ArticleSurgical neurology international2020
A questionnaire-based survey to evaluate and improve the current HHT medical and social condition in Japan.
Article in Surgical neurology international, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 2 papers.
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2 citing papers in PubMed.
- A Rare Case of Upper Gastrointestinal Bleeding: Osler-Weber-Rendu Syndrome.Medicina (Kaunas, Lithuania) · 2022Article
- Recurrent erysipelas led to diagnosis of hereditary hemorrhagic telangiectasia.Le infezioni in medicina · 2022Article
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Abstract
backgroundHereditary hemorrhagic telangiectasia (HHT) is a genetic systemic vascular disease affecting multiple organs and shows recurrent intractable symptoms. This disease has not been widely recognized in Japan until recently. Both diagnosed HHT patients and potential ones have faced difficulties because of the unfamiliarity with the disease in Japan. To evaluate the effect and degree of such a Japanese situation, a questionnaire-based survey was executed in this study.
methodsThis survey was carried out among the members of HHT Japan Association. The organization consisted of 102 members (as of 6/2019), mainly HHT patients and their family members. A questionnaire was used to gather demographic data, the effort to reach the diagnosis, and information regarding current patients' and their families' medical managements.
resultsOf the 102 questionnaires distributed, we have got 56 responses. The participants were mostly female (30) with an average age of 55.4 ± 14.8 (mean ± standard deviation [SD]) years. The average age of males was 53.5 ± 16.4. Relatively many HHT patients were born in huge cities such as Tokyo, Osaka, and Fukuoka Prefecture (
conclusionHHT medical practice in Japan should be further modified, for example, by establishing HHT centers and educating primary care physicians and HHT patients.
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