Are you Compliant with your Therapy?

[Lulu54]

Jennifer Patterson, MSCN, Norton Neuroscience Institute, gave a talk at the MS Expo in Louisville,  on Compliance with MS Treatments.  She cited studies that show compliance with MS treatment is about 50%, but said that the number can be increased by being aware of what causes this lower compliance rate.  That compliance rate identified three categories: complete compliance, incomplete compliance and absence of treatment.

She said the highest dropout rate for sticking to a disease modifying  therapy occurs in the first 2 years; the reasons for this dropout rate can include treatment fatigue, loss of motivation and complacency. It also could be due to the cost of treatment.

Her talk included points on ways to increase this compliance rate.  She said it is often difficult to come up with the real reasons why patients become non-compliant because there are so many ways to get waylaid from treatment. To stay on therapy you must have the financial resources, and the support network to increase your odds of success.  The support network includes your family, friends, and your health care team.

There is a need to have realistic expectations of what the disease modifying therapies (DMT) really do to help motivate us to remain compliant with our therapy.  It is proven through trials and studies that the DMTs will improve the quality of life, decrease the frequency/severity of relapses, have fewer hospitalizations or visits to the emergency room and postpone disability.  

Ms. Patterson expressed that there are actions, some of them basic and others that take some work,  that can help with getting into the swing of being compliant with therapy.

How to Conquer Adherence Problems:
• Increase awareness and knowledge of MS
• Increase awareness of the benefits of picking a DMT and sticking with the treatment
• Improve injection techniques through patient education
• Instill confidence and hopefulness in the patient
• Establish a sense of connection with the health care team (doctors, nurses, etc)

Empowerment is also a factor in compliance and it comes from the health care team who must:
• Encourage the patient to learn about MS and the treatments
• Help to develop coping skills for living with MS

Evaluation is significant in looking at assisting with keeping the person compliant.   She listed several things that should be looked at by the health care team, including:

• Evaluate the patient’s support system
• Evaluate the coping skills of the patient
• Evaluate the beliefs/concerns in the preference for treatment
• Seek out ways to education the patient about the disease and treatment options
• Evaluate the level of acceptance or denial about having MS

Communication
• Patients must be honest with their Health Care Provider (HCP)
• Patients must feel comfortable to ask questions of their HCP and be active participant in the discussions

She strongly urged everyone to see a neurologist who specializes in Multiple Sclerosis and not a general neurologist.  Her position is not only will the MS specialist stay current on the latest advances and treatments, but the doctor will also have an entire office staff familiar with and dedicated to the care of MS patients.    In the specialist’s office there will likely be someone, such as the MS Nurse, who works  as an educator, supplementing the information that the doctor can provide in the limited appointment time.  She said that there also must be a “cheerleader” in the health care team who will root you on to being successful.

In closing, she suggests the best treatment choice to hope to be compliant is the one you can and will do.  It’s important that the patient make the final decision as to which therapy will be tried to give ownership.


Please share if you will, what keeps you compliant with your therapy?
Lulu

[sllowe]

Lu - Excellent discussion and write up. This should be a health page. Let me know if you want me to do something with it. Know you are having computer woes.

Add me to the complacent. Though I've been very good lately, in the past, I admit I've slacked off a bit, missed dosing, etc. Not sure why, just being lazy, or something.

What keeps me on track now are those reminders of what happened in 07. I never want to be that bad off again, so I think of that as I slip in that needle.

I'm very interested too in what she said about seeing an MS specialist vs. a general neuro since starting to identify those members here dx'd by regulars, myself included.

Thanks for this, and I give much props to those who are 100% compliant!
-shell

[jujuminx]

Thanks for posting this.

I am 100% compliant with my copaxone.

Julie

[Guitar_grrrl]

No matter what DMD I was ever using, I was compliant.  I'm back on Tysabri, now, and that's easy to be compliant because you have to schedule your infusion!

[Lulu54]

Sumana, I identify a lot with just soldiering through and not having the time/need  to worry about why I was dizzy, off balance, weird "pings" in my body - I probably have had MS for at least 20 years using hindsight.

Ojibajo - that is an interesting observation.  I hope you will stop and consider how the reactions of others is impacting your health and can find a way to take control.  Obviously no one else around you is going to step up and help.

[Ojibajo]

I was in the beginning but I am not now. I am not very compliant with either my drug or Physical therapy. It's not that I don't care it's just that my life is so busy and stressful and I have ZERO support at home or at work. I received a partial FMLA leave which resulted in backlash from HR and an increased workload from my immediate supervisor. My husband doesn't help and my son's behavior is so out of control right now (I has Aspergers and PTSD) that I don't have time to focus on me. I also can't give my self injections while I am all stressed out  and my kid is acting crazy. The fact that i even get up in the morning is next to miraculous.

[Sumanadevii]

Okay, Lulu, as promised here I am to explain myself and if I am compliant with my "therapy".  

First the explaining, I did read paragraph one.  Second, I just thought I had the basic idea and ya, I get brain fog too...Not much different than others here.

And yes, I am very compliant with my drug therapy...In fact, so compliant that I don't question when I am having a reaction...as in taking the steroids.  I just figured steroids gave everyone heartburn.  I had it from the beginning of treatment.  My doctor didn't find out until I ended up in ER thinking I was having a heart attack.  Tell me to take shots daily, weekly or monthly, I won't miss one dose.  Give me a prescription, I make sure each is taken as directed.  

My neuro wants me to be honest with her.  She agrees that I am very strong ...Maybe too strong for my own good.  She thinks it is why it took 27 years for a dx.  I just thought I should handle it.  So today I am working on that part of my treatment.

I honestly do not think I am the only woman to respond this way.  Women by nature are strong.   We make ourselves too busy taking care of others and add ourselves at the end of the list.  However, there never is an end!!! lol...so we continue that behavior to our graves.

Again, Lulu, this is still a great discussion even if I had it wrong on round one.

[HVAC]

I got fed up with fighting with Shared Solutions and Accredo Pharmacy over my prescription assistance every refill. I was 100% compliant but found spending days on the phone with each over my assistance was a drag.  I had a Visa card form SS but they could not work it out.Plus the shared solutions assistance program kept me waiting months after I applied to be accepted. Then I had to do it all over  three months later with exactly the same information. Often it came down to days before my script had to be refilled and I applied three or four months earlier. I found the stress too much. It was easier on my health to go off a DMD all together. I have not regreted my choice. They both changed there tune when They saw how much money they were losing.I was not a person just money from my insurance company.

Because I have had MS for 46 years and have PPMS my MS Specialist had no problem with my decision. My other one did not want me on a DMD at all it felt it was a waste of time.

Alex

[doublevision1]

In truth, it is fear that has kept me 100% compliant for > 3 years.  Whatever works!

Thanks for the great notes, Lu.

[Lulu54]

Sorry it was so long, Suma.  This was an hour long talk condensed to this version.  Maybe next time you can read beyond the title and check out the first paragraph or two.  LOL

Maybe one of these threads we can discuss the many different types of therapies there are in the medical world.

Go get some rest.

[Sumanadevii]

Heck I just read the title..The post was soooo long..lol...I took a shot in the dark at it being about PT.  Okay, another night I will write on the correct subject...too tired tonight to type more.

[MsmsinFl]

I've been on Rebif for 2 years and never missed an injection.

I've had no relapses or flu-y side effects, so that's helped, I'm sure.  I still hate "shot night" mostly for psychological reasons.  My husband has been right there with me for every shot -- he hasn't missed one either!  So I'm very blessed.

The cost is ridiculous -- over $3,000 per month.  Insurance and Rebif's assistance plan make it possible for me -- without those 2, I would not be able to stay on the DMD.

[Lulu54]

Julie, you looked awake so you sure had me fooled.  Recently I have heard experts talk about the original DMD, interferon beta-1b (betaseron) I believe, there was a shortage of this drug. They held a lottery and only a few lucky people got to go on this treatment.

We are indeed fortunate to have so many choices that perhaps it makes us a bit more laid back about sticking with our therapy.  

I personally have struggled with the issue of compliance the past few months (hitting about 85%) and I was happy that this talk was one of the keynotes- it gave me several things to think about and work on.  

Suma- You're right about money being the big issue.  I would have exhausted our bank account in the three years I've been on copaxone if we had to pay for it ourselves.

[Sarahsmom46]

You captured this very well, extremely well.  I think I was still asleep when she was talking, but bravo for taking the notes and putting it out there for the group.   This was a great opportunity to remember how important compliance is in order to keep our disease under control.  One thing she told me when I met her later is that 10 years ago MSers didn't have necessarily have access to the few experimental treatment options available and people were begging to get a chance to get on one.  Now we have options and we make choices about sticking with them excuses or not.  

Hopefully the new oral drugs will increase the compliance levels.   Thanks again Lu for writing this up for us.  

Julie

[Sumanadevii]

My PT and I made a deal...a verbal contract.  She is to listen to me.  If I say this is not working or is too painful, she is to back off.  On the other hand, if she offers a suggestion to replace it, I am to give it a try.  We seem to do well.  What it boils down to is respect for each other.  I respect her knowledge.  She respects that I know my limits.

I do think money is an issue for so many.  I am lucky that my secondary insurance pays for so many visits...I have never used too many in a year.  I usually see her at least once or twice a week.

This is an excellent topic, Lulu.  I look forward to reading how others are handling it.