Hi everyone! Thank you for participating in this focus group, hope you had a lovely weekend.
MSAA has prepared a number of different resources to help with the decision-making process. We want to get your feedback on the usefulness and impact they would have when considering SDM. For the next 3 days we will provide you with a different resource, aimed at helping a specific scenario.
The first resource is called "Talking about Treatment with your MS Specialist" and can be downloaded here: mss-cdn.azureedge.net/-/med...
- How useful was the content?
- How easy-to-use/understand was it?
- What aspects were beneficial?
- What aspects were not helpful?
- Is there anything that you would do to improve it?
Take a look and discuss the resource below Thanks!
Written by
CalvinHU
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CalvinHU Good Resource. Easy to understand, content is basic information, questions/topics are a good starting point, but I find that what contained/suggested discussions to initiate/start with your medical team at your appointment are a minimum of what you need to talk about. Of course, it should always be personalized with an individual's specific needs. Communication is key, and essential to all medical care.
One problem with it relates to KNOWING whether you have relapsing/remitting form of MS, otherwise a good info sheet in general. As carolek572 points out it's really just a starting stimulus for communication. The bit about "taking control of your MS" could be interpreted as a bit dramatic . . .
I found information as helpful. It provides a guide that can be used to prepare for your visit with your health care professional. It did not provide much new information for me and I feel like I have a good relationship with my neurologist and we can talk openly. I currently am not on any medication, I do take Vitamin B and D3 to help. I have not had an exacerbation since I began Betaseron years ago.
you are so fortunate,I was on betaseron for 5 years and it stopped working,I hated that, I had no ill effects taking it,I,like many have been Ocrevus for a year, so far,good
It seems more useful to the newly diagnosed, but how to get it to those most in need seems problematic. I have never understood why information about MSAA and NMSS is not available when neurologists diagnose MS, leaving it to each individual to gather information. It is almost as if many neurologists guard access to information and protect their status as the informant.
2. I printed it off and it was easy to use and understand.
3. Beneficial parts were noted for Dr., bring medicine etc. and where to turn for help.
4. Not helpful areas I don’t see any but I don’t like the words “not happy with your treatment”. Maybe use “if you have concern with your treatment”
5. Improvement I would suggest a spot to remind patients to get a written after visit care plan. I find it difficult to remember what they told me, so I refer to my after visit note.
The information was somewhat helpful. I believe a full description of MS be included to start things out without having to visit the MS website.
The definition of DMT'S was good and the explanation why they are needed is beneficial.
The questioner should be marked yes for all topics not what the paient feels they need to know. Those are all facts that they need to know.
The whole stem cell portion needs to be deleted. This gives a new paient false hope of a cure. Research has not proven this to be a cure, insurance will not cover it. I see it being beneficial in healing lessions but don't understand how the disease is cured. The stem cells are drawn with current symptoms in them. You need to cure the disease before the stem cells are drawn or your risking having the disease inserted back into your system. It's not a perfect cure for cancer and would be the same here.
The 2nd opinion is always a good follow through and the list of what to bring is accurate.
It is useful,easy to understand and a good list of questions one might not think of in the 2 seconds of allotted time with one's doctor.
I still would take the time to read up on whatever it is they advise me to do, especially when it comes to any medications and then decide on if you are going to go down that road.
Being from the U.K. and having PPMS, I didn’t find the article particularly helpful. Firstly how do you know if you have early PPMS? Also the section on HSCT should not be included. You are only injecting yourself with ms again if you have your own stem cells harvested, and to have stem cells from else where, who knows what you might end up with. There has not been enough research to warrant advertising it as a cure. I think the article is more geared towards RRMS.
Hi Calvin, Excellent resource and we have to start somewhere. I think and have found as of late, the best advocacy is always making sure I'm well informed about "cutting edge health" updates.
I do have a wonderful relationship with my doctors; years of care - communication is key. Everyone has their own unique individualized circumstances, preferences most suitable for their best quality of life and care. Hopefully we can only entrust the medical community, scientists and researchers to keep us well, informed and healthy at a minimum risk.
That's a pretty good check list. At each of my appointments with my MS Specialist, even if I don't mention something, my Specialist goes through a very similar check list with me.
I think this would be a helpful tool to use before going to the doctor. I myself always make a list of questions before my appointment so I won’t forget anything. A space to jot down answers would be good.
Based on the PDF "Talking about Treatment with your MS Specialist"
- How useful was the content?
Given that I am in the US not the UK, very useful. Drugs that are approved over here are not yet available in the UK
- How easy-to-use/understand was it?
East. Written in none technical language.
- What aspects were beneficial?
The list of how to prepare for the discussion on DMT's
- What aspects were not helpful?
UK inforamtion not US
- Is there anything that you would do to improve it?
Considere adding a question to the suggested list along thelines of how could this DMT interact with my current medications and health condidtions? For example Ocrevus has as a side effect possible increase in
malignancies, including breast cancer. If you have had brest cancer or have the genetic mutation maybe this is not the correct drug for you.
Do the UK guidelines specify if or how often survellance MRI's should be done? This informationwould be benefical.
It was very concise document that is useful information. Easy to understand dmt abbreviation as well. I liked the checklist section with levels of current drug therapy issues. I liked the list at the end of what to bring to an appointment.
The section on calling your nurse or Ms specialist a bit confusing. Helpline not relevant to everyone unless using services from specific drug company or insurance. Maybe if means MSAA or national MS person or personal support person? I'm guessing it means the MS specialist a person goes to as a specific point of contact to discuss all available treatment options for the specific individual. There are so many helplines and they aren't always there to be "helpful". My neuro office has an online team and is an MS specialist but the MyChart this Dr has is not for discussing new therapies or even " oops I forgot to ask this question..."with this specialist. I make an appointment if I forgot something or new symptom and bring my list of questions. If this document is meant to be a generic for a specialty center to fill in for existing or new patients it is great section. If it's meant for a national audience, leave that section out.
I agree with the statements that all treatment options should be revisited yearly with a specialist. I liked that several therapies described like stem cell and ocrevus but there are also older/different dmts that some use (ie IV/IG, tysabri, solumedrol). How do you keep it a concise document while providing info on all therapies available? I would leave them out and maybe stress more where to find information regarding therapies. Or add more dmt definitions and shorten section on helpline (unless there is one).
I like the fact that it's short and gets to the point of patients should discuss treatment options yearly. I would focus on who, how, and what to ask over a few available item definitions ( sounds like a drug company to me) if thats the goal of the document.
(Make a printable format of symptom chart and list of what to bring to Dr appointment and I am putting in front section of my binder I bring to dr as additional reminder)
The content was good, but more for new patients. Wish there was more available for PPMS, Ocrevus didn't do anything for me & my neurologist was honest with me & said if it had been improved one year before it was, it would have had some benefit for me, but not now. Diagnosed in 2008 & in a wheelchair since 1/2016.
it has some very good reminders to talk to your dr. about,I make a list then forget to ask him,it will be good to pull this off and keep my questions front and center.This is very informative for newbies
I agree with the others. It is good starting information for newbies. But remove the info about stem cell therapy. At best it is experimental and insurance will not cover it. It gives false hope for a cure that it is not.
Something to add is to tell patients to keep a hand written journal to keep track of symptoms and feelings from day to day. Keep sticky notes with questions to ask at the next appointment at the front of the journal and take it with them to every appointment. Changes in cognitive function can be detected in changes in hand writing and ability to think clearly. That was the best piece of advice I got from my 3rd neurologist.
I think this hand out is very helpful! I wish they would have had this when I was first diagnosed. They should have these at all doctor offices not just a neurologist because the first doctors you go to are primary , ophthalmologist etc before you get referred to see a neurologist. They should also have listed on the handout the MSSA and National MS society information.
Very helpful for the patient and doctors because they is a lot to cover with a MS diagnosis. I think it is good for newly diagnosed and us who have had MS for years because of changing DMTs and symptoms.
I wish I could get a copy of hand out too for myself and our MS support group.
Including information about stem cells may make the reader think that it’s an option easily available for them to consider, and that they should since it’s the only treatment mentioned. I’m not seeing a MS specialist, but this message makes it sound like my insurance would cover an annual consult for one.
I’ve always found it interesting that these check lists suggest bringing a list of questions but don’t mention a list of things you’ve been experiencing. Maybe people consider it the same?
Most of my appointments are spent going over what new or worsening symptoms I have and how to treat them.
- How useful was the content? Moderately useful since there was not an overall current DMT list or a list of additional, helpful on-line sites.
- How easy-to-use/understand was it? Very easy-to-use/understand, but, too specific on a certain single DMT I thought. Might want to list them all and the ones on the horizon.
- What aspects were beneficial? The internet resource available. The specialist visit question checklist.
- What aspects were not helpful? No overall current approved DMT list. No list of additional internet resources that are available.
- Is there anything that you would do to improve it? Add an overall current DMT list. Provide additional internet resources. With respect to the specialist visit question checklist: Add "What resources would you recommend, either on-line or local, for me to check out?"
I thought it was a good place to start, but for most of us, we've already done allot of research and already are ahead of it's suggestions. I've just transitioned into SPMS and it doesn't really address info for anything except for a person newly diagnosed with RRMS. Just my opinion.
Good resource especially for more recent MSers. For someone who has moved on to SPMS much of this is just review. And reviews can be good for everyone.
I think this is very helpful for the newly diagnosed. Sometimes you just don't what questions to ask and having them on this format is good. I have always kept a list of my meds and doses in my wallet. This seems like it would be good for a doctor to give to a newly diagnosed patient so they can use it for their visits. I had something like this from one of the drug companies years ago when I first started on my DMT. It also came with a little notebook to write things down during the time between doctor visits.
A listing of all of the MS organizations would be helpful for newly diagnosed. I had a hard time finding them at first. Being able to learn as much as you can about MS was very important to me.
I understood it well but I am studious and have a medical background.
- What aspects were beneficial?
The lists of questions. It is so easy to get sidetracked when you are in front of the doctor.
- What aspects were not helpful?
None
- Is there anything that you would do to improve it? More links to references such as a link to the types of MS. If the fact sheet has information in it that you do not understand, then directions to another source is needed. The fact sheet needs some "zip".
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Thanks!
