doctors and other healthcare professionals did not understand OI (29% of adults with OI; 22% of CGs without OI). Furthermore, a lower proportion of adults with OI (32%) felt that doctors and other healthcare professionals understood their needs and concerns compared with CGs without OI (50%). Whilst individuals with and without OI shared several worries, a higher proportion of adults with OI worried about access to doctors (82%) and care (76%) compared with CGs without OI (64% and 45%, respectively). Notably, less than a quarter of adults with OI (15%) felt supported in their transition from paediatric to adult care. This was emphasised by the fact that 74% of CGs without OI expressed worry about how individuals in their care would transition from paediatric to adult in the future.

Discussion: A significant disparity in the perception of the quality of healthcare was observed when comparing adults with OI and CGs without OI. Insights from the IMPACT Survey emphasise the need for a more coordinated healthcare pathway to address specific concerns and elevate the overall quality of care for individuals with OI.

Keywords: osteogenesis imperfecta, patient reported outcomes, perceptions of healthcare, worries and concerns

Korrespondenzadresse: Oliver Semler, University of Cologne, Faculty of Medicine and University Hospital Cologne, Department of Pediatrics, Albertus-Magnus-Platz, 50923 Germany, Germany, E-Mail: [e-mail]

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Artikel online veröffentlicht:
13. März 2024