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 funding sources relating to healthcare, OI 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) reported cost coverage of healthcare, OI consumables and services (Spain, n=124; Italy, n=76; France, n=75; Germany, n=126; UK, n=126; Sweden, n=16; Norway, n=53; Finland, n=18; Denmark, n=18). Public funding for healthcare (including national healthcare provisions and public statutory insurance) was reported by a large proportion of respondents (0–94%), alongside private, out of pocket, employer and charity funding (2–43%; 0–29%; 0–39%; 0–1%, respectively). OI consumables and services were often paid for out of pocket, with dental care being the most common expense. Respondents in Italy had a notably higher median total out of pocket spend in four weeks (£129.10) compared with other countries (UK, £13.00; France, £30.10; Spain, £51.60; Germany, £43.00; Sweden, £38.10; Norway, £0.80; Finland, £25.80; Denmark, £11.60).

CONCLUSIONS: Although public funding commonly covers healthcare costs for individuals with OI, including consumables and services, out of pocket expenses are frequent and vary across the EU5 and Nordic countries.