New test measures doctors’ ability to deliver patient-centered care

EDITOR’S NOTE: The New Jersey Center for Tourette Syndrome & Associated Disorders (NJCTS) has been delivering its Patient-Centered Medical Education Program to doctors, resident physicians and other health-care professionals at hospitals and education centers in New Jersey and Connecticut since 2010.

PHOTO COURTESY OF THE UNIVERSITY OF MISSOURI SCHOOL OF MEDICINE. University of Missouri School of Medicine second-year student Mitch Tarka interviews standardized patient Sarah Squire Weber while practicing patient centered care skills at the Russell D. and Mary B. Shelden Clinical Simulation Center.

When health-care providers take patients’ perspectives into consideration, patients are more likely to be actively engaged in their treatment and more satisfied with their care. This is called patient-centered care, and it has been the central focus of the curriculum at the University of Missouri (MU) School of Medicine since 2005. Recently, MU researchers have developed a credible tool to assess whether medical students have learned and are applying specific behaviors that characterize patient-centered care.

The researchers first worked with real patients to identify a list of specific behaviors that demonstrated physicians were providing patient-centered care. By defining these detailed, specific patient-centered behaviors, the researchers have been able to tailor the educational experience at the MU School of Medicine to help students gain these skills.

MU medical students now are assessed on their ability to deliver the care in ways the patients expect; students must perform at a satisfactory level on the patient-centered care exam to graduate from the MU School of Medicine.

“The test forces the future physician to go beyond just determining a diagnosis and to focus on behaviors that play an essential role to the effectiveness of the care he or she provides,” said Kimberly Hoffman, Ph.D, associate dean for curriculum and assessment, and research associate professor of family and community medicine at MU.

Hoffman is the author of a study describing how the assessment tool for patient-centered care was developed at the MU School of Medicine. In the article, Hoffman also outlines a process for having patients validate the assessment.

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52 Weeks of TS: Week 34

EDITOR’S NOTE: Every Tuesday, noted Tourette Syndrome advocate Troye Evers shares his “52 Weeks of TS” blog journal with the TSParentsOnline community. In cased you missed any of the first 33 weeks, you can read them here. For more information about Troye, please click on his name or visit his website.

Well, my two-month stay on the vineyard is coming to an end, and I’m not sure whether to be excited or sad. I came out to Martha’s Vineyard to work, write and learn a bit more about my TS. I have indeed learned more about my TS, but have also come to the conclusion that with TS it is always a learning experience.

For me, it is always changing, waxing and waning. I have my usual tics, but one day I might start a new one. The new ones always bring on fear, because I never know if this new tic is one that’s going to stick around for a while, or will it be gone in the morning? They say that the body changes every seven years, but I feel as if mine is changing every seven days? I never know what to expect next.

The same applies to my OCD’s. I never know what new OCD I’m going to come up with. A few weeks ago, I spoke of one of my new OCD’s dealing with change (pennies, nickels, dimes, etc) on the floor. I’m not sure where this one comes from. At first, it started with the old wives tale, “find a penny, pick it up. All the day you’ll have good luck”, but only if its heads up. If it’s not heads up it could be bad luck. Could this be the cause of this new OCD, or is it the fact that we’re are talking about change on the ground, the same dirty ground that holds so many germs?

I was really hoping that this last week on the Vineyard would be relaxing, but it was far from that. I can put on a great, relaxed façade, but the anxiety is always there. After spending two months on the Vineyard, all I could think about is packing, and making sure we didn’t forget anything. I had the majority of our things packed a week before hand, but still could not stop checking every room to make sure I wasn’t going to leave anything behind.

I also found it very frustrating that my husband didn’t care about the packing situation. He is one of those people that just waits until the last minute to pack, but my mind won’t let me do that, so I was left to pack myself. I guess I don’t really mind packing myself, because in my mind, he won’t do it right. No one can pack the way I want it done.

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Understanding depression in children

As a child or teen, did it bother you when people would comment “these are the best years of your life”?

For many children, this blanket statement is a stark contradiction from the reality they know. A bulk of people experience a childhood or adolescence that is not always filled with rosy or positive experiences.

Once considered impossible, today’s experts are aware that even young children sometimes suffer from depression. As a parent, it’s hard to acknowledge that your child might be suffering from this ailment. If you feel that a child is suffering from depression it’s important to understand the facts, signs, symptoms, and pointers to help a child cope.

Childhood Depression

The American Academy of Child and Adolescent Psychiatry now estimates that typically one in 20 children or teens are depressed. This is shocking when you consider that within every classroom is a high probability that at least one child in attendance is suffering from depression.

Depression is a real medical condition and should be treated accordingly. Many parents feel there is a stigma attached to a child if it is suspected that she suffers from depression. Unfortunately, this is an illness that they can’t just “snap out of” and requires attention.

“Depression is no more a result of ‘bad parenting’ than is diabetes or cancer,” says Dr. David Fassler, co-author of “Help Me, I’m Sad”: Recognizing, Treating and Preventing Childhood and Adolescent Depression. “All are real illnesses that require careful evaluation. The good news is that we can help most children and adolescents.”

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Tics are better post-Christmas

Kane’s tics have been a lot better since we have gotten over the excitement of Christmas! He has been busy playing with all of his new things! He is into MineCraft big time right now and loves spending his time reading about it and learning more on how to build and construct things inside his world.

He has been using these buildings that he builds to help ‘control’ and ‘focus’ on controlling his rage and his tics. He uses the focus point of “GlowStone Castle” as his happy place to go when he is feeling upset. This has helped with him so much.

Sometimes he goes in my bed, gets under the covers and calms himself down while creating the world inside of his mind. Some may think this is silly, but for Kane it works great! Especially for those days when the anxiety attacks are happening a lot!

CBIT Explained, Part 3: Who should take CBIT?

In this blog series, Steve Pally, administrator of the TSFC Forum (www.tourettesyndrome.ca), explains the basics of CBIT, or Comprehensive Behavioral Intervention for Tics. See part one here and part two here.

CBIT is ideal for individuals who feel they have one or more bothersome tics (not a tic that bothers someone else, but rather a tic that causes the individual discomfort, distress or difficulty).

CBIT also requires a self-aware individual. Self-awareness in children matures at about the age of 10 (+/-2 years), at which time they become aware when they tic or are about to tic (the premonitory urge).

Unfortunately, trained and certified CBIT therapists are limited in number and can be difficult to locate. By contacting a local TSFC affiliate (or, if you live in a place such as New Jersey, the NJ Center for Tourette Syndrome), you may learn if a CBIT therapist is practicing in your area. If there isn’t, let your own doctor or therapist know that CBIT training is available. When more people alert local medical professionals that CBIT therapy is needed, the number of competently trained CBIT therapists will increase.

References:

1) Cook CR, Blacher J. Evidence-based psychosocial treatments for tic disorders. Clin Psychol: Science and Practice. 2007;14(3):252–67

2) http://www.cdc.gov/ncbddd/tourette/treatments.html#CBIT

3) NJCTS Webinar April 23, 2014 Dr. Lawrence W. Brown MD, Pediatric Neuropsychiatry Program, The Children’s Hospital of Philadelphia

4) Behavior Therapy for Children With Tourette Disorder

5) Randomized Trial of Behavior Therapy for Adults With Tourette Syndrome

6) Canadian Guidelines for the Evidence Based Treatment of Tourette Syndrome Page 66

Major input from:

CBIT Training, Dr. Douglas Woods PhD, Professor and Department Head, Department of Psychology, Texas A&M University

IMG_0038-avatar--wAbout the blogger: Steve Pally was diagnosed with TS as an adult in his mid-forties. He has volunteered with TSFC for nearly three decades and currently co-administers the TSFC information and support Forum at www.TouretteSyndrome.ca. His interest in CBIT was sparked when he realized many of the strategies taught in a ten-week period in CBIT today were familiar to him, but took him decades on his own to discover them, as have many other adults with TS. That’s why he is eager to acquaint as many people as he can with CBIT so they can take advantage of recent developments for tic management.

52 Weeks of TS: Week 33

EDITOR’S NOTE: Every Tuesday, noted Tourette Syndrome advocate Troye Evers shares his “52 Weeks of TS” blog journal with the TSParentsOnline community. In cased you missed any of the first 32 weeks, you can read them here. For more information about Troye, please click on his name or visit his website.

This year is sailing by. I have one more week until I’m back home in New York City. I think I’m as excited to get back to NYC and my normal life, as I was to get out of the city and to the Vineyard. I know I was excited to come out to Martha’s Vineyard and work on writing, and relax, but it has not turned out quite how I hoped it would.

Besides the confliction of many personalities, I’ve also had to deal with many of my own problems and OCD’s. As I said before, I’m living with eight people at the least, at one point there were twelve people. It’s hard to clean up after that many people the way I want to and keep it clean. I will clean the kitchen, I swear, I could finish cleaning and walk into the bedroom for a minute, and once I get back the kitchen is trashed again. I’m not saying it’s my responsibility, but it will be nice to get back to the comfort of my own home, where I know where everything is and I’m only responsible for my husband.

Even though I am excited to get back home, I have a feeling it’s going to be more craziness with my OCD’s. I know after two months away, that there is going to be a lot of cleaning and reorganizing of my apartment. I have had a few people staying at my apartment caring for my cats and one of my dogs, and I know things are not going to be to my standards upon arrival.

It’s nothing new, I go through this every year, I get home and spend about a day unpacking and getting my home back into “Troye order.” The only issue with getting back is that the last house sitter will be staying with us for three weeks after we get back. At least it’s my home, and I will be able to get into my own setting, but I feel as if I’m still going back to a setting where I have roommates.

I did stop drinking coffee this week. Cutting out the caffeine got rid of the jittery anxiety, but the normal anxiety is still there. I take my .5mg of Klonopin as soon as I wake up, but I think it really just takes the edge off a little bit. I guess I just have to face it, I’m stuck with this anxiety. It’s part of me, like my arm or foot.

The OCD triggers the anxiety, which then triggers more OCD, and more anxiety. Is like a tennis game in my head, and then both the anxiety and the OCD triggers more tics. Wow, did I just figure out why I have the head-flinging tic, because anxiety and OCD are playing tennis in my head? I guess anybody’s head would fling around if there was a ball flying around inside their head.

This week has been an interesting week for my TS.

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A place to call my own

As I sit here typing, my daughter sits quietly behind me. She’s painting in her art center. By “art center” I mean “re-purposed 1980’s ply board shelf unit” covered in discount white paint. Her legs are crossed. Her eyes are focused. And she hasn’t moved in one hour. I’d poke her to be sure she wasn’t a statue, but in case she fidgets, I don’t want cobalt blue on my favorite thrift store cardigan.

sophia 2

Me? I’m the opposite of disciplined and steady. I bolt up up to take a picture. I plop down to write a blog post. I get up to get a cup of coffee. I sit down to check an email. Oh, what was that meme on Facebook? I’ll look at that really quick. And ha! That vimeo is hilarious. That cat sure knows how meow Jingle Bells like a pro. Oh, and for the record, my elf name is Perky McJiggles. Score!

By the time I’m done, I’ve got nothing accomplished but a spinning brain. My daughter, on the other hand, has a beautifully painted rainbow-colored dog which will soon house shiny new crayons. With my little Hermione Granger, this translates to magic. Precise, practical, whimsical but containedmagic. With her mother, there is magic also, but things often explode.

When the kids were younger, I’d pass of my messed up experiments as “creativity!” and “mad cap hilarity!” I’d hail the virtues of being flexible and turning lemons into lemonade! But the truth is, I wasn’t (and continue to not always be) prepared for events and every day occurrences in my domicile.

Last year, I almost missed my daughter’s choir performance because I assumed the start time was the same as rehearsals, despite mounds of paperwork saying the contrary. Where was the paperwork? In the piles of everything else on my desk. I had meant to file it, but somehow, that resolution never took off.

That was 1992.

This has all started to change since my job ended in October. I’m getting more organized. I have to be. Not only is my family worth it, but so am I. Where do I want to work next? What do I really want to write? WHO THE HECK AM I? The verdict is still out, but I can promise one thing: As long as I’m reacting to life, rather than producing it, I’m only going to get half measured results. I need to be intentional.

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CBIT Explained, Part 2: How does CBIT work?

In this blog series, Steve Pally, administrator of the TSFC Forum (www.tourettesyndrome.ca), explains the basics of CBIT, or Comprehensive Behavioral Intervention for Tics.

Studies published in peer reviewed journals have demonstrated the effectiveness of CBIT (part 1).

It’s thought to work by strengthening the neural pathways between the basal ganglia and the prefrontal cortex of the brain. The basal ganglia is the region of the brain where Tourette Syndrome is thought to originate by the spontaneous release of unwanted muscle actions, while the prefrontal cortex is the region of the brain where voluntary control over our actions occurs.

CBIT breaks the premonitory urge → tic → relief feedback cycle by implementing a Competing Response (CR), an action that’s less conspicuous than the tic itself and can be performed without any external aids or devices.

(Please note that even though behavioral therapies like those involved in CBIT can help reduce the severity of tics, this does not mean that tics are just psychological or that anyone with tics should be able to control them—tics due to TS are very much neurologically based and involuntary. CBIT is not  “Stop It” therapy, but rather “Do Something Else” therapy.)

In time, usually after a few of months of applying the CR combined with the other comprehensive components of CBIT, most children develop the ability to manage their tics to their satisfaction.

Having learned the techniques taught in CBIT, the child is then able, usually on their own, to develop their own CRs for other bothersome tics, and continue using the relaxation strategies and the knowledge gained from understanding their tic triggers to more effectively manage their symptoms throughout their lives.

IMG_0038-avatar--wAbout the blogger: Steve Pally was diagnosed with TS as an adult in his mid-forties. He has volunteered with TSFC for nearly three decades and currently co-administers the TSFC information and support Forum at www.TouretteSyndrome.ca. His interest in CBIT was sparked when he realized many of the strategies taught in a ten-week period in CBIT today were familiar to him, but took him decades on his own to discover them, as have many other adults with TS. That’s why he is eager to acquaint as many people as he can with CBIT so they can take advantage of recent developments for tic management.

A big day for Kane, plus a vote that could help an entire school!

Kane graduated from speech yesterday!! I am so proud of him for his accomplishments! He was able to bring his friend Ayden with him to celebrate!

On another note, if everyone could take a few seconds out of your day to please click on the link I have below and go vote for Murray Preschool, that would be amazing! Voting could result in the preschool winning books!! There is absolutely nothing to sign up for, just click on Stacey Feehan’s picture and click vote!! Thank you!!

http://review.wizehive.com/voting/view/janbrett2014/19314/2516655