I am doing some personal research and trying to find statistics about the total amount of stroke survivors who are not able to walk unassisted and use mobility devices (wheelchairs, scooters, etc.).

The purpose of my research is to define the scale of the group of stroke survivors that I feel is being very poorly served for good assistive technology for mobility devices, in the hope of waking up some medical professionals and manufacturers as to the scope of this problem and the potential market possibilities.

Criteria for data inclusion

I am specifically looking for information about the total number of chronic stroke survivors (>6 months of onset) who are non-ambulatory (not able to walk) , who are not considered elderly (<65 years old) and are otherwise healthy without other comorbidities (additional disorders or diseases) that limits their ability to walk or use good assistive technology if it was available to them.

I am looking for links to specific statistical data that meets this criteria, in any country, I’m not just looking for general sites or specific.assesments and studies based on a percentage of participants,  I am looking for hard core facts, figures and most importantly, verifiable data based on the entire community of people affected by strokes who fit the critera.

Some guesses about the numbers

About 700,000 people have strokes in the US per year. Of them, approximately 30% are non-ambulatory. Of those 210,000 non-ambulatory stroke survivors, I am trying to figure out how many of them would be potential users of higher end mobility assistive technology. Generally the group most likely to be candidates are those who have decent overall health and are younger and trying to regain as much as they can to do ADL and get around at home and in the community. By comparison, the Spinal Cord Injury (SCI) market, with about 12,000 new cases each year, is much better represented, and my view, taken into account by manufacturers.

If I make a guess about the people who fit the criteria for data inclusion (chronic stroke survivors, non-ambulatory, <65 years old who are otherwise healthy) at about 10% of the 210,000 non-ambulatory stroke survivors, that would be 21,000 people each year. If the people who are only partially ambulatory who fit the rest of the critera were included, my guess it would be at least double or triple the number of people, and probably much more.

Why this data would be useful

Very few high end ultralight manual rigid wheelchairs are made for people with hemiparesis/hemiplegia that need to propel with one hand and one foot. These are the people who often need it the most so that they can maintain their level of ADL’s and not have to automatically go to a power chair where they will lose what capabilities they have. The same goes for power assist devices.

Many devices only need minor modification to be more usable for a stroke survivor, but manufacturers need to be convinced there is a market for it first. I talk with quite a few of them, and want to provide them with hard cold facts about why they should be addressing the stroke survivor market better, but most are just not aware of the numbers involved, especially with many younger people having had strokes.

Many stroke survivors have severe defecits on their affected side, but are very strong on their non-affected side and able to use good equipment if it is configured properly. Unfortunately, most dealers do not know how to configure equipment for stroke survivors and they end up with either unusable equipment, or equipment that is more than they may need in many situations. Most “hemi” equipment on the market today is useless in my opinion, and handicaps people even more on their unaffected side to meet the needs of their affected side.

The other day I was on the phone with a company that I am doing some “pro bono” documentation work for their product, because we have it and believe in it, and I think it would be very useful to the stroke community in general. Many are put off by what appears to be a very complicated product, and have no idea that it could really make a difference for being able to operate their wheelchair with one hand.

When I asked about the possibility for a left hand lever, I was told that it was possible, but they always shipped the right hand version unless specifically asked about it, because most people are dominant right handed. We had a long talk about hemparesis and neglect, and even with someone who is the highest level Assistive Technology Professional (ATP) with many years experience in the industry, they were not aware of many of things we talked about, and hence, many of their dealers are not either, and would never know to even discuss it with a client. I mentioned that how would people know to ask about a left hand lever it if they did not know it was needed or even existed?

After doing complicated configurations to meet the needs of my husband with severe hemparesis and neglect, I’m trying to see what can be done to take these idea’s to the smaller manufacturers who may be willing to listen to the needs of the stroke community. Other examples include suspension wheelchair systems (front and rear) to help offset seizures caused by vibration, power assist devices that can be used only when needed with one arm, and the already mentioned example about being able to propel or operate an ultralight manual wheelchair with only one hand or foot.

Ambulation assesments and scales

For the purposes of this discussion, the following assesments and scales are used to define the target group that I am looking for data for who are non-ambulatory.

See http://www.rehabmeasures.org for all assesments and scales that are available.

Functional Ambulation Categories (FAC)

The Functional Ambulation Categories (FAC) is a functional walking test that evaluates ambulation ability.

The primary group I am looking for data for score “0 Nonfunctional ambulator” on the FAC.

Quotes from Stroke Survivors and their Partners

Patrick: I have said for five yeare that my equipment was designed for a sedentary, elderly person. Not a 57 year old, mind sharp as a tack active man.

Further research links

http://www.ncbi.nlm.nih.gov/

http://www.cdc.gov/stroke/facts.htm