Briefly describe a specific question, or set of related questions, about a health care test or treatment that this program should consider.

For adult patients with Sickle cell Anemia what would the comparative effectiveness be for states to build out patient sickle cell centers of excellence, staffed by experts in the treatment of SCD vs the current system of episodic care these patients get when admitted to hospital via ER? Would the quality improve and costs diminish?

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

yes

If yes, explain the specific technologies, devices, drugs, or interventions you would like to see compared:

Having state funded out patient Sickle Cell centers of Excellence where patients could receive proper care (I'VE hydration, I'VE pain management, exchange blood transfusions ) in addition to regular primary prevention vs episodic care via admission thru the ER with IM residents who are not experts in the management and understanding of needs of these patients.

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.)

Adult patients with Sickle Cell Anemia...primarily Black and Hispanic descent in US.

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

Yes, after age 21 these patients age out of being able to get care from Pediatric Hematologist/Oncologist where they have been getting excellent care.....then dropped into an environment where there are very few Adult Hematologists/Oncologists that will treat them...so they stop getting primary care and therefore present to the ER in crisis mode.

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

Health related benefits Are several fold....patients will be seen on a regular basis to keep them well, avoiding many of the costly complications...in addition, the healthcare system will save money by minimizing hospitalizations since aggressive proper treatment can avoid many more costly treatments later on.

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.?

yes

Which priority area(s) and population(s) does this topic apply to? (check all that apply)

EHC Priority Conditions (updated in 2008)

AHRQ Priority Populations

• Low income groups
• 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

• Medicaid
• Medicare
• State Children's Health Insurance Program (SCHIP)

Importance

Describe why this topic is important.

There is currently a huge disconnect that I've observed as relates to effective treatment for this patient population. There is tremendous opportunity to improve health outcomes for these patients while saving dollars.

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.)

I am a pharmaceutical Rep with 25 years tenure that visits pediatric and adult providers who treat sickle cell patients...as well as hospitals in the Florida market. I have a strong interest in patient advocacy and it's frustrating to hear about so many patients dying due to improper management of their disease....at the same time understanding that there are passionate and focused physicians that would be willing to oversee a project like Adult outpatient sickle cell centers of excellence...if they could get funding.

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.)

yes

If yes, please explain:

Ultimately 'medicaid is paying for the care of these patients...currently in a "reactive" expensive format. If the state invested upfront in developing a pilot program to treat these patients effectively in the outpatient setting...everyone wins, but it would require a change in how healthcare is delivered to these patients.

Potential Impact

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

If I could get some help in putting together. Factual analysis of this project, it would be the information needed to move forward with the appropriate agencies and legislators in gaining support for implementation of a pilot project to create 4 Adult outpatient Sickle Cell Centers of Excellence.

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

I am in the early stages of advocating for this project, but the need is huge, so time is of the essence.

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

Currently there is a large disparity between the healthcare available for children/teens with SCD vs Adults. This directly contributes to increase in mortality for Adults with SCD. By improving patient care the morbidity and mortality and costs would all decrease.

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)

If I could get some help in putting together. Factual analysis of this project, it would be the information needed to move forward with the appropriate agencies and legislators in gaining support for implementation of a pilot project to create 4 Adult outpatient Sickle Cell Centers of Excellence.

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

Individual

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