Rare Disease Spina Bifida

Abstract

<strong>Background:</strong> Spina bifida (SB), as a rare non-curable disease with comorbidities, requires multi-professional collaboration. Less is known about patient journeys, medical costs, health-related quality of life, and their correlation. The less existing publications date back about ten years. Thus, the current cost developments in the health care system due to constantly specialized therapies are not reflected. We aimed to elucidate the medical costs of SB patients in Germany to create transparency by recording and analyzing the treatment paths and associated costs. To gain access to relevant data, patients were asked to transmit their individual insurance data, as a Research Data Center (FDZ) for health data is not yet operational in Germany. <br /> <strong>Results:</strong> Although the regulations require health insurance companies to provide patients with a report of medical expenses upon request, the reality is different. Access to data on treatment paths and associated costs was limited by incomplete information provided by health insurers. We could show that the illness costs related to SB are above average per inhabitant in Germany. The highest proportion of costs was documented for remedies and medical aids. Costs for urinary incontinence aids accounted for the largest share. The data showed that cost of illness is significantly higher for children than for adults. <br /> <strong>Conclusion:</strong> While a reasonable estimate of costs related to SB was established with this study, it became also clear that there are significant data gaps as a result of lacking transparency of the German healthcare system. Concerning cost-of-illness analysis and its impact on the healthcare system, researchers have the task to provide evidence as a basis for recommendations that ensure fairness and equitable sharing of health resources. Our results highlight the urgent need for better transparency regarding health service costs for both individual policy holders as well as researchers aiming at elucidating the cost effectiveness and impact on health-related quality of life of medical interventions and services in Germany. The recent instatement of a central Research Data Center (FDZ) is an important step in this direction, especially in the context of insufficient data quality provided by the German statutory health insurance companies to individual policy holders observed in this study.