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Diagnostic precision and identification of rare diseases is dependent on distance of residence relative to tertiary medical facilities

Anna-Lena Walter, Florent Baty, Frank Rassouli, Stefan Bilz & Martin Brutsche

abstract

BACKGROUND
Diagnostic precision and the identification of rare diseases is a daily challenge, which needs specialized expertise. We hypothesized, that there is a correlation between the distance of residence to the next tertiary medical facility with highly specialized care and the diagnostic precision, especially for rare diseases.

RESULTS
Using a nation-wide hospitalization database, we found a negative association between diagnostic diversity and travel time to the next tertiary referral hospital when including all cases throughout the overall International Classification of Diseases version 10 German Modification (ICD-10-GM) diagnosis codes. This was paralleled with a negative association of standardized incidence rates in all groups of rare diseases defined by the Orphanet rare disease nomenclature, except for rare teratologic and rare allergic diseases.

CONCLUSION
Our findings indicate a higher risk of being mis-, under- or late diagnosed especially in rare diseases when living more distant to a tertiary medical facility. Greater distance to the next tertiary medical facility basically increases the chance for hospitalization in a non-comprehensive regional hospital with less diagnostic capacity, and, thus, impacts on adapted health care access. Therefore, solutions for overcoming the distance to specialized care as an indicator of health care access are a major goal in the future.
   
citation Walter A L, Baty F, Rassouli F, Bilz S, Brutsche M. Diagnostic precision and identification of rare diseases is dependent on distance of residence relative to tertiary medical facilities. Orphanet J Rare Dis 2021; 16:131.
   
type journal paper/review (English)
date of publishing 22-03-2021
journal title Orphanet J Rare Dis (16/1)
ISSN electronic 1750-1172
pages 131
PubMed 33745447
DOI 10.1186/s13023-021-01769-6