Healthcare practices for individuals with cerebral small vessel disease: An International Survey

BackgroundCerebral small vessel disease (cSVD) is a major cause of stroke and dementia but patients often report a lack of specialist care. We aimed to identify the availability and type of care, current management practices and areas of unmet need for patients with cSVD. MethodsWe performed a literature review to identify clinical practices towards cSVD and an online international survey of health-care centres (one clinician per hospital/clinic) treating individuals with cSVD between September/2022-May/2023. All answers were anonymised (with an option to sign). We compared the clinical workup between cSVD-dedicated and non-cSVD-dedicated health-care services, regions and country-income-class groups using descriptive statistics. ResultsOur review found five clinical cSVD-services. We distributed 264 survey requests and received 137 responses (response rate=52%); 130 responses representing 45 different countries contained analysable data; 63% responses were from High-Income countries (HIC). Fourteen centres/130 responses (11%) had cSVD-services, nine in HIC, seeing a median of 150 (IQR 64.5,290) individuals with cSVD/year. 79% (91/115) physicians reported cognitive decline as the primary concern for patients. Follow-up was more likely in cSVD-services (cSVD-centres vs not: 85% 11/13 vs 45% 49/109; 2(df)=1, p=0.007) for main outcomes stroke and dementia. 77% (84/109) centres without a cSVD-service believed there is an unmet clinical need for cSVD. 21% did not assess cognition, and 21% (25/117) applied diagnostic cognitive tools. For covert-cSVD, antiplatelet use was more likely in Latin-America & the Caribbean (Fisher-exact, p<0.001) and statins in Europe & Central Asia (Fisher-exact, p=0.01). 61 services evaluated long-term outcomes, of which 8 reported patient-reported-outcome measures. ConclusionsThis survey has identified very few cSVD specialist services, a large, physician-acknowledged unmet clinical need, and serious mismatch between clinical management and patient-reported priorities for people with cSVD. Our results indicate a need for improved person-centred care for cSVD. Standardisation of practices and services could significantly improve health-care for people with cSVD.