The IMPACT survey has shed light on the extensive ramifications of osteogenesis imperfecta (OI) on patients, their families, and the broader community. This comprehensive analysis delves into the financial, clinical, and personal tolls faced by those living with OI, highlighting the substantial strain on healthcare resources and individual productivity. The survey’s findings underscore the significant economic impact of OI and pave the way for future research into tailored healthcare strategies.
Survey Methodology and Demographics
The IMPACT survey, conducted between July and September 2021, was an international effort encompassing respondents from multiple regions and languages. Targeting individuals aged 12 and above with OI, along with their caregivers and close relatives, the survey covered various domains such as demographics, socioeconomic factors, clinical characteristics, treatment patterns, quality of life, and health economics. Key demographic insights reveal a predominant participation from females (70%) and Europeans (63%), with a median age of 43 years.
Healthcare Resource Utilization and Economic Burden
Within a 12-month period, adults with OI reported frequent interactions with diverse healthcare professionals, with 66% visiting hospitals and 33% seeking emergency department services. On average, participants underwent eight diagnostic tests annually and had a history of approximately 11.8 surgeries. The use of various medical consumables and services ranged significantly, with 18-82% of adults utilizing these resources over a year. Importantly, 58% were employed, but nearly one-third reported absenteeism, reflecting the condition’s impact on productivity.
The health economic domain highlighted significant out-of-pocket expenses, averaging €191 over four weeks. Factors such as gender, severity of OI, and incidence of fractures were linked to higher economic burdens, emphasizing the multifaceted challenges faced by those with OI.
Key Inferences
– The majority of OI patients regularly require a wide range of healthcare services, indicating a consistent demand on healthcare resources.
– High rates of surgical interventions suggest a persistent need for specialized medical care.
– The economic burden of OI is substantial, with significant out-of-pocket expenses and productivity losses impacting both patients and broader society.
– Females and those with severe OI experience greater economic hardship, highlighting the need for targeted support and interventions.
The IMPACT survey provides valuable insights into the extensive cost of illness associated with osteogenesis imperfecta, affecting individuals, healthcare systems, and society at large. Future analyses are expected to explore country-specific economic impacts and the overall healthcare journey of those with OI, offering a more nuanced understanding of the condition.
Original Article: Orphanet J Rare Dis. 2024 Jun 3;19(1):222. doi: 10.1186/s13023-024-03218-6.
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