Virtual reality offers new insights into Huntington’s Disease symptoms

You strap on the headset and are plunged into a new and disorientating world – one in which even simple tasks present a formidable challenge.

Virtual reality offers new insights into Huntington’s Disease symptoms

 

Sitting at a patient education day for people with Huntington’s Disease, Dr. Nikkilina Crouse, Teva Senior Medical Science Liaison, noticed a woman struggling to turn off her iPhone when the ringer sounded in the middle of a session.

“I watched as she took four or five tries to slide that little button on the side of her iPhone down, because she couldn’t make the movements in her hand settle down and do what she wanted to do. You could tell she was getting more and more embarrassed because her phone kept ringing, and her husband was getting frustrated as she wasn’t turning it off, and you know these are the kind of things that the physicians don’t see.”

Lightbulb moment

This sparked off Dr. Crouse thinking about using virtual reality to help doctors become more aware of some of the disabling aspects of Huntington’s disease.

Chorea is a movement disorder characterised by involuntary, unpredictable body movements. It is one of the symptoms of Huntington’s disease, a hereditary condition in which the brain’s nerve cells gradually break down. Such involuntary movements that accompany Chorea can be quite debilitating, particularly as people with the condition often don’t notice these movements themselves. This means that they often don’t mention them to their doctors, says Dr. Crouse, which can in turn lead to doctors minimizing the impact that these symptoms can have and not treating them.1

Faced with this challenge, Dr. Crouse and her team came up with a simple solution: a series of virtual reality videos, or ‘vignettes’ as she calls them, that allow doctors to experience the frustration many of their patients with Chorea live with on a daily basis. Through these videos she hopes doctors will become more empathetic to the difficulties.

This is the virtual reality experience created by Dr. Crouse. It is designed to show those working in the medical profession what it’s like to live with the condition. Huntington’s disease is rare, and besides medication, many other care measures are available. It is important to find the right therapy for the right person at the right time. Non-medical interventions available are physiotherapy, occupational therapy, speech therapy, and diet.2


“You often have general neurologists or even some movement disorder specialists who only have one or two Huntington’s disease patients and they sort of miss that [patient unawareness] component,” says Crouse. “They don’t understand that though the patient is not reporting [chorea] as a problem it still could be an actual problem.”3

“I have physicians who I have met with personally who have told me ‘oh I don’t treat chorea until a patient is falling, because it is just cosmetic and it doesn’t bother them’. That is a conversation I have had on more than one occasion.”

Keeping it real

To make the videos, Teva will film patients with Huntington’s disease carrying out realistic tasks. The aim is to provide as accurate as possible a virtual reality experience for doctors.

Their media partner The Doctor’s Channel will help them realize this, explains Dr. Crouse: “They were really sensitive to understanding what this shooting would look like, and how we would need to keep it to a minimal level of stress and frustration for our patients.”

The team will film four vignettes to make up a two-minute virtual reality film, to show doctors how their patients with chorea experience the following: pouring liquid into a cup and drinking, using a phone, writing and dealing with law enforcement.

The final scenario was specifically requested by patients who have experienced problems with law enforcers in the past, she says. “Early in the Huntington’s disease physical manifestation, patients can look like they are drunk because their gait is unbalanced and they stumble as they walk, so they are often contacted by law enforcement under suspicion of being drunk.

“Because the patients sometimes have behavioral symptoms, they can get aggressive on occasion and it can sometimes turn into quite an ugly situation, where the patient isn’t able to fully explain what is going on and the law enforcement officer doesn’t understand as this person genuinely looks drunk and their behavior is abnormal.”4

The next level

For Dr. Crouse the initial videos are just the start. A second phase, imagined by The Doctor’s Channel, would see the doctors hooked up to haptic sensors, (which recreates the sense of touch by applying vibrations or motions to the user), detecting their movements and reproducing them in virtual reality, adjusted for the likely impact of Chorea. This would allow doctors to truly experience the impact of Chorea. “It would be giving doctors the frustration of thinking they are pouring something and making a mess because they have Chorea which caused them to flip the cup.”

Her team is currently waiting for funding sign-off so they can take their videos into the field in the United States. If approved, they will offer doctors demonstrations using Gear virtual reality headsets and Samsung equipment.

References

  1. A Physician's Guide to the Management of Huntington's Disease (3rd edition). Huntington's Disease Society of America (HDSA) website. http://hdsa.org/wp-content/uploads/2015/03/PhysiciansGuide_3rd-Edition.pdf
    4.International Parkinson and Movement Disorder Society (MDS) https://www.movementdisorders.org/MDS/About/Movement-Disorder-Overviews/Chorea--Huntingtons-Disease.htm


NPS-ALL-NP-00021 August 2018