Dataset Information

The cumulative incidence and trends of rare diseases in South Korea: a nationwide study of the administrative data from the National Health Insurance Service database from 2011-2015.

ABSTRACT:

Background

The burden of rare diseases on society and patients' families has increased in Korea. However, because of the infrequency of rare diseases, there is a lack of resources and information to address these cases and inadequate funding for the management of these patients. We investigated the average annual cumulative incidence of rare diseases and the trends in annual cumulative incidence from 2011 to 2015 in Korea by using nationwide administrative data from the Korean National Health Insurance Service (NHIS) database for patients registered with the co-payment assistance policy for rare and incurable diseases. Annual cumulative incidence per 10,000,000 was calculated as the total number of newly enrolled patients with the Korean Standard Classification of Diseases (KCD)-7 code in the register, divided by the number of residents with health insurance coverage during each year. We employed simple linear regression analysis to evaluate the trends in annual cumulative incidence/10,000,000 population per year for each rare disease.

Results

Overall, national support was provided for patients with 415 KCD codes listed among the targeted rare diseases. The total number of newly enrolled patients with rare diseases was 53,831 in 2011, 52,658 in 2012, 52,955 in 2013, 71,530 in 2014, and 70,559 in 2015. The number of rare diseases with an average annual cumulative incidence of 100/10,000,000 and above was 22 (5.30%), while there were 227 (54.70%) and 148 (35.66%) with an average cumulative incidence between 1/10,000,000 and 100/10,000,000 and less than 1/10,000,000, respectively. The trends in the annual cumulative incidence for 43 rare diseases were statistically significant (p-value < 0.05). The rare diseases for which the incremental trend per year was statistically significant were sarcoidosis (D86, D86.0, D86.1, D86.2, D86.3, D86.8, D86.9), Parkinson's disease (G20), Guillain-Barré syndrome (G61.0), primary biliary cirrhosis (K74.3) and Sjogren's syndrome (M35.0).

Conclusions

The number of rare diseases showing an increasing trend in annual cumulative incidence was higher than the number of diseases showing a decreasing trend in annual cumulative incidence. Given that the definition and diagnosis vary based on country and that there is difficulty in identifying valid cases, further detection strategies are needed to establish the incidence of each rare disease considering the importance of establishing a health policy based on the actual incidence of the targeted diseases.

SUBMITTER: Lim SS

PROVIDER: S-EPMC6379926 | biostudies-literature |

REPOSITORIES: biostudies-literature

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Project description:BackgroundPathologic examinations play an important role in medical services. Until recently, the overall status of pathologic examinations in Korea has not been identified. I conducted a nationwide survey of pathologic examination status using the insurance reimbursements (IRs) dataset from the Health Insurance Review and Assessment Service (HIRA). The aims of this study were to estimate current pathologic examination status in Korea and to provide information for future resource arrangement in the pathology area.MethodsI asked HIRA to provide data on IR requests, including pathologic examinations from 2011 to 2015. Pathologic examination status was investigated according to the following categories: annual statistics, requesting department, type of medical institution, administrative district, and location at which pathologic examinations were performed.ResultsHistologic mapping, immunohistochemistry, and cervicovaginal examinations have increased in the last 5 years. Internal medicine, general surgery, obstetrics/gynecology, and urology were the most common medical departments requesting pathologic examinations. The majority of pathologic examinations were frequently performed in tertiary hospitals. About 60.3% of pathologic examinations were requested in medical institutions located in Seoul, Gyeonggi-do, and Busan. More than half of the biopsies and aspiration cytologic examinations were performed using outside services. The mean period between IR requests and 99 percentile IR request completion inspections was 6.2 months.ConclusionsThis survey was based on the HIRA dataset, which is one of the largest medical datasets in Korea. The trends of some pathologic examinations were reflected in the policies and needs for detailed diagnosis. The numbers and proportions of pathologic examinations were correlated with the population and medical institutions of the area, as well as patient preference. These data will be helpful for future resource arrangement in the pathology area.