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. 2024 Dec 9:14:04249.
doi: 10.7189/jogh.14.04249.

The health and economic burden of rare endocrine disease: Often ignored, always important

Luna Liu  1   2   3 , Yingzhou Shi  1   2   3 , Yuchen Li  1   2   3 , Wanhong Wu  1   2   3 , Yang Tian  1   2   3 , Xiude Fan  1   2   3 , Chao Xu  1   2   3   4   5   6
Affiliations

The health and economic burden of rare endocrine disease: Often ignored, always important

Luna Liu et al. J Glob Health. .

Abstract

Background: Rare endocrine diseases (RED) often pose chronic and life-threatening challenges, yet their economic costs and societal impact remains have not been precisely quantified.

Methods: We obtained patient data from the 2018 Nationwide Inpatient Sample (NIS) and the Nationwide Readmissions Database (NRD), identifying RED patients through International Classification of Diseases, 10th revision codes. The difference of economic burden between RED patients and the control group, including hospital length of stay, hospitalisation costs, and readmission rates, was assessed using chi-square tests.

Results: We extracted 638 083 (2.98%) RED-related records from the NIS database. Compared to patients with common conditions, RED patients showed an exceedingly high burden of disease, including significantly extended hospital stays (P < 0.05), elevated total charges (P < 0.05), and heightened mortality rates (P < 0.05). They also had a substantially increased 30-day all-cause readmission rate based on the NRD database (P < 0.05). Although the different subgroups of RED patients had varying patterns of health care utilisation and economic burdens, they all surpassed those of patients with common conditions.

Conclusions: There is a need for novel strategies aimed at mitigating the substantial RED-related burdens borne by individuals, families, and society in general, as well as funding for research and clinical trials.

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Conflict of interest statement

Disclosure of interest: The authors completed the ICMJE Disclosure of Interest Form (available upon request from the corresponding author) and disclose no relevant interests.

Figures

Figure 1
Figure 1
Hospitalised outcomes of inpatient with rare endocrine disease compared to common conditions based on NIS and NRD database. Continuous variables were presented as means and standard errors. Panel A. prevalence of RED vs. CC (NIS). Panel B. Length of stay in patients with RED vs. CC (NIS). Panel C. Total charges in patients with RED vs. CC (NIS). Panel D. Mortality rate in patients with RED vs. CC (NIS). Panel E. Prevalence of RED vs. CC (NRD). Panel F. Length of stay in patients with RED vs. CC (NRD). Panel G. Total charges in patients with RED vs. CC (NRD). Panel H. Early readmission rate in patients with RED vs. CC (NRD). *P < 0.01. RED – rare endocrine disease, CC – common conditions.
Figure 2
Figure 2
Subgroup analysis: hospitalised outcomes of inpatient with different rare endocrine disease in NIS database. Continuous variables were presented as means and standard errors. Panel A. The prevalence of different rare endocrine disease in whole population. Panel B. Length of stay in patients with different rare endocrine disease. Panel C. Total charges in patients with different rare endocrine disease. ABCD letter labelling for P < 0.05, with groups sharing at least one letter not showing significant differences and groups with different letters showing significant differences.
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References

    1. RARE disease facts. Global Genes. 2018. Available: https://globalgenes.org/rare-disease-facts/. Accessed: 15 November 2024.
    1. Centers for Disease Control and Prevention. Methods for the National Diabetes Statistics Report. 2020. Available: https://www.cdc.gov/diabetes/data/statistics-report/index.html. Accessed: 15 November 2024.
    1. Navarrete-Opazo AA, Singh M, Tisdale A, Cutillo CM, Garrison SR.Can you hear us now? The impact of health-care utilization by rare disease patients in the United States. Genet Med. 2021;23:2194–201. 10.1038/s41436-021-01241-7 - DOI - PMC - PubMed
    1. Orphanet. Orphadata. 2024. Available: http://www.orphadata.org/cgi-bin/index.php. Accessed: 15 November 2024.
    1. Reincke M, Hokken-Koelega A.Perspectives of the European Society of Endocrinology (ESE) and the European Society of Paediatric Endocrinology (ESPE) on rare endocrine disease. Endocrine. 2021;71:539–41. 10.1007/s12020-021-02652-x - DOI - PMC - PubMed

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