2 posts tagged “online assessment”

Driving with Parkinson’s disease: Safety considerations + turning over the keys

Posted 2 weeks ago by

Are you still driving with Parkinson’s disease? Check out some safety considerations and pointers for determining if it’s time to turn over the keys. Plus, explore how others with PD have handled this tricky topic and see some alternate ways of getting around.

Considerations for driving with PD + 7 questions to ask yourself

“You will likely be able to drive safely and legally for several years, depending on your age and general physical condition,” according to the Michael J. Fox Foundation. “However, Parkinson’s disease eventually affects reaction time, ability to handle multiple tasks, vision and judgment.”

Everyone with PD is living with their own mix of motor and non-motor symptoms, rate of disease progression, and reaction to medication (such as levodopa “ons and offs”) — all of which can affect driving abilities.

There are currently no set guidelines for neurologists to determine someone’s fitness to drive, so doctors consider patients’ skills and symptoms on a case-by-case basis, according to ParkinsonsDisease.net. They recommend considering these questions to help determine if you’re still fit to drive:

  • How is my vision? Can I see well at night? Can I distinguish colors, such as in traffic lights?
  • Would I be putting my passenger (friend or loved one) at risk?
  • How fast is my reaction time? Could I safely avoid a surprise obstacle in the road?
  • Has anyone (friend or family member) commented negatively on my ability to drive?
  • Can I handle multiple activities at the same time (whether driving or not)?
  • Can I effectively and quickly turn the wheel or step on the brake with enough strength?
  • Do any of my medications cause side effects like sleepiness, dizziness, blurred vision, or confusion?

AAA Foundation for Traffic Safety published this self-assessment quiz and booklet for the general population of drivers ages 65+, but your own evaluation of your driving (and even your doctor’s assessment) may not capture all the true risks.

Driving assessments

PatientsLikeMe members have talked about how you can get a driving assessment to help you independently determine your driving abilities (click here to learn more about different types of professional driving assessments; note: these assessments are not covered by Medicare or private health insurance and you should ask if the results may be shared with your state and affect the status of your driver’s license).

Older drivers can also attend a (confidential) CarFit event, where a team of trained technicians and/or health professionals work with you to ensure you “fit” your vehicle properly for maximum comfort and safety.

Your community’s experiences

Join PatientsLikeMe or log in to see what members have said about the challenges of giving up their keys — as well as the potential bright side, such as no longer having to stress about driving (and associated costs, like car payments, insurance and gas) and — more importantly — possibly hurting someone.

Karl Robb (our blog partner), who has young-onset PD, has written about how he realized he gave up driving at age 30 because of worsening dyskinesia. “Relinquishing the keys to your car is a selfless act of caring and compassion,” he says in a piece for the Parkinson’s Foundation. “It shows that you care about yourself and those who may be put in harm’s way.”

Getting around town

Thinking about giving up or reducing your driving? Look into public transportation or free/reduced-cost transportation services in your area, and ask friends and family for rides (it can help to plan ahead and have a set calendar or day of each week for running errands with them).

“Turns out it is a good time to be a non-driver,” notes one member. “Surely you have heard of LYFT and Uber? They offer inexpensive rides in many US cities. maybe your family could set you up with one.” (See the growing list of cities that Lyft and Uber serve, as well as ever-expanding delivery services, like Instacart for groceries and medications/pharmacy goods.)

Also, explore these other transportation resources:

Join PatientsLikeMe and this PD forum discussion to add your thoughts, questions or concerns about driving. The community is here for you!

Share this post on Twitter and help spread the word.


The “Immense Benefits” of Online Health Reporting: An Interview with ALS Study Author Dr. Thomas Meyer

Posted April 27th, 2012 by

Earlier this month, we told you about a new study showing that ALS patients reporting their health status over the Internet (using a rating scale known as the ALSFRS-R) is just as reliable as a trained nurse rating the patient’s score.   Now, we’d like to share our interview with lead study author Dr. Thomas Meyer, a neurologist at Charité University Hospital in Berlin, Germany.  What role did PatientsLikeMe play in this research?  And what are the study’s implications for the future of clinical trials?  Find out that and more in our interview with Dr. Meyer below.

Dr. Thomas Meyer, Neurologist at Charite University Hospital in Berlin

1.  When did you become interested in patient-reported outcomes?

In 2005, we first used tablet PCs in our outpatient department to capture patient-reported outcomes (PROs). To us neurologists, PROs play a crucial role. Many neurological conditions can be captured by means of PROs only – I am thinking of pain in neuropathies, spasticity in multiple sclerosis (MS), the subjective perception of movement ability in Parkinson’s syndrome and dyspnoea (breathing difficulty) in neuromuscular conditions, including ALS. Given this fact, we neurologists have always listened to our patients a little more carefully so that we can do a good job. Therefore, the systematic capturing of PROs is a natural process to us, and we are most happy to be able to support any advancement and positive development thereof.

2.  Your study showed remarkable agreement between the two ALSFRS-R reporting methods.  Were you surprised that they were so similar?

You are absolutely correct. Correlation here looks like a textbook example of medical statistics. We were indeed very surprised to find that the data were so unequivocal.  Notwithstanding, our previous experience with the offline electronic capturing of ALSFRS-R had taught us that the data captured in a personal interview are very close to those captured in computer-based self-assessments.

A Chart Showing the Striking Similarity Between ALSFRS-R Scores as Reported by ALS Patients (Bottom Axis) and Their Clinicians (Left Axis)

Then we took the next step and progressed from offline to online assessment. Other work groups had already shown good correlation between the face-to-face capturing of the score on the one hand, and data capturing over the phone on the other. That was very useful upfront information for us. Insofar, the success of our study didn’t come as a complete surprise to us.

3.  How did Dr. Paul Wicks, PatientsLikeMe’s Director of Research & Development, contribute to this research project?

Our great interest in the issue of PROs in ALS goes back a long time. Nevertheless, we were very much aware of the fact that PatientsLikeMe is by far the most experienced organization with regard to PROs worldwide and also the one that identifies with this topic most. So, a small group of four of us flew from Berlin to Boston to introduce our clinical trial to PatientsLikeMe and to learn from their experience. Once we had concluded the study, we flew to Boston once again to see Paul and to prepare the paper. We profited immensely from Paul’s input, and he gave the manuscript a superordinate perspective.

PatientsLikeMe Research & Development Director Paul Wicks, PhD

So it is for a good reason that he is listed as co-author of this publication. Overall, this scientific research project was a collaboration between the Charité University Hospital and PatientsLikeMe. I believe it is also an important, gratifying and affirming experience for PatientsLikeMe to see that in terms of methodology the online capturing of PROs is at least equal to an interview conducted face-to-face. I can even imagine situations where the online mode of capturing PROs is actually better than a personal interview, especially where rather complicated and very private issues are addressed. This is just one of the many points we discussed vividly with Paul.

4.  Do you believe online patient reporting will become an acceptable practice for clinical trials?  What are the ramifications if it does?

I can very well imagine that the online capturing of PROs will one day become an integral part of clinical trials. It is quite an obvious thing; however, owing to regulatory requirements, it will be quite some time before it will actually be possible to implement this. The bottom line is that clinical trials will have to be conducted for each score demonstrating equivalence between paper-based and web-based capturing. Not all of the scores have actually been evaluated for online capturing. Another critical point surely is Internet access.

Having said that, it certainly also depends on the patient group and the actual medical condition under examination. I suppose that from a medical-ethical point of view it is problematic to exclude patients from a trial simply because they are unable to realize an online completion of the score. In this regard, I believe the first step to be taken must be to demonstrate equivalence between online and offline capturing of the score. Then one could give patients the option of using online assessment in the context of participating in a clinical trial and see what they would prefer to do.

The benefits would be immense. This method could highly enhance the quality of the data, the efficiency of data capturing and, not least of all, it would help reduce the costs of a clinical trial. I believe that online assessment will be a matter of course in the future, but not immediately.