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This survey would about early warning signs of multiple sclerosis which I documented as late as 2 years before my diagnosis and early as childhood, I am almost finished with a survey. I spent 10 years as Education Director for Kaiser-…

NOMINATED TOPIC | October 15, 2010
Briefly describe a specific question, or set of related questions, about a health care test or treatment that this program should consider.

This survey would about early warning signs of multiple sclerosis which I documented as late as 2 years before my diagnosis and early as childhood, I am almost finished with a survey. I spent 10 years as Education Director for Kaiser-Permanente in Sacramento and constructed many surveys for physicians. I also worked in health care over 30 years and was diagnosed with MS in 2005. ly

Does your question include a comparison of different health care approaches? (If no, your topic will still be considered.)

no

If yes, explain the specific technologies, devices, drugs, or interventions you would like to see compared:
What patients or group(s) of patients does your question apply to? (Please include specific details such as age range, gender, coexisting diagnoses, and indications for therapy.)

persons with MS, both old and young, male and female, coexisting condition - hyperacusis.

Are there subgroups of patients that your question might apply to? (For example, an ethnic group, stage or severity of a disease.)

women, Africac-Americans

Describe the health-related benefits you are interested in. (For example, improvements in patient symptoms or problems from treatment or diagnosis.)

Earlier diagnosis of this disease could result in reduction or prevetion of physical and mental disabilities.

Describe any health-related risks, side effects, or harms that you are concerned about.

none

Appropriateness for EHC Program

Does your question include a health care drug, intervention, device, or technology available (or likely to be available) in the U.S.?

no

Which priority area(s) and population(s) does this topic apply to? (check all that apply)
EHC Priority Conditions (updated in 2008)
  • Depression and other mental health disorders
  • Functional limitations and disability
AHRQ Priority Populations
  • Minority groups
  • Women
  • Elderly
  • Individuals with special health care needs, including individuals with disabilities or who need chronic care or end-of-life health care
Federal Health Care Program
  • Medicare

Importance

Describe why this topic is important.

MS is one of the two fastest growing diseases in the US and possibly the world.

What specifically motivated you to ask this question? (For example, you are developing a clinical guideline, working with a policy with large uncertainty about the appropriate approach, costly intervention, new research you have read, items in the media you may have seen, a clinical practice dilemma you know of, etc.)

Most of the above and the fact the cost Copaxone, one of the most effective treatments for MS went from $1800 to $3200 in less than 2 years.

Does your question represent uncertainty for clinicians and/or policy-makers? (For example, variations in clinical care, controversy in what constitutes appropriate clinical care, or a policy decision.)

no

If yes, please explain:

Potential Impact

How will an answer to your research question be used or help inform decisions for you or your group?

See above

Describe the timeframe in which an answer to your question is needed.

As soon as possible

Describe any health disparities, inequities, or impact on vulnerable populations your question applies to.

none

Nominator Information

Other Information About You: (optional)
Please choose a description that best describes your role or perspective: (you may select more than one category if appropriate)

See above

Are you making a suggestion as an individual or on behalf of an organization?

Individual

Please tell us how you heard about the Effective Health Care Program

Oregon Health Sciences University

Oregon Health Sciences University MS Center

Project Timeline

Decisional Dilemmas in Discontinuing Prolonged Disease-Modifying Treatment for Multiple Sclerosis

May 29, 2013
Topic Initiated
Dec 17, 2013
Apr 28, 2015
Page last reviewed November 2017
Page originally created October 2010

Internet Citation: This survey would about early warning signs of multiple sclerosis which I documented as late as 2 years before my diagnosis and early as childhood, I am almost finished with a survey. I spent 10 years as Education Director for Kaiser-…. Content last reviewed November 2017. Effective Health Care Program, Agency for Healthcare Research and Quality, Rockville, MD.
https://effectivehealthcare.ahrq.gov/get-involved/nominated-topics/this-survey-would-about-early-warning-signs-of-multiple-sclerosis-which-i-documented-as-late-as-2-years-before-my-diagnosis-and-early-as-childhood-i-am-almost-finished-with-a-survey-i-spent-10-years-as-education-director-for

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