“Shortage of Nurses Means Death After Hip Fracture”

This is an interesting news article from 3/19/10 about the suggested association between low nurse staffing levels and “increased mortality among elderly patients admitted to hospital with hip fractures.” One author of the study said: “It is estimated that nearly 5% of elderly patients admitted with a hip fracture die during their initial hospitalization, and another third die within a year of their injury… Two of the most common causes of death for hip fracture patients — pulmonary embolism and acute myocardial infarction — are also considered to be the most preventable causes of in-hospital death. If nurses are responsible for a small number of patients, they might be able to identify and deal with impending complications earlier.”

The article points out that orthopedic surgeons don’t have direct access to info on nurse staffing levels. I don’t know how consumers would obtain this info.

http://www.medscape.com/viewarticle/718859

Medscape Medical News from the: American Association of Orthopaedic Surgeons (AAOS) 2010 Annual Meeting

From Medscape Medical News
Shortage of Nurses Means Death After Hip Fracture
Fran Lowry

March 19, 2010 (New Orleans, Louisiana) — Low nurse staffing levels are associated with increased mortality among elderly patients admitted to hospital with hip fractures, new research suggests.

In a retrospective cohort study presented here at the American Association of Orthopaedic Surgeons 2010 Annual Meeting, the risk for death among elderly patients in the hospital with hip fractures increased 22% when the nursing staff was reduced by 1 full-time nurse each day, Peter Schilling, MD, from the University of Michigan Medical Center in Ann Arbor, told meeting delegates.

“It is estimated that nearly 5% of elderly patients admitted with a hip fracture die during their initial hospitalization, and another third die within a year of their injury,” he said. “There is very little research on how to reduce the risk of complications in these patients, but there is growing evidence of the importance of nurse staffing levels in reducing morbidity and mortality in this vulnerable population.”

To shed more light on this issue, he and his colleagues conducted a retrospective cohort study of 13,343 elderly patients admitted between 2003 and 2006 to 39 Michigan hospitals with a primary diagnosis of hip fracture.

They used regression models to control for patient age, sex, comorbidities, and hospital characteristics, including teaching status, hip fracture volume, income and racial composition of each hospital’s zip code, and, finally, seasonal influenza.

The study found a statistically significant association between nurse staffing levels and in-hospital mortality among hip fracture patients.

The odds of in-hospital mortality decreased by 0.16 (P < .003) for every additional full-time-equivalent registered nursing staff per patient-day, even after controlling for covariates.

“This association indicates that the absolute risk of mortality increases by 0.35 percentage points for every 1-unit decrease in full-time-equivalent registered nursing staff per patient-day, or a 16% increase in death,” Dr. Schilling said.

He speculated that more nursing attention could decrease occurrences of urinary tract infection, pneumonia, sepsis, and cardiac arrest. “Two of the most common causes of death for hip fracture patients — pulmonary embolism and acute myocardial infarction — are also considered to be the most preventable causes of in-hospital death. If nurses are responsible for a small number of patients, they might be able to identify and deal with impending complications earlier.”

Senior author Paul Joseph Dougherty, MD, associate professor and director of the Orthopaedic Surgery Residency Program at the University of Michigan, said that although the study has limitations and does not give a definite answer, “it certainly points to the fact that nurse staffing may be an important factor in preventing complications.”

“There’s a great deal of concern with cost-cutting measures, but what you may perceive to be excess nursing staff may in fact prevent long-term problems. The problem is, we don’t have a precise value for that,” he told Medscape Orthopaedics.

More work needs to be done to establish acceptable nursing staffing levels, he said. “This is probably where our efforts should be directed, so that we can make some assumptions for staff, based on the type of patient we are seeing. Hip fracture patients are frail and very vulnerable. They tend to be the oldest patients, and they tend to be the sickest.”

Andrew Pollak, MD, head of the Division of Orthopaedic Trauma at the University of Maryland School of Medicine in Baltimore, said the authors should be congratulated for taking on this important topic.

“This study does not definitively show that nurse staffing levels are associated with mortality. But it suggests that there might be a relationship and that further investigation is warranted,” said Dr. Pollak, who moderated the session at which the study was presented.

Orthopaedic surgeons need to pay more attention to this issue, he added. “As orthopaedic surgeons, we pay a lot of attention to having enough personnel in the operating room with us to take care of our patients, but it is pretty rare that we will actually go up on the floor in a hospital, or other places in the hospital outside of the operating room, and pay any attention to the number of staff around. We don’t really have direct access to that kind of information,” he told Medscape Orthopaedics.

“This type of information tells us that we really ought to start thinking about these things when we start to consider where we are going to put our patients, and whether staffing, or the lack of it, could mean a difference in our patients’ well-being.”

Dr. Schilling, Dr. Dougherty, and Dr. Pollak have disclosed no relevant financial relationships.

American Association of Orthopaedic Surgeons (AAOS) 2010 Annual Meeting: Abstract 125. Presented March 10, 2010

“Letting Go of My Father” – terrific article on caregiving

This is a story about a son taking care of his father. The father initially had a diagnosis of Parkinson’s Disease. Many years later, the diagnosis changed to multiple system atrophy. (I do wonder if that was the correct diagnosis given the father’s inability to know how to use the bathroom. I’m thinking here of Lewy body dementia.)

The son feels out of his depth. He says:

“Broaching the subject and confessing desperation was like uttering the password to a secret brotherhood of beleaguered, overwhelmed, weary, or sometimes just resigned adult caregivers. But the sect seemed ashamed to be seen.”

The son asks the father to move into an assisted living facility. And, “to no one’s surprise but his own, gave my father more rather than less independence.”

And:

“…I emerged from the whole experience not a little indignant. The medical infrastructure for elder care in America is good, very good. But the cultural infrastructure is all but nonexistent. How can it be that so many people like me are so completely unprepared for what is, after all, one of life’s near certainties? … I am now convinced that millions of middle-aged Americans need more help than they are getting, and that the critical step toward solving the problem is a cultural change akin to the one demanded by feminists in the 1960s. … There should be no need for anyone to go through this alone, and no glory in trying.”

Three resources are mentioned:

“Had I looked harder, I might have discovered the Web site of the Family Caregiver Alliance (caregiver.org), which offers a wealth of fact sheets; the National Alliance for Caregiving (caregiving.org), which offers an online tool to help coordinate care; strengthforcaring.com, which offers ‘Share Your Story’ and ‘Meet Other Caregivers’ bulletin boards. To get this stuff, however, you have to go look for it, which means you have to have some idea of what you need, and I didn’t. What I needed was for the experts to find me and tell me what I needed. And, indeed, to explain why I needed it.”

Here’s a link to page 1 of the article:

http://www.theatlantic.com/magazine/archive/2010/03/letting-go-of-my-father/8001/1/

Two hospice misconceptions – according to an MD

I occasionally check out the blog of Dr. Wes Fisher, an internist and cardiologist based in Illinois. He posted about two misconceptions commonly held about hospice back in January 2010. The first is thinking that the hospice is going to “save you from the day to day challenges of caring for your loved one.” (There was some discussion along these lines in a recent post here with the subject “Hospice questions.”) The second is thinking that hospice will come in and make lots of revisions to a medication regimen.

This blog post mentions two resources:

* a government publication on Medicare Hospice Benefits. See:
http://www.medicare.gov/publications/pu … hosplg.pdf

* a Los Angeles Times article from 1/22/10 titled “Hospice care helps patients and loved ones,” which I think is a terrific overview of hospice. See:
http://www.latimes.com/features/health/ … 1030.story

Here’s a link to the short post by Dr. Wes Fisher and the full text:

http://drwes.blogspot.com/2010/01/hospi … tions.html

Posted by Dr. Wes
Monday, January 25, 2010

Hospice: Some Misconceptions

The Los Angeles Times had an earlier starter piece on hospice care recently with some remarkable figures:

Over the last 25 years, the number of Americans turning to hospice for end-of-life care has climbed dramatically — from 25,000 in 1982 to 1.45 million in 2008, as more and more people choose to spend their final days in the comfort of home or a patient facility with a home-like environment rather than in a hospital pursuing aggressive treatments.

I have been involved with hospice twice now – once with my father several years ago, and recently with my mother-in-law who just died of pancreatic cancer.

There are many references out there about hospice, and for a general overview for those thinking about hospice for themselves or a loved one, I’d steer you toward this introduction (pdf), provided by the government. Through both processes I have had a chance to see several misconceptions about what hospice is and how it works for patients who elect to stay at home during their last days. I cannot speak to inpatient hospice services since my family members have not elected to use those resources. For those that might not have a lot of family around, inpatient hospice care is probably a better alternative.

In many ways, hospice brings together a team of support personnel: doctors, nurses, chaplains, social workers, etc. to support the patient and their families through this difficult process, but there are some preconceived ideas that might not be clear to those who elect to go the stay-at-home route:

* First, hospice is not the cavalry, swooping in to save you from the day to day challenges of caring for your loved one. They can mobilize the equipment, the 30-60 minute visits by their staff (I am unaware of doctors making house calls, but trained nurses assess the patient then relay the status to the treating doctor), or arrange for help bathing and dressing the person occasionally, but they will NOT be there 24/7/365 when things get tough to wipe their bottoms or give them their medications. They’ll teach you how to do things, but at home, it’s still up to the caregivers.

Not that this is all bad. There is something very therapeutic about reconnecting in such an intimate way with someone you love. Still, it’s the constancy of this care, even in the middle of the night, can take it’s toll and create intense exhaustion and depression in caregivers, particularly when there is only one caregiver performing these duties. But being at home affords other familiar touches that just aren’t replicated in inpatient facilities. Probably the biggest smile we received from my mother-in-law was when be brought our therapy-dog cocker spaniel up on her bed (she loved that dog) – a no-no at most inpatient facilities.

* Medication revisions are more limited than I expected. It was interested to see family members acquire a regimented approach to medication administration at first. Through no fault of their own, it was not uncommon to observe that every medication was ultimately trying to be forced down the gullet of their loved one in attempt to be conscientious caregivers. No one unfamiliar with medical care and medicine rarely realize that perhaps many of those medications become superfluous during the dying process. No one wants to withhold care initially, we’re trying to help! But as their loved one’s renal and hepatic function decline during the dying process, doses of medications (particularly narcotics or steroids) might need to be reduced slightly to maintain a certain level of alertness or to avoid drug-induced delirium from complicating their loved-one’s care. Not uncommonly, drugs previously thought critical to the well-being of their loved one suddenly become less so or completely unnecessary. Obviously, making these decisions is very tough for lay people when you’re in the trenches of day-to-day care or when a loved one can no longer swallow. I found this was a source of considerable angst. Remembering to communicate with the hospice nurses during their visits or calling to ask about these issues can go a long way to allay any apprehensions and misgivings, should this occur.

In all, hospice was a very nice experience for us, but the experience was more about the family rallying to provide care than hospice providing the day-to-day care. I am aware of others who have found these limitations of what was offered at home by hospice to be an eye-opener. Many were caught off-guard about the need for their involvement and the depths to which their hands-on care would be needed. Hopefully now, a few more people will understand what’s required and not feel so guilty about the care they deliver when they go through what we did.

-Wes

ElderCareLink, interviewing agencies, working with aides

I saw this post on an online support group recently. It’s about a website called ElderCareLink (see eldercarelink.com) that is a referral network of care agencies. The website also has articles on some good topics: Five Tips for Choosing An Assisted Living Facility, When is the Right Time for Calling Hospice Care, and Why You Need a Healthcare Directive.

The post also gives some suggestions for interviewing agencies and working with home care aides. (I received the author’s permission to share this post.) The post is copied below.

Robin

 

“One resource I have used when looking for a new home health aide agency for my mother with [this disorder] that I found valuable is eldercarelink.com. It is a free referral network of agencies that have registered and are pre-screened. You create a profile of your needs and there is also a dialogue box where you can detail your personal situation and exactly what you are looking for.

It is worthwhile to check out their website but I don’t recommend registering until you are really ready for either home care or placement, as each time I have used it, I immediately start to receive calls and emails from multiple agencies trying to ‘get my business’. I’m sure the response depends on your geographic location, I live in [a large metropolitan area[ and each time received at least 3-4 calls from potential agencies. I have to say that so far with every call I have ever received, it was the owner or a high-level manager who called and was extremely helpful and honest. I have had a few that, once into our conversation, admitted that they couldn’t meet my needs but were still helpful with suggestions and other referrals. I have found eldercarelink to be reliable and trustworthy. But as I said before, wait until your needs are immediate before actually registering. There is no obligation or cost on your part for the service.

If you have never been the home health care route, be ready–it can be a trying experience. Do your homework and prepare before your first home interview with any agency. Write down all your questions and requirements and be BOLD and up-front about your expectations. We have been at this for almost 4 years now and it is still a learning experience.

Don’t assume or take anything for granted when it comes to home health aides, that was my mistake early on. My mother’s care and the care of my home are my only concern, I have gotten to the point that they don’t need to like me and I try not to offend anyone, but I have had aides and agencies from one extreme to the other and I tell it like it is the first day they are there, having learned from experience that what you may think is common sense may not be to them. Aides and agencies will come and go, at their request and at yours, so you will likely go thru this more than once.

Don’t settle for less than you need/expect and don’t be afraid to ask for a change if you see that a particular aide is not right for your situation. In your interviews with agencies, be sure you insist that potential aides have had one-on-one HOME care experience, not just nursing home experience. I learned that the hard way, too. In most cases at nursing homes and re-habs, the aides work in teams and rarely do physical manipulation, transfers, etc alone and are not used to or trained to do it without assistance. Also, in facilities there is always someone else to follow up behind them to do what they failed to finish or clean up. That is not acceptable in the home setting when they are the only aide. Above all, be assertive and express your needs and expectations right up front, and get everything in the care plan from the beginning when you do sign on with an agency. Again, thru experience, I found it easier than trying to add things later that you forgot, when the aide may be resistant to being given more duties.

One [more] thing is the importance of being visible. I work, so most times it is just my mother and the aide during the day. If possible, don’t be afraid to pop in un-announced from time to time. And see if you can get friends/relatives to do the same, to visit. Then get their impressions of what they saw and heard. My mother has different morning and afternoon aides from different agencies, then has “lunch buddies” (various close friends) who come each noon to give her lunch and company. I routinely ask them for feedback on how they found her–was she sitting up in the bed with the side rails up, was she clean and neat, were the bedroom/bathroom/kitchen clean and neat and as odor-free as possible, was she in a good mood or upset? They love my Mom and want the best for her, so they are not hesitant to report anything they are not comfortable with.”

“Picking a Nursing Home” article including a list of ombudsman contacts

This article on selecting a nursing home is in the “Patient Money” series in the New York Times (nytimes.com). Two useful resources mentioned in the article are:

* a list of the ombudsman contacts by state.
http://www.ltcombudsman.org/ombudsman

* Medicare’s Nursing Home Checklist
http://www.medicare.gov/nursing/checklist.pdf

Here’s a link to the full article:

http://www.nytimes.com/2010/03/20/health/20patient.html
Stressful but Vital: Picking a Nursing Home
By Walecia Konrad
New York Times

March 18, 2010

PSP “drove us to open a shop”

This article about the wife of a British gentleman with PSP was mentioned on the PSP Europe Association’s website.

http://www.telegraph.co.uk/finance/your … -shop.html

‘Illness drove us to open a shop’
When David Clifton was diagnosed with progressive supranuclear palsy, a degenerative brain disease, his family could have given up.

By Richard Tyler, Enterprise Editor
Published: 3:26PM GMT 16 Mar 2010
Telegraph (UK)

Instead, his wife Sheila and their two daughters, Amy and Nicola, have just opened a shop.

“His illness drove us to do this,” says Amy, 30. “When someone is diagnosed with a terminal illness all too quickly you realise we are all here for a very short time. It can happen to anybody.”

Sheila Clifton, 44, from Nailsea, near Bristol, left her job as an accounts manager at a local publishing company in 2006 to look after her husband. In her spare time she made bespoke handbags and has since studied stained glass at her local college.

“Mum cares for Dad full time and she needs an outlet. She is a creative person,” says Amy.

The family tried hiring stalls at local trade fairs but did not think they worked well as spaces for local craftspeople and artists to show their wares.

“Mum said to me and my sister one day, ‘I really fancy opening a shop’. We looked into it,” says Amy. They found a vacant premises just down the road from their home, making it ideal for Sheila to balance David’s care with running the business.

Amy says: “A lot of it was down to luck. It’s a big shop and we have lots of space to fill. We got a really good deal. They are developing the building next year so no established business was prepared to take it on. Our plan is to establish ourselves and get known as a place to find really lovely things.”

The Blue Room opened its doors 10 days ago and Amy reports that trade at the craft and arts gallery has been brisk. “Saturday went amazingly well, but strangely Tuesday was better, with more people coming in and more sales. We have had fantastic comments from people, both who know us and those who don’t,” she says.

They are charging a fee and commission to display, promote and sell any works. Amy is building a website and plans to publish a newsletter to encourage customers to return. It is her second enterprise ­ she also has a copywriting venture called Hartland Creative ­ as well as a full-time job.

She laughs at the suggestion that they are fortunate that they all get on ­ setting up a business with parents and siblings can be fraught.

“We have always been a close family and we are really lucky that we like each other,” says Amy. “We all get on so well. Mum and Dad, when he was well, always encouraged us to do what we wanted to do; not sitting and letting the world pass us by.”

For more information on progressive supranuclear palsy: www.pspeur.org

Images – Eye Movement Problems in PSP

I ran across this webpage that’s part of the PSP genetic and environmental risk factors study:
http://pspstudy.com/oculomotordisturbances.html

The first set of pictures is about voluntary vs. involuntary eye movement:

“The upper left hand picture shows this PSP patient’s difficulty in voluntarily looking upwards; however, as can be observed in the lower picture, with moving the head downwards (doll’s head maneuver), his eyes go upward, showing that he does not have an involvement of the oculomotor nuclei in the brainstem. The lesion, rather, is above these nuclei, showing the patient’s vertical supranuclear gaze palsy.”

Note that “supranuclear” refers to the pathology being above the oculomotor nuclei. “Palsy” refers to the eyes.

The lower picture shows someone with a “classic” PSP stare:

“The picture to the left shows a patient exhibiting what is called a ‘staring face,’ due to her difficulties in moving her eyes, decreased blinking and some facial ‘dystonia’.”

Good, short description of PSP

This good, short description of PSP is on the Genetic and Environmental Risk Factors in PSP study website. (This is the NIH-funded study being conducted under the leadership of Dr. Irene Litvan at the University of Louisville.) I liked the term “intellectual losses” rather than dementia or cognitive impairments.

http://pspstudy.com/aboutpsp.html

Facts About Progressive Supranuclear Palsy and Related Disorders

* Progressive Supranuclear Palsy (PSP) is the most common atypical parkinsonian disorder.

* Approximately 20,000 Americans – or 5 in every 100,000 people over the age of 60 – have PSP, making it much less common than Parkinson’s disease, which affects more than 1,000,000 Americans, but more common than amyotrophic lateral sclerosis (Lou Gherig’s disease). Patients are usually middle- aged or elderly. Men are affected more often than women.

* Experts suspect that PSP is under-diagnosed, or misdiagnosed as having Parkinson’s disease as affected persons may dismiss symptoms as signs of aging.

* Symptoms of PSP are caused by a gradual deterioration of brain cells in a few, tiny, but important places at the base of the brain called the brainstem. One of these areas, the substantia nigra, is also affected in Parkinson’s disease. Damage to this region of the brain accounts for the motor symptoms that PSP and Parkinson’s have in common. However, involvement of other motor nuclei in PSP explain these patients’ limited or lack of benefit from dopaminergic therapy.

* Abnormal deposits of the protein Tau, which are also found in Alzheimer’s disease, are characteristic of PSP, suggesting a possible link between these two neurodegenerative diseases.

* Symptoms may vary greatly from person to person, but commonly include:

o Loss of balance while walking. At times, the falls are described by the person experiencing them as dizziness attacks, prompting suspicion of an inner ear problem.

o Paralysis (“palsy”) of eye movements, especially in the downward direction.

o Emotional or personality changes such as apathy and irritability.

o Slurred speech and intellectual losses such as difficulty recalling events, mental slowing, and difficulty with abstract reasoning.

* PSP is often misdiagnosed as Parkinson’s disease because of the general slowing of movement. Less often, it is mistaken for Alzheimer’s disease or frontal dementia, because of changes in intellect and personality.

* Scientists do not know what causes PSP. There is no evidence that PSP is contagious. Genetic factors alone have not been implicated in most patients. Current scientific theories suggest a combination of environmental, occupational or other genetic risk factors.

“Balance & Eye Movement Training”-WebinarNotes

Here are my notes from tonight’s CurePSP webinar with Dr. Cris Zampieri on “Balance and Eye Movement Training in PSP.”

Dr. Zampieri’s presentation was terrific. However, the Q&A afterwards was almost worthless. So many questions had absolutely nothing to do with the topic at hand. This has been a problem to varying degrees with all of the webinars. (As the next two webinars are entirely Q&A, I do hope the organizers can do a better job screening the questions.)

Dr. Zampieri co-authored two interesting articles on balance and eye movement training in PSP in late 2008 and early 2009. In addition to the webinar tonight, there’s a very nice layperson-oriented summary of the research in the March 30, 2009 issue of a publication called “Today in PT.” See:
http://news.todayinpt.com/article/20090 … 4/90327004

You can find the December 2008 article in the Physical Therapy journal for free online here:
http://ptjournal.apta.org/cgi/reprint/88/12/1460 (PDF version)

The February 2009 article in the Archives of Physical Medicine & Rehabilitation is NOT available for free online. A few of those excerpts and the abstract were posted here:
http://forum.psp.org/viewtopic.php?t=7837

“Balance & Eye Movement Training in PSP”
Cris Zampieri, PhD, PT
CurePSP Webinar, 3/11/10

Background: She is currently doing research at the NIH on gait and balance in neurological disorders. She is a researcher, not a clinician. She has a PhD in Rehab Science from the University of Minnesota. Her thesis was on rehabilitation of gaze control to improve attention and mobility in PSP.

The study – published with Dr. Fabio – was on the interplay between eye movements, gait and balance in PSP.

Eye movements are important to balance:
* Saccades (quick eye movements) bring object of interest to focus
* VOR (vestibulo-ocular reflex) – stabilization of gaze; helps keep the visual image steady while the head moves

Vestibular: self to earth
Vision: object to object
Somatosensory: self to self (proprioceptors)

Eye movements are important to walking:
* Saccades helps when changing direction of walking, avoiding obstacles on the walking path, stepping up/down (stairs, curbs), judging distances
* VOR helps to keep the visual image steady as we move our head up and down while walking, turning
* Problems with eye movements have been associated to increased risk of falling

Balance, gait and eye movement problems in PSP:
* Bradykinesia (slow body movements): slower walking, slower preparatory movement to overcome obstacles and slower reactive movement
* Axial rigidity (limited flexibility, especially trunk): limits size of preparatory and reactive movements
* Vertical gaze palsy (slow eye movements, especially vertical): slower saccades compromise tasks that need visual input such as walking, avoiding obstacles, turning, stepping up/down (stairs, curbs)

Rehabilitation in PSP:
* Very little research on this topic
* Before our study, only 3 research studies done (1986, 1993, 2003). All were case reports (1 or 2 patients). All focused on gait or balance rehab; there was NO eye movement training.
* Our study was the first involving a group of patients (ie, small clinical trial) and involving eye movement training as part of the rehabilitation program in PSP.

Optometrist world is separated from the physical therapy world and the neurology world. We tried to bring these worlds together.

This was a first step. It’s necessary to study these techniques in hundreds of patients before we can say there’s an effect.

About the study:
* 20 PSP subjects: moderate impairments on clinical exam; able to walk short distances independently; corrected visual acuity 20/70; no recent eye surgery; no neurological problems other than PSP; no acute orthopedic problems
* Divided into two groups: one group received eye plus balance training; the other got balance training only. Eye+balance training group: 5 males/5 female, 71 years old (average). Balance training group: 5 males/4 females, 67 years old (average).

Exercises – where, how, when:
* At the University of Minnesota PT Dept.
* Individual sessions delivered by trained researchers. Subjects were supervised for safety.
* One hour, 3 times a week, for 4 weeks

Eye movement training included two items:
* Computer-based saccade training. Subjects sat in front of a computer screen. An arrow pointing in some direction was shown. Subjects had to move their eyes in the direction of the arrow. The exercise focused on pushing the eyes to move. Software from www.visionbuilder.no A free sample can be downloaded.
* Biofeedback training. Subjects wore a BIRO (binocular infrared recording system).

Eye movement/balance training included two items:
* Scanning environment to identify hidden objects
* Platform limb cue training. Have to pay attention to arrow and sound to make the right choice about whether there’s a step in front of them.

Balance training included four items for those in the eye/balance training group:
* Romberg: stand with feet close together; eyes open and eyes closed; with eyes closed, the subject must rely on the VOR and somatosensory system for balance
* Turning
* Sit-to-stand. The trick is to lean forward as much as possible to stand up.
* Compensatory stepping

The balance training only group got the above four items once a week. The other two days a week, they got this balance training:
* Alternate knee touch
* Side step: 5 steps to each side
* Heel-to-toe walk: need more balance for this
* Toe lifts
* Heel lifts
* Single leg stands
* Leg lifts (to the side): helps strengthen the glutious
* Leg swings (front and back)
* Step ups: this was not associated with eye movement.

Testing – when, what, how:
* Before and after the program of exercises
* Measured walking speed; walking stance time; walking step length; timed Up and Go test; eye movements (eye only movements, eyes plus head downward movements)
* Used motion analysis sensors (sensors on head and legs, when walking) and infra-red eye sensors

Up and Go test:
* stand up from a chair, walk 3 meters, turn around, walk back to the chair, sit down
* how long does it take to do this?
* the amount of time is related to risk of falling

The VOR cannot be suppressed.

Statistically significant results for the eye+balance group: (in order of largest effect)
Increase in vertical eye movements
Increase in walking speed
Decrease in walking stance time
Decrease in timed Up and Go time

Statistically significant results for the balance only group:
Increase in walking step length. The exercises incorporate range of motion

Conclusions:
* Balance and eye movement training might be effective to improve gait and eye-body coordination in patients with moderate PSP
* Potential way to change circuits in brain that control eye movement and walking in PSP

We all know how hard it is to diagnose PSP. And how hard it is to bring patients to a study. And how hard it is to convince patients that this is worth a try.

[These are Dr. Zampieri’s own questions and answers! This was part of her presentation.]

Q: Can we generalize the results to other patients with PSP?
A: We need larger clinical trials before we can say it’s effective training.

Q: What parts of the intervention were responsible for the improvements?
A: The training included many components. All we can say is that the whole package worked together.

Q: Is there a retention of the benefits after training stops?
A: Another study has to be done for this.

Q: What patients respond better to rehab – early, moderate, or advanced?
A: All we can say is that moderate patients improved.

Q: Would more/less therapy have led to the same results?
A: We don’t know. More studies have to be done.

Q: How does rehab impact risk for falling?
A: It’s tricky to measure falls.

Two papers were published on the study:
Zampieri, et al. Physical Therapy 2008.
Zampieri, et al. Archives of Physical Medicine & Rehabilitation 2009.

QUESTION & ANSWER:
[This is the open Q&A, with questions from the audience. Unless indicated, the answers were given by Dr. Zampieri. Janet Edmunson, Chair of the CurePSP Board, answered some questions. I’ve re-organized the Q&A, and have deleted the irrelevant questions.]

IMPLICATIONS OF THE STUDY

Q: Can I get this eye and balance training in south Florida?

A: The whole program is not totally available in a clinic.

We put the biofeedback together ourselves. We built the device there so it’s not available.

PTs wouldn’t have access to that part. But, yes, the software is available. PTs know the exercises. Other items can be incorporated by PTs.

Q: Does exercise/therapy have any effect on balance or eye movement in PSP patients? So far, we haven’t found any medication, activity, or treatment that has made any improvement.

A: This was the focus of the study. There is nothing out there. My study showed eye and balance training showed a benefit.

We all should be exercising. Exercise is never bad. Use it or lose it.

Q: What exercises should be done (and how often) when the disease becomes a serious balance problem?

A: The same things we did.

Q: Is it worth focusing on balance and eye gaze when the patient can no longer stand or straighten his head to see?

A: I don’t know. Maybe.

STUDY DETAILS

Q: Vision Builder has many selections. Which one should we use?
Q: Is the saccade practice the critical one for PSP?

A: Look for saccade training.

Q: Can you define what you mean by the disease being moderate?

A: Clinicians have a scale that is a list of symptoms that are frequently observed in PSP. Clinicians can grade 0 to 4 the severity of symptoms. The PSP Rating Scale includes saccades, postural instability (pull back test), bradykinesia (opening and closing hands), etc. The composite score tells clinicians if the patient is mild, moderate, or severe.

Q: Many medications have dizziness as a side effect. Were patients required to not have any medication changes prior to and during the study?

A: Many medications do have an effect on balance. We did not change medications in the study. Most of our subjects were not taking medications that would effect balance. Some did.

EYE MOVEMENT PROBLEMS

Q: Is the balance problem caused by the eyes not looking up or down?

A: In part. It’s also caused by bradykinesia and rigidity.

Q: What vestibular issues do PSP patients have?

A: They have problems suppressing VOR. PSP patients may move their heads but their eyes go in a different direction (often opposite).

Q: Could you address the differences in the visual disturbances between PSP and CBD? Falls play a very significant role in these disorders. I am interested in treatment strategies to assist with management.

A: I haven’t treated patients with CBD. I have read about it.

In PSP, eye movements are slow. In CBD, the start of the movement is slow (the latency is slow). The involvement in walking and balance are the same.

Q: Is there anything that can be done to prevent nystagmus, which is an uncontrolled movement of the eyes, usually from side to side, but sometimes the eyes swing up and down or even in a circular movement.

A: Our therapy was not designed to treat nystagmus. It was designed to treat the slowness of eye movement. The biofeedback part of the intervention was related to nystagmus.

Find out about vision therapy from an optometrist.

Looking for things (such as at a grocery store) is a good exercise anyone can do — without software or special equipment.

PHYSICAL THERAPY

Q: Why does PSP cause the patient to run into walls and doorways, even when being guided?

A: Two components there — motor (bradykinesia, rigidity, slow eye movement) and thinking. My presentation was about motor issues.

In terms of thinking issues… There may be impulsive behavior related to the frontal area of the brain. This relates to judgment. Also, the person may realize too slowly there’s something in the way.

Q: What is the difference between exercise and PT?

A: PT uses exercise as a therapeutic approach. PT controls the exercises and adapts them to someone with motor problems. PT is controlled exercise. There is an objective to the exercise. The PT knows what exercise is effective for specific problems.

Q: Interested in efficacy of therapy — physical and speech.

A: Anything is good.

Q: My mother is dragging her leg. Any recommendations on strengthening?

A: I would need to see the patient to say. Talk to the neurologist and the physical therapist. Many things cause someone to drag a leg. (Could be lack of strength, rigidity, bradykinesia, anything.)

Q: I have been struggling with PSP for 6 years. I have fallen all the way down over 1200 times. Now my home caregiver has decided I no longer need physical therapy.

A: The objectives of PT have to be adjusted to what the patient is presenting. If it were me, I would be active as long as I could be.

A by Janet Edmunson: There are ways to be safe while exercising. It is important to avoid falling.

A by audience member: Most insurance companies will only pay for PT if there’s demonstrated improvement.

Q: If the outcome is going to be the same — namely, loss of life — is PT mainly for patient comfort?

A: I wouldn’t say this. I think it’s important to be active for as long as possible.

It depends on the stage of the disease. If we are looking at final stage with respiratory problems, then, yes, for comfort. But while activity is still possible, it should be sought.

Q: Does PT for PSP patients prolong their life at all?

A: I don’t know if anyone can answer this question.

Research is showing that exercise is so beneficial that if we could give a pill of exercise it would be the best pill ever. Exercise is important for neuro-plasticity.

Rats that have been modified to have Parkinson’s Disease that are active, experience delayed progression of PD than rats that are not active.

I’m an exercise advocate!

Q: When should PT be terminated?

A: This is a broad question. The answer is not black and white.

Range of motion is important.

BALANCE

Q: When my husband with PSP sleeps over 12 hours, his balance is much better. Is there any relationship between balance and hours slept? Do most PSP patients sleep so many hours?

A: If this is working, that’s great! The brain must be getting rest.

Q: My husband has MSA-C. He starts the day out with better balance than the evening time. The change is drastic. Can you tell me why the degree of balance changes throughout the same day, not only from stage to stage, of the disease?

A: I don’t have experience with MSA. I don’t remember seeing this drastic change with PSP. I can’t answer this question.

VISION AND OTHER EYE ISSUES

Q: The eye movement interferes with ability to read text. Can eye exercise help a CBD patient with this problem?

A: Look into optometric vision therapy. There are lots of exercises for kids that improve reading a great deal.

Find this sort of therapy through optometric societies.

Q: What does a PSP patient see?

A: There’s a difference between vision and eye movement. Eye movement is about the ability to use your vision.

Q: Is there any type of eyeglass lens that will help to focus things that are below the fixed eyeball?

A: Again, there’s a difference between eye movement and vision. Glasses won’t help you look down. They just help you see better what you are looking at. Prisms are a type of eyeglass that might help.

Q: I have pain above my eyes. Is this due to muscle problems? My left eye does not open all the way.

A: This brings to mind blepharospasm. Talk to your neurologist about this.

A couple of our subjects had blepharospasm. One touched his forehead to encourage the eye lid to open. The other just waited until the eye lid opened.

A by Janet Edmunson: You might consider speaking with your neurologist about botox.

MASSAGE

Q: Do you recommend massage therapy?

A: Massage helps muscles relax. It helps you feel better. It’s valuable. This is a personal opinion.

A by Janet Edmunson: Range of motion exercise is a good thing to do.

“Balance & Eye Movement Training in PSP” – Webinar Notes 3-11-10

Here are my notes from tonight’s CurePSP (psp.org) webinar with Dr. Cris Zampieri on “Balance and Eye Movement Training in PSP.”

Dr. Zampieri’s presentation was terrific.

However, the Q&A afterwards was almost worthless.  So many questions had absolutely nothing to do with the topic at hand.  This has been a problem to varying degrees with all of the webinars.  (As the next two webinars are entirely Q&A, I do hope the organizers can do a better job screening the questions.)

Dr. Zampieri co-authored two interesting articles on balance and eye movement training in PSP in late 2008 and early 2009.  In addition to the webinar tonight, there’s a very nice layperson-oriented summary of the research in the March 30, 2009 issue of a publication called “Today in PT.”  See:

news.todayinpt.com/article/20090330/TODAYINPT0104/90327004

You can find the December 2008 article in the Physical Therapy journal for free online here:

ptjournal.apta.org/cgi/reprint/88/12/1460
(PDF version)

The February 2009 article in the Archives of Physical Medicine & Rehabilitation is NOT available for free online.  A few of those excerpts and the abstract were posted here:

forum.psp.org/viewtopic.php?t=7837

Here are my notes from tonight’s webinar.

Robin

————————————-

“Balance & Eye Movement Training in PSP”
Cris Zampieri, PhD, PT
CurePSP Webinar, 3/11/10

Background:  She is currently doing research at the NIH on gait and balance in neurological disorders.  She is a researcher, not a clinician.  She has a PhD in Rehab Science from the University of Minnesota.  Her thesis was on rehabilitation of gaze control to improve attention and mobility in PSP.

The study – published with Dr. Fabio – was on the interplay between eye movements, gait and balance in PSP.

Eye movements are important to balance:
* Saccades (quick eye movements) bring object of interest to focus
* VOR (vestibulo-ocular reflex) – stabilization of gaze; helps keep the visual image steady while the head moves

Vestibular:  self to earth
Vision:  object to object
Somatosensory:  self to self (proprioceptors)

Eye movements are important to walking:
* Saccades helps when changing direction of walking, avoiding obstacles on the walking path, stepping up/down (stairs, curbs), judging distances
* VOR helps to keep the visual image steady as we move our head up and down while walking, turning
* Problems with eye movements have been associated to increased risk of falling

Balance, gait and eye movement problems in PSP:
* Bradykinesia (slow body movements):  slower walking, slower preparatory movement to overcome obstacles and slower reactive movement
* Axial rigidity (limited flexibility, especially trunk):  limits size of preparatory and reactive movements
* Vertical gaze palsy (slow eye movements, especially vertical):  slower saccades compromise tasks that need visual input such as walking, avoiding obstacles, turning, stepping up/down (stairs, curbs)

Rehabilitation in PSP:
* Very little research on this topic
* Before our study, only 3 research studies done (1986, 1993, 2003).  All were case reports (1 or 2 patients).  All focused on gait or balance rehab; there was NO eye movement training.
* Our study was the first involving a group of patients (ie, small clinical trial) and involving eye movement training as part of the rehabilitation program in PSP.

Optometrist world is separated from the physical therapy world and the neurology world.  We tried to bring these worlds together.

This was a first step.  It’s necessary to study these techniques in hundreds of patients before we can say there’s an effect.

About the study:
* 20 PSP subjects:  moderate impairments on clinical exam; able to walk short distances independently; corrected visual acuity 20/70; no recent eye surgery; no neurological problems other than PSP; no acute orthopedic problems
* Divided into two groups:  one group received eye plus balance training; the other got balance training only.  Eye+balance training group:  5 males/5 female, 71 years old (average).  Balance training group:  5 males/4 females, 67 years old (average).

Exercises – where, how, when:
* At the University of Minnesota PT Dept.
* Individual sessions delivered by trained researchers.  Subjects were supervised for safety.
* One hour, 3 times a week, for 4 weeks

Eye movement training included two items:
* Computer-based saccade training.  Subjects sat in front of a computer screen.  An arrow pointing in some direction was shown.  Subjects had to move their eyes in the direction of the arrow.  The exercise focused on pushing the eyes to move.  Software from www.visionbuilder.no A free sample can be downloaded.
* Biofeedback training.  Subjects wore a BIRO (binocular infrared recording system).

Eye movement/balance training included two items:
* Scanning environment to identify hidden objects
* Platform limb cue training.  Have to pay attention to arrow and sound to make the right choice about whether there’s a step in front of them.

Balance training included four items for those in the eye/balance training group:
* Romberg:  stand with feet close together; eyes open and eyes closed; with eyes closed, the subject must rely on the VOR and somatosensory system for balance
* Turning
* Sit-to-stand.  The trick is to lean forward as much as possible to stand up.
* Compensatory stepping

The balance training only group got the above four items once a week.  The other two days a week, they got this balance training:
* Alternate knee touch
* Side step:  5 steps to each side
* Heel-to-toe walk:  need more balance for this
* Toe lifts
* Heel lifts
* Single leg stands
* Leg lifts (to the side):  helps strengthen the glutious
* Leg swings (front and back)
* Step ups:  this was not associated with eye movement.

Testing – when, what, how:
* Before and after the program of exercises
* Measured walking speed; walking stance time; walking step length; timed Up and Go test; eye movements (eye only movements, eyes plus head downward movements)
* Used motion analysis sensors (sensors on head and legs, when walking) and infra-red eye sensors

Up and Go test:
* stand up from a chair, walk 3 meters, turn around, walk back to the chair, sit down
* how long does it take to do this?
* the amount of time is related to risk of falling

The VOR cannot be suppressed.

Statistically significant results for the eye+balance group:  (in order of largest effect)
Increase in vertical eye movements
Increase in walking speed
Decrease in walking stance time
Decrease in timed Up and Go time

Statistically significant results for the balance only group:
Increase in walking step length.  The exercises incorporate range of motion

Conclusions:
* Balance and eye movement training might be effective to improve gait and eye-body coordination in patients with moderate PSP
* Potential way to change circuits in brain that control eye movement and walking in PSP

We all know how hard it is to diagnose PSP.  And how hard it is to bring patients to a study.  And how hard it is to convince patients that this is worth a try.

[These are Dr. Zampieri’s own questions and answers!  This was part of her presentation.]

Q:  Can we generalize the results to other patients with PSP?
A:  We need larger clinical trials before we can say it’s effective training.

Q:  What parts of the intervention were responsible for the improvements?
A:  The training included many components.  All we can say is that the whole package worked together.

Q:  Is there a retention of the benefits after training stops?
A:  Another study has to be done for this.

Q:  What patients respond better to rehab – early, moderate, or advanced?
A:  All we can say is that moderate patients improved.

Q:  Would more/less therapy have led to the same results?
A:  We don’t know.  More studies have to be done.

Q:  How does rehab impact risk for falling?
A:  It’s tricky to measure falls.

Two papers were published on the study:
Zampieri, et al.  Physical Therapy 2008.
Zampieri, et al.  Archives of Physical Medicine & Rehabilitation 2009.

QUESTION & ANSWER:
[This is the open Q&A, with questions from the audience.  Unless indicated, the answers were given by Dr. Zampieri.  Janet Edmunson, Chair of the CurePSP Board, answered some questions.  I’ve re-organized the Q&A, and will probably delete the irrelevant questions.]

IMPLICATIONS OF THE STUDY

Q:  Can I get this eye and balance training in south Florida?

A:  The whole program is not totally available in a clinic.

We put the biofeedback together ourselves.  We built the device there so it’s not available.

PTs wouldn’t have access to that part.  But, yes, the software is available.  PTs know the exercises.  Other items can be incorporated by PTs.

Q:  Does exercise/therapy have any effect on balance or eye movement in PSP patients?  So far, we haven’t found any medication, activity, or treatment that has made any improvement.

A:  This was the focus of the study.  There is nothing out there.  My study showed eye and balance training showed a benefit.

We all should be exercising.  Exercise is never bad.  Use it or lose it.

Q:  What exercises should be done (and how often) when the disease becomes a serious balance problem?

A:  The same things we did.

Q:  Is it worth focusing on balance and eye gaze when the patient can no longer stand or straighten his head to see?

A:  I don’t know.  Maybe.

STUDY DETAILS

Q:  Vision Builder has many selections.  Which one should we use?
Q:  Is the saccade practice the critical one for PSP?

A:  Look for saccade training.

Q:  Can you define what you mean by the disease being moderate?

A:  Clinicians have a scale that is a list of symptoms that are frequently observed in PSP.  Clinicians can grade 0 to 4 the severity of symptoms.  The PSP Rating Scale includes saccades, postural instability (pull back test), bradykinesia (opening and closing hands), etc.  The composite score tells clinicians if the patient is mild, moderate, or severe.

Q:  Many medications have dizziness as a side effect.  Were patients required to not have any medication changes prior to and during the study?

A:  Many medications do have an effect on balance.  We did not change medications in the study.  Most of our subjects were not taking medications that would effect balance.  Some did.

EYE MOVEMENT PROBLEMS

Q:  Is the balance problem caused by the eyes not looking up or down?

A:  In part.  It’s also caused by bradykinesia and rigidity.

Q:  What vestibular issues do PSP patients have?

A:  They have problems suppressing VOR.  PSP patients may move their heads but their eyes go in a different direction (often opposite).

Q:  Could you address the differences in the visual disturbances between PSP and CBD?  Falls play a very significant role in these disorders.  I am interested in treatment strategies to assist with management.

A:  I haven’t treated patients with CBD.  I have read about it.

In PSP, eye movements are slow.  In CBD, the start of the movement is slow (the latency is slow).  The involvement in walking and balance are the same.

Q:  Is there anything that can be done to prevent nystagmus, which is an uncontrolled movement of the eyes, usually from side to side, but sometimes the eyes swing up and down or even in a circular movement.

A:  Our therapy was not designed to treat nystagmus.  It was designed to treat the slowness of eye movement.  The biofeedback part of the intervention was related to nystagmus.

Find out about vision therapy from an optometrist.

Looking for things (such as at a grocery store) is a good exercise anyone can do — without software or special equipment.

PHYSICAL THERAPY

Q:  Why does PSP cause the patient to run into walls and doorways, even when being guided?

A:  Two components there — motor (bradykinesia, rigidity, slow eye movement) and thinking.  My presentation was about motor issues.

In terms of thinking issues…  There may be impulsive behavior related to the frontal area of the brain.  This relates to judgment.  Also, the person may realize too slowly there’s something in the way.

Q:  What is the difference between exercise and PT?

A:  PT uses exercise as a therapeutic approach.  PT controls the exercises and adapts them to someone with motor problems.  PT is controlled exercise.  There is an objective to the exercise.  The PT knows what exercise is effective for specific problems.

Q:  Interested in efficacy of therapy — physical and speech.

A:  Anything is good.

Q:  My mother is dragging her leg.  Any recommendations on strengthening?

A:  I would need to see the patient to say.  Talk to the neurologist and the physical therapist.  Many things cause someone to drag a leg.  (Could be lack of strength, rigidity, bradykinesia, anything.)

Q:  I have been struggling with PSP for 6 years.  I have fallen all the way down over 1200 times.  Now my home caregiver has decided I no longer need physical therapy.

A:  The objectives of PT have to be adjusted to what the patient is presenting.  If it were me, I would be active as long as I could be.

A by Janet Edmunson:  There are ways to be safe while exercising.  It is important to avoid falling.

A by audience member:  Most insurance companies will only pay for PT if there’s demonstrated improvement.

Q:  If the outcome is going to be the same — namely, loss of life — is PT mainly for patient comfort?

A:  I wouldn’t say this.  I think it’s important to be active for as long as possible.

It depends on the stage of the disease.  If we are looking at final stage with respiratory problems, then, yes, for comfort.  But while activity is still possible, it should be sought.

Q:  Does PT for PSP patients prolong their life at all?

A:  I don’t know if anyone can answer this question.

Research is showing that exercise is so beneficial that if we could give a pill of exercise it would be the best pill ever.  Exercise is important for neuro-plasticity.

Rats that have been modified to have Parkinson’s Disease that are active, experience delayed progression of PD than rats that are not active.

I’m an exercise advocate!

Q:  When should PT be terminated?

A:  This is a broad question.  The answer is not black and white.

Range of motion is important.

BALANCE

Q:  When my husband with PSP sleeps over 12 hours, his balance is much better.  Is there any relationship between balance and hours slept?  Do most PSP patients sleep so many hours?

A:  If this is working, that’s great!  The brain must be getting rest.

Q:  My husband has MSA-C.  He starts the day out with better balance than the evening time.  The change is drastic.  Can you tell me why the degree of balance changes throughout the same day, not only from stage to stage, of the disease?

A:  I don’t have experience with MSA.  I don’t remember seeing this drastic change with PSP.  I can’t answer this question.

VISION AND OTHER EYE ISSUES

Q:  The eye movement interferes with ability to read text.  Can eye exercise help a CBD patient with this problem?

A:  Look into optometric vision therapy.  There are lots of exercises for kids that improve reading a great deal.

Find this sort of therapy through optometric societies.

Q:  What does a PSP patient see?

A:  There’s a difference between vision and eye movement.  Eye movement is about the ability to use your vision.

Q:  Is there any type of eyeglass lens that will help to focus things that are below the fixed eyeball?

A:  Again, there’s a difference between eye movement and vision.  Glasses won’t help you look down.  They just help you see better what you are looking at.  Prisms are a type of eyeglass that might help.

Q:  I have pain above my eyes.  Is this due to muscle problems?  My left eye does not open all the way.

A:  This brings to mind blepharospasm.  Talk to your neurologist about this.

A couple of our subjects had blepharospasm.  One touched his forehead to encourage the eye lid to open.  The other just waited until the eye lid opened.

A by Janet Edmunson:  You might consider speaking with your neurologist about botox.

MASSAGE

Q:  Do you recommend massage therapy?

A:  Massage helps muscles relax.  It helps you feel better.  It’s valuable.  This is a personal opinion.

A by Janet Edmunson:  Range of motion exercise is a good thing to do.

NOTE:
The next two webinars will be *all* Q&A.  Submit questions now – specify if they are for PT or SLP.