{"id":6256,"date":"2020-04-19T15:00:41","date_gmt":"2020-04-19T13:00:41","guid":{"rendered":"https:\/\/www.cmtc.nl\/resultaten-enquete-augustus-2019\/"},"modified":"2025-02-26T12:16:36","modified_gmt":"2025-02-26T11:16:36","slug":"results-survey-august-2019","status":"publish","type":"post","link":"https:\/\/www.cmtc.nl\/en\/blog\/2020\/04\/19\/results-survey-august-2019\/","title":{"rendered":"Results survey August 2019"},"content":{"rendered":"

In August 2019 we conducted a global survey in order to determine the needs of patients and families.<\/p>\n

The main results of our global survey are described below.<\/p>\n

What type of support do you need?<\/strong><\/p>\n

    \n
  1. Meeting other patients and families to exchange knowledge and experience (63 %).<\/li>\n
  2. Information about possible treatments (54 %).<\/li>\n
  3. Personal medical advice, medical diagnosis (50 %).<\/li>\n
  4. Finding a medical specialist in my country who is familiar with CMTC and\/or blood vessel diseases (50 %).<\/li>\n<\/ol>\n

    What kind of issues did\/do you experience?<\/strong><\/p>\n

      \n
    1. Finding a medical specialist who is familiar with CMTC and\/or blood vessel diseases (57 %).<\/li>\n
    2. I’m scared about the future of my child (44 %).<\/li>\n
    3. People are staring at my child giving strange looks and questions\/comments (39 %).<\/li>\n<\/ol>\n

      What are your information needs?<\/strong><\/p>\n

        \n
      1. Contact with knowledgeable medical specialists (54 %).<\/li>\n
      2. Personal stories of patients (and families) (50 %).<\/li>\n
      3. Possibilities to ask questions (42 %).<\/li>\n<\/ol>\n

        The questions have been answered mainly (88 %) by the parents of patients.<\/p>\n

        What actions are we going to take (based on questions and comments):<\/strong><\/p>\n

          \n
        1. Organise more opportunities for patients and families to meet (virtual and\/or in-person).<\/li>\n
        2. Make the role of Patient Advocate clearer.<\/li>\n
        3. Educate our Patient Advocates.<\/li>\n
        4. Recruit more Patient Advocates.<\/li>\n
        5. Add more articles to our website about possible treatments.<\/li>\n
        6. Continue with our personal medical advice initiative and look into online solutions.<\/li>\n
        7. Add personal stories to our website and ask people to share theirs.<\/li>\n
        8. Share website content frequently, e.g. once a week, via social media channels on topics such as psychological aspects of living with a rare disease.<\/li>\n
        9. Enable members (who are not able to attend our global conference) to\u00a0virtually participate by means of Internet technology.<\/li>\n
        10. Pay more attention to Other Vascular Malformations communication next to CMTC.<\/li>\n<\/ol>\n","protected":false},"excerpt":{"rendered":"

          In August 2019 we conducted a global survey in order to determine the needs of patients and families. The main results of our global survey are described below. What type of support do you need? Meeting other patients and families to exchange knowledge and experience (63 %). Information about possible treatments (54 %). Personal medical […]<\/p>\n","protected":false},"author":2,"featured_media":2384,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[297],"tags":[],"class_list":["post-6256","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-latest-news"],"acf":[],"yoast_head":"\nResults survey August 2019 - CMTC-OVM<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/www.cmtc.nl\/en\/blog\/2020\/04\/19\/results-survey-august-2019\/\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Results survey August 2019 - CMTC-OVM\" \/>\n<meta property=\"og:description\" content=\"In August 2019 we conducted a global survey in order to determine the needs of patients and families. 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