In November 2021 we sent out a survey to everyone who had signed up to be kept up to date on our site - 205 at the time. Of those 205, almost a third (62) answered the survey. This is a really high percentage, for which we are very grateful because it gave us some insights we needed. Here are the answers on the questions of the survey.
What is your gender?
This result is in line with other studies - predominantly women suffer from MdDS.
What is your age?
Again confirmation of other surveys and studies - the larger part of patients is between 45 and 65 years old. In this survey the overall average age is 54.
Your link with MdDS
What is the reason for your interest in MdDS and MdDSReset?
If you suffer from MdDS, how would you currently describe your symptoms on a scale from 0 to 10, with 0 = no symptoms, no problems, and 10 = very heavy symptoms, unbearable?
If you suffer from MdDS, have you ever been treated?
Still about a third of MdDS patients who have not (yet) been treated, or do not have access to treatment.
What was the nature of your treatment?
On a scale from 0 to 10, how did you feel right after the treatment, with 0 = no symptoms, no more problems, and 10 = still very heavy symptoms?
If you have been treated, what was the overall result?
These last two answers are hard to interpret, because it is not clear how well the treatment was given to patients. Other studies show more positive results.
MdDS Reset treatment technology
As you know our current treatment uses a smartphone inside VR glasses. Where would you like to get this treatment?
The majority of patients is very interested in treating themselves at home, but about half of patients would like to combine that with a regular visit to a caregiver (physiotherapist, doctor...).
On a scale from 0 to 10, how would you rate your digital technology skills, with 0 = not handy at all and 10 = very digital proficient?
We are happy to see that most of the responders are not afraid of using technology!
Have you ever used a smartphone mounted inside VR glasses for whatever reason?
Have you ever used real virtual reality goggles (like Oculus Quest, HTC Vive or other) for whatever reason?
Understandably, most of our responders have not yet seen a smartphone inside VR glasses or dedicated VR goggles, but still about 20% has used them before.
Proposed remote diagnosis platform
We are currently in the final stages of setting up a remote diagnosis platform. You can book a meeting with someone specialised in balance disorders, and have a video call with such a person (15-30 minutes). At the end of the call you would have a diagnosis with treatment advice, or possible advice for follow-up consultations. The following questions wanted to know what patients think of that idea.
Have you been formally diagnosed with MdDS?
About a third of patients has not yet received a formal diagnosis, which is a large part of the total group.
If you were diagnosed, how many consultations were needed before someone properly diagnosed you?
As most people involved with MdDS and other vestibular disorders know, it takes many consultations most of the time to get a formal diagnosis, simply because there are not many specialists out there capable of properly diagnosing patients. And doctors who never heard of MdDS cannot believe what a patient is describing as symptoms. So several visits to many different doctors and other specialists are the logical result. In this survey the average number of consultations is 7, which is lower than the often reported 19 visits, but still a lot, with some patients having to undergo up to 40 consultations.
If you were not yet diagnosed, are you still looking to get diagnosed?
If you want to get diagnosed, do you think you have access to someone who can properly diagnose you?
It is clear and logical that not all patients have easy access to the right vestibular specialist.
Do you like the idea of a remote diagnosis platform? Do you think it might be useful, for yourself or for other patients?
That is a very strong support from patients for such a platform!
Is such a remote diagnosis centre something you would use or would advise other affected patients to visit?
The cost for such a remote diagnosis consultation would be around €100-$115-£85. Would such a price be acceptable to you?
Understandably, hiring in specialists to provide such remote diagnosis services comes at a cost, but luckily most of the patients find this pricing acceptable.
We would really like to thank you for your answers! They helped us in understanding your needs and requirements better, which will guide us in our product and services development. Stay tuned!