Is there a way to make information regarding MS disease-modifying therapies more accessible in the era of endless distractions and information overload?
Looks excellent but it needs to be painfully clear if 10 is good or bad. This may seem unnecessary to you , but cognitive difficulty can make the most obvious blurred. Putting all the pros and cons together on one card is an excellent idea, but every card needs to remind the reader what is “good” and “bad”.
The cards look great, very easy on the eye. I’m thinking that people will put a lot of store on the scoring levels of relapses and disability progression so the stats need to be totally accurate and explained fully to patients.
I've just read through the cards and I think they are brilliant. If these were available many years ago when I was diagnosed this would have been very helpful. Ability to digest information slowly at your own pace is perfect. When large amounts of information can be hugely overwhelming, these cards provide concise scored information in manageable bite-size chunks. Well done!!
Great idea for DMT comparison. Well done Safiya! A few comments:
1. Alemtuzumab card “pregnant people” should be “pregnant women”. Men don’t get pregnant. 2. Natalizumab card line 9 “People taking dimethyl fumarate” should be “People taking natalizumab”. 3. Cost per year information blank. 4. In general it would help clarity if you cite comparison to placebo, rather than comparison to other DMT. 5. Personally as both a person with MS and a retired healthcare professional, I would find an electronic version of this information on my phone most user friendly. Also think cards will just get lost in clinic.
I would like a category Cancer ( as in can you use if you have cancer) just like pregnancy ( can you take if planning to or are pregnant) . Overall a great idea, these then allow people to ask questions. It is women and not people that get pregnant though. Please don't wipe out or devalue my gender by not using the term women, I am not going to get political but you need to check protected characteristics in law
Those cards are a great idea. Newly dx people often feel totally at sea, and being asked which DMD they want is a meaningless question without a clear framework within which to consider the question or at least clarify for clinician and patient what the patient’s priorities are. Helps everyone - great stuff!
I would 100% rather look at these vs the glossy pharma info I was sent home with, where every DMT is "perfect". Re: women/people - "Copaxone is safe for those pregnant or breastfeeding" or "Copaxone is safe while pregnant or breastfeeding" would save characters and confusion.
I also think every NHS appointment should end with the clinician giving the patient a summary on a postcard. This to include main points covered in appointment, including results of tests, which tests results not yet in, findings and next steps.
I work in NHS and am shocked by how many patients don't understand what's happened in their appointment or have forgotten the crucial details by the time they get home.
This is BRILLIANT! I suffer from Brain Fog, so I think these cards will be very useful. I think these cards will reduce anxiety and overwhelm, which can worsen symptoms. This is the best idea I've heard in a long time. I will take some time to read and review the cards and complete the survey. Thank you, Safiya!
Looks excellent but it needs to be painfully clear if 10 is good or bad. This may seem unnecessary to you , but cognitive difficulty can make the most obvious blurred. Putting all the pros and cons together on one card is an excellent idea, but every card needs to remind the reader what is “good” and “bad”.
The cards look great, very easy on the eye. I’m thinking that people will put a lot of store on the scoring levels of relapses and disability progression so the stats need to be totally accurate and explained fully to patients.
Excellent. Best thing I’ve seen so far and much needed.
I've just read through the cards and I think they are brilliant. If these were available many years ago when I was diagnosed this would have been very helpful. Ability to digest information slowly at your own pace is perfect. When large amounts of information can be hugely overwhelming, these cards provide concise scored information in manageable bite-size chunks. Well done!!
Great idea for DMT comparison. Well done Safiya! A few comments:
1. Alemtuzumab card “pregnant people” should be “pregnant women”. Men don’t get pregnant. 2. Natalizumab card line 9 “People taking dimethyl fumarate” should be “People taking natalizumab”. 3. Cost per year information blank. 4. In general it would help clarity if you cite comparison to placebo, rather than comparison to other DMT. 5. Personally as both a person with MS and a retired healthcare professional, I would find an electronic version of this information on my phone most user friendly. Also think cards will just get lost in clinic.
I would like a category Cancer ( as in can you use if you have cancer) just like pregnancy ( can you take if planning to or are pregnant) . Overall a great idea, these then allow people to ask questions. It is women and not people that get pregnant though. Please don't wipe out or devalue my gender by not using the term women, I am not going to get political but you need to check protected characteristics in law
These are brilliant!
Those cards are a great idea. Newly dx people often feel totally at sea, and being asked which DMD they want is a meaningless question without a clear framework within which to consider the question or at least clarify for clinician and patient what the patient’s priorities are. Helps everyone - great stuff!
I think this is a great idea. Thank you for addressing the info overload issue, which is huge!
Thank you, I’m in the process of being offered DMT, should find out what I am being offered in the next week.
I will use these cards along side other information to make my decision.
I will then give feedback.
Thank you again for this info
Good idea but I don't understand the score. Vaccination 10??? What does it mean?
When comparing the ocrevus and kesimpta cards head to head, one may assume that kesimpta is the superior choice. Is that the intention?
I would 100% rather look at these vs the glossy pharma info I was sent home with, where every DMT is "perfect". Re: women/people - "Copaxone is safe for those pregnant or breastfeeding" or "Copaxone is safe while pregnant or breastfeeding" would save characters and confusion.
Yesyesyesyes!!!
Maybe i could have the file so i can translate it into my native language for people that don5 sp3ak English?
The idea of an information card is excellent.
I also think every NHS appointment should end with the clinician giving the patient a summary on a postcard. This to include main points covered in appointment, including results of tests, which tests results not yet in, findings and next steps.
I work in NHS and am shocked by how many patients don't understand what's happened in their appointment or have forgotten the crucial details by the time they get home.
I work in NHS
This is BRILLIANT! I suffer from Brain Fog, so I think these cards will be very useful. I think these cards will reduce anxiety and overwhelm, which can worsen symptoms. This is the best idea I've heard in a long time. I will take some time to read and review the cards and complete the survey. Thank you, Safiya!