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

For patients with Crohn's disease, what treatments or therapies, alone or in conjunction with one another, provide the highest rate of disease management with the lowest risk of long term complications, particularly in young women?

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:

I was diagnosed with Crohn's at age 23 and immediately had a colon resection. I hope to have a long life ahead of me and would like to understand what the best treatment plan is? Particularly, to better understand which treatment options should be used to reduce the risk of further surgeries and complete loss of colon.

remicade vs other biologic infusion therapies, coupled with immuran or other additional therapy to keep inflamation down

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.)

Women, 20-35

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

Someone whose crohn's was deemed "aggressive" upon diagnosis. Surgery upon diagnosis.

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

Avoiding further surgery, higher quality of life for the duration of the disease.

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

I have been told that using Remicade along with Imuran is bad, I have also been told that it's good.

I have been advised that the greatest risks associated with Biologic treatment arise when one goes off that therapy for a period of time, before returning to it.

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)

None

AHRQ Priority Populations

None

Federal Health Care Program

None

Importance

Describe why this topic is important.

Digestive diseases are difficult to evaluate given their internal existence. This topic is important not only for digestive disease but also for arthritics who can not afford the high price tag associated with biologics.

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.)

Various GI docs have lead me in multiple directions highlighting the need for sunlight shed on this issue. There should be more concrete evidence surrounding the disease and available therapies.

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:

No one seems to know what the right thing to do is.

If we are going to see health reform, costs must be addressed and the "best medicines" for my disease are currently unaffordable to a large percentage of the population.

Potential Impact

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

This is a life long illness that is scary to cope with. Any additional evidence will provide peace of mind as well as potential financial relief since the drugs are so costly.

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

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

Women have a higher rate of Crohn's, particularly hispanic women. The idea of prevention in the health system would be further promoted by making available more tools to deal with chronic disease.

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)

This is a life long illness that is scary to cope with. Any additional evidence will provide peace of mind as well as potential financial relief since the drugs are so costly.

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

None