I just took another survey about patient-centered health care experience. This is really important as I have felt health care does not really connect wiht the challenges of people with MS. The general feeling is that “as a patient you just have to deal with it.”
| Patient Reported Outcomes for Multiple Sclerosis (PROMS) is an initiative jointly led and coordinated by the European Charcot Foundation and the Multiple Sclerosis International Federation, with the Italian MS Society acting as the lead agency. The aim is to create a stronger, more patient-centered approach to healthcare, which will benefit those with MS and potentially other patient populations as well. The PROMS Initiative is asking people with MS to complete a survey that aims to understand what symptoms you experience and which have the greatest impact on your life. |
This is the second study survey I have done that is seeking to understand the patient’s daily challenges. Actually, I believe this survey PROMS asked more relevant questions about MS symptoms. For example, I was asked about hand dexterity problems, tremors, multitasking isssues, problems with coordination and balance, numbness and sensory changes, pain in muscles, nerves, and joints, problems with swallowing, and memory problems. There were many more topics. Yep! Those survey designers had clearly spoken with people with MS because of their topics asked. I appreciated the thoughtfulness of the survey design.
This is very good because I get the sense that some health care agencies are trying to better understand how to work with their MS patients. The survey really wanted to understand how I feel about living with the MS symptoms I experience each day.
MS Fortunate 