OBJECTIVES: 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, bone fragility, and variable secondary features. Here we present findings on access challenges relating to consumables and services in adults with OI across the EU5 and Nordic countries.

METHODS: Together with the Osteogenesis Imperfecta Federation Europe and the Osteogenesis Imperfecta Foundation (USA) we developed an international survey in eight languages (fielded online July–September 2021). The survey was open to adults (aged ≥18 years) or adolescents (aged ≥12–17 years) with OI, caregivers (with or without OI) of individuals with OI and other close relatives; overall 2,278 individuals participated. Non-English language responses were translated into English. Data were cleaned, coded, and analysed using Microsoft Excel.

RESULTS: Across the EU5 and Nordics, 632 adults with OI (non-caregivers) participated (Spain, n=124; Italy, n=76; France, n=75; Germany, n=126; UK, n=126; Sweden, n=16; Finland, n=18; Norway, n=53; Denmark, n=18). Up to 56% of respondents who said they needed a queried consumable or service experienced access difficulty. Challenges were reported by 29–53% of individuals needing manual wheelchairs in the UK and France; 25–64% of individuals needing powered wheelchairs in Finland, Germany, Italy, France and the UK; 32–45% of individuals needing hearing aids in Spain, France, Italy and the UK; and 10–46% of individuals needing dental work across all countries. Access difficulties to home-, work- and vehicle modifications, support assistance, and walking- and breathing aids were also commonly reported. Reasons for access challenges included lack of information, no provision of resources by healthcare providers, and affordability.

CONCLUSIONS: Individuals across Europe face difficulties in accessing consumables and services for managing their OI. Identifying country-specific barriers and support needs will help shape future policy making.