Prevalence and healthcare utilization of rare neurological diseases in Hong Kong: 2014–2018

Abstract

Background There has been increasing attention focused on the epidemiology of rare diseases (RDs) in recent years. Rare neurological diseases (RNDs) constitute a significant proportion of RDs; however, relevant research is still lacking. Methods A list of ICD‐10 codes corresponding to RNDs was compiled using adaptations from the Orphanet Classification of Rare Diseases, and classified into rare epilepsy, movement‐related, neurocutaneous, neuroimmune, neurometabolic and neurodegenerative, neuromuscular and other RNDs. Using the Clinical Data Analysis and Reporting System, which holds public hospital healthcare records of Hong Kong anonymously, we calculated the prevalence and healthcare utilization of RND patients between 2014 and 2018. The list of RNDs was also used to review relevant pharmacological trials within the International Clinical Trials Registry Platform between 2009 and 2018. Results The prevalence of RNDs in Hong Kong is 3.6 in 1,000 individuals. Patients with RNDs had frequent emergency department, outpatient and inpatient healthcare utilization. The average annual cost per patient is estimated at HKD 182,075 (€ 19,688). Different categories of RNDs showed different patterns of healthcare utilization. Moreover, there were only 677 RND‐related pharmacological trials during the study period, and no trial was found for 78% of RNDs. Conclusions This is one of the first population studies on the prevalence and healthcare utilization patterns of RNDs, with comprehensive reviews of RND‐related pharmacological research. It shows high healthcare utilization rates among patients with RNDs, as well as a wide research gap in many RNDs. We call for better attention and tailored healthcare for these patients.

SGLT2i reduces risk of developing HCC in patients with co-existing type 2 diabetes and hepatitis B infection: A territory-wide cohort study in Hong Kong

“…The primary outcome of this study was the occurrence of HCC, which was identified by ninth and 10 th Revision of the International Classification of Disease (ICD-9 and ICD-10, respectively): ICD-9 155.0 or 155.2 and the ICD-10 C22.0, C22.8, or C22.9. Both ICD-9 [21][22][23][24][25][26] and ICD-10 [27][28][29] coding are widely adopted in the health care system in Hong Kong. HCC constitutes almost all primary malignant neoplasms of the liver in adults, [30,31] and patients with liver secondary or metastases were excluded by the identification of additional primary cancer coding in combination with coding for liver secondaries.…”

Prevalence and incidence of neuromuscular conditions in the UK between 2000 and 2019: A retrospective study using primary care data

“…The Irish study estimated a lower overall adult prevalence of 63 per 100,000 in 2013, possibly due to a stricter case definition that used multiple data sources and excluded patients labelled with possible myopathies or neuropathies [20]. Finally, a recent study from Hong Kong of all rare neurological diseases estimated a prevalence of 38 per 100,000 for NMD, but GBS and MG were classified as neuroimmune rather than neuromuscular rare neurological diseases [22]. Overall, these inconsistencies led us to focus more on comparing published estimates for the more common NMD conditions.…”