A study entitled “Lack of Knowledgeable Healthcare Access for Patients with Neuro-endocrine-immune Diseases” was published in the Frontiers in Clinical Medicine. The study was the result of a Pandora Org 2012 online survey to gather information in preparation for a Neuro-endocrine-immune (NEI) Center of Excellence. There were 1294 participants and the survey’s intent was to see how satisfied patients were with their current clinical care, and if medical schools and specialists were properly trained in these complex diseases. Dr Leonard Jason co-authored the article with Tina Tidmore, Lori Chapo Kroger and Marly Silverman.
The results were presented in a poster at the 2014 IACFSME conference. Results indicate that 5% of people with NEIDS searched more that 22 years for a diagnosis. And, 75% of respondents are not satisfied with their care, or have to travel more than hour to get adequate care. You can see the full study here
Improving patient quality of life includes increasing access to
knowledgeable health care. Medical schools do not provide thorough
education of these complex diseases because they do not fall under the
established specialties that focus one body system or organ. We work to
educate medical providers on NEIDs.
Additionally, patients need to become more knowledgeable about how to
manage their illness and how they can effectively advocate for change. Through many means, we empower patients with knowledge and
Last update: December 4, 2014
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