Misdiagnoses in Patients with Rare and Complex Disorders - addition


Over the past decade, increasing anecdotal evidence in the rare disease community suggests that patients with rare diseases experience disproportionately high levels of misdiagnosis of non-organic illnesses such as Munchausen’s Syndrome By Proxy, Conversion Disorder, and Somatoform Disorder, and that these misdiagnoses interfere with the ability of rare disease patients to access appropriate medical care.
It is important to address this rising problem in the rare disease community. In order to move forward with in-depth studies, the first step is to establish the problem as more than anecdotal.
RNE would like to hear from patients, parents, and caretakers, telling us of their concerns and experiences regarding misdiagnosis of a psychological problem while searching for a diagnosis for symptoms.
RNE will use this information within an RNE initiative to look for solutions to improve the diagnostic process. All survey entries are anonymous.
Due to overwhelming response to the first survey distributed, we want to offer others the opportunity to share their experiences through this duplicate survey.
Thank You!

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* 1. Do you ever feel anxious that your clinicians will not believe you when you share your symptoms?

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* 2. Have you been told that you were overreacting, exaggerating or imagining symptoms, or felt brushed away, by your clinicians?

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* 3. Have you (or your child) been diagnosed with a psychological problem that you think is unjustified?

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* 4. Do you (or your child) hold a diagnosis of a suspected or confirmed rare disease (as defined by NORD, and the NIH)? If yes, please name the disease.

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* 5. If yes, did the diagnosis of a psychological problem come before or after the rare disease diagnosis?

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* 6. Do you avoid reaching out for medical care when you (or your child) is ill? Do you avoid the ER? Do you avoid specific physicians and/or facilities?

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* 7. What specialty has been involved in your misdiagnosis (or reference to one)? Ex. pediatrician, social worker, primary care doctor, nurse practitioner, etc.

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* 8. Has your family been involved with Dept of Children and Families (DCF) due to misdiagnosis?

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* 9. If yes to Q8, how long did it take for your case to be cleared?

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* 10. Please tell us a brief story of your experiences, feelings, fears, and opinions on this subject.
If you would like a phone/email conversation, please note your email address/phone number.
Remember, RNE can be reached if you need support or information.

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