Hospital Surgery Ratings

Last week I paid for access to Consumer Reports magazine to get washer/dryer ratings.  While I was at it, I looked to see what else was available.  In the September 2013 magazine, hospitals around the US are rated in terms of “avoiding adverse events in Medicare patients during their hospital stay for surgery.  Specifically, the Ratings are based on the percentage of a hospital’s surgery patients who died in the hospital or stayed longer than expected for their procedure.”

“The analysis looked at Medicare claims data from 2009 through 2011 for patients undergoing 27 categories of common scheduled surgeries.  For each hospital, the results for all procedures are combined into an overall surgery Rating. …[Some] hospitals themselves use this approach to monitor quality.”

The ratings are 5 levels from “Better” to “Worse.”

In Northern and Central California, these hospitals received a “Better” overall surgery rating:  (in alphabetical order)
Enloe Medical Center, Chico
French Hospital, San Luis Obispo
Fresno Heart and Surgical Hospital
Fresno Surgical Hospital
Mercy Medical Center Redding
Oroville Hospital
Sacramento Medical Center
Sequoia Hospital, Redwood City
Shasta Regional Medical Center, Redding
St. Helena Hospital Napa Valley, St. Helena
Sutter Lakeside Hospital, Lakeport
Sutter Surgical Hospital – North Valley, Yuba City
Washington Hospital, Fremont

These hospitals received the next rating lower than “Better”:
Alta Bates Summit Medical Center, Berkeley
Alta Bates Summit Medical Center – Summit Campus, Oakland
Bakersfield Heart Hospital, Bakersfield
Clovis Community Medical Center, Clovis
El Camino Hospital, Mountain View
Mercy General Hospital, Sacramento
Mercy Hospitals of Bakersfield, Bakersfield
Methodist Hospital of Sacramento
Sierra Nevada Memorial Hospital, Grass Valley
St. Elizabeth Community Hospital, Red Bluff
St. Joseph Hospital, Eureka
St. Joseph’s Medical Center, Stockton
Stanislaus Surgical Hospital, Modesto
Sutter Amador Hospital, Jackson
Sutter Auburn Faith Hospital, Auburn
Sutter Davis Hospital, Davis
Sutter Medical Center, Sacramento

See consumerreports.org/hospitalratings for:

  • an article on “How Safe is Your Hospital”  (available at no charge)
  • “Your Safer-Surgery Survival Guide”  (available at no charge)
  • rankings for 2463 hospitals in the US.  Ratings are for 5 procedures including replacement of the hip or knee and angioplasty.  And there are scores for safety, bloodstream infections, avoiding readmissions, drug information, and adverse events.  (there is a fee to see the info)

Robin

“How Do I Manage My Parents’ Money When They Can’t?”

This post will be of particular interest to adult children caregivers.

This one sentence is a good summary of this blog post:  “The hardest part of managing a parent’s money is figuring out how to make it last.”

This blog post is by Paul Solman, a journalist who covers business and economic news on the PBS NewsHour.  He and his sister gained control over their father’s finances.  He writes about managing his parent’s money when the parent can’t. Wonderfully, the father must’ve had a large nest-egg because his budget was $135K per year.

Similarly, after my brother and I took over our father’s finances, we wanted safe investment vehicles.  We also kept a good chunk of money in cash in case of disaster.  Disaster did strike after Dad had a heart attack, developed pneumonia, and was put on a ventilator.  He lived several months in a care facility that could handle those with vents.  Incredibly, it cost $1K *per day* to live in that care facility.  When he died, we had about $10K left in cash.  A little too close for comfort…

Here’s a link to Paul Solman’s blog post:

www.pbs.org/newshour/businessdesk/2013/08/how-do-i-manage-my-parents-money-when-they-cant.html

How Do I Manage My Parents’ Money When They Can’t?
PBS NewsHour
By Paul Solman
August 2013

This second link includes Paul Solman’s asset allocation plus, more importantly, his step-by-step advise on how to find a financial advisor:

www.pbs.org/newshour/businessdesk/2013/02/how-to-find-a-financial-adviso.html

Robin

PSP Association International Medical Workshop- Notes

The PSP Association is based in the UK.  It focuses on PSP and CBD throughout Europea.  They have a blog section on their website.  I occasionally find items there of interest.

In this recent blog post, Tim Rittman, a clinical research fellow in neurology, offered some notes after attending The PSP Association’s International Medical Workshop in July 2013.  You can find a link to the blog post here:

www.pspassociation.org.uk/2013/08/psp-association-international-medical-workshop/#more-6877

And the full text is copied below.

Robin


From Tim Rittman
Posted to the PSP Association’s Blog

On the 25th of July around 40 doctors and scientists from the UK and around the world met at Queen Square in London. I went along with Sian Alexander – Academic neurology trainee, researcher on clever cellular stuff and an accomplished baker of cakes (catch her on twitter @siankalexander). This meeting was a poignant echo of the diseases under discussion, coming 50 years after the first description of ‘Richardson’s syndrome’, or Progressive Supranuclear Palsy (PSP) as we know it today. The meeting covered cutting edge research in PSP and its cousin Corticobasal Degeneration (CBD). Below are some thoughts from me and Sian on the day.

At the end of the day I was left encouraged, but with a touch of disappointment. There was a hint of disappointment that two big trials in PSP had failed to show any impact on the disease. However, this is not a field where people shrug their shoulders and sit back. There was a palpable sense of optimism. The two trials had shown that it can be done. Yes, the first bites at the cherry have failed, but doing it all again is not so daunting, partly thanks to a newly formed national network of centres in the UK studying PSP and CBD. The PSP Association should take credit for raising the profile of the disease, not only amongst the general public but also for cajoling, arm twisting and, more importantly, funding researchers to take on the challenge. I overheard an American visitor who was astonished how much money the PSP Association had managed to put together to fund research and care, far outstripping their American counterparts per head of population.

To take a more in-depth view, we’ll break the sessions down and give you a feel for the main headlines from each. The range of talks and work show-cased impressed me. Although a few themes recurred throughout the day, each talk was unique and the cast was stellar in terms of reputation and quality.

The first session covered ‘basic science’, although as my brother continually reminds me there is nothing basic about it. The day kicked off with two household names from the world of dementia research. Michel Goedert takes an interest in how proteins build up in the brain, and particularly the tau protein that causes problems in PSP and CBD. He is firmly of the opinion that tau is responsible for the disease rather than being a by-stander, showing compelling evidence that tau protein travels from cell to cell through the brain causing mischief. John Hardy followed with an update on the genetics of the tau protein. He also talked about Genome Wide Association studies in PSP, trawling genetic information from people with the disease to look for clues that might push someone a few percent towards or away from getting the disease. The results so far point to 3 processes where damage occurs: integrity of nerve connections (synapses), the electrical insulation of nerves (myelin sheath)  and brain cells’ response to damage (the so-called ‘stress’ response). An intriguing talk from Steve Gentleman discussed dementia pugilistica, something that hit the news in the past week in rugby players. Although the link between head injury and PSP/CBD is far from certain and dementia pugilistica is quite different from either disease, there are similarities in how the brain appears under the microscope. This line of research promises to throw up some intriguing clues in the future.

Human disease biology came before lunch covering lumbar puncture, new brain imaging techniques and brain pathology. At the moment these tests remain very much in the research arena and for the moment do not add much to the diagnosis, but are starting to show promise in tracking the changes of disease over time. A promising new tool on the near horizon is a dye injected in the blood stream that clings to tau protein in the brain making it visible with a PET brain scanner. The usefulness of this sort of scan will need to be tested, but it sounds like we are getting close to something usable.

The most eagerly anticipated session came just after lunch, discussing therapeutics. I’ve previously written about Davunetide, and unfortunately both Tideglusib and Sodium Valproate disappointed in their results. Although, as one Alzheimer’s researcher pointed out, at least they didn’t make people worse as many of the recently tried drugs have for that disease. David Burn took us through a post-mortem of these trials. Reassuringly, the researchers involved in these studies were keen to share their data with him and are due to publish their results soon. This will help greatly in working out what went wrong and planning future studies. Hugh Nutall from the drug company Eli Lily had the trickiest talk of the day, trying to predict where PSP/CBD therapies will be in 5 years’ time. He talked about a number of promising compounds in development, many attacking the tau protein but in a different manner to previous efforts. It remains to be seen which will make it through to full blown clinical trials.

A particular step forward in clinical trials design has been the PSP rating scale, developed by the legendary Larry Golbe who was at the meeting. It is being widely used, enabling better assessments of how individuals with PSP respond to trial medicines.

The final session started with talks covering some good old-fashioned clinical questions of diagnosis and syndromes. The Queen Square Neurology department have been at the fore-front of sub-classifying PSP, CBD and similar diseases. It was a particular pleasure to have John Rohrer talk,  a neurologist and researcher in frontotemporal dementia – another disease where the tau protein builds up in brain cells. Even though us doctors might make a diagnosis of one or the other disease in the comfort of our clinic rooms, real life teaches us that under the bonnet there may be something very different going on. This is a challenge that will become increasingly important to solve if the treatments we develop only address a single disease process. In addition, picking up the earliest signs of PSP or CBD is extremely difficult, and other than spreading information about these diseases among GPs and neurologists, perhaps that is one challenge that no one came up with a good answer for.

To conclude the day, Larry Golbe led a discussion about funding priorities in PSP, who funds what research, and whether the research priorities are the right ones. The mission statement of the PSPA “Working for a World Free of PSP” was undisputed, but there was lots of ground for discussion about the best way to go about doing this. It was a thought-provoking way to end an enjoyable and educational day.

UK CBDer blogs about his journey

Dave Howarth describes himself as follows:

I’m just your average 56 year old guy who was expecting to work until I could afford not to, enjoy my life and time with family and friends and then CBD came a knocking and things changed somewhat.

In a couple of recent posts to The PSP Association website, he has written about his CBD journey.  (The PSP Association is a UK-based organization focused on PSP and CBD education, support, and research.)

In a two-part post, he describes his CBD symptoms. It seems his first symptoms were left hand numbness and alien limb syndrome in 2007 and 2009.

Here are links to the two blog posts:

The Journey So Far
Dave Howarth
Posted to The PSP Association blog

Part 1:
www.pspassociation.org.uk/2013/08/journey/#more-6788

Part 2:
www.pspassociation.org.uk/2013/08/journey-cont/#more-6793

Happy reading,
Robin

 

Put Local Emergency Phone # in Your Cell Phone

Though this is of general interest, caregivers especially should take note!

I attended a CPR and first aid class today given by my local Red Cross chapter.  One suggestion I picked up from the class is that all of us should put our city’s local emergency phone number in our cell phones so it’s handy in case of emergency.  It’s always best to call 911 from a land line but if you only have access to your cell phone, calling 911 is not recommended because it’s not really an emergency number if called from a cell phone.  To reach an emergency number on your cell phone, it’s best to call the local emergency phone number.  I live in Menlo Park, so I will program the Menlo Park emergency phone number into my cell phone.  If I’m physically in Palo Alto and call the Menlo Park phone number, my cell phone call can be easily re-routed to the Palo Alto emergency number.

You can find a list here of local emergency phone numbers for cities or communities in the Bay Area:

getice.com/news/emergencynumbers

(That list has some strange alphabetization going on….)

If you live outside the Bay Area, you can look up your city’s local emergency phone number in your phone book.  (I think some people still use those things!)

Robin

Social isolation is deadly (Slate, 8-23-13)

Many in our support group attended the July 2012 Parkinson’s Disease and Parkinsonism Caregiver Symposium in Foster City.  The keynote speaker, Dr. David Rintell, said that the social isolation caused when a caregiver stays at home 7×24 with their care recipient is as dangerous to us as smoking.  Certainly the same is true for care recipients who stay at home 7×24.

Someone in one of the online support groups I monitor posted an article in Friday’s Slate magazine.  The headline is “Loneliness is Deadly:  Social isolation kills more people than obesity does.”  The article is about the negative effects of social isolation, and about the idea that there’s stigma associated with being lonely.

Here’s a link to the article in Slate:

www.slate.com/articles/health_and_science/medical_examiner/2013/08/dangers_of_loneliness_social_isolation_is_deadlier_than_obesity.html

MEDICAL EXAMINER :  HEALTH AND MEDICINE EXPLAINED
Loneliness Is Deadly
Social isolation kills more people than obesity does — and it’s just as stigmatized.
Slate
By Jessica Olien
Posted Friday, Aug. 23, 2013, at 12:15 PM

Robin

Caution against unproven stem cell therapies (Parkinson’s, MSA, etc)

This may be of interest to everyone in our support group, regardless of diagnosis.

The Movement Disorder Society (MDS) issued a position paper this week on the use of stem cell therapies for Parkinson’s Disease (PD).  The lay summary of the position paper concludes as follows:

“[Until] such treatments are proven to be of benefit and published in recognized scientific journals that objectively scrutinize their procedures, the Society encourages patients to participate only in cell therapy studies that are part of a research program affiliated with a recognized academic institution.”

A section of the paper was about stem cell treatment for “parkinsonian syndromes.” This term applies to PD, MSA, PSP, CBD, and DLB.  That section reads:

“Present publicly offered stem cell therapies for clinical use
There are several organizations world-wide which offer stem cell therapy for clinical application in patients. There is no detailed scientific information available on the outcome of these therapies. In a recent case series, data from patients with parkinsonism who underwent these procedures were collected retrospectively(31). … The report describes 17 patients with Parkinsonian syndromes who received intrathecal application of autologous unsorted bone marrow cells. There were no changes in motor function, activities of daily living, global clinical impression or antiparkinsonian medication after a median observation period of 10 months. Two patients (12%) reported a worsening of Parkinsonian symptoms, but the intervention was otherwise safe and well tolerated. Intrathecal application of autologous bone marrow cells in such uncontrolled conditions did not produce clinical benefit in these patients.”

I’ve copied the abstract to reference #31 below.

Of the 17 patients studied, 7 have a clinical diagnosis of PD, 7 have a clinical diagnosis of MSA, and 3 have other clinical diagnoses.  This break-down fits with my experience as well:  I’ve heard more about MSA patients trying out the various stem cell treatments available around the world than I’ve heard about those with PSP, CBD, or DLB diagnoses.  The reason may be that those with MSA are younger than those with the other diagnoses, on average, so there may be more desperation on the part of the patient and family.

We have had at least one person with MSA in our local support group who went to China for stem cell treatment.  And the medical advisor to our support group, Dr. Neng Huang, also reports that he knows of someone who went to China for stem cell treatment.  Neither patient seemed to have benefitted from the treatment.

I haven’t read the full article but presumably the 7 MSA patients don’t include those who participated in a South Korean study of autologous bone marrow cells (since clinical data was available in that case).

The MDS position paper can be found here:

www.movementdisorders.org/about/committees/stem-cell.php

There is a short lay summary in the position paper, and then a scientific summary that is three times as long.  I think most of you won’t have a problem reading the scientific summary!

Finally, here’s a link to the Movement Disorder Society’s short press release about the position paper:

www.movementdisorders.org/about/newsroom/release.php?contentid=1157

Robin

—————————————————————

Abstract

Movement Disorders. 2012 Oct;27(12):1552-5.  Epub 2012 Feb 23.

Intrathecal application of autologous bone marrow cell preparations in Parkinsonian syndromes.

Storch A, Csoti I, Eggert K, Henriksen T, Plate A, Lorrain M, Oertel WH, Antonini A.
Division of Neurodegenerative Diseases, Department of Neurology, Dresden University of Technology, Dresden, Germany.

BACKGROUND:
A growing number of patients is treated with intrathecal application of autologous bone marrow cells (aBMCs), but clinical data are completely lacking in movement disorders. We provide first clinical data on efficacy and safety of this highly experimental treatment approach in parkinsonian syndromes.

METHODS:
Retrospective data collection from patients with parkinsonism who spontaneously sought cell treatment. The application procedure was neither recommended nor performed by the authors.

RESULTS:
We report 17 patients with parkinsonian syndromes (Parkinson’s disease [PD], n = 7; multiple system atrophy [MSA], n = 7; various, n = 3) who received intrathecal application of aBMCs. We did not observe any changes in motor function, activities of daily living, global clinical impression, or antiparkinsonian medication after a median observation period of 10 months. Two patients reported a worsening of parkinsonian symptoms, but the intervention was otherwise safe and well-tolerated.

CONCLUSIONS:
Intrathecal application of aBMCs in uncontrolled conditions produces no clinical benefit in parkinsonian syndromes.

Copyright 2012 Movement Disorder Society.

PubMed ID#: 22362657

Dr. Wenning on MSA (informal video, June 2013, Australia)

Gregor Wenning, MD, is an MSA specialist who lives in Austria.  He met around a table with MSA families in Sydney, Australia in June 2013.  The 80-minute informal discussion and presentation were recorded and are posted on Vimeo:

vimeo.com/relivetheday/review/68744603/81811a9e7d

Note that this is not a formal presentation or a professional video-recording.

The slides haven’t been posted yet but I imagine they will be.  Pam Bower posted the Vimeo link recently to the ShyDrager Yahoo!Group.

At our Sunday caregiver support group meeting, our MSA group leader, Candy Welch, told me she watched the video and thought it was worth watching.  Plus she said that Dr. Wenning is obviously a very kind and caring physician.

Robin

“Many Faces, Same Disease” – MSA Patient Primer (Univ of Florida)

This MSA primer is posted to a webpage at the University of Florida (Gainesville) Center for Movement Disorders and Neurorestoration.  I’m not sure when it was published.  This is a well-written resource.

The author, who seems to be neurologist Nikolaus McFarland, MD, notes:  “As a multisystem disorder Multiple System Atrophy has many ‘faces’ and results in varied symptoms that require an interdisciplinary approach. Patient care begins with proper diagnosis and then focused, and even specialized, treatment of the various symptoms of MSA.”

Copied below are excerpts from the primer.  See the University of Florida webpage for the full primer:

mdc.mbi.ufl.edu/education/multiple-system-atrophy-primer-many-faces-same-disease

Vera James posted this today to the ShyDrager Yahoo!Group.

Robin

—————————————————————

mdc.mbi.ufl.edu/education/multiple-system-atrophy-primer-many-faces-same-disease

Excerpts from:

Multiple System Atrophy (MSA): Many Faces, Same Disease

A patient primer from the University of Florida Center for Movement Disorders & Neurorestoration

What is MSA?

MSA, or Multiple System Atrophy, is a form of parkinsonism with many features that overlap with those of classic Parkinson disease and make it confusing to diagnose clinically. In fact, early symptoms may appear just like Parkinson disease (PD) and standard treatments, such as carbidopa/levodopa (Sinemet), can initially be helpful only to wane later in effectiveness as the disease progresses. As the disorder’s name alludes, MSA is a multisystem neurodegenerative disease that is characterized by a combination of symptoms including parkinsonism, cerebellar and pyramidal tract signs, and autonomic dysfunction. Parkinsonism is a descriptive term and includes tremor (usually resting), stiffness or rigidity, bradykinesia (slowed movements), and postural and gait instability. Cerebellar signs in contrast refer to problems with coordination and may include tremor with activity, past pointing (when reaching for objects), slurred speech, and an unstable “drunk-like” gait. Autonomic problems are non-motor features that involve failure of the automatic nervous system which controls things like heart rate, blood pressure, bowel, bladder and sexual functions. These are things you don’t often think about and are “automatically” controlled by the brain. In MSA people develop problems with this system and may present with lightheadedness/dizziness (related to changes in position, such as standing, and referred to as orthostatic hypotension), fainting spells, urinary retention or urgency (even incontinence), erectile dysfunction in men, constipation, and abnormal heat/cold intolerance and problems with sweat production. Additional features that are closely linked to MSA (and other parkinsonian syndromes) include REM sleep behavior disorder — characterized by yelling or thrashing about during dream sleep — periodic limb movements or restless legs, and respiratory stridor (harsh, strangled breathing). Importantly, it is possible for these other symptoms to precede motor symptoms by months to years.

What are the “faces” of MSA?

Given the multitude of features in MSA, clinical presentation is varied resulting in many “faces” of the disease. Since its first description in the 1960s the disease has been given different names — Shy-Drager syndrome, striatonigral degeneration (SND), and olivopontocerebellar atrophy (OPCA) — depending on the predominant presenting symptoms. However, it was later discovered that each of these syndromes shared a similar pathology characterized by the presence of abnormal protein deposits in the brain, called glial cytoplasmic inclusions or GCI’s. These inclusions are similar to “Lewy bodies” seen in PD, but unlike PD they are not found in neurons but rather in supporting glial cells. In the brain these glial cells are important for making myelin, a substance that “insulates” nerve fibers. The finding of this common pathological feature regardless of the clinical presentation (or “face” of the disease) led to the terminology used today, multiple system atrophy or MSA. Two clinical variants are generally still distinguished by clinicians based on the predominant presenting symptoms: parkinsonism (MSA-P, also known as Shy Drager or SND) or cerebellar ataxia (MSA-C, or OPCA). Both variants include autonomic dysfunction and as the disease progresses the features of these variants increasingly overlap.

Who does MSA affect?

MSA affects men and women equally and median age of onset is about 58 years-old. Although not as prevalent as PD, MSA affects about 4 per 100,000 individuals. … Disease progression unfortunately is usually more rapid than in PD and reflects a more widespread neurodegeneration in the brain. The combination of autonomic and motor symptoms, particularly if early in onset, can be fraught with more complications and shorter survival. Therefore early disease identification is critical. Referral to a movement disorders neurologist is recommended for proper diagnosis and symptom management.

How is MSA treated?

Treatment of MSA remains largely supportive. About 30-60% of patients respond to typical Parkinson’s medications such as carbidopa/levodopa (Sinemet), and dose trial of up to 1 gram/day of levodopa for a few months is recommended. Benefit seen early in disease often fades though, or becomes fraught with complications. Two major complications include exacerbation of orthostatic symptoms (lightheadedness, dizziness, or fainting on standing) and dyskinesias, or abnormal involuntary movements that often involve the jaw or face. These symptoms can result in limiting the dose of medication tolerated, and thus also the effectiveness of drug treatment. More advanced motor symptoms, such as muscle spasm or fixed postures (dystonia), can be treated with “muscle relaxants” and sometimes by injection of botulinum toxin (i.e., Botox). Deep brain stimulation (DBS), however, is generally not recommended as poor outcomes have been reported. Physical and occupational therapies for gait and balance, range of motion and mobility, and help with activities of daily living are critical and require staff familiar with Parkinsonian patient needs. For those with progressive speech and swallowing issues therapy with a specialist is also highly recommended and includes regular swallow testing. Prevention of falls and aspiration (pneumonia) are major goals as these frequently lead to worsening disability and even death.

Although there is often focus on motor symptoms, the non-motor symptoms of MSA can also be just as disabling. Orthostatic symptoms, dizziness and even fainting, can become very limiting and lead to the wheelchair or recliner-bound patient. Treatment initially begins with “conservative” therapies including increased fluid intake, salt in diet (considering of course any concomitant heart disease), and wearing pressure stockings or binder. If these are not enough, drug treatment may be necessary. Options include “blood volume increasers” (fludrocortisone) or “pressor agents” (e.g., midodrine). Both increase BP thereby reducing episodes of low BP, but the later can also cause excessive high BP usually when lying down. Careful monitoring of BP is needed, avoiding ups and downs, and a happy medium found for each individual. Urinary and bowel symptoms likewise can be treated with select agents depending on the issue. Sleep disturbance can also be successfully treated depending on cause.